Continually Captivated

What They Don't Tell You When You Call 911

2012-01-19T22:48:00.003-06:00

On Tuesday night May 10th, 2011 I was in my living room watching TV. I had worked for The Doc that day and was tired but couldn't get sleepy enough to try to sleep. So I watched the late news, then an hour of Friends, then a 1/2 hour of How I Met Your Mother (a show, by the way, that I watch despite hating the premise. Just tell us how you met already! Sheesh!). Just as credits were rolling, I heard 2 loud gunshots. Not an unfamiliar sound in our neighborhood. But these were different because there were only 2 and usually what we hear is several, sounding like someone unloading a clip (look at me all street and stuff). They were loud and they were close. I grabbed our phone to call 911 as I strode into a room without lights on to see what I could see. Unfortunately I could not see much because we live on a street with a bend in the road and the house next door has a wooden fence blocking our view. But as I punched in the numbers, I DID see a car backing the wrong way up our one-way street. It was a white, boxy, large sedan. I reported these events to the operator who said he'd send a squad. I stayed up about 10-15 more minutes to see if anything would happen. Nothing did. I never even saw a police car. So I went to bed.

The next morning I awoke to Bob telling me someone a few houses down had been shot and had died. The police had closed off that part of our street and were canvassing the area. Our city councilman was visiting houses and talking to neighbors about the incident. He stopped by our place and we chatted a bit. As the day progressed, we found out more about the man who'd been shot. He had been a counselor at the local high school. The kids there loved and respected him. He was responsible for keeping many of them in school and setting their sights higher than the hood. He was just days or weeks away from earning his police badge as well. Our neighborhood bore a sadness for weeks. There was a vigil. There was a funeral. We brought food to the family but we never knew this man and felt bad for not being more diligent in trying to get to know our neighbors.

A week or two later I was contacted by a Minneapolis detective. He wanted to take my statement about what I had heard and seen the night of May 10th. I told him what I could though it wasn't much. He asked if I'd be willing to accompany him and his partner to the impound lot to see if I could try to point out cars that looked similar to the one I saw driving backwards up our street. I agreed and he told me they would come get me.

They pulled up in an unmarked car that still clearly said POLICE vehicle. Bob, at first, was miffed. He thought they should be driving a marked squad. I asked him if he thought it best for our neighbors to be seeing me get into a marked squad versus the car that actually pulled up. He agreed the unmarked, though clearly a law enforcement vehicle, was probably a better choice.

I got into the car and noticed both detectives wore dress shirts and ties. They were both buff and handsome too. Ahem. Anyway, they drove me to the impound lot which is about a mile from where I live. They drove me around and I pointed out cars that resembled what I thought I remembered. I pointed to one car in particular and said it really resembled the car I saw that night. Turns out it WAS the car I saw that night. (I found this out later.) The detectives drove me home, dropped me off, and thanked me. I thought my part in all of this was done. Civic duty finished.

In the meantime, life went on. And I had a seizure, an angiogram, and an embolization and was restricted from driving. Then I got the subpoena. I called the number on it and spoke to a very nice woman. She said I was a material witness and they would need me for the trial of the man they think shot and killed my neighbor. I told her about my medical issues. She said they could work around them. She told me the dates of the trial. I told her we planned to be in FL visiting my parents at that time. She said no problem, that since the trial dates were right around the holidays, it would most likely get postponed. She said she would keep me informed.

I had another seizure. The day before I was to be able to drive again. Our trip to FL was cancelled. The county attorney called me and asked if I could come down and speak with him. I mentioned the no driving thing. He said they'd send a cab. Okie dokie. I was picked up by a cab and dropped off at our government center. I went through a security check point that would make the airport security line look like kindergarten and then it was up to the county attorney's office. He asked me to tell him what I remembered about May 10th. He played me my 911 call (You do know they record those things, right?). He showed me a transcript of my statement to the detectives. Then he showed me the courtroom. I got to sit in the witnesses chair, see where the judge and clerk would be, see where the jury would sit, and see where the defendant would sit with his attorney. Gulp. Then I was done. A cab was called, I was picked up and taken home again.

The trail was postponed until January. The jury selection started the 2nd week of January. It took all week. I had another angiogram that week. No trial on the 16th since it was MLK, Jr day but I did have a meeting with my seizure specialist. On January 17th I was called to come to the courtroom to give my testimony.

On the morning of the 17th I woke up nervous. I did NOT know what I should wear. I chose a conservative brown dress. Should I wear a hat? My hair is finally growing in but I'm still self conscious. I wore a hat. I also wore make-up and jewelry. My husband Bob took me downtown early so I could eat lunch prior to going to the courthouse. SO glad he did. I ate at an Asian place in the skyway. Then he walked me to the courthouse and while I went through security again, he went exploring through the skyway looking for his own place to eat lunch.

I was to be there by 1. I was early but the trial got a late start so I was told I'd have to wait. And wait I did. Finally, around 3:00 I was taken to just outside the courtroom but down a ways so I could not hear what other witnesses were saying or interact with other witnesses waiting. At about 3:30 I was taken to just outside the courtroom doors and told I was next. I still waited another half hour before being called to the witness stand. My nerves were in a bundle by then.

I walked into the courtroom and while it was the same room they had shown me before, it seemed much bigger now and it was packed full of people. I was directed to the clerk who sat at the right hand of the judge. She asked me to raise my right hand. There was no Bible in which to place my other hand. She asked me if I would swear to tell the whole truth as much as it was possible for me to...hmmm, well I can't remember but there was nothing about God, just swearing to tell the truth. I agreed I would tell the truth and was directed to the witness stand which was to the judge's left. (The judge in this case was a woman, FYI.)

I sat in the chair as instructed. I was asked to give and spell my name. I was asked my age (?!?). I was asked if I wore a hat for recent medical issues and not out of an ill respect for the court. I stated it was for medical reasons. Then we got into my testimony. It took a full 1/2 hour. The county prosecutor started. We established where I lived, what direction our house faced, how many rooms it had, who lived there, what street it was on and near, how long we'd lived there, and the layout of our house's rooms. Then we got into the events of May 10th. I was asked what I'd seen/heard. I answered every question as asked with no extras or embellishments added.

When the prosecution was done, the defense asked his questions. As I answered, I looked at the attorney directly, not the defendant. What little looks I did sneak his way were not met by him at all so I guess that's good. The audience chairs were full on both sides. I had been told the murdered man's family and friends were filling most of those seats but I didn't know anyone. But thinking of him, I answered truthfully and honestly. At one point the defense attorney asked me about something in my statement to the detectives. I remarked that I didn't recall what I said to the detectives. He said it was in my statement. I responded by saying then that must be what I said. He finished his questioning and the prosecution asked to redirect. Permission was granted. He brought my statement to me with an area highlighted. He asked me to read it. Basically it said that I thought something had resembled something else not that it WAS this certain thing as the defense had made it sound. Once that was done the prosecution had no further questions nor did the defense. The judge ended the trial for the day and excused everyone.

I left and was told I did a good job and would be contacted after the trial with the outcome. Whew. Maybe now my civic duty is finally done. What they don't tell you when you call 911 is that you may be called to be a material witness in a trial. Maybe that's just a given for most people but I guess I didn't realize it when I made the call, I just did what good neighbors do. It didn't save my neighbor's life but maybe he and his family will get justice just the same.

Today's Angiogram Update

2012-01-12T19:04:00.003-06:00

I had an angiogram today. My neurologists wanted me to come in 3 months after my September 30th embolization surgery for the angiogram so they could see if the surgery worked.

I got to the hospital a little before 8am, checked in, gave some blood, then went to the prep area. There they had me change into the oh-so-fashionable hospital gown, open backside and all. My clothes went into a plastic bag and I was hooked up to an IV, a blood pressure cuff, 3 electrodes, and a pulse monitor. Then I had to go over all my medications, dosages, and allergies. After that, the doctor came in to talk about what was going to happen and answer any questions.

Dr. Tekle is perhaps my favorite Dr. on my neurology team. He is personable, knowledgeable, friendly, kind, and not at all "god of all things neuro" at all. He told me I would have a medicine that would relax me and then they would create an opening in an artery in my groin, thread a catheter through it, inject some contrast dye, and then use X-ray technology to see what was going on in my head. Then he said, "We did this once before just after your first seizure...you should remember." The funny thing is...I don't. At all. I don't know if they gave me too much "relaxing" medication, if I had a seizure which limits my short term memory, or if they actually put me out for the procedure. So today ended up being the 2nd time I had an angiogram but the 1st time I was awake for it.

Dr. Tekle did tell me that it is important I get a good night's sleep every night and give up drinking any alcohol for the main triggers to my kind of seizures are lack of rest/sleep and alcohol. D'oh! So no more glass of wine at night or happy hour mojito or girls' night gin and tonic. Oh well, better give up wine and mojitoes than end up with another tonic clonic seizure and an ambulance ride to the ER. The sleeping thing is another issue altogether that I will need to discuss with my seizure specialist.

After Dr. Tekle left, I was left with my friend and chauffeur of the day, Pam who sat and talked with me until my nurse came to get me and wheel me to the radiology room. Once there I was moved from the wheely bed to a table under a vast array of X-ray machines and screens. I was re-hooked to an IV and various other monitors. The area they were going to work on was taped, cleaned, and shaved. I was given medicine to relax me but honestly, I didn't really notice any difference.

I had 2 doctors come in to work on me. Dr. Tekle is a resident and Dr. Taylor was the lead, teaching the techniques to Dr. Tekle. They numbed the area and made an opening in the artery in my groin and thread the catheter in. I felt nothing but a slight pinch at the numbing and some pressure after. It was when they started using the contrast dye that I felt all kind of unpleasant sensations. First, I felt a tingling and slight numbness in my lips, cheek, and mouth. Then I felt a tingling and numbness and slight swelling in my tongue. THIS was scary. When I reported this there was some flurry of activity and someone asked, "Is she having a seizure now?" But the Dr's reported it was their activity in checking the blood flow from my brain to other areas in my head and face that was causing the sensations and not external factors. I felt the same sensations when they checked my throat, neck, ears, and eye areas. It wasn't pleasant but once I knew what it was, I could cope.

Each time they injected some dye, they would ask me to take a deep breath in and not move, breathe, or swallow. Then the radiologist would take pictures of the areas they were looking at. Then the doctors would move on to the next area. Once they were done looking around in my head, they took the catheter out and closed the artery using what's called a star closure. Dr. Tekle said I needed to wait in observation for 2 hours to make sure the closure didn't bleed or swell. Dr. Taylor said based on his early opinion, I should talk to my main neurologist Dr. Bergman about going ahead with the gamma radial surgery.

Once I was cleaned up and unhooked from all the IVs and monitors, I was wheeled up to observation and rehooked to more monitors. I met my nurse who said she ordered a lunch tray for me but had water and apple juice ready and waiting for me right then. Bless her! I looked at the clock and it was 20 to 11. My nurse said at noon she would come in and sit me up and make sure the closure site still looked good. At 12:30 she would get me up to see if I could walk and if all looked good from there, I could leave by 1.

My lunch tray came bearing a roast beef and cheese sandwich, a sugar cookie, banana, and milk. It tasted like the best lunch ever. I was very hungry. I also asked for a cola and was presented with a Shasta cola. Yum. My friend Pam came up and we chatted and watched HGTV while my nurse checked me every half hour or so for bleeding or swelling of the closure site.

At 12:00 I was able to sit up and all went well with that so at 12:30 I was asked to stand. My right leg was shaky which concerned me since that was the side of the closure but my nurse assured me it should be OK as the day went on. She walked me to the rest room where I was FINALLY able to use the bathroom. Then she walked me around the observation ward and back to my room where I was given my bag of clothes, a checklist of things to watch out for, and told I could go.

Once I changed I was wheeled down to the front door where my friend Pam picked me up. She drove me home, hugged me and tagged Bob as next in line to see to my care. Bob brought me inside, instructed me to change from my street clothes and get into bed. As I was beginning to feel quite tired, I took his instructions to heart and did what I was told. That led to a lovely 3 hour nap in my own bed with my cats snuggled around me.

All in all it wasn't rocket science but it WAS still a form of brain surgery and I think I did OK considering. While in observation I put a call through to my neurologist's nurse and said she should call me regarding making an appointment with him to go over the images and make a plan for what's next. I do have an appointment with my seizure specialist on Monday to go over how my meds are working. I need to talk to her about my inability to sleep or stay asleep at night and my headaches. Dr. Tekle said there are many medications on the market that can help with all three issues of seizures, headaches, and sleep problems and we can try different ones. I am not thrilled with the idea of being a lab rat for medications but would like some relief. However if the one medication I am on stops the seizures and nothing else, I think that is very important to me.

So I forge ahead on this road I am even surprised to be on at all. Thankfully I have a bunch of people who have traveled this road before me and are able to get me to the next stop on the journey and I have a bunch of others supporting me as I go. Thanks to all of you.

For Once NOT a Seizure Update

2011-12-13T18:05:00.001-06:00

It's been a week and a half since my last seizure. My lip is still slightly numb. However, this post is NOT about my head, my seizures, or anything related to them. For once.

Today is my 44th birthday. Is there some significance to turning 44 in the year 11? Maybe but probably not. I like numbers of order, significance and completion and symmetry but I don't put any stock in them or into their power per se. Still, I like that I am 44. It's a good age to be though it seems old to me. I feel like I should have accomplished more in my life by this time. Not that it's too late to accomplish things. It's too late to accomplish SOME things but not all things and I am thankful for the time I have had and for whatever time I have left.

I broke my toe over the weekend. As if I needed another thing. I walked into a dark room and without turning on the light, walked into our vacuum cleaner. I knew it was broken right away but our trip to the Urgent Care the next morning confirmed it. Thankfully it did not need to be manipulated or re-positioned. The doctor gave me a stability shoe thing that has helped immensely and I've been using Bob's push wheelchair when I need to get around. It's getting better every day.

I am still bummed that we have had to cancel our trip to Florida. I long for warmth and sun and sand and surf. And not to mention time with my parents. I hope to make due with time with extended family and maybe a fun overnight in downtown Minneapolis over New Years. Still, it's a bummer.

On Thursday I am going downtown to give a statement to the county attorney about what I saw/heard in May when our neighbor was shot. The trial has been postponed until late January but I suppose my statement will be part of the evidence against the defendant.

Happy birthday to me. And to my brother who was born on my 2nd birthday. You say it's your birthday? Well, it's our birthday too, yeah.

Seizure Xs 2

2011-12-06T14:53:00.001-06:00

I wasn't feeling so hot on Saturday. Nothing I could specifically point to (other than a splitting headache) and say, "that feels bad" but just a general malaise and feeling poorly. Around 2 or 2:30 I went to my bed, threw back the covers, and crawled inside just to see if a nap would help. That's the last thing I remember until I came to in the back of an ambulance in the emergency bay of HCMC. Deja vu?

Here is what Bob says happened. I laid down, covered up and then made the screeching noise he now associates with my seizures. He looked over to see me thrashing on the bed in convulsions. He called 911 from his cell, gave them our info and noticed I was turning blue. He reached out to turn me and once turned, I began to breathe again. Bob said it took only 2 or 3 minutes for the ambulance to arrive. With it came a fire truck and a police car so I'm sure our neighbors were curious.

Bob says that I seemed to come to in our bedroom but that while I was conscious, I didn't know anyone or recognize my surroundings. I gave an address I haven't lived at for 10 years and didn't know Bob until right before they loaded me into the ambulance. I don't remember any of this. I remember feeling them put an IV in my hand and I remember retching over and over and them handing me an "air" sickness bag just in case.

They rolled me through the hospital into the ER and I was still retching. I was changed into a gown, my vitals were taken, and I was told a Dr. would be right with me. Nothing moves overly quickly in the ER unless life and death are at risk and once my seizure was under control, death was not an option. All told I was there for about 5 or 6 hours and only had blood drawn and a CAT scan before they sent me home. When I came out, I didn't have socks, shoes, or a coat and it was snowing big, fat, fluffy, Christmas snow!

My seizure specialist called me yesterday and said that I need to be taking my anti-seizure medicine religiously. This I knew but didn't practice. So now I have a chart taped up next to my bathroom mirror with check marks next to all my meds so both Bob and I know at a glance if I am up to date on my meds. (And he is taking his job as my meds monitor seriously.) She also told me that by MN law I am now not able to drive until March 4th. Three more months of not driving. Boo. So close.

Ever since the 2nd seizure I've been feeling oddly really run down. I am getting regular headaches. Sharp pain behind my eyes and in my forehead. My bottom lip is numb and feels all Novocained up. I am sleeping about 18 hours a day and when I'm not sleeping, I am just vegging on the couch or in bed. This is difficult for me since I am the queen of getting things done. I am the one used to doing all the stuff. Relying on others to get all the stuff done is VERY difficult for me.

Especially difficult for me was having to cancel our planned Christmas trip to Florida to visit my parents and the ocean. Instead of spending a week on the beach and a week with my folks, we will be staying here. I will miss you Sunshine! I will miss you Mom and Dad!

I have left a message with my neuro-surgeon to see if he wants to move up any of the stuff we had planned to do in January. So far I haven't heard anything from him and my seizure specialist doesn't seem anxious to get started so I might just be on the hook until after the new year.

Other things that are new and exciting at Case de Mingo: Tomorrow I have to give my statement about the events that unfolded in May when our neighbor was shot to death. They are sending a cab to get me and bring me to the Government Center. It should be an interesting meeting for sure. Also, we have a new housemate. Her name is Alyshia. She is a lovely young woman that needed a safe place to stay. Currently she is in our 2nd empty bedroom. We don't see her a lot since she works 8-5 and has been busy doing things after work. However when we do see her, she is very sweet. So now we have 2 housemates, Kenan and Alyshia and we are hoping they are able to stay with us for as long as possible. Max loves them both and he has great taste in humans:-)

So, since our Christmas plans have changed and we are going to be in MN this holiday season, please plan on stopping by to see us. I am hoping to feel up to some baking so if you stop by, you could get lucky and leave with a plate of cookies. Thank you for all your prayers and care these past 3 months. I hope the next 3 go just as fast.

One Year Later

2011-11-12T12:06:00.001-06:00

A year ago today we woke up for the first time in our new house. We had lots of help moving in and I spent the next month or so unpacking, arranging, rearranging, and re-rearranging.

I don't have photos of our actual move in. I was too busy with the actual act of moving that day to take photos. But I DO have photos of folks helping us move a truckload of my parents' furniture. The rest of this entry will just be photos of the past year in and around our house.

A month before we closed on our house, we were unloading a truck of furniture into our garage.

Friends and neighbors helping unload the truck

Even little guys have big muscles

Two days after moving in, this happened.

And it kept happening. We started with snow in November.

Our snowy street

The back of our house after the snow storm.

Four days after we moved in, we brought home Max.

He was so little then!

How you doin'?

The cats find cozy spots to sleep in the new house.

We were visited by Norf Side Santa whose job is to look out for The 'Hood.

Aw, widdle Max with Norf Side Santa

We are visited by festive neighbors caroling.

December blizzard

Max could leap the fence...but doesn't.

Max loves the snow.

A dumpload of snow.

Lots of ice on our roof.

Bob finds a way to stay warm.

Brother's family visits at Christmas

Brother at Christmas

St. Patrick's Day visitor

More snow in April

April Snow

A clean garage

Snow is finally gone!

Bob and his chiminea

Max got BIG

Feast for April open house

Open house guests

Bob's biggest fans

Our house's accessibility allows others in wheelchairs to visit.

The Urban Homeworks folks that made our house possible.

No snow and flowers hanging on the porch.

Spring time in bloom on our porch

Our garden and front porch

Pots of geraniums on stoop.

Bob and Max as they were (are) seen in our neighborhood all the time.

Peace vigil 5 doors down where a man was murdered.

Same vigil

The man who was murdered worked with youth at our local high school.

May storm brings hail which Max finds tasty.

2 daffodils came up from all the bulbs I planted.

Back deck bedecked with potted flowers.

Bob helps with cleaning. This is my office.

May 22nd. Tornado hits our neighborhood but thankfully misses us.

We spend next week or two helping with cleanup, distribution, and whatever else we can find to do.

North Minneapolis loses over 200 trees in the tornado changing the landscape.

Down wires were everywhere. Power was out for 4 or 5 days in some areas.

Beauty for ashes

Neighbors really came together to help each other out

Because of our super wet spring, trees were just uprooted.

We were the Minneapolis drop for our CSA this year.

Boxes of fresh eggs and veggie.

Free annuals given out to beautiful North MPLS homes.

Pretty!

Found this friendly little bunny in our blvd. Kept it for several days before turning her in to pound.

My dad helped me put up a clothesline!

Wet and rainy early summer

Mom, Dad, brother, husband, nephews and I all enjoyed our first juicy lucy at Matt's.

Iconic

Nephew loves our cats

Dad and brother in living room

Older nephew loves our cats too.

Family in our home.

Dad took me, Bob, my G'ma, brother, and nephews to see the Twins play. Bob and I walked the 1 mile to the stadium and back.

Storm passing through sent a tree onto power lines. Power was out nearly 24 hours.

Our housemate had JUST moved in and my friend and her son were visiting. Good timing.

Best friends.We need a kid to tire out our dog.

Jen...our first non-family houseguest

Local high school has an open house.

We attend even though we have no children.

Go polars!

We attend a peace vigil after a rash of young men are killed in the neighborhood.

Our city councilman.

First high school football game of season. Go Polars!

Go POLARS!

GO POLARS!

On September 4th I had a seizure out of the blue while at church. Hospitalized for 4 days.

Max turned 1!

Lowry Ave Harvest Fest

Bob, Edrin, and some clown at Harvest Fest

Neighbors at Harvest Fest

Paint the Pavement neighborhood mural painting

Painting the pavement

Neighborhood mural

Bob in middle of mural

Bob won an award from the MN state committee on disabilities for his water outreach to our neighborhood

We celebrated our 10th wedding anniversary

Us out at Redstone to celebrate 10 years of marriage

The next day I had surgery and spent the night in ICU.

Autumn on our street

Our porch before the squirrels attached our gourds and pumpkins forcing us to get more.

I started losing hair! A condition due to the radiation they used during my surgery.

We were given tickets to see the Vikings. We got to sit on the floor!

They actually won this game.

Bald patch

My way of dealing with the bald patch.

Bald patch still visible but less annoying to me now.

Baldy

Our pumpkin haul from local pumpkin lot.

Doesn't everyone wear an apron when they carve pumpkins?

Our front porch pumpkin-fied.

Ready for Halloween

Max in his costume waiting for Trick-or-treaters.

My costume. I'm a punk girl.

Bob hands out candy to friends.

Bob hands out candy to neighbors.

Bob turns 50. I host an open house to bless him.

Guests/friends/neighbors/family at Bob's open house.

Our housemate Kenan with a not so subtle Max.

I make the unfortunate decision to shave my head with a razor. Gonna stick to the clippers from now on.

I buy a bunch of hats to keep my head warm.

So what's next? We don't know but we are open. Urban Homeworks is almost done rehabbing all the apartments in near area. They bought the empty houses next door and across the street. So we know we will be having new neighbors in the near future. We love the ones we have met and know now and look forward to getting to know whoever moves here in the next year.

We also know that we have a spare room ready to house any guests that may come our way. Some day we'd love to finish the basement which would house at least 1 other guestroom but that will have to wait for a while.

We also know that we are ready, willing, and usually able to serve our neighbors. We have brought meals, been to cookouts, seen people we know at local stores and restaurants, and it seems someone always honks and waves when we're out walking Max. We love our community even while we pray for peace, favor, and positive change to come to North Minneapolis. We will do what we can to see that these things happen.

Once again, stop on by. I may not be as industrious as I was pre-seizure but you will at least get a glass of cold water, a cup of hot coffee, and some sweet treat. Here's to many more years in this home, neighborhood, and community.

1-Year Anniversary

2011-11-10T14:01:00.001-06:00

One year ago today, we were signing the paperwork that officially made us 1st time home buyers. Thanks to Urban Homeworks for making this process the best possible experience. We have survived a whole year and look forward to many more in this lovely house that has become our home.

Bob signing his ~~life away~~ I mean the papers

Chad teasing us with the house keys

Russ and Jon teasing us with housekeys

More hilarity ensues with house keys

Me and Bob finally grab on to our house keys

Walking up ramp to house THAT'S OURS for the 1st time

Bob excited to be a home owner

Gamma Knife Radiosurgery

2011-11-08T17:21:00.000-06:00

People have been assuming I have cancer. I keep having to explain what an AVM is and how it's being treated. I am also being asked questions about the Gamma Knife Radiosurgery that I didn't know how to answer so I started reading up. I kind of wish I'd stayed ignorant about what's to come though. I am going to post what I read here just in case I learn something different from my doctors after the 1st of the year. And keep in mind that this is the most conservative approach to medically addressing an AVM.

The following information comes from here: http://www.columbianeurosurgery.org/conditions/gamma-knife-radiosurgery/

______________________________________________________________

What is Gamma Knife radiosurgery?

Gamma Knife radiosurgery, also called stereotactic radiosurgery, is a very precise form of therapeutic radiology. Even though it is called surgery, a Gamma Knife procedure does not involve actual surgery, nor is the Gamma Knife really a knife at all. It uses beams of highly-focused gamma rays to treat small to medium size lesions, usually in the brain. Many beams of gamma radiation join to focus on the lesion under treatment, providing a very intense dose of radiation without a surgical incision or opening.

Gamma Knife radiosurgery is called “surgery” because a result similar to an actual surgical procedure is created by a one-session radiation therapy treatment. The beams of radiation are very precisely focused to reach the tumor, lesion, or other area being treated with minimal effect on surrounding healthy tissue.

Gamma Knife radiosurgery is most often used to treat tumors and other lesions in the brain. It is also used to treat certain neurological conditions, such as trigeminal neuralgia (a condition in which pressure on the trigeminal nerve causes spasms of extreme facial pain) and acoustic neuroma (a noncancerous tumor in the brain that affects the nerves that control hearing).

Gamma Knife radiosurgery may be used in situations where the brain lesion cannot be reached by conventional surgical techniques. It may also be used in persons whose condition is such that they might not be able to tolerate a surgical procedure, such as craniotomy, to treat their condition.

Because the therapeutic effects of a Gamma Knife procedure occur rather slowly over time, it is not used for persons whose condition requires more immediate therapy.

How does Gamma Knife radiosurgery work?

Radiosurgery works in the same manner as other types of therapeutic radiology: it distorts or destroys the DNA of tumor cells, causing them to be unable to reproduce and grow. The tumor will shrink in size over time. For blood vessel lesions such as an arteriovenous malformation (AVM), the blood vessels eventually close off after treatment.

Gamma Knife treatment generally involves these steps:

head frame placement
In order to keep the head from moving during treatment, a box-shaped frame is attached to the head. Pins designed specifically for this purpose fasten the head frame to the skull. The head frame also is a guide to focus the gamma ray beams to the exact location of the lesion being treated.
tumor or lesion location imaging
Once the head frame is in place, the exact location of the lesion to be treated will be determined using computed tomography (CT scan) or magnetic resonance imaging (MRI).
radiation dose planning
After the CT or MRI scan has been completed, the radiation therapy team will determine the treatment plan. The results of the imaging scan, along with other information, will be used by a medical physicist to determine the best treatment.
radiation treatment
After being positioned for the treatment, a type of helmet with many hundreds of holes in it is placed over the head frame. These holes help to focus the radiation beams on the target. Treatment will last a few minutes up to a few hours, depending on the type and location of the area being treated. Generally, only one treatment session is required for a lesion.

A Gamma Knife procedure involves a treatment team approach. The treatment team generally includes a radiation oncologist (a physician specializing in radiation treatment for cancer), a neurosurgeon and/or a neuroradiologist, a radiation therapist, and a registered nurse. In addition, a medical physicist and a dosimetrist work together to calculate the precise number of exposures and beam placement necessary to obtain the radiation dose that is prescribed by the radiation oncologist. Your treatment team may include other healthcare professionals in addition to or in place of those listed here.
The Gamma Knife system is one of three types of radiosurgery systems. Gamma Knife systems are cobalt 60 systems, which means they use cobalt as a source for gamma rays. During Gamma Knife treatment, the equipment remains stationary (does not move).

Reasons for the Procedure

Gamma Knife radiosurgery may be used to treat certain conditions of the brain in particular instances. Brain conditions that may be treated with a Gamma Knife procedure include, but are not limited to, the following:

brain tumors
brain cancer
arteriovenous malformations, or AVM (a type of blood vessel defect)
trigeminal neuralgia
acoustic neuroma

Gamma Knife radiosurgery has shown some promise for treating conditions such as tremor and rigidity related to Parkinson’s disease, epilepsy, and chronic pain.
There may be other reasons for your physician to recommend Gamma Knife radiosurgery.

Risks of the Procedure

If you are pregnant or suspect that you may be pregnant, you should notify your physician. Radiation exposure during pregnancy may lead to birth defects.

Other risks may include, but are not limited to, the following:

swelling of the brain
headache
nausea
numbness

Some risks and side effects may be related to the location and size of the area being treated by the Gamma Knife procedure. These may include:

hair loss near treated area (generally temporary)
seizures
weakness
loss of balance
vision problems

There may be other risks depending upon your specific medical condition. Be sure to discuss any concerns with your physician prior to the procedure.

Before the Procedure

Your physician will explain the procedure to you and offer you the opportunity to ask any questions that you might have about the procedure.
You will be asked to sign a consent form that gives your permission to do the procedure. Read the form carefully and ask questions if something is not clear.
In addition to a complete medical history, your physician may perform a complete physical examination to ensure you are in good health before undergoing the procedure. You may undergo blood tests or other diagnostic tests.
Notify your physician if you are sensitive to or are allergic to any medications, latex, tape, contrast dyes, iodine, shellfish, or anesthetic agents (local and general).
Notify your physician of all medications (prescription and over-the-counter) and supplements that you are taking.
Notify your physician if you have a history of bleeding disorders or if you are taking any anticoagulant (blood-thinning) medications, aspirin, or other medications that affect blood clotting. It may be necessary for you to stop these medications prior to the procedure.
Notify your physician if you have any type of implant(s), such as a pacemaker and/or implantable defibrillator, artificial heart valve, surgical clips for a brain aneurysm, implanted medications pump, chemotherapy port, nerve stimulators, eye or ear implants, stents, coils, or filters.
If you are pregnant or suspect that you are pregnant, you should notify your physician. Women of child-bearing age may be asked to give a urine specimen for pregnancy testing prior to the procedure.
You will be asked to fast for eight hours before the procedure, generally after midnight.
You may be given a special shampoo to wash your hair with the night before or the morning before the procedure.
You may receive a sedative prior to the procedure to help you relax.
The area around the head frame insertion sites may be shaved.
Based upon your medical condition, your physician may request other specific preparation.

During the Procedure

A Gamma Knife procedure may be performed on an outpatient basis or as part of your stay in a hospital. Procedures may vary depending on your condition and your physician’s practices.

Generally, a Gamma Knife procedure follows this process:

You will be asked to remove any clothing, jewelry, hairpins, dentures, or other objects that may interfere with the procedure, and will be given a gown to wear.
An intravenous (IV) line may be started in the hand or arm in order to give medications and/or fluids during the procedure.
The skin on your head will be cleansed at the locations where the pins for the head frame will be placed.
A local anesthetic will be injected at the head frame pin insertion sites. Once the anesthetic has taken effect, the head frame will be attached to your head with pins that are inserted into your skull.
You may feel some pressure during the placement of the head frame, but this sensation should go away in a few minutes.
After the head frame is attached, you will undergo brain imaging so that the location of the brain tumor or lesion can be precisely identified for planning the treatment. The brain imaging procedure may be a computed tomography (CT) scan, a magnetic resonance imaging (MRI) scan, or a cerebral angiogram.
After the brain imaging has been completed, you will be allowed to rest and relax while the treatment team completes your treatment plan. The images from your imaging procedure will be used by a computer in planning your specialized treatment.
When your treatment plan is ready, you will be taken into the room where the Gamma Knife equipment is located. You will lie down on a sliding table. A special helmet, called a collimator helmet, will be fitted over the head frame. The collimator helmet has 201 holes in it, which allow radiation beams to pass through it into your brain in a very precise pattern that is determined by a computer.
Once the helmet is in place, the table will slide into the Gamma Knife unit. You may hear a clicking sound as the collimator helmet moves into place in the machine.
The treatment team will go into another room when the treatment begins. You will have an intercom available to communicate with the treatment team. They will be able to hear you at all times. You will also be observed with a video monitor.
The number of treatments will depend on your specific situation. The entire treatment session may last from two to four hours, but the length of the session will depend on the treatment plan designed for you.
You will not feel or hear anything from the Gamma Knife unit during the treatment session.
After the treatment session is over, the treatment table will slide out of the Gamma Knife machine. You will be allowed to get up at this time, unless you had an angiogram prior to the Gamma Knife procedure.
The head frame will be removed. The pin insertion sites will be cleaned and a sterile dressing will be applied.

After the Procedure

After the procedure, you will be observed for a period of time. If your brain imaging prior to the Gamma Knife procedure was a cerebral angiogram, you will need to lie still with the affected leg straight for a few hours until the catheter insertion site in the groin is no longer bleeding.

Once you are able to take liquids by mouth, the IV line will be removed. You may take liquids and solid foods as tolerated.

You may feel some discomfort after the procedure, such as a headache or nausea. Let your nurse know if you are uncomfortable, so that you may be given medication and/or other treatment.

The Gamma Knife procedure is generally performed on an outpatient basis, so you most likely will be allowed to go home at the end of the day. You will need to have someone drive you home, however. If necessary, you may be admitted to the hospital for overnight observation.

Once you are home, you may resume your normal diet, medications, and activities, unless your physician instructs you differently. You may be instructed to avoid strenuous activity, such as exercise, for a period of time.

You will most likely be allowed to gently shampoo your hair the day after the procedure. You should not scrub the pin sites on your head, however, until they have completed healed, generally within a week or so.

Call your physician to report any of the following:

severe headache that is not relieved by medication
any weakness, numbness, or vision problems that are new, or have become worse than they were prior to the procedure
continued bleeding or other drainage from the pin sites
seizures

Your physician may give you additional or alternate instructions after the procedure, depending on your particular situation.

___________________________________________________

So what's next? Well, I get through the holidays and a trip we have planned to visit my parents for Christmas. After the 1st of the year, I need to call my seizure specialist and my neurologist. The neurologist will want to schedule another angiogram to see if the surgery I had on Sept. 30th worked. If so, I believe he will want to schedule the Gamma Knife Surgery. So the surgery could be scheduled as soon as the end of January or later the first quarter of the year. I will be keeping my head shaved throughout this whole time since this surgery may (probably will) also cause hair loss.

**ck It.

2011-11-06T20:44:00.002-06:00

I don't think I made it clear in my last post. I LOVED my hair but then I hated my hair...or lack thereof. I got sick of worrying about, trying to cover up the bald spot, finding hand fulls in the shower and on my pillow. So last Sunday I just shaved it off. Now I don't have to worry about it any more. Now I just have to worry about keeping my head covered because it is darn cold without hair.

Rock on!

Still Thinking About Hair

2011-11-06T17:59:00.001-06:00

Even though my first and middle names are Amy Beth, names of 2 characters from the book Little Women, I always related more to the character of Jo. One of the things I most loved about her was that she sacrificed her hair for the good of her family. In the book, she cut off and sold her hair so she could give the money to her mom for a ticket to travel and see their ill father. Jo's hair was considered her one beauty. I always felt my hair was my one beauty and I doubted I'd ever be selfless enough to cut it off for anyone's benefit.

I do have in my possession, 1 perfect pony-tail from when I was a kid. I was perhaps 5 or 6 (maybe 7) when my mom had had enough of my over dramatic whines and wails over brushing my long hair. She took me to get my hair cut and cut it they did. Two snips and my pony-tails were history. Countless snips later and my hair was a perfect 70's pixie cut. Too bad I looked like a boy after that. Even when I wore flowers or pink people would call me a little boy. (Well, it was the 70's after all. No one could be accused of being a harbinger of good taste back then, let alone a small child.)

Anyway, I think my mom kept the single ringlet for a while and then somehow I ended up with it. My childhood hair was lovely. Thick, curly and light brown with auburn highlights. So what if it snarled easily and my brother used my pony-tails as pretend reigns and handlebars? I would give anything for that hair today.

Back then, dealing with my hair was more than any little kid could handle on her own so it fell to my mother to try and tame my tresses. First there was the washing, then the conditioning, then the detangling, then the brushing, drying, and styling. It was quite the Ordeal. I don't blame her for having it all chopped off. If I'd been her, I would have chopped it off much sooner than she did.

I have TONS of memories in relation to my hair from my past. The Dorothy Hamill haircut. The longer version modeled after Toni Tenile. Feathered wings ala Farrah Fawcett. Then came the perms beginning with the one that prompted kids in my class to call me Rosanne Rosanna Danna. Then came the years when I would alternate between growing it out and chopping it off. I like my hair long but when it reaches a certain point, all I do it put it in a pony tail and it seems stupid to leave it long so I chop it off.

At one point in my 20's I grew my hair almost to my waist. It was long. It was lush. It was just lovely. I got TONS of compliments and I reveled in my hair and the attention it brought me. Then one day I'd had it with the brushing and the hair clogging my shower drain so I went and had it cut super short. My mom was surprised and expressed the regret I was not showing. My cavalier response was, "It's hair. It grows back." And so it did.

Now I wonder.

More About Hair

2011-10-27T11:20:00.000-05:00

I hate my hair. I have lost a lot of it but not all of it. And the hair I haven't lost has changed. It used to be thick and wavy/curly-ish and I could pretty much do anything with it and it looked lovely. Now it's thin, whispy, and it doesn't do anything like it used to. I know it light of world events and all the major events going on, my hair is the LEAST of the world's worries and I have worked really hard on adjusting my attitude but this has been REALLY hard on/for me. I think it doesn't help that I've been feeling pretty crappy lately. I am not sure what is wrong but I woke up with a sore throat, aches, and fever yesterday. Last night I had a horrible sweat/fainty/weakness episode and basically just passed out in bed. Today I woke up feeling better though a bit shaky and weak. Gah!

I took some photos of my hair. I am reticent to post them because they are embarrassing but I think I may appreciate it later when my hair has grown back (hopefully). The crappy thing is it's supposed to start growing back in 3 to 6 months...just in time for the next surgery that will use radiation in my head! I am trying a scarf today to see if I feel any better about what's going on above my shoulders today.

In other news, I placed my first order with Coborn's Delivers yesterday. It is due to be delivered today. The prices were comparable to what we pay when we go to Cub but not as inexpensive as when we go to Aldi. Still, for having everything (TP, wine, meat, ice cream, dog treats, etc) we need delivered, it didn't break our budget and I thought we got a pretty good deal. I don't know that we'll use them every week but it sure worked out for us this week.

Handfuls

2011-10-17T14:58:00.000-05:00

So this happened today. As I was getting ready to shower, as I was showering, after my shower, and all day long hair was coming out of my head by the handful. I know it may not look like much in the photo but this was a TON of hair out of my head. I started crying in the shower. I don't remember anyone telling me that any of my procedures or meds had hair loss as a side effect. However, as soon as I was able, I put a call into my nurse line and left what was probably a somewhat hysterical message. She called me back minutes later apologizing profusely. This is what happens when you have more than 1 doctor working on your case I guess. They all assume one of the others covered the risks and side effects.

My nurse said that someone should have told me that hair loss IS a side effect of the procedure I had done on September 30th. Apparently when they do the angiogram, they use radiation to see the images. A risk or side effect of the radiation is hair loss. Would have been good to know that before today. It did me little good when she told me it will grow back in 3 to 6 months. Great. I am glad they DID go over the other risks such as brain damage and stroke and that I am not having to deal with those but I am still upset. And I am surprised about how upset I really am.

Today I also had to go to the hospital's lab in order to give blood. My seizure specialist wanted to get a level check on my meds and they need a blood test for that. So we drove down there and waited for about 1/2 an hour for me to give blood. The funny thing was when they called "Amy", 3 of us stood up. Guess they need to be more specific.

My neuro nurse also said to call her in mid-January to schedule an appointment for another angiogram. This time it will be just to check on if the procedure they did in September worked. I also need to call my neurosurgeon and talk to him about scheduling the gamma radial surgery for the AVM. I imagine that will happen after the first of the year as well. I also imagine that a gamma radiation surgery will result in more hair loss. Boo. I will also be checking in with my seizure specialist in January. So it looks like things are mostly on hold for the next 3 months or so. We will hopefully be able to get through the holidays with little or no trouble and then the fun begins again in 2012.

Thanks for your prayers.

Another Brain Update

2011-10-13T11:54:00.001-05:00

Today I met with my seizure specialist, Dr. Patrick. Well, first I met with her resident, Dr. Amundson. He asked a bunch of questions and examined me. Then Dr. Patrick came in. I like her immensely. She is down to earth, has a wealth of knowledge and experience, and explained things very clearly to me.

I am not sure if I mentioned it but around the middle of September I had an episode where my tongue and gums went numb for about 10 minutes. I called the neurology nurse and she told me to come in if I was concerned but by the time we worked it all out, the numbness was gone. Anyway, Dr. Patrick told me that she suspected I was having another seizure at that time but because of the anti-seizure meds I've been taking it wasn't a full-blown unconscious seizure like before.

On Saturday I will return to the clinic's lab and they will draw my blood in order to check the level of anti-seizure medication in my system. Based on that, Dr. Patrick will know whether or not to increase, decrease or leave the dosage the same. She also added another medication for me to take for the headaches I've been having regularly since the seizure.

Dr. Patrick has lifted all restrictions on me other than not driving. I can travel or do anything else I did before as long as I keep taking my medicine and make my appointments. I have a check up with the neurosurgeons who performed my angioplasty in January and I have another appointment with Dr. Patrick that month too.

The main thing is that no one knows for sure what the effects of the AVM will continue to have on my brain moving forward. If we do the gamma knife surgery (it will most likely be sometime in early 2012), I could still have possible seizures even on anti-seizure medication. So this will most likely be a process that take at the minimum, 2 years and at the maximum, the rest of my life. But I have a team looking out for me and at this point it's just wait and see as we go.

I was given a medical alert bracelet today with the word "seizure" engraved on it. I carry a medical info card in both my wallet and purse outlining my emergency contacts, preferred clinic/hospital, doctor's info, and insurance info. I also carry a card detailing how to care for a person in the midst of a seizure. I will have to carry these things with me as long as a seizure is possible. I was also given a new medication to add to the growing list of things I have to take now. This one for the headaches I've been having since my seizure. It's non-narcotic and will also help with sleeping since it seems my body's gotten somewhat used to the anti-seizure meds and my sleeping is off again. Dr. Patrick didn't seemed surprised I've been having so many headaches. In fact, she said she'd be surprised if I didn't have headaches.

On Sunday Bob and I were given tickets to see the MN Vikings play. The tickets were not accessible so we exchanged them for accessible seating elsewhere. In the exchange, they didn't give us an actual physical ticket for the new location. They just told us to keep our original ticket and then they gave us an arm band. After we were shown to our seats, I told Bob I would go get our food. It was only as I was walking back to our new seats that I realized I only had my cell phone, our original ticket, and the food on me. If I'd had a seizure while separated from Bob, no one would have known about his presence at the game and they would have gone to the seats where our original tickets showed only to find them empty. This realization made it clear that I have to carry more than just my cell phone when I am on my own or separated from Bob.

Another realization I had this week is that I don't necessarily want to be out and about on my own. I don't want to have another seizure in public. I don't want people to look at me differently or be afraid to have me around. I am living in "what if" world. What if I have a seizure? What if I hurt myself? What if something happens to me and no one is around to help/take care of Bob? What if something happens to Bob and no one is around to help/take care of me? What if I am not able to drive for months and months or years?

So I forge on. I move ahead believing that God is not surprised by any of this and has my future (and Bob's) well in hand. I have to live by faith. Faith that what happens will not bring me down but make me stronger. Faith that God's plan is bigger than mine or my fears. Faith that God can make good come out of all of this. Faith that even as I was formed in the womb, God knew my brain was shaped in such a way that 2 "mistakes" were formed that would have little to no affect on me until I was 43 years old and yet when it happened, it was at the best possible time and in the best possible place and no one else was injured as a result.

I think I can trust God to keep me moving forward and to keep me on track health-wise. I KNOW I can trust my husband to help out whenever and where ever he can. He's been amazing during this past month and a half. And I know I have a great team of doctors, family, friends, and prayer warriors behind me doing what they can to make sure things get taken care of too. Thanks to you all.

Post Surgery Observations

2011-10-03T11:28:00.002-05:00

This may not be seemly but since coming home from the hospital I've noticed some things and I wanted to document them in case doctors asked or something happened and I had to recall the specifics. One of the bad side effects of a seizure or brain injury is the inability to remember things at the drop of a hat. Or maybe it's just a side effect of getting old. Either way, my memory is not what it used to be so I thought I'd jot some stuff down just in case I needed it for later.

There are sore spots on the back on my head. As though I bumped it really hard and maybe bruised a couple of areas. I had a nurse look at it before I was released. She said there was redness but nothing out of the ordinary. She said that sometimes laying on the operating table for hours can create sore spots on a head. Maybe that's what happened...dunno.

Both of my inner wrists are severely bruised. The right more so than the left because that's where they had the arterial line. I hate when they put lines in my wrist or hand because they get bumped so frequently and I end up more bruised than I normally would. I am not sure why I am so bruised on the inner left wrist as no line or port was put in there. The tops of both my hands are lightly bruised too as that's where they put the IVs in but nothing like my wrists.

Where they had the foley catheter is still a little sore but not as much as when they first took it out. I am drinking a lot of cranberry juice just to be on the safe side there.

I am having headaches with frequency. They are easily treated with pain medicine but it seems like I have one nearly all the time unless I've taken something. So about every 4 to 8 hours I am taking something to make my headache go away.

The ports where they inserted the catheters into my arteries are healing just fine. I guess they are made of nickel and platinum and will be in me forever. They are teeny tiny and pose no threat to metal detectors or things of that nature which is good considering their location. I still would like to find out why I have 2 instead of just the 1.

My fingernails seemed to grow overnight. I don't think that's a surgery thing but holy moly! I just clipped them prior to surgery and I need to clip them again today. It's as if they gave me super growth hormone medicine while in the hospital.

Finally...and don't read this if you are eating, I had been quite constipated. My nurse called me yesterday to check on me and I told her I hadn't had a bowel movement since Thursday. She said that was normal due to the pain meds and anesthesia but to keep a record and let her know if too many more days passed without one. She said to keep taking plenty of fluids and fiber and nature should take its course. I sent Bob to Cub for some stuff and included juice and Fiber One bars. Overnight the constipation passed (ha!) and all is well.

I have been sleeping a lot. I wake up, check some email, use the bathroom, maybe eat or drink a little something and then it's back to bed and I fall asleep. I guess this is normal but it's pretty constant. Even overnight I would wake up, read a bit, fall back to sleep. Wake up, use the bathroom, drink some juice, fall back to sleep. During the day my awake time is a little longer but I will sleep for 1 to 3 hours at a time. I guess my body needs the sleep to heal.

I used to feel guilty if I wasn't doing something productive all the time. Now I just remind myself that in order to be productive later, I need to rest now. Giving myself grace and permission to just be is the hardest part of all of this. I am so thankful for my husband, our housemate, our church family, and our friends who have made this time so much easier for me. We could not have made it through without all of you.

Now I have to sleep again.

Amy's Brain Surgery Update

2011-10-01T19:28:00.001-05:00

So I haven't had another seizure since my first (and only) on September 4th. But yesterday I had surgery to take care of 1 part of the things plaguing my brain, embolizing the fistula (sounds like a band name!).

I got to the hospital at 7:30. They did preliminary checks, got me in a gown, and then took me to the anesthesia area. While there they placed IVs in my arms and the surgeon came and reminded me that they would be placing a catheter in an artery in my groin and then following that artery to the fistula in my brain. Once there, they would inject a gel-like substance that would expand and cut off the fistula from its blood source. This will then kill off the fistula. Then he reminded me of the risks and then I was put under.

I guess the surgery took about 3 hours. I was catheterized and had a breathing tube. I awoke with the catheter still in me but not the breathing tube. My lips were dry and my throat super sore and scratchy. My mouth was also dry and had a horrible taste to it. I felt like crap. My head hurt, I was groggy, I was hooked up to all kinds of tubes and monitors and every time I tried to fall asleep, an alarm would go off.

The doctor came in and told me that the surgery went well. They were able to completely cut off the fistula and it's now gone. (Not from my head I guess but it poses no threat any more.) He said they want to follow up with another angiogram in 3 months to make sure it's still cut off AND they want to do gamma radiation surgery on the AVM in the next month or so. Yikes!

I was then moved to ICU. I felt tired and queasy. They wanted me to make my breakfast and lunch choices for the coming day. I about hurled. I was brought dinner and rejected it. Instead I ate jello, pudding, and ice cream (and I usually hate jello and pudding). I drank as much water as they would let me and I began to feel better. I had a wonderful nurse who was chatty and friendly and sweet. They took my catheter out and I finally was able to try to stand. I did OK with that so I got to use the bathroom on my own.

My vitals were checked every 2 hours which made for a horrible night's sleep but at least the alarms stopped going off. I was told that my heart rate is REALLY slow when I sleep but since it remains steady and my blood pressure remains normal, they weren't worried. They called me a hibernator. Which is probably also why I'm not much of a morning person:-)

The doctors came and checked me out this morning. I have 2 tiny ports in my groin area, 1 on each side. I still don't know why. I assume they attempted to use the same artery as they used during the last exploratory angiogram and for some reason it didn't work so they went on the other side. I will find out more probably this week. The neuro nurse is going to call me to schedule my next appointments. I also have an appointment with a seizure specialist on the 13th.

For now I am restricted a bit. I am at home, on bedrest and should remain so for the next 3 to 4 days. I am not to lift anything over 10lbs for a week to 10 days. I can eat whatever I want:-) I am tired, my throat is still sore and scratchy, and I get headaches. But I am doing very well. The next surgery will be what they call gamma knife or radiation surgery and I don't think it will be as easy as this one was. I still find it amazing that I essentially had brain surgery yesterday and am home in my own bed today. Wild!

Thank you for your prayers and good thoughts. I am going to be home laying low for the next couple of days but I have a sort of command central set up with my phone and laptop next to my bed so be sure to keep in touch.

Remind Me Again

2011-09-24T00:14:00.000-05:00

Tried to sleep. Used my "alphabetize" trick. It usually works to lull my frenzied thoughts into tiredness and eventually sleep. Not tonight. Maybe it's the 3 hour nap I had to take this afternoon. Maybe it's the new anti-seizure meds still wreaking havoc on my mind and body. At least I don't feel so loopy and forgetful any more. Now I just feel a kind of constant fatigue or malaise. As if I could nap at any time...although apparently not ANY time.

Maybe it's because I can't stop thinking about that other shoe. You know the one. The one that could drop at any time. The one I should NOT be scared of because in all my life whenever it's dropped I/we've been fine for the most part. Yet the one that still seems to be lurking, hiding, stalking me and my thoughts. Inserting itself into my fears and nightmares and tempting me to forget all that God has done and continues to do to care for me/us.

This coming Thursday is the 10 year anniversary of the day Bob and I got married. We talk about how it seems like just yesterday when we got married and yet it seems like we've been together forever. A lot has happened in our 10 years of marriage. We have had our share of good times but we've also faced some scary times together. I remember 6 months after standing in front of our friends and family, reciting our vows, Bob told me that he'd been diagnosed with FSH Muscular Dystrophy and then he lost his job. Our dreams for our future came crashing down around us. He told me I could leave him. He said he wanted better for me and that I hadn't signed up for what we had just found out. With our vows fresh in my memory, I told him I would always stand with him, I'd always be for him and never against him, and he'd have to pry me from his side.

A year later he was in a wheelchair. Another year later and he was in ICU for a week. I believe I almost lost him them but for the miraculous grace of God. A year later I was the one in ICU. I'd had bariatric surgery and ended up with a stricture. My kidneys started failing. I was really sick. I ended up with an intravenous feeding tube in my arm for weeks after my release from the hospital. After that, our health...both of ours...seemed to steady. So I finished my degree and earned a Bachelor of Science in Communications. Then I quit my job so I could stay home and be Bob's PCA after he'd fallen in the shower while I was at work. I never wanted to come home to him on the floor for hours again...or worse.

Through all of this we battled other issues. We tried to start a family. We even tried medical intervention, fostering, and adoption. All were futile for us. We have never been able to resolve our desire to be parents, God's clear command to be fruitful and multiply and our inability to add to our family. We may never know the answers. Yet we trust God. This is not to say I didn't get and stay angry at God for nearly 3 years. I avoided church, the Bible, and anything God or faith related at that time and yet never felt far from Him or His love and care. I do still feel like a failure as a woman sometimes. A woman is supposed to be able to conceive and carry and deliver a baby. If I can't do this, am I much of a woman at all? I think the hardest thing is when woman are glorified for being mothers. Can't I be praised just for being a woman? Do I have to push a baby out of my body or parent a child to be considered of value at all? Just something I am still working through I guess.

Now, out of nowhere we are dealing with this thing in my brain. Something that literally struck me down like lightning and changed everything. I spent 3 nights in the hospital, rode in an ambulance for the first (and Lord I hope only) time in my life and the day after my 10th wedding anniversary I am going to have surgery on my brain...again. Granted it's not real brain surgery where they cut open my head but it's brain surgery nonetheless. And is it any better that it's surgery where they stick something through an artery in my GROIN in order to reach something in my HEAD? I don't think so but what do I know? I am scared. Because I am human and finite and simple...I am scared. This thing has been in my head my whole life and suddenly now at age 43 it decides to interrupt and impede my life. I cannot drive. I am tired all the time. The stupidest tasks wear me out even though I don't want to be worn out. I don't feel any different and yet everything is different. My husband loves me and does everything he can to help me and yet it just makes me feel fragile and incapable and stupid. I was never so glad to hear a doctor say there are no restrictions on my life (other than the driving thing) and yet there are. I can't be the me I was before. And I can only do so much before I have to lie down. And I am not as able to be there for others because I can't even do for myself what I want to get done. I am used to being the caregiver and now, all of a sudden I am the one needing care.

Hmmm. Maybe I've needed care all along. I see God's hand at work in my life and in our married life. I am not blind to a lot of how the timing has worked out in certain areas of our lives. I am not blind to seeing how we have been provided for over and over again. I see the community of believers and our family and friends coming around us when we've needed them the most (and maybe wanted them the least). I see God's kindness and generosity and forgiveness acted out in ways towards us that could only be described as miraculous. He cares for us. He cares for me. I just keep forgetting. I hope He doesn't mind reminding me some more.

Amy's Brain 2.0

2011-09-20T19:42:00.004-05:00

Today was a busy day of meeting with doctors and undergoing tests and talking about the future. (See bottom of this email for the original Brain Update sent out a week or so ago. I am trying to keep up with who is getting the updates and if you haven't been getting them I apologize.)

My first meeting was at 9:15 this morning with neurosurgeon Dr. Bergman. He and his resident agreed that my case is pretty darn interesting and has been the fascinating topic of discussion for low these past 2 weeks. The calcification that was first found on the CT Scan upon my ER visit is evidence of previous bleeding on my brain. It's blood and scar tissue turning to bone in my head. The AVF is on the surface of my head and may have no connection whatsoever to the AVM but it should be taken care of because there is a 10% chance it could rupture or hemorrhage (as in an aneurysm) and because it is symptomatic. So it looks like next Friday, September 30th I will be admitted to HCMC in the morning for another angiogram. This time they will use a general anesthesia and will embolize the fistula (cut off from blood source). I will be in the hospital at least overnight and should be released Saturday, October 1st.

After meeting with Dr. Bergman, I then met with 2 other neurologists Dr Tikle and Dr. Taylor. They talked to me about the AVM. It is located deeper inside my brain on the left frontal lobe which is the language center of the brain. It is thankfully small, seems slow growing, and the blood is slow flowing into and out of the AVM. However, the seizure, headaches, and evidence of bleeding are symptoms that will most likely keep occurring unless the AVM is taken care of. All of my neuros agree that radio surgery (known as cyber knife surgery) bodes well for success in taking care of this issue. Even still I will need to have check ups on the AVM for up to 2 or 3 years and stay on the anti-seizure meds.

After these meetings, I had an EEG. 21 electrodes were attached to my head for nearly an hour while lights were flashed, turned off, and I dozed. My neurologists should have seen the results this afternoon and I should know more by the end of the week or for sure by the procedure next Friday. So far the radio surgery for the AVM has not yet been scheduled. I MAY not even need to have it done if the embolization of the AVF succeeds to the extent the doctors think it might. So it's a lot of wait and see and go with what works. And pray.

I meet with yet another neurologist on October 13th. Dr. Barbara Patrick is a seizure specialist and she will be monitoring my meds and meeting with me to make sure things are going well with the meds, procedures, and plans.

In the meantime I just go about life as I have. The doctors said that other than not driving, I am under no restrictions. I have been living with this for years before it made itself known and I wasn't doing anything like lifting or exercising when the seizure occurred in the first place. This is good news. The not so good news is the medicine I'm on, while not making me feel quite as loopy or forgetful still has side effects that are negatively affecting my day. I get tired out fairly easily and sleep a lot when I'm able. I feel fairly normal for much of the day but then BAM, all of a sudden I am done and unable to do much beyond sit in a chair. I am told this will get better as my body gets used to being on the meds but right now it is no fun at all. However, if that's the worst I have to deal with, I am in pretty good shape.

Thank you for praying. As you can see, I still need some prayer. My doctors are all so very knowledgeable, encouraging, and thankfully, conservative in their approach to how to deal with the crap in my head. I will keep you updated as we move forward in this new season.

10-month House Update

2011-09-19T13:31:00.000-05:00

So it's been forever since I've posted. Here is a 10-month round-up of what has happened since we moved into our house:

November 2010: Moved in on the 11th, first snow on the 14th. Brought our puppy Max home on the 16th.
December 2010: Celebrated our first Christmas in our first home. Was visited by Norf-Side Santa.
January 2011: More snow and bigger puppy. Went to fancy event and realized my dress was bigger.
February 2011: More snow, made my first cakepops, housemate moved in, puppy got even bigger.
March 2011: Had 3 paying photography gigs, more snow, housemate moved out, and we went to puppy kindergarten.
April 2011: Still more snow, CSA Farm visit, Open House for our house, first Easter in the new house.
May 2011: No snow but the beginning of spring/summer yardwork. A murder occurred 4 houses down from us. I heard the shots and saw the getaway vehicle. On the 22nd, a tornado hit our neighborhood but not our house. We spent a week or more volunteering on tornado related duties.
June 2011: I visit my parents in FL and drove back here with them where they spent 4 weeks with us. Celebrated my G'ma's 89th birthday and another church picnic. CSA started! Bought clothesline and started using it. Planted some flowers. It finally got warm in MN.
July 2011: Twins game with my hubby, dad, brother, nephews, and G'ma. Picnics and more picnics.
August 2011: New housemate whom we LOVE! Hosted my college friend and son as our first non-family houseguests. Family camp at Pelican Lake. Peace march/vigil to protest neighborhood murders. Schools started.
September 2011: Max turned 1! We celebrate our 10 year wedding anniversary on the 29th and the fall harvest festivals have begun.

September has also become known as Seizure September. It was 2 weeks ago yesterday that I had a seizure while at church. I am so thankful for all the medical professionals who attend our church and stopped to help me. I don't remember anything about that experience other than waking up in an ambulance. I am told I was seizing and unconscious for nearly 30 minutes. I was brought by ambulance to HCMC ER. Once at the ER, I was taken for a CT scan. The scan showed some calcification on my brain and based on that, I was admitted to the hospital.

While at HCMC I had an MRI which showed that I had a tangle of veins and arteries on the left frontal lobe of my brain (the language center of the brain). This is known as an AVM (http://www.bing.com/health/article/mayo-126786/Brain-AVM-arteriovenous-malformation?q=avm+brain). Based on this information, the neuro team decided to perform a cerebral angiogram (http://www.atlantabrainandspine.com/subject.php?pn=cerebral-angiogram-064) to explore the AVM.

After the angiogram, I was monitored and then released. All told, I was in the hospital Sunday through Wednesday night. I was sent home with a new RX for anti-seizure medication and an appointment to see a neurologist on September 20th.

Last Sunday I received a call from one of the doctors on the neuro team. He said that after reviewing the MRI and angiogram the neuro team has also diagnosed an AV Fistula (http://www.mayoclinic.com/health/arteriovenous-fistula/DS01171) in addition to the AVM. Based on this, they would like to operate again at least 1 more time (Maybe 2). They will perform another angiogram and this time inject a gel or glue-like substance (embolize) in order to cut the AVF off from its blood supply. I will have to be admitted to the hospital again at least overnight. This procedure has yet to be scheduled. Tomorrow I meet with at least 2 neurologists, if not 3 and together we will go over all the test results and will schedule the upcoming procedures.

I have an EEG scheduled for 1:30pm tomorrow as well. This is just done as an outpatient appointment at HCMC and is mostly just done as a base-line for future reference. I also have an appointment scheduled with a seizure specialist on October 13th. She will go over the medicine I've been taking and make sure it is all working as it should.

I have been feeling pretty good. In fact, I was never feeling poorly at all. The meds I'm on to keep me from having seizures have been making me feel loopy. My memory is shot to crap. I have a difficult time remember the simplest of words and will forget what I'm talking about or doing right in the middle of doing it. I also can't drive for 3 months from the onset of any seizure. I am OK to travel as long as I'm not the one behind the wheel of the vehicle I'm traveling in.

All of this has been a bit overwhelming since it came out of nowhere and has produced some huge changes in a short amount of time. I am still getting used to all of the information as well as the restrictions. It's only been 2 weeks since it all went down so there is still a bunch of stuff to learn and get used to.

We have a great group of friends, family, and supporters bringing meals, offering to drive us places, and caring for me and Bob. We are coming up on our 10 year anniversary and we are still learning how to lean on and love each other even as we lean more on and love God. We can never plan for every contingency but we can learn to trust the One who holds us in His hands through it all.

So that's our update so far. I will try and be better about updating especially since I do want to keep track of my medical stuff now going forward.

Gasp! The Bible is Boring.

2011-03-05T15:53:00.000-06:00

I am going to make a confession. I haven't been reading my Bible. I mean I do but not regularly. I used to but then I got out of the habit because I was mad at God for 3 years and didn't want anything to do with Him. But then when I wasn't mad at Him anymore I still wasn't reading the Bible because...well, basically because I didn't want to. However, since the start of the new year, something inside me changed. I've begun longing to know the Word again. I dreaded it on one hand because it's just so long and old and parts of it are boring. (I'm just being honest.) I just sucked it up and started reading.

I did the cheesy, cliche' new years resolution thing and decided to begin January 1st. And I did really well with it. For the month of January. I don't know what happened in February but I did not read it at all on my own in February. Now it's March and I'm back on track. And do you know what I'm finding? That yes, it is still long, old, and parts of it are boring...but it's also alive, vibrant, current, and relevant for today.

For instance, we have a gentleman staying with us. It's been hard. Living in community with others often is hard (remember sharing a bathroom with your brother?). There are misunderstandings. There are things that get said or left unsaid. There are messes that get made and we all just live differently. Bob and I have mostly only lived with each other so bringing in even just 1 person has been a difficult adjustment. We have made mistakes and we have cried out to God in frustration, fear, confusion, and love on behalf of our guest.

Then, the other day I was reading in Numbers. Who would have thought God could speak to me now from something written so long ago? He did. Witness: Numbers 11:11-15 "He (Moses) asked the Lord, 'Why have you brought this trouble on your servant? What have I done to displease you that you put the burden of all these people (or this 1 person) on me? Did I conceive all of them? Did I give them birth? Why do you tell me to carry them in my arms as a nurse carries an infant...? I cannot carry all these people by myself; the burden is too heavy for me. If this is how you are going to treat me, please go ahead and kill me..."

Wow. Moses is kind of a whiner, huh? Um, well so am I. And did you notice how Moses makes it all about him? Way to have compassion on your fellow man there Moses. Yeah, but that's me too. However here is what I take from this...or at least what resonated with me. Moses had a call on his life. He was God's right hand man. He had done some impressive things up to now. He was learning on the job and doing fairly well at keeping all the balls in the air. And yet he was tired, overwhelmed, overworked, and depressed. How many of us can say the same thing? And this man was doing exactly what God called him to do. So what was God's answer to Moses?

Numbers 11:16 & 17 "...Bring me 70 of Israel's elders who are known to you as leaders and officials among the people. Have them come to the tent of meeting that they may stand with you. I will come down and speak with you there and I will take some of the power of the Spirit that is upon you and put it on them. They will share the burden of the people with you so you will not have to carry it alone." God's answer is for others to come along side Moses and share the burden.

So many times I am walking in my calling, doing my thing, following the passion inside me only to feel overwhelmed, tired, and depressed. And instead of calling on God (even just to whine a bit) I turn inward and berate myself. I should be grateful for the opportunity to serve. I am doing what God called me to do so it must be ME that's wrong because God wouldn't make His work...WORK would He? Instead I should cry out to God to send others who walk in the same calling/passion to help carry the burden. Or I should try to reach out to others and ask them to help me. In so doing I may just find out that someone had been looking for an opportunity to serve and use the gifts God gave them too.

It's so easy to think that living in community is easy. Or that after a big God-inspired miraculous event, life is now easy and exactly as it should be. Once the Israelites were free from the bondage of slavery and free from Egypt, their lives definitely weren't any easier. Though it appears they thought life should be.There were still messes and mistakes made. There was still grumbling and arguing and selfishness. Yet God loved them and wanted the best for them and made a way for them (well the 2nd generation of them any way) to get to the Promised Land. That's how it is for us too. We make mistakes. We grumble and complain. We try and take on or do too much ourselves. Yet God still makes a way for us. Because He loves us.

So if me or Bob or our houseguest asks for help one of these days, we pray people come along side of us to help us carry our burdens. Because sometimes they ARE too heavy for us. Not every day, but some days. We are thankful God brought us together and thankful He provided for us all and we look for ways to make it easier on each other. But when it's not...well, we'll try to remember to ask for help.

I'm glad I'm reading my Bible again. Even the boring parts.

LONG Overdue Update

2011-03-04T22:49:00.000-06:00

Hmmm, 4 months since the last post? Anyone still here? I've been a very bad blogger. Long story short, we're in the house. 1 year and 2 months after our very first viewing, we moved in. (Warning, photo heavy post ahead.)

We moved in on Thursday, November 11th; Veteran's Day. It was a lovely day and we had a great deal of help. Thanks to the Quick Silver crew from Urban Homeworks and the kids from Calvin Christian School and some lovely friends, we were out of our apartment and in the new house by 1pm. What a blessing. Then that next Saturday we received our first snowfall so had our first shoveling fiesta of the winter. It was the first, but not the last by any stretch of the imagination. This is in the top 10 snowiest winters in MN history. (And forecasters are predicting a potential for 31 more inches of the cursed white stuff between today and March 19th!) I just say Thank God for the snowblower my Dad gave us when the moved to Florida.

Me and Bob at the closing with Russ and Jon of Urban Homeworks

Living room looking into kitchen

Bob in his office. (1 of 3 bedrooms on the main floor.)

Kitchen and eating area

Standing in eating area looking towards living room and front door

Our bedroom/bathroom/laundry room

More of our bed/bathroom

Our bathroom

Part of our basement. There are 2 more potential bedrooms down here.

Kitchen again

This is my office. Except now I have a recliner where that table is.

My office, the other side. I've had the white desk since I was 6.

The first of one of two upstairs bedrooms making the grand total of possible bedrooms 7!

Bedroom looking down the stairs and hallway. You can see door to U/S bedroom #2

Still 1st bedroom. This is where our houseguest is staying for now

Main floor bathroom and hallway to my office

So we spent November and much of December unpacking, arranging, organizing, and moving in. I was unsure if I would put up Christmas decorations but I did. Still, the holidays are a blur. I remember nearly nothing and feel as if I were in a coma and awoke in January to a new year. Hopefully next year will be better. I definitely try to take one day at a time and live in the moment but I got into a bad habit of living for THE FUTURE while we were waiting for the house.

Puppy finds the fire place vere nice!

The house wasn't the only new thing we took on in November. We also brought home our 10 week old Springer/Lab mix puppy Max. We got him from our CSA and he has been the BEST dog. He's 6 months old this weekend and is smart, friendly, sweet, and fun. He was neutered last week and seems just fine. His training is coming along quite well. He started puppy Kndergarten 3 weeks ago and is doing well there. However, he still likes to jump on people, dig in the trash, chase the cats, and use his mouth inappropriately but he is learning manners and tricks and even ways to be a helper to Bob. He seems to love the learning process and REALLY loves playing fetch or tug of war. Now if only I could get him to stop chewing up my bushes.

Aw, little Max!

Bob and baby Max

The way his ears curl here KILLS me!

Sleepy puppy!

He's still so little in this picture!

When we moved into this house we knew it was more house than just the 2 (6 including pets) of us needed. So we consecrated the house to God and told Him He could put people in the empty rooms. We asked Him to bring us folks in need and He did. 3 weeks ago a man from our church moved in. It's been a learning experience and we are all growing from it. We pray the Lord work all things together for good and when this man leaves some day we pray God will bring us others in need of a peaceful, comfortable home. We will also be housing my parents for a month to two months this summer while they come up from Florida to see family and friends. We will also be taking in a Twins game!

It's been interesting transitioning into a house. This house is most definitely our home. We feel like this is HOME. The shoveling has not been fun but we have met some neighbors through spending so much time outside. We have helped clear their snow and they have helped clear ours. Over Christmas we had carolers and people dropped by with cookies. (In my zombi-fied state I did not get cookies out to anyone like I intended. Boo....bad neighbor. I will do better next year.) There are good and bad things about our neighborhood too. Before, when we lived in the apartment, we lived in the 'burbs where it was mostly quiet save for the occasional siren or coyote. Now we live in the city. There is noise, there is traffic, there is noisy traffic, and there are neighbors. And living 4 blocks from the local police precinct means more sirens. Also, in our part of the city, there are LOTS of empty houses and the problems that come with that. The house right next door to us is empty but a giant pride of feral cats has taken up residence in the garage. It REEKS! If it smells bad now, imagine what the heat of summer will bring. It doesn't help that a local cat lady leaves food there every day for the feral felines. We're hoping the city condemns the garage and tears it down.Gah!

These things are things we can deal with though. What's been the hardest for us to learn to deal with has been the isolation Bob has had to deal with. When we lived in the apartment, the snow was cleared from the walks, roads, and lots pretty quickly and he had access to stores, gas stations, and restaurants within a block. He would go out every day and meet up with folks at the gas station or store. And while I can keep our walks and driveway fairly clear, the same cannot be said for the rest of our block. So Bob is stuck inside and has been nearly all this snowy winter. I do drive him to church and to the therapy pool for swim therapy but getting out 1 or 2 times a week is not the same as getting out every day. And having your wife drive you is not the same as buzzing over there yourself. He is antsy and anxious for summer and I can't say I blame him. He is going to walk our dog's legs to nubs the first sign on spring.

First snow in new house. Oh how naive we were.

Standing on our porch looking across the street. Blue house has barking dog that never stops.

One of the things we were concerned with was the change in the cost of utilities. It has been an adjustment but God provided 2 new part time jobs for me to help keep up with the costs of heating and lighting this house. Urban Homeworks, the organization we bought the house from, hired me to be a part time photographer for their properties and volunteers. I sometimes write short blurbs for their newsletter too. It's been a great gig and I am honored to be part of their staff as well as one of their homeowners. I am also an assistant to a local physician. I book his appointments, take notes, file paperwork, etc. I work about 8 hours a week for him and it's just enough between both jobs to keep me just busy enough. And we can pay our bills! At this point we don't have a lot for extras and we still have sheets for curtains in most of our windows but we are doing well in our house. This house which is now (finally) our home. Come visit if you ever are in town.

Bob helps with shoveling

Snowed in

Yep, snowed in

Back view of house and garage

Christmas puppy sends cheer

How you doin'?

All kitties want for Christmas is for puppy to leave

Puppy likes the fire!

Me and Bob (and Max) at home

House Update - The Countdown Begins

2010-11-01T12:57:00.000-05:00

Since my last update things at the house have been going gangbusters. The paint is on. The main floor flooring is in. The tile is down on floors and in the shower. The countertops are in. The appliances have arrived (though there was a miscommunication somewhere since we wanted black but got white.). The wheelchair ramp and new deck are in. The ceiling lift is in. The basement floor has been cleaned and painted. The doors and lighting are in. Wow.

We've been by the house several times now. We are drawn to it. We can't keep away. It's becoming our home with every new revelation. It's going to be so wonderful for Bob with all the accessibility options going in. He won't have to worry about not being able to get his own meal in the kitchen. He will be able to reach the plates, utensils, glassware. He will be able to reach things in the fridge AND freezer. He will have a sink that he can roll under in order to do his own dishes. He will have flooring that is easy to navigate. He will have an accessible entrance. He will have a bathroom that is fully accessible to him. This? Is freedom.

While all of this has been going on, I've been struggling. I am a planner. I like to have a plan. Give me a date. Give me a location. Show me where to sign. All of this up in the air, date changing stuff is driving me crazy. I can't make a plan because every time I set up a moving date...it changes. So how can I schedule moving help? How can I schedule a rental truck? How can I arrange for utilities to be turned off in one place and turned on in another? Arg!

Through it all, God is NOT surprised and He is good. If we had moved in on October 29th as we were originally scheduled to do, we would have missed out/not qualified for $25,000 in gap funding for our mortgage that we now qualify for. Would you put off moving/closing a few days (or even weeks) to get $25,000 off your mortgage? Yeah, us too.

Meanwhile, I talked to our project manager today and it looks like our closing/moving date is getting pushed back again. We were set for Friday. This Friday. 4 days from today. I arranged for utilities. I am working on getting moving help. I was even looking up truck rental costs for that weekend. We are meeting with a lawyer on Wednesday to go over the closing paperwork. I am packing like crazy. But now the closing date is up in the air. I should know by the end of the day today when the new closing date is and I'm told we should be in for sure by the 15th. Another 2 weeks. Sigh. It's always 2 weeks.

The thing holding us up still is the stair lift to the basement. The lift company ordered it in time but the manufacturer held everything up by not ordering it on their side in time. Then they refused to ship it until they had every needed part. Apparently everything is NOW in at the manufacturer's end and they are saying they are ready to shop by the end of the day tomorrow. It's coming from Pennsylvania so we hope it's here by Friday. Not sure how long it takes to install after that but figure in a couple of days for sure.

So we push everything back. I need to call all the utilities and reschedule. We need to reschedule puppy pick-up. We need to reschedule moving help and truck rental. And we put our lives on hold and live out of boxes for however many extra days this takes. While I understand the delay and the need to push it all back in my head, my heart is frustrated, anxious, and more than a little freaked out.

I think the main thing I am struggling with is the enormity of the actual physical moving. I am the type of person who, given the right circumstances, would just grin and bear the brunt of the move myself. I would load up all of the boxes and whatever furniture I could physically move myself and just move it. But as Bob says, I'm not 25 any more and that may just not be a safe and/or healthy thing for me to do. Still, having a rotating moving date is not making scheduling help any easier. Also complicating matters is how busy the next few weekends are for folks who may want to help. There is a church marriage seminar this weekend. And next weekend there is MUCH more going on including a men's half-day away, MDA Stride and Ride, AND Bob's parents are moving from the country to the city. (Also a concert on Sunday night I desperately wanted to attend but probably can't if that's the weekend we have to move.) Of the two weekends, THIS weekend would have been the lesser of the two evils in attaining moving help. Thankfully, our project manager said they would do what they could to make sure we have help in moving and cleaning whenever it actually takes place. So my anxiety on that has lessened a bit. (A bit.)

Thankfully, things at the house still march on. Carpet is going in today. Appliances were there this weekend but what came in was difference than what was ordered so they are all going back and the right ones should be there by Thursday. New paint is going up in master bath, closet, and guest room and the floors need to get their final coat of sealant. So, there is still much to do prior to us getting in there. And there is probably much I need to learn in terms of relaxing, living in the moment, and getting more time to organize our packing. Anxiety does not help with anything so I need to breathe, relax, pray, and figure out what to do with the extra time we are given to get ready.

One of the things we have done is to find our sweet kitty Maisey a new home. We have been struggling with bringing her with us to the new house because she is so adverse to change. She was our first kitty and we love her but bringing 3 other cats into our home and now all the packing, boxes, and upheaval have stressed her out. Bringing her to the new house AND adding a puppy to the mix might have thrown her over the edge. So we prayed about what to do. We did not feel right bringing out 9+ year old kitty to the Humane Society and didn't know of anyone looking for a good little kitty. Then one day on Facebook a friend outright asked in her status of anyone had a cat she could borrow to address a mice issue. I answered and the short story is Maisey went to her new home yesterday. She will now be the only cat in a 4 person home and she should LOVE being the queen of her new castle. It was hard to let her go, but we stipulated that if there are ANY problems with her adjusting, she should just come back to us. You wouldn't think that in a 4 cat household 1 would be missed, but you would be wrong. Maisey is the tiny cat with the GIANT personality and she is missed.

House Update

2010-10-14T21:59:00.001-05:00

Lots of stuff has been going on with the house. I will start at the beginning.

On Saturdays Bob and I are taking a financial stability class only a few blocks from our new house. We decided to swing by the new house on our way home. As we drove by we noticed several cars parked on the street in front of the house. We drove around back to the alley and saw several volunteers from Trust builders. We parked and got out in order to thank everyone who was working. At the time, they were moving the access door to the garage and were replacing the damaged siding on the house and garage.

As I walked around checking out the work and thanking people, one man asked me if I were Mrs. Mingo. When I acknowledged that I was indeed Mrs. Mingo, the man said he knew my husband. I asked his name and he told me his name was John. I ushered him to Bob and they talked about how they knew each other and what a small world it truly is.

As they talked, I took in the changes made to the house. There were guys finishing the sheet-rocking and ceiling work in the house. The wood floors, put in just a week ago were now protected. Things looked amazing and our excitement was growing.

Flash forward to Monday. As Bob and I were getting in our van to drive to his sister's house, I received a call from one of our representatives at Urban Homeworks. He told me that the wheelchair stair lift had been ordered too late and would then be installed late. The city won't do a final inspection and OK for occupancy until every last thing has been completed. Therefore our closing would have to be moved from October 29th to November 5th...or maybe the 12th. Now I won't lie. This news upset me greatly. But since I was in the car and driving, I could not give full release to my emotions. Poor Bob had to bear the brunt of my frustration. Thankfully we got to his sister's and he was free from my ire. Once I was driving on my own I did begin to cry. I also thought it ironic that I was on my way to another friends' Urban Homeworks open house. I toyed with not going at all but knew I had to. I was glad I did. I had friends there who stood with me in frustration for our own house even as we celebrated our friends beautiful new home.

After a few days of coming to terms with the delay, I am now OK (not happy, mind you) with the delay. All along we have known that this project has been in God's hands and timing. So we trust that He has all the details in hand as well. I still worry about the change allowing us to find moving help and what this means for the people moving in to our apartment after we leave. Still, it's only a week. It will be fine.

Today on my way home from an errand in NOMI, I drove past the house as I always do and saw workers in the yard. I stopped to say hi and saw that they were laying a form for the new sidewalk. They showed me where it was going and how it would flow. It looked amazing. Then Steve, the contractor, let me in to the house to see the completed sheet rock and ceiling work. It was beautiful. While we were in there, Joel, the painter stepped out to say hi. He had already started with the main color, Bagel. I love it. Then Steve said once the concrete was laid and set, he would be tearing down the old deck and replacing it with a new deck and ramp. He said they would most likely be there through the whole rest of the weekend into next week. So far, so good on all the work that has been done.

Later today I received an email from Urban Homeworks asking us to sign an amendment to the purchase agreement we originally signed in March. This amendment basically stated that due to gap funding and accessibility funds we applied for through county and neighborhood programs, the purchase price of our house is $83,000 less than it was originally. This? Is very good news. Cutting our house payment by that much is very budget friendly.

So, we are still 3 weeks away from closing. Our original closing was August 1st. Then October 29th. Now, November 5th. Waiting and delayed gratification are not my strong suits. Still, just knowing that it's right around the corner has me quite excited. I just want to get in there and start nesting, arranging, and making it ours. We hope to have a holiday open house, so look for the invite soon. And no matter what happens, we know God is good. All the time.

Hometown

2010-10-03T20:49:00.000-05:00

Growing up I had a hard time answering the question, "Where are you from?". I knew I was born in a small Southern MN town but don't remember living there. We moved a lot. I usually remember where we lived based on what grades I was in while we were there. We lived in a St. Paul suburb for Kindergarten and the start of 1st grade. We moved to central WI for the end of 1st grade and lived there until I finished 7th grade. Then we moved to the place that I grew to consider my hometown. It is the place I started 8th grade and finished high school. It's where I learned to drive. It's where I had my first real boyfriend, got my first real kiss, and my first real jobs. Either I or some member of my family has lived there ever since 1981. (My brother and his family moved to another town 6 years ago.)

My parents retired last year. They bought a retirement home in a retirement community in Florida. The original plan was to winter in Florida and summer in their house in my hometown. They thought they might do this for 3 years or so. However, after their first winter in Florida, they decided it would be better stewardship and just better all around if they sold their WI house and lived in Florida full time. I wasn't enormously shocked at this news because I knew how much they loved their new home and area and it seemed as though God was moving in all our lives towards that end.

They put their house on the market and I was fortunate enough to get to spend nearly 2 weeks with my folks this summer. During that time I helped my parents sort through some of their belongings and pack up some of the stuff they wanted to take back to Florida with them. I visited with my brother and his family and I was also able to take some time to meander around this little town I considered my hometown.

When we moved there in 1981, there seemed to be nothing there. No McDonald's, only the A&W drive in. No mall, only the quaint downtown area stores that were open late on Thursday nights so people could shop after 5pm. No big box stores, only the hometown hardware, local 5 and dime, and Paminda stores. No large scale grocery stores, only the local IGA, Super Value, and Eagle. Although, like most small WI towns, there were PLENTY of bars and nearly as many churches.

My memories of my hometown are now tinged with the sepia stains of nostalgia and wisdom. I'd like to say I saw what my town for what it was at the time and loved it. But I didn't. I didn't appreciate the smallness, the safety, the surrounding farms and fields. I didn't appreciate that everyone knew everyone else or that you could walk from my house on the North side of town to the downtown area in 20 minutes to half an hour. Or that you could ride your bike all over town safely. Or that the speed limit in the entire town was 25 and there were only 3 stop lights. Or that we had our own town festival every May 17th that featured it's own parade, marathon run, and city dance. In fact, I hated my hometown so much I got out as fast as I could.

It was only 7 years later when I returned and lived there amongst my family once again that I truly learned to appreciate my small, but admittedly growing, hometown. Every street was lined with memories. Every time a store changed hands and signage I could still only see what it had once been and wonder if what it would become would be as successful. I began to see the potential for raising a family in this safe, small town. My brother got married there. He and he wife had their kids there. My family had roots there.

As God would have it, I was not to stay. I moved to the Twin Cities where I have begun to make my home, put down roots, build new memories. Still, I considered my hometown...my hometown. I always dreamed of taking my children there to see their grandparents. Of showing them where I went to high school, the houses we TP'd, the fields where I detassled corn, where my car broke down and we were egged, and where I worked as a camp counselor for 2 summers. I wanted them to taste a donut from Fosdal's bakery, a pizza from the Cinema Cafe, and some lefse and cheese curds from Syttende Mai. I could show them the 5 houses their grandparents lived in. I could show them the stately historic mansions and the Nickel Palace. And I could show them the back way to drive into the big city which might take longer but is so much more scenic than taking the highway. However, Bob and I never had kids. And even if we did now, it wouldn't be the same.

This weekend Bob and I drove to my hometown to pack up the rest of the stuff in my parent's house. As we drove past the big city, I caught myself thinking how it would be nice to go to the farmer's market there the next morning. But then I remembered that there wouldn't be time what with all the packing. So I tried to think of when the next time would be and...I came up empty. There wasn't a next time. There might not BE a next time. And as I drove through neighboring small town I realized my connection to this part of the world is ending this weekend. Then I came over the rise and saw the sight I saw every time I came back to visit, the water tower and the cornfield and I promptly burst into tears, surprising myself and Bob. I cried all the way into the driveway.

The rest of Friday night into Saturday morning was spent remembering, reliving, and trying to hang on. But as we packed up my parents' stuff and closed up the house, I realized that this is a new chapter for all of us. For the first time my brother will not live near his parents. My nephews will not have this set of grandparents nearby. I will no longer live a short drive from them. My brother and I will have to be more intentional about our own relationship now that the glue of our parents' proximity is no longer there to hold us together. Finally, Bob and I are moving into a new phase of our life called home ownership. Thanks to the gift of this furniture from my parents, we will be starting out with fewer empty rooms.

It's all part of God's plan. I see this. The measure of all of this moving about was conducted in too sweet of time to be anything but a melody written by the Maestro. Knowing this makes it easier to move forward though I still find myself a little wistful and catch myself looking back a bit. Still, it's hard not to be excited about what's ahead and what God could possibly be planning. The house He set us in is HUGE. Too big to conceivably be meant for just the 2 of us. We are excited to see what He has in mind for all that space. We have speculated a bit but are intentional about not making plans ahead of what He'd have us do. When we got married 9 years ago, God gave us this verse: "From one man he made every nation of men, that they should inhabit the whole earth; and he determined the times set for them and the exact places where they should live." (emphasis mine) Acts 17:26. We believed it then. We believe it now. Looks like I have a new hometown.

Seems Like Forever!

2010-09-23T12:42:00.000-05:00

If you ever think about praying to God for patience...maybe try thinking of something else to pray for. Or look into building/remodeling a house.

The first time we saw the house was last September. We signed a purchase agreement in either February or March. But thanks be to God, we seem to be on track for the October 29th closing!

We met our contractor and designer at the Urban Homeworks office today. And we got great news! Demolition is done. The reframing is done. The plumbing and electric rerouting is done. The HVAC is done. New sheetrock, mudding, and taping SHOULD be done next weekend. Insulation is going in Wednesday or Friday. New accessible bathtub should be in next week. Ceiling lift brackets going in next week as well.

We got to pick out stuff today! AND they are going to paint our kitchen red and Bob's office blue for us! So our kitchen is going to be Red Tomato. Bob's office and our bedroom will be painted Regal blue. The rest of the house is going to be a nice, neutral Bagel. Our main floor is going to be hickory hard wood. Trim will be white. Cabinets a nice reddish oak. Counters a speckled laminate that combines caramel, black, and eggshell in its design. It goes nicely with the floors, walls, and cabinets. The whole upstairs will be carpeted in Wheat Fields. We need to pick out a mantel for the fireplace but that can wait.

A group from Bethel is coming soon to volunteer and they will be given the task of cleaning out our garage. Bob and I are driving to my former home town to pick up the load of furniture left by my parents when they moved permanently to Florida. We are going to store said furniture in one half of the garage so it will be good to have a clean garage in which to store it. We will be unloading the truck on October 3rd and hopefully moving in permanently on October 30th.

I'm feeling motivated to start packing again!

Anticipation and Frustration

2010-08-08T20:14:00.000-05:00

So our original closing date on the house was August 1st. Our new closing date? October 29th...or worst case, November 15th. Needless to say, I am a bit frustrated with the delays, the changes, and the wait. Actually, at one point, I was pretty good with all the waiting. However, at some point I switched from being anxious about leaving our current home/neighborhood and became anxious about when we would finally get into the new house/neighborhood.

Before summer came, I had visions of beginning packing on or around June 1st with the hope that we could move a little at a time around our closing date. I have yet to pack a box. (Though I admit to JUST beginning to collect them.) I had wanted to have enough stuff for a yard sale prior to the start of August but now, most likely, I will just box the yard sale stuff up and save it for next summer. I do look forward to the fresh start this move will give us in so many ways...purging stuff we don't use/need is going to feel so good.

I had been tentatively planning color scheme and layout for months but this summer, as August 1st approached, I began more aggressively planning color and layout, even taking photos and uploading them to the Sherwin Williams site in order to apply virtual color to the walls and stopping to pick up color samples from their store. I have arranged furniture in my mind over and over. I have landscaped and planned our yard in hundreds of configurations. I have signed up for neighborhood blogs and emails in order to get to know our new home better. And all of this adds to my excitement but it also adds to the frustration of waiting.

Meanwhile this summer has been pretty good to Bob. Though he is declining again in strength, he has been making good use of our apartment building's swimming pool in order to stretch and keep limber. He is tentative about moving into the new house. While he knows it will be built to suit him and his unique needs, he also knows he is moving to an area that is new to him. He will have to find a new hangout, new friends, and new folks to serve. (I have NO doubt he will make his presence known and loved within weeks of our move.) Bob also knows he may not be able to get out and about in winter as easily as he does now. Our apartment maintenance staff is stellar in keeping the walks clear and shoveled and while I will be just as diligent (due in part to inheriting my dad's snowblower) we can't know or dictate how well our neighbors will do to make sure Bob has a clear path all winter.

One of the good things about the wait though is that we were able to apply for a grant/loan through MN Housing that, should we qualify, will take $20,000 off the price of our home. The deadline is Sept but we should find out by August 16th if we are in. Also, starting in September, we are taking a wealth building course offered through the Urban League that COULD also take another $15,000 max off our loan. I'm not yet certain how that works but the information we learn in the course will be invaluable to us even if we end up not qualifying for the grant part.

Urban Homeworks has been awesome through all of this. They have managed the project, contacted the right people, and reassured us that we will ONE day be homeowners. Even if that day is 2 and a half months later than originally thought. They are always positive, always available, and always patient with us. We would NOT have been able to buy a house without them and their amazing organization. That said, I hope my next post has news of a firm closing and photos of remodeling progress.

Another House Update

2010-07-31T21:15:00.000-05:00

We met our Realtor Mike at Urban Homework on Friday. We applied for a grant that would, in effect, take $20,000 off the price of our house and we were to sign the final paperwork so Mike could submit it.

While at UHW we found out that our tentatively scheduled closing date is now October 29th. They are optimistic enough to hope for October 15th but are shooting for the 29th. Our original closing date was to be August 1st...which is tomorrow. Yeah. It pains me to think that it was ever possible to be in the house tomorrow. Oh that it were true.

Demo on the existing house has been completed for the most part. All flooring has been removed as have the kitchen cabinets, bathroom fixtures, and some walls and doorways. Now we are waiting for the City's OK for the work to begin. We hope to know by the end of next week and once we know, work can start. Once work starts, a closing date can be more definitively set.

The other thing we found out is that the earnest money we paid when we signed the purchase agreement will cover our annual insurance premium. We, erroneously as it turns out, thought we had to pay earnest money PLUS the annual insurance premium. So we've been scrimping and saving to pay the nearly $1,000 it will cost for our first year home owner's policy...for no reason! It's just so God that we have nearly half the money saved and now one of our cats needs to see a vet for a UTI. Anyway, it was SUCH a relief to hear that we don't need to save the extra money. It makes for some better breathing room. Not that we are in great need (our God is a nothing if not a faithful provider) but it's nice to have a little extra every now and then.

So we should know more by the end of next week (hopefully). This hasn't been an easy road, but it's been one that has been paved by God and we continue to trust Him as we move forward.

House Update - Summer Session

2010-06-25T18:34:00.000-05:00

We met with our contractor at Urban Homeworks this morning and we left not knowing much more but feeling 100% better.

Urban Homeworks is an organization that is non-profit and receives funds and grants from sources that require a lot of governments OK's. We are still waiting for an OK from the city on the plan that's been put together. Our state has OK'd the modifications but have now submitted them to the budget department. Hope there's no hold up there.

The closing on the construction loan is Thursday. Hopefully demo can start then or on Friday. We were told that once demo and construction actually starts, it should really only take 3 (4 at the most) months to complete. So we are super hopeful that an Oct 1st or 15th close is in the works. We are going to lease our apartment month to month in hopes that we will only be here 3 more months.

We talked about some fun stuff like colors, carpet, cabinets, etc. At this point it's just talk since we're not really ready to put the new stuff in. Still, it's fun to plan that kind of thing. They should us light, medium, and dark cabinets and I liked the dark alot. We were told if dark cabinets go in, our appliances will most likely be black which I favor as well. Also, I requested a semi-gloss paint because Bob uses his hands on the walls alot and leaves lots of dirty marks that are hard to clean up on our currently flat-painted walls. I was told that it could be done! Also, my kitchen desk area seems like it's a go too! Score!

I told our contractor of my hope for a red kitchen. He kept asking about one wall being red and I said that I wanted them all red. He wasn't really getting it so when I got home I emailed him the photos I uploaded from the Sherwin-Williams website. He called me soon after to ask me how I got those photos. I explained that SW had a website where you can upload a photo of a room and then virtually paint it in their colors to see how it looked. He was impressed:-)

Now there is some work involved. I have to submit some financials to our realtor for a grant we may qualify for. We also have to meet with a financial counselor at Lutheran Social Services in order to put together a budget that will pay off most of our debt in the next 3 years. (I know it's necessary and I know we need the help but I am scared of this particular part/meeting.)

So after waiting. And waiting. And more waiting...it seems as though we are poised to finally take off. Oh, I hope so.

House Update - The Long Version

2010-04-30T20:25:00.000-05:00

It's been a while so I thought I'd do an update on the house.

We are still waiting. It seems like we've been waiting a long time. We first saw the house last fall...maybe September? Urban Homeworks (http://urbanhomeworks.com/) got the house from a foreclosure and thought it would be a good fit for us. It seemed to be. The main floor has 3 bedrooms, 2 bathrooms, a kitchen, livingroom, and laundry. The 2nd story is considered a 1/2 story and has 2 bedrooms and 1 bathroom. The basement is unfinished but has 2 egress windows already installed, as well as a bathroom. We waited all winter and now most of the spring. Most of our waiting is due to finances.

So our social worker says the state of Minnesota has funds available to help handicapped folks modify homes to make them accessible. He says all we have to do is submit the modifications and the reasons why we need them and he can approve them and we can move forward.

I submitted an email of modifications including the 2 entrances to the home, an elevator, a completely accessible bathroom (roll-in shower, higher toilet, grab bars, roll-under sink, walk-in tub), modifications to the kitchen (pull down shelves, roll out shelves, roll-under sink, side opening oven), a hoyer lift/track system, and wood floors. I explain why all are necessary. I get an email back approving all except the elevator, wood floor (will only approve vinyl but will pay for vinyl & we can cover the difference), and 1 entrance. I write a rebuttal email explaining why the elevator is necessary. Our social worker writes back that he will bring our request to the committee that approves the modifications and see what they say.

One week later, I get an email back saying the state statute says no because all the primary living space for Bob is already on the main floor. Which...yes but now 2/3 of the house becomes inaccessible to Bob. I really want for him to be able to get into the basement. Not only is our electric/heat/etc stationed down there but we eventually want to finish it AND if severe weather hits, that is where we would need to go for safety. Our social worker understands and tells me that there is money in the grant Bob gets to pay me to be his PCA that might cover some of the cost of an elevator. Over all, there is $10,000 possible. An elevator costs $25,000 and that's BEFORE the cost of the installation.

So it was back to the drawing board. In talking to our Urban Homeworks representative, it becomes clear that the 2nd story may just have to be written off the accessibility chart altogether. Even if we can get Bob up there, the hallway is very narrow and may not accommodate the width of Bob's chair. Some major structural changes would have to be made and in the end, it's probably not worth it. However, we have a possible solution that would get Bob into the basement. A stair lift similar to the one pictured 3rd & 4th from the left here: http://www.arrow-lift.com/residential-elevators-design-gallery.php seems to be an affordable and doable possibility. If we go this route, we won't have to have an elevator shaft built which will also cut down on costs. It will also save the guest bedroom on the main floor that would have been sacrificed to the elevator shaft.

So now we are waiting. Urban Homeworks is waiting to hear from a structural architect on what we need or might be missing. Those plans will be drawn up, bids will be made, changes approved, and THEN work can start. I pray it goes smoothly and quickly. The OK to start work on this project was given months ago so once it's all approved financially through the state, we are good to go.

We are also meeting with an accessibility specialist who can tell us what we might need to know. We kind of know what we need but we don't know what we need. For instance, we knew we needed a hoyer lift/track system but we did not know that we needed to consider what kind of doorways we needed for such a track. We know we need the wheelchair lift for over the basement stairs but we don't know what kind of structural reinforcements we need. This woman/specialist should be able to help us with that.

Bob and I believe that God sets our boundaries and the places where we should live. We think God is putting us in this house. In this neighborhood. In the spirit of that belief, we invited some people over to the house for a little prayer gathering. Only a couple of our church friends showed up along with our UHW Realtor and a representative from City of Lakes Community Land Trust. But that's all we needed. We were able to show our friends around and then gather for a time of prayer and dedication. Not only did we pray for the house, the work, the workers, and the eventual inhabiting, but we prayed for the work UHW would be doing in our very neighborhood in the future. The city has given them 25+ livable units in our area. They will be remodeling the 4-plex across the alley from us and the 3 unit apartment directly across the street from us. We look forward to being neighbors with all kinds of great folks...those already there and those to come.

Interestingly, I am not worried about where the new house is located. Bob tends to be more nervous about the possibility of violence or theft. Until this week I could point out that there is a police precinct 4 blocks away and no really BIG acts of law breaking have occurred there in a long time. But this week a murder occurred in a home 4 blocks from us behind the police precinct. It seems to be some kind of domestic drama but I can't use my former argument on Bob any more. Still, the other day he said God has told him that we are not moving to build walls to keep people out but to open doors to welcome folks in. That's what I like to hear. We will not be naive or unsafe but we will not hide behind our 4 walls and hole up in the house. We will move here to this house, this neighborhood, this world and do our best to fit in and be neighborly.

RESOLVE Conference Brings Surprise

2010-03-13T21:53:00.000-06:00

Today was the 26th annual Midwest region RESOLVE Infertility and Adoption Family Building Conference (http://www.resolve.org/site/PageServer?pagename=mwest_conference_2010_about). It was an all day event that featured speakers, exhibitors, experts, and tons of information on infertility treatments and adoption options. I've known about this conference for 3 or 4 years but this is the first year I've felt physically and emotionally able to attend. I'm so glad I did. Originally Bob was going to attend with me but he wasn't feeling so hot today so I went on my own.

The conference started at 7:30 with breakfast and exhibitors. Then there was a main session for all, then 2 breakout sessions organized by track, lunch, and 2 more break out sessions. We had our pick from several tracks ranging from infertility, adoption, mental health, etc. In years past I would have picked the infertility/IVF track. Having reached age 42 and experienced 3 failed IUIs I believe we are past the childbirth path at this point so I chose the adoption track. I learned a lot about bonding, financing/funding, birth parents, open adoptions, and creating an adoption plan. But the BIG news is that this conference also features tons of prizes and give aways at the end. There is a raffle and each attendee is given 3 raffle tickets. You place your ticket into the box of the prizes you want to win and if drawn...well, you win. Today my ticket was drawn and I won a free adoption application processing fee from Children's Home Society. Normally it costs $500 to just file a new adoption application with them but we can now do so for free. It's good for a year!

Bob and I have always wanted to build a family through adoption. Even when we were first married and thought we would be able to have our own biological children, we also wanted to adopt. Then we were hit by his diagnosis and subsequent health issues and dealt with those. Then we were diagnosed as infertile due to...unknown causes. Three failed IUIs failed to produce a pregnancy and we gave up on medical intervention. We never gave up on adoption but the door never seemed open to us. We would inquire and pursue only to find a block of some kind firmly in place. Until today. Winning a free application processing fee seems like a great open door to adoption.

Bob and I talked tonight about how God seems to be bringing us to a new place...doing a new thing. He's provided us with a big new house that will be handicapped accessible when complete. And now He seems to be encouraging us to pursue our dream of parenthood. Of course, if we've learned nothing else these past 8 1/2 years, it's that things can and do change...including plans and dreams. So we are holding everything loosely and are just moving ahead with caution and optimism. It's amazing how our live together seemed so dark just a few years ago and yet now, everything is so bright and exciting. Praise God.

A House!

2010-03-02T17:14:00.000-06:00

Bob and I signed a purchase agreement on a house today. We paid out earnest money and signed a ton of forms and by the end of summer we are going to be in an accessible home. Our home. The first house we will ever have owned and lived in together. According to the documents we signed, our house payment with insurance and taxes is only going to be $100 more than what we currently pay in rent! It seems unbelievable and apart from God, we truly believe it wouldn't be possible. I hope to chronicle our journey here so that we not only remember all that God has done but so we can show others how good God is.

All of this started last year. I was asked to photograph a City Matters meeting in either January or February of 2009. A representative of Urban Homeworks was speaking at this meeting and shared their vision of making homeownership affordable. For the first time ever, I had an inkling that Bob and I could actually buy a house. Up to now, we had pretty much resigned ourselves to apartment living because finding an affordable accessible house is nearly impossible. I listened to the UHW representative with interest and took his card and info packet at the end of the meeting.

I brought the information back home and told Bob about UHW. I tried to explain how it all worked and how they made buying a home affordable. I guess I didn't do that great of a job because Bob was not impressed. I asked him if we could at least meet with UHW to discuss the possibility of working with them to buy a house. He agreed and Ben and Mike came over in March or April to explain it to us. They did a great job and I was ready to move ahead right away. However, Bob wasn't sold. It took him a couple more months to feel comfortable with the UHW program.

Once Bob felt comfortable, we filled out the application, gathered the necessary paperwork and sent it in. This was probably in June or July. In August, Mike called and said he had a house that had potential. Any house we bought was going to have to have modifications made in order to make it accessible so when UHW was looking at properties to buy, they were looking at the ease in which they could make them accessible. We made an appointment to see the house in September. Bob and I believe that God sets our boundaries so we prayed that if this is where He wanted us to live, He would make it happen. We want to be salt and light no matter where we live and just ask God to be our guide.

We had to bring our portable ramp with us to see the house. We got there before Mike did and were able to get a good look at the yard and outside. The yard was fenced and wasn't too big. There was a 2-car detached garage and not too much walk. (These are important issues since yard maintenance and snow removal will fall to me.) I did notice that there was quite a bit of white rock used in the landscaping and made note that the white rock would have to go. I was also mentally placing landscaping and a garden as we walked the yard. I also noticed the next door neighbor had a fantastic looking yard and garden and hoped they were friendly. As we were walking the property, a neighbor from across the street came over. He seemed friendly but curious and we introduced ourselves. He told us his name and pointed out where he lived. We said we were just waiting for our realtor who was going to show us the house. He said he was glad it wouldn't sit empty for long. Then he waved and got into his car. We liked that he seemed open, friendly, and interested in the going's ons in his neighborhood.

Mike showed up and we went into the house. Bob could only really see the main floor. We were impressed by the large size. I mean really. If you don't count the basement at all, this house currently has 5 bedrooms and 3 full bathrooms. The basement has another full bathroom (that's not to code so it probably won't stay) and 2 rooms with egress windows that could be made into other bedrooms. We liked it right away. It's open and sunny and big enough that Bob can move around and not feel like a caged animal. However, we told Mike that for us to feel right about the house, Bob would have to have access to every level. He agreed and said that was part of the plan. After he got our OK, he said that UHW would put in an offer and he would be in touch.

In October Mike let us know UHW got the house and would put our name on it. Then there was silence for about 3 months. Last month Mike called to say that in order for them to move ahead, we would need to sign a purchase agreement and put down a significant sum as earnest money. This was news to us but we told him we would talk about it and get back to him. The first thing I did was call our tax guy to see if we had money coming back and if so, how much. Turned out it was more than enough to use for the earnest money. I called Mike back and told him when we got our tax return, we'd call him. He said that was good enough but he was going on vacation and wouldn't be back until March 1st so if we got the money after he left, we'd meet in March. Turns out we got the money the same day Mike left for his vacation.

We used the time Mike was away to attend the required home buyer workshop. At this workshop was our social worker's boss. He told us this was a good time to buy and our social worker also knew of some programs that will help us with the needed modifications. Also, there was a lovely gal who sat right next to me and she ended up being UHW's receptionist! She is also buying a house through them and needed the workshop certificate.

We also met with our social worker to go over the services Bob receives. He gave us the low down on how we can help UHW make the modifications needed to the house AND he told us that he's on the committee that signs off on the approvals! So not only does he know his stuff, he will be signing off on anything we submit.

All of this brings us to today. We met with Mike at the UHW office. He went through everything and explained it all to us. He wrote down stuff we asked about including our request that the large tree in the backyard be taken down. He also showed us the flooring/wall color/cabinet options and we picked option 1. He took our earnest money and the rest of our paperwork. We signed and initialed reams of paperwork. Mike also told us that UHW is working with the city of Minneapolis to possibly buy up most, if not all, the empty properties on the block. This was great and comforting news to us since there are a lot of empty properties on our block including a couple of apartment buildings.

What's next? Not sure. We do know the architect is meeting with the UHW folks next week so we should know more after that. We also know that some bids will have to be submitted for the modifications that need to be made. Finally, we know that we will be praying, praying, praying. All along we have gone forward with the attitude that this is not our house. This is God's house and if He wants us to be there, we will be stewards of this house. We want to be faithful stewards and figure with all the extra bedrooms God has a plan of some kind whether it's for foster kids, communal family living, or offering a safe place for people in transition. We don't know but we will continue to hold it all with open hands and hearts and see where God leads us. It's been a wild ride so far.

Reflecting on...

2010-02-22T21:56:00.002-06:00

I was driving to my weekly women's Bible study and instead of turning on the radio and listening to news or oldies, I plugged in my iPod and tuned into some songs that, in the past, had ministered to me. I haven't really gotten back in to the Christian music scene after coming back to God after my 3 year hiatus. The local Christian radio station is still playing the same music they were when I turned them off 3+ years ago and though I AM behind the times in that music scene, I just don't want to listen to what they say I should listen to.

I scrolled through the list of music on my iPod and first listened to "Who is This" by the Insyderz. It's a love song to God and I love everything about it. I love the intimacy of the lyrics, the huskiness of the singer, the melody, and the words. I love the idea of God being the lover of my soul. I love the idea that God is continually drawing me unto Him. Wooing me. Loving me...a woman who feels so unlovable. It opens my mind and heart to the possibility of more.

Who is This - The Insyderz

Who is this that appears

Like the dawn?

Fairer than the moon,

brighter than the sun

You're the Lover of my soul

Draw me unto You

Who is this that beckons me

To come close

Beauty beyond words

surrounds me when You're near

You're the Lover of my soul

Draw me unto You

We will run, we will fly

We will be together

We will laugh, we will cry

We will be together

Who is this that wipes the tears

From my eyes

Just one glimpse of You

steals my heart away

You're the Lover of my soul

Draw me unto You

My drive wasn't long tonight so I just hit repeat and listened to this song all the way to my destination. It was the prefect prelude to a wonderful time of fellowship with other women who long to be with a God who is the Lover of their souls too.

I had forgotten what true fellowship and community was like. In turning my back on God I also turned from His church. His people. His Word. Now that we've found a church and sort of found our place in it, I am finding myself drawn to certain people. Certain groups. Like a need that must be filled. This Bible study is one of those things I am drawn to. It started out as a New Year's resolution and has evolved into a quest. It's a quest to know these women and be known by them. A quest to know their children and families. A quest to be in community and to learn and grow in the midst of others who are also learning and growing. And every week it feels a teeny tiny bit like Heaven on Earth to me.

Every week we share a meal together. Tonight I brought home made mac & cheese. I wanted to bless these women with cheesy, homey goodness and when I took my creation from the oven, I saw that the creaminess had vanished. I was so disheartened. It didn't turn out the way I wanted. And yet when I went to get my dish at the end of the night, every morsel was gone. As is often the case, I bring what I have and these new friends of mine take it right in. They serve me with so much grace and compassion. I am growing to love them and am so thankful I took the step to join their group.

As I drove home tonight I plugged in another song that meant a lot to me in the past. Kim Hill's You Are Still Holy still touches that deep, hurting place inside of me. I listen to this song and can't help but sing along. If you happened to be driving next to me you would see a woman pouring her heart out in song in her car. It's just that kind of song. And yet as I sing, I can't help but also weep. Not great heaving sobs, but the kind of crying that starts in the back of your throat. You try to hold it in, but soon tears are streaming down your face and it only makes you mean the words all the more. I sing it to God. Hoping He hears this love song and knowing that He does and yet He knows the very part of me that IS who I want to be. The part of me that IS lovable. The part of me that could and WOULD dance before Him as a little child dances for her daddy. That is inside of me and He knows it.

You Are Still Holy - Kim Hill

Holy, You are still holy

Even when the darkness surrounds my life

Sovereign, You are still sovereign

Even when confusion has blinded my eyes

Lord, I don't deserve Your kind affection

When my unbelief has kept me from Your touch

I want my life to be a pure reflection

Of Your love

And so I come into Your chamber

And I dance at Your feet, Lord

You are my Saviour

And I'm at Your mercy

All that has been in my life

Up 'til now

It belongs to You

You are still holy

Holy, You are still holy

Even though I don't understand Your ways

Sovereign, You will be sovereign

Even when my circumstances don't change

Lord, I don't deserve your tender patience

When my unbelief has kept me from Your truth

I want my life to be a sweet devotion

To You

And so I come into Your chamber

And I dance at Your feet, Lord

You are my Saviour

And I'm at Your mercy

All that has been in my life

Up 'til now

It belongs to You

I belong to You

And so I come into Your chamber

And I dance at Your feet

You are my Saviour

And I'm at Your mercy

All that has been in my life

Up 'til now

It belongs to You

I belong to You

You are still holy

You are still sovereign

You are still holy, Lord

You are still righteous

You are all-knowing

You are still holy

When I spent those years away from Him...on purpose. I never had a sense that my turning made Him angry or vengeful. Instead, I always felt as if He was still there. Holy, waiting, loving, and good. And when I found myself back to Him, I found myself again...am finding myself again. I may not have all the answers or even know anything. And yet He does. He's all-knowing. My circumstances may not change and yet He is still patient and sovereign. He's got my back. I'm His little girl, saying "Daddy! Daddy! Look at me!" and I dance for Him. I like to imagine Him gathering me up and dancing with me. Putting my feet on His and leading me in a dance. That may not be a very "churchy" image. But it illustrates the intimacy I long for with God. It paints a picture of how I hope He feels about me.

These songs and this group of women are like a healing balm to my still hurting soul. God is so good to give me such abundant love and grace. When it was gone, I didn't notice. Now that it's back, I feel like I won the lottery. It's so good. I'm no longer alone. And I never was.

On The Road, Pt 3

2010-01-28T00:25:00.000-06:00

Before I write about our trip home I want to write about my own little epiphany. It occurred on this trip and I've been pondering it ever since. Some of what I'm about to write will be repeats of things I wrote in parts 1 & 2 but there were parts of the trip that helped me come to this epiphany and should be written down to explain how it happened.

On the Wednesday after Christmas Bob and I went to the beach. We drove on a regular highway instead of taking the faster interstate. Did you know that most of Northern Florida is national forest? The highway we took passed us through the Ocala National Forest. There were trails and camping and lakes and even BEARS! It's true. All along the highway there are signs for bear crossing. Who knew? Had I not been yearning for the sea, I would have stopped at one of the many park entrances to do some exploring since it was all very beautiful. This, however, is NOT my epiphany.

When we got to the beach Bob thought he would be able to drive his wheelchair on the sand because cars and bikes were driving on the sand. He was wrong. This meant that while I could enjoy a lovely day walking along the water, Bob would be left alone and on his own. THIS was part one of my epiphany.

Somehow we made this work when we drove to the boardwalk part of the beach. We were still split up but Bob could at least enjoy the ocean while driving down the boardwalk while I was out exploring the surf and sand. Later, I found a nice bench in the sun facing the surf where I could read a book while Bob sat next to me sunning himself like a lizard on a rock. THIS was part two of my epiphany.

We left the beach and turned the van towards home. Well, actually towards our hotel but that WAS our home for the week. We were hungry but we didn't want to eat fast food and we didn't want to eat at any old chain we could partake of at home. We found the Blackwater Inn sitting on the beautiful St. John's River in Astor. It looked like one of the supper clubs I'd remembered visiting with my folks in the 70's complete with cellophane wrapped breadsticks. Bob and I both ordered the catfish. He ordered the special and I ordered the cajun. I also ordered the authentic Key Lime Pie to go. We sat at a table that directly overlooked the river. The sun set. The moon rose. Boats went by. It was lovely. We ate a leisurely dinner with no thought to the time. The only place we were headed was back to the hotel so why shouldn't we just make time to enjoy our dinner. THIS was part three of my epiphany.

The epiphany was this; Our vacation was more enjoyable (seemingly so) because it was just us. We don't have kids. We don't have kids to worry about. No baby feeding/sleeping/changing schedule to follow. No kids whining for us to buy them stuff at every truck stop and gas station along the way. No cries of "we're bored" or "when are we going to get there?" No stopping at Mickey D's because that's all the kids will eat. No dealing with a lack of sleep because our kids were early risers or bad traveling sleepers. No leaving places early because we had to get the kids to bed. Our whole vacation was OURS to plan as we saw fit even if that meant just rolling with it and doing things on the fly because that's what we wanted to do. We slept when we wanted, we ate what we wanted, we left when we wanted, we took as long or as short a time in certain places just because we wanted to. At the beach I could sit on a bench and read a book while Bob sunned himself because we didn't have kids to entertain. Also, if we'd had kids, they would have had to choose who they wanted to be with because Bob couldn't be on the sand by the waves. If the kids had wanted to play in the sand and surf, I would have had to be with them there while Bob watched from the boardwalk. And how fun would that be?

Finally, Bob's care is getting more demanding. When we travel, he needs his own bed due to his sleeping difficulties. That means any kids would have had to have slept with me or on a roll-away. Also, I realized that Bob's care demands a lot from me. Not as much as it could, but rather than the 2 of us splitting the care of a child/children, I now see realistically it would be me caring for Bob AND the kid(s). That would mean a lot more work for me. We already travel heavy on the equipment without having to add car seats, diaper bags, and all the other stuff kids add to your arsenal of equipment. And I'm the one that packs and hauls it all. Bob would be a great father in that he's present and positive and could be great at entertaining a kid and backing me up but he would not be helpful in actual child wrangling.

So I was kind of floored by all of this but I was actually in a place to mull it over and accept it. Not that there isn't still a sore, hurting place there but it's definitely getting better. Even now that we are home I realize that not having kids can be kind of nice sometimes. SOMETIMES. And all of this isn't to say that should there be a miracle child in our future we won't do our damnedest to make it work somehow. But this trip helped me take another step towards acceptance of the family we are. It's just me, Bob, and our 4 cats (who are NOT our fur babies. They are pets, animals, cats. Granted we love and care for them but we house no illusions about their place in our home and hearts) and on this trip it was just me and Bob.And for this trip, this Christmas holiday, and yes, even for today; that's OK.

On The Road, Pt 2

2010-01-23T22:06:00.003-06:00

We stayed with my parents at their house our first 2 nights in Florida. It was nice being there with them and we enjoyed spending Christmas Eve and Christmas Day there with them. My brother and his family came later and rather than add to the congestion of 6 houseguests, Bob and I had decided to stay in a nearby hotel for a week. It was not fully apparent to me until we moved to the hotel that "nearby" could be a relative term but it was a good decision. We originally were just going to stay in the hotel from Saturday to Saturday and move back to my folks' house after my brother's family left, but we were offered a great deal for 2 extra nights so we just ended up staying there the rest of our visit. Sure it was about 30 miles away but it did give us a place of our own to chill and hang out. Bob liked that he could just stay there if he wasn't feeling well and yet wasn't so far away that I was out of touch if I went to hang with the fam.

While we were visiting, we were a tad disheartened to see the long range weather forecast did not include the warm, sunny weather we were hoping for when we planned our trip. The warmest day ended up being the day we arrived. It was 80 degrees on Christmas Eve and I wore sandals and clam diggers to church that night. It never got above 72 or 73 the rest of the week and the wind certainly added an extra chill to the 60 degree days we were able to enjoy. The best day was the day we all decided to hit the beach. I'd told my folks ahead of time that a visit to the peninsula state was not an option without a visit to an ocean for me. Looking at the weather and discussing our options, we agreed Wednesday would be the best beach day. It was supposed to be sunny and over 70. Bob and I made the trek to Daytona Beach while my brother and his family had decided to hit the Gulf Coast and check out Clearwater or Ft. Lauderdale. Having an empty house, my parents decided to head to Cocoa Beach. Bob and I ALMOST headed to Cocoa Beach because we love their pier so much and my brother and his family did end up there due to a wrong turn on the parkway. It could have been a beach family reunion but it wasn't to be. I so enjoyed my time at the beach. All I really did was take pictures and then sit and read a book to the tune of the crashing waves. I wish I could bring that back to my beloved landlocked MN! The only fly in the ointment is Bob's inability to get on the sand. He enjoyed the Daytona boardwalk but their pier was closed for repairs so he wasn't able to really get out over the water at all. He really wanted to walk on the beach while holding my hand but settled for sunning himself next to me while I read. He's flexible like that. :-)

It was plainly obvious who the tourists were while we enjoyed the beach. The tourists were the folks wearing shorts, T-shirts, and swimsuits. The locals were the ones bundled up in sweats, jackets, and parkas against the wind off the coast. One gal was so incensed she proclaimed the tourists crazy to the friend she was talking to on her cell. Little did she realize that the tourists probably came from states with temps in the -teens and a chilly 70 was a blessing indeed.

On our way back to the hotel, we decided we were hungry but didn't want to eat fast food or at a national chain. We had hoped to find something in Daytona but drove through without finding anything that sounded good. About half-way back to the hotel, we passed a place that looked fun and were rewarded with a lovely view, great food, and a fun atmosphere. The Blackwater Inn in Astor was a great place to stop and eat. It sits right on the river and offers a view of the river next to the drawbridge. The atmosphere is similar to the supperclubs of the 70's with the prepackaged breadsticks and salad bar featuring several lovely noodle and veggie salads. Bob and I both had the catfish. He chose the regular and I chose the cajun and we both thought it delicious. Boats pulled up to the dock while we ate and the dining room filled with folks looking for good food done right and they found it at the Blackwater Inn.

The rest of the week went quickly. My folks showed us around their new home and their new town. We were able to play pickleball, shuffleboard, and swim in the local pool. We enjoyed live music and a movie. My brother and his boys went golfing with my dad and saw 2 alligators on the green. We were able to see what my parents saw when they chose this place in which to retire. Bob and I both wished we lived there now even though we knew no one under 55 could purchase a home there. It was truly very hard to leave and if the weather had cooperated, we may still be there but cooler temps and declining funds pushed us home.

On the way back, we decided to go a different route home. Since Bob hasn't seen much outside the Midwest we decided to go home via the gulf coast. That's a story for Pt. 3.

On The Road, Pt 1

2010-01-22T00:16:00.000-06:00

We drove to Florida for the Christmas/New Year holiday. Actually, I drove. I drove 3 days down and all but the last 200 miles back. We left on December 22nd early in the morning and drove to Chicago. Bob had never been and part of this trip was about giving Bob some good traveling memories. Plus I scored a really good online deal at the Hyatt!

We drove through some sleet and freezing rain so I was glad to find our hotel before 1 that afternoon. That also meant we had time to check out our room and do a little Chicago exploring. Too bad the weather wasn't cooperative. It was cold and true to its nickname, Chicago was the windy city making the cold much worse. So all we really explored was the river across the street and the CVS around the corner. While at CVS, I scored a cute hat that matched my coat and covered my ears so it wasn't a total loss. We spent the rest of the evening finding a place to eat dinner and vegging out in our room. We were in bed and asleep quite early due to my preference to drive early and during daylight hours (I don't mind driving in the dark as long as I know it will soon be light.).

We left our hotel by 5am. Our valet gave me insider directions out of town that for once agreed with our GPS. We drove into Indiana and some more sleety weather as the sun rose. However, as we traveled south, the rain/sleet stopped and the temps rose. We drove through Indiana and Kentucky and into Tennessee. We stopped in Nashville for lunch and it was a relief to me as the traffic there was INSANE! Not just busy but people driving crazily. Of course after lunch we had to get back into the fray and drive on. We drove into the Smokey Mountains and I about had a panic attack. I was relieved to reach our next stopping point in Chattanooga. What a beautiful city! We stopped at the first place we saw with a AAA discount and got a good deal at Country Inns & Suites. However, it was here that I learned we had to specify a NON-Smoking handicapped accessible room. I also learned a hotel advertised as family friendly means you will hear kids screeching up and down the hall. Thankfully that didn't last long but we were in bed early again due to our driving schedule.

The next day we didn't have to drive through any kind of weather other than sun and, as we drove further south, warmth. We left Tennessee and entered Georgia and were to Atlanta just after sunrise. Atlanta was certainly a shiny city. I was worried about the traffic we'd incur but I needn't have worried. We were in and out in record time. However, Georgia was a long state to drive through. Our GPS didn't offer me any information as to when we would FINALLY enter Florida so when we got to Valdosta, GA, I had to stop and see how much further to the border. Turns out Valdosta is about the last city in Georgia before you hit the Florida border. I happened to notice that many of the states we drove through had signs announcing the mileage to upcoming cities, but none of them outside their own state. That was frustrating to me as a driver but I bought an atlas and got over it.

Something else I learned driving to Florida is that every "oldies" station now plays music that was popular when I was in high school. However, when I was in high school, "oldies" stations played music that was popular when my parents were in high school. At the time, that music did seem old. Now adays "oldies" music does NOT seem old. Also, all of these stations call themselves either The Rock, The Fox, The River, or The Eagle. Does calling themselves something "earthy" sounding make them cooler or just trying to hard? It just makes me picture the graying, balding guy in the hot Ferrari. Sigh.

Once we entered Florida we stopped a couple of times to get gas and ogle roadside tourist traps and their citrus. The further south we went, the warmer it got. It was nearly 80 by the time we reached my mom and dad's house in Central FL. Our car was filthy and covered with 3 days worth of salt, dirt, dust, and grime and we were so glad to have reached our destination.

As we traveled south towards my parents' retirement home in sunny Florida, I kept thinking about how Bob and I have been spending the Christmas holiday these past few years. Our families celebrate the holiday on days other than the actual day because they all want to celebrate the actual day with their own families. Since we don't have kids, we've been taking Christmas Eve and Christmas Day and traveling. Three years ago we got a hotel room in downtown Minneapolis for the holiday. It was nice because we saw the last night of the Hollidazzle parade, toured the Macy's Christmas displays, and just experienced our downtown area at Christmas. Two years ago we spent the holiday at our favorite casino hotel. Bob played Texas Hold'em while I went bowling and used the pool. This year, we were driving to spend the holiday with my parents. It was nice to actually be with family again on the holiday. (Not that Bob isn't my family but we agree that Christmas seems kinda made for children and extended family.)

Mingo Messenger 2009 Annual Christmas Letter

2009-12-01T01:39:00.002-06:00

Greetings from the Mingos! I cannot believe it’s almost 2010. It’s true when they say the older you get, the faster time flies.

2008 Recap: Bob wrote a book called Poetry for the Soul. I quit my job at Wells Fargo to stay home and look after Bob. We found a new church. I took photography classes at the local technical college.

Bob and I agree that the theme for 2009 could be faithfulness, specifically God’s faithfulness towards us.

One of the big things to happen to us this year is to finally have found a church we can call home. After 2 or 3 years of not really attending any church, we found the church in which we know God wants us to serve. The Sanctuary (http://www.sanctuarycov.org/) is in North Minneapolis and seeks to change the face of the church, by reconciling the people of the city to God and one another. We have met some amazing people and continue to get to know others each week. We are finding our place as Bob is trying to start a men’s group, we usher 2ce a month, we host a monthly family meal group, I take pictures at various events (a lot of my photos grace the church website!), and we are taking steps to become members of this unique and amazing body.

In February I started a new career as Personal Care Attendant for Bob. We are thankful that our state hosts a grant program that allows people with permanent disabilities to pay their family members to be their PCAs. Bob qualified for that grant and now he is the boss of me! Bob’s Muscular Dystrophy has progressed to a point where he now needs assistance with some activities of daily living and I am able to provide that assistance. He spends more time in his wheelchair now than ever before, yet his attitude and demeanor never waivers. He is consistently positive and seeks to serve and bless others with his humor, poetry, and kindness. We are blessed to see God’s faithfulness in the way He provides for us through this grant and in other surprising ways.

Bob continues to support our local Muscular Dystrophy Association by volunteering at as many fundraisers and events as he can. (I help out by taking pictures at as many events as I can.) Bob was surprised to be nominated and win the MDA’s Robert Ross Personal Achievement Award both locally for the Twin Cities and for the State of MN. Initiated in 1992, this national awards program recognizes the accomplishments and community service of adults with disabilities caused by any of the diseases in MDA’s program. Bob received a lovely framed award and was recognized on our local MDA telethon.

Bob and I continue to be surprised at what God has in store for us. At this time it seems as though He has home ownership in North MPLS in store! We are working with an organization called Urban Homeworks (http://urbanhomeworks.com/) though their Project Reclaim which is a homeownership tool to equip and support households to successfully own quality, revitalized homes. Right now they have a house for us but it will need to be remade into an accessible property. This is a work in progress and we are continuing to trust God as we walk this path. After all, we believe this verse in Acts is correct when it says, “²⁶From one man he made every nation of men that they should inhabit the whole earth; and he determined the times set for them and the exact places where they should live. Acts 17:26”. We will be excited to see what 2010 brings in this endeavor.

Finally, we ask for your prayers even as I assure you that we pray for you. At 42 and 48 we feel parenthood may be out of reach yet we both still hold dear this dream. Please pray that God would open the doors to loving on a child or children; however that may look or come about. Please pray for the continual and total healing of Bob’s body from pain and Muscular Dystrophy. Please pray for God to continue to be as faithful to us as He has been these past 8 years of our married life (and every year prior). Please pray that we would continue to be obedient to Him and continue to follow His plan for us. We just cannot believe how loved and cared for we are. He has just been so faithful to see us through our trials and difficult times and we have come to a point where His faithfulness has overcome our fear of the future. Our prayer for you is that you would know that LOVE. That it would be revealed and real to you especially this Christmas season.

Please write to us. We would love to know how you are doing and what amazing things have been going on this past year in your lives and the lives of your loved ones. Colossians 1:3 ³We always thank God, the Father of our Lord Jesus Christ, when we pray for you.

Planning a Trip

2009-11-24T20:23:00.000-06:00

So, it seems like a lot is going on and yet nothing is happening.

First thing on my mind. About 2 weeks ago I had helped Bob get into bed and had settled myself in to watch my favorite show, Glee when the phone rang. It was our new homeless friend HisName. We had given him our phone number because he had said his mom was elderly and he was afraid he would not get to say goodbye to her should she die and he not be able to get to her in time. We said he could call us and we would take him to her should that problem ever arise. However, this night he was not calling for us to take him to his mom. He was calling because he needed money and some food. He wanted me to meet him and bring him some money and food. He said he had a place to stay but they charge him $10/night and he didn't have the money for that night and he owed them for the prior night. I did not know what to do so I went and woke up Bob.

Bob was very disoriented but managed to get the phone and talk to HisName. Before he could devise a plan, either HisName hung up or the connection was broken somehow. Bob got up, got dressed, and told me to make HisName something to eat. While I made up as good a sack lunch as I could, Bob got some cash together. Then we drove to HisName's regular corner. On the way Bob said at first he was irritated and thought HisName was kind of scamming us but then he said that by not helping HisName when he called we were living a lie. When we brought him to our house for dinner and told him he was welcome and we considered him a brother and friend, we would be lying if we refused to help him now.

We found HisName on his corner. We told him to get in the van and he did. I gave him his sack lunch and Bob gave him the money. HisName said he could pay us back the next day. We told him no, we did not expect him to pay us back. He kept insisting and we agreed that if he HAD the money, he could pay us back on Sunday when he was invited to come over for dinner and cribbage. He agreed, thanked us, and told me where to drop him off. After we dropped him off we drove home in relative quiet. When we got home Bob said even though it was a pain in the butt to get up and get out in the dark and cold, it still seemed like it wasn't enough. As we talked about it we discussed how we could further help him. We're kind of at an impasse until we move into a house but we were still willing to help when he called, bring him home for meals, and offer our shower/clothes as needed. As it turns out, we haven't seen HisName since that night. He wasn't at church the next Sunday nor was he at his usual corner. We weren't at church this past Sunday so we don't know if he was there or not. He hasn't called us and we have no way of getting a hold of him. In the meantime we just pray for HisName and hope he's doing OK.

It's not just HisName that Bob and I want to help. We bought some awesome coats on sale for our church's Coats for Kids drive and we are looking for ways to help others in need...especially this holiday season. One project I came across is Help-Portrait (Help-Portrait.com). This project brings all different photographers together on December 12th with a local service resource in order to take single/family portraits of people who might otherwise not have the opportunity to get pictures taken. Our local group is taking pictures at Harbor Lights (Salvation Army) and I am looking forward to the whole day.

Our own holiday is going to be spent with my folks at their new place in Florida. We got our niece to stay at our place with the kitties and we are driving to the Sunshine state. We are taking 2 nights/3days to get there instead of barreling through in one long drive. Bob has never been anywhere and it will be good for him to see the sights along the way. The first night we're staying in Chicago. I found a couple of downtown hotels with awesome overnight rates but their overnight parking fee just about choked me. Still, I figure it's worth it for the experience and for Bob's first time in the windy city. Our 2nd night is going to be spent in Chattanooga, TN. The hotel we found is MUCH more reasonable and we hope to get there in time to enjoy a trip to Lookout Mountain. The next day we hope to make it to my folks' by nightfall. Should be a nice time of family, fun, and FLORIDA! We're not sure about the route home though. We may go West through the panhandle and up through Memphis and St. Louis. We're just going to wing it.

Even though we are going to do this Christmas in Florida thing, we are going with hearts at the ready. As we've been saving and budgeting for this trip we have also put money aside for giving. So whatever God says we should do with what we are calling the "Service Money" we are going to be obedient and have a open heart to whatever awaits us. We are thankful for this opportunity and know it is not something many people can do at this time and we want to do what we can to help others along the way as God leads.

So that's what's been going on. There's been other stuff...I just fought off a cold, Bob went to the doctor for a respiratory issue, he's still feeding the albino squirrel, and today I took a local stray cat to the shelter. So life goes on for us. We are so very thankful for that for all that God does for us and for all He allows us to do.

Accepting

2009-11-08T19:06:00.002-06:00

I am interrupting the post on people who have accepted me and called me friend to write about our heart attitude of accepting others.

If you have ever read the Gospels you see Jesus hanging out with all kinds of people. Nicodemus was reportedly wealthy as was Zacheus. There were prostitutes, homeless people, sick people, needy people, people who struggled with sin, and people of means. When I read about the people with which Jesus hung out and when I read Jesus's words about caring for people, I believe in what is written. I believe in Jesus's actual message. I don't believe it's a metaphor or just a story. I believe we are to care for the people Jesus calls The Least Of These. I believe Jesus when he says to care for widows and orphans. When he says to feed the hungry, clothe the naked, visit the sick and those in prison, and give water to the thirsty. I believe these things but I haven't really acted on my believes. I have given money to organizations who feed the starving and give water to the thirsty. We even support a child through Food for the Hungry. But it's rare when I get to actually, physically help someone in need.

On our way to church there is a man who sits at a stoplight. He holds a sign that basically says he is homeless and hungry and can someone help. Some people give him money. Most people ignore him. He has been on Bob's and my hearts for weeks. Last week Bob said we should give him a birthday card. So we filled one out, put some birthday $ in it and gave it to him when we stopped at the light this morning. Before I gave it to him I asked his name and when I handed it over I said, "Happy Birthday HisName." He seemed thankful and he said, "God bless you!" Then we drove on to church.

Before the service I felt like God was saying we should invited HisName to Sunday dinner after church. I didn't share this with Bob...I just pondered it as I waiting to see if HisName would come to church. He has come to services in the past but I didn't see him today. At the end of service Bob came up to me and asked if he could invite HisName to Sunday dinner. I was surprised since I hadn't seen HisName enter the auditorium. I said Bob could indeed invite him but now I was nervous. It's one thing to believe something and another thing entirely to put hands to it and act it out.

Thankfully our pastor's sermon was all about letting God be God. If He sets something in our hearts or calls us to something He is sure to supply what is needed to see it through. Bob went to invite our new friend to Sunday dinner and he accepted! I prayed and told God I was horrible at small talk and didn't want to feel awkward around our new friend. God seemed to say I shouldn't worry and just let HisName tell his stories. That was an awesome answer to prayer because HisName was a talker! And he had several amazing stories to tell. It was as if a floodgate had been opened and he was just so thankful to have people to talk to.

We drove him to our home and he came right in and made himself at home. He was respectful and kind and polite and our kitties loved having an attentive guest who would pet them. He was delighted to oblige. He petted the kitties and chatted with Bob while I finished dinner.

Once dinner was served, I made sure he knew he could take as much or as little as he wanted and he was served first. He said our invitation was a huge blessing and answer to prayer because he couldn't remember the last time he'd had a hot meal for dinner. He said many many people blessed him by giving him sandwiches but he never got an honest to goodness home made hot meal. I felt he didn't eat enough but he said he ate his fill and had a happy belly.

After the meal I asked if there wasn't anything else we could offer him...a hot shower? A nap? Clothing? I could wash the clothes he had with/on him if needed. The only thing he asked for was socks and extra pants if we could spare them. I managed to find 2 pairs of warm pants, 2 long-sleeved shirts, and 4 pairs of pants. Since he carried everything he owned in 1 bag, I couldn't get him to take more than that but you can bet I tried.

We sat and talked for a couple more hours until he asked if we could please take him to the place he had to go to spend the night. We said we could but would he please join us next week for Sunday dinner as well. He agreed only if he could bring the ice cream and cribbage board. We agreed and then took him to where he directed us. I am already planning next week's Sunday Dinner menu.

After HisName left I looked around our apartment and realized we are so fortunate. We have SO much. There is so much stuff here we even have to store some of it in closets and shelves. It almost seems wasteful even though I know we JUST paired down this fall. Also, Bob and I work on having an attitude of gratitude. We work hard as seeing everything we have as directly from God. What we have is only ours to share with those around us. We set out to bless HisName with Sunday dinner and yet we ended up blessed by getting to know an interesting character...another child of God.

When we think of the house that may one day be ours, we don't see it as a place to store more stuff. We see it as a place we can share with others. Whether that be people like HisName, single moms, pregnant teenagers, families who've lost their own home, or women on the run from abusive men...we just want our home to be a place of peace and refuge. A place to rest and get back on your feet. We want to bless others the way we have been blessed. We want to live out what we read in the Bible every day. I won't say it's not scary...it definitely is. But we want to live the radical Gospel of Jesus and if He says feeding hungry people is the same as feeding Him...well, that's what we want to do.

I guess I wanted to write this out because I've been struggling with my own acceptance. Instead of looking to be accepted I should be looking for others to accept. If we hadn't stepped out today and invited HisName to dinner, I would have missed encountering a really nice man with an interesting past to share. I would have missed offering something I've been longing for and finding it in return. Maybe there is something to these radical teaches of Jesus. I look forward to finding out more. May He let us love on more of His children in the coming months and years.

Accepted

2009-11-04T23:26:00.002-06:00

OK enough navel gazing. Yes, yes I struggle with rejection and wanting to feel included. Big surprise, right? Oh no, I'm human and am seeking love, belonging, and understanding. Who am I and why am I here? It's so unusual isn't it?

Today I want to talk about the friends who've been there for me. The friends who stood by me and loved me and helped make me who I am today.

My first best friend was someone I met in pre-school. Her name was Julie Brand. We were in pre-school, Indian Princesses, and grade school together. Once we moved to Wisconsin, I lost touch with her and have always wondered about her. Who is she? How did she grow up? Where is she now? If anyone reading this knows of Julie Brand from South Saint Paul and Lincoln Elementary please have her contact me. Julie, for God's sake, Google your name girl.

I would be remiss if I didn't mention the Oldfield girls from across the street. Barb, Jill, Kathy, and Jenny were my friends and playmates. They were also my teachers and competitors. I learned to ride a 2-wheel bike because they told me I couldn't. I got on one of their bikes and rode it to the end of the alley and back. No one was more surprised than I was that day. I learned to play Heart and Soul on their piano. I learned that the cheese their mom cut into cubes and served as a snack was actually Velveeta. I learned to call my butt bubbles. Their mom would watch me on occasion and would let us watch Brady Bunch, The Monkees, and Gilligan's Island reruns. The Oldfield family also took me to their land where they grew their vegetables. I got my first tick there. They also took me to Vacation Bible School and taught me where Massachusetts was (their grandmother lived there). They had a white cat and a honeysuckle bush. I loved this family and their 4 girls. They made me feel homey and welcome.

The next friends I had were our neighbor girls Theresa and Tracy. Their parents owned a drapery store. We played together, walked to school together, were taught to crochet by our elderly backdoor neighbor, and had sleep overs. I don't remember much more than that, however.

I guess my next best friend was one of the girls that made up the trio I was in. Jenny lived in the subdivision across the street from ours. When we weren't fighting, we were sleeping over, singing into our hairbrushes, playing kick the can, riding bikes, pretending to be characters from Grease or Charlie's Angels, reading inappropriate books or watching inappropriate movies for our ages, studying together, riding the bus to school, and practicing in a play together. Jenny's glasses were the glasses I wore to check to see if I could see better with them. I could! (I got glasses in 4th grade.) Jenny was an only child of older parents. They were nice but either they left us alone a lot or just weren't home very much.

My next best friend...and oldest friend to date is Mary. She befriended me in 8th grade and we are still friends to this day. There were issues of jealousy because of another trio thing but Mary made me feel welcome in my new school/home. We did so much stuff together. Before we could drive, we walked or rode bikes all over town. We used to sit on the steps of her house and watch the older kids drive by on our town's main street. We had sleep overs. We were silly and had crushes on older boys. We would hang out with her cousins and watch movies. We would go to the movies downtown. We would pass notes, take silly pictures, and go to football & basketball games. She was smarter than I was in school but didn't lord it over me. She overcame countless odds and is one of the best people and greatest mothers I've had the privilege of knowing. When we were juniors, she had a baby. We stopped doing as much stuff together but in our senior year, I was in her wedding when she married Paul, the father of her son. She had 3 babies and I spoke to her on the phone the night before 2 of them were born...before she was even in labor. Or maybe labor had started? I can't remember. But throughout all these years, we kept in touch. Mary is the person I always think of as my best best friend. She knew all the boys I liked. She knew my deepest thoughts and secrets and sometimes she would even share her own. When I think of my home town and our high school, I think of Mary. I love her like she is my sister. I hope I'm just like her when I grow up.

More friends tomorrow.

Acceptance

2009-11-03T19:00:00.002-06:00

There has been a topic rolling around in my head for a couple of weeks now. I have wanted to write about it but I'm not sure that I can write about it as succinctly as I would like. I'm not sure I can put into words exactly what it is I've been feeling lately. However, everything has been building up to a point that to not write it would just leave me struggling more so this is my attempt to get it down and work through it...however it turns out.

Some background on me. I am the first born of 2 children. I have first born-itis. I grew up thinking it was my job to tell my brother what to do and how to do it. And honestly, that job wasn't just relegated to telling my brother. I thought that if I knew something, I should tell it. I thought if I knew something...it was right, law, the WORD. It has taken me 40 some years but I am growing out of that...mostly. There are times I still suffer from foot in mouth disease but for the most part I am learning to only give advice when asked.

Add to first born-itis the fact that we moved a lot. I attended 3 different grade schools and 2 different middle schools. Each new school meant making new friends, finding a new niche, making a new name for myself. As pliable and resilient as kids are, each new school was a difficult adjustment for me. I am, by nature, an outgoing extrovert so I look for ways to get to know people. I look for clubs I can join, groups in which I can partake, and people to befriend. I also have a huge capacity to empathize with others. This leads me to want to befriend and help and get involved. However I tend towards over sharing and easily emotional so again...not easily accepted.

I don't remember having problems with being accepted in Kindergarten or 1st grade. I remember being friends with Julie Brand. She was my best friend. And somehow in 1st grade she and I hooked up with Susan Haines (Hanes? Haynes?) and Jeffrey Rosen. Then we moved. I had ready-made friends next door with the Anderson girls who were just a little older and a little younger than I was. But in school, I had a hard time making friends. I really, really wanted to be this girl Kristine's friend and I tried but she didn't like me. Looking back, I can't remember any having any good, close friends in 2nd or 3rd grade other than our neighbor girls Theresa and Tracy.

We moved again before I entered 4th grade and while I remember having plenty of neighbor kids to play with, I also remember really struggling with the friends again at school. I ended up in a trio of girls, which most people know is not ideal. In a trio, it's often 2 against 1 and more often than not, I was the 1. Add to this, the fact that I was one of the early developers. While most of my friends remained thin, lithe, little girls, I grew curvy taller and curvy. I was teased and made fun of. Even if I had started to fit in...all of a sudden I didn't. I just remember 4th through 6th grade being a roller coaster of acceptance and rejection.

7th grade was my salvation. Most people find their jr. high years a living hell of hormones and horror stories. I loved 7th grade. I found a group of friends where I finally fit in. I found a niche in choir and acting. I had a boyfriend. I started to realize I loved English (I could diagram a sentence better than anyone.) I found out I was funny, creative, good at art, loved books, and just generally a likable person. I was still struggling with my body and my looks but I was finally beginning to feel comfortable in my own skin. Then we moved again.

8th grade was hell. We moved to a small town in the middle of summer. The only kids my age I met that summer were kids from church. They were nice but seemed to be comfortable in their group the way it was. When school started, it was just as hard to make friends. In this small town, most of the kids in my class grew up together since Kindergarten. Their social networks were pretty well established and entrenched. I did make some friends but still felt out of it. Try as I might, I could not recreate the self confidence I'd been building in 7th grade. I found solace in books and read all the time.

High school began in 9th grade. High school was better but still hard. I was still learning and making tragic mistakes. I was a gossiper and loved to pass along juicy tidbits of stuff I'd heard to others. This does NOT go over well with the people you are talking about. Also, I just didn't know when I wasn't wanted. I would try to entrench myself into a person's life or into a group and would not pick up the signals and signs that my presence wasn't wanted. Also, there was a small group of people that mercilessly teased, taunted, and tormented me regularly. Add to this the fact that my younger brother seemed to be a lot better at the friend thing than I was. At least he was perceived as cool. I was perceived as not cool. He came to high school 2 years after I did and became friends with many of the people I had tried so hard to get in with. I will say that most people were friendly towards me. I could have a conversation with the prom queen or the quarterback and come out unscathed and feeling pretty good. I just wasn't invited to their houses or their parties. There were other kids who would use me when they needed something, based on my need to feel needed and my ability to empathize but after they had used me, they would ignore and tease me again.

I thought college would change all of that. In some ways it did but in others, it was way worse. I loved how college was a built in community. I went to a small private college and thought faith would be an important part of the community there. It was to a degree but mostly, college was like a high school where you now had to live with everyone. To be honest, I am still friendly with people I went to college with so I have to say that I was able to make some friends and fit in somewhere. But again I had not yet learned how to read the signs from people that just did not want me around. I longed to be friends with certain people and would just insert myself into their lives. And again, I would allow myself to be used and then ignored.

I think college was somehow the worst in wounding me. I still remember the shuns, the spurns, the teasing, and the mean pranks. I remember one time there was a dance at school but instead of being there, I was at a church function. The phone rang at the house we were at and I was told the call was for me. It was someone from the dance saying the guy I had a crush was wondering where I was. Why wasn't I at the dance? He wanted to dance with me. I pretty much knew this to be the gigantic lie that it was but hope exploded in me and I drove to the dance only to find...nothing. He wasn't there. I don't know if he knew his friend had called and told me this but the hurt at that moment was intense. It still stings a bit to tell it.

I wasn't without malice at college myself and am embarrassed by my own snubs and ignorance. Who knows what friendships and connections I could have made had I been open to all who sought me. Not only that, I KNOW the pain of rejection. How could I have caused that same pain to others? That is something I wish I could go back and change if given a chance.

In the 20 years since college I've had lots of opportunities to make friends and be rejected. I've learned a lot about myself but I have yet to learn how NOT to seek approval and acceptance. I've not learned how to hold back and let connections happen. I still have the tendency to rush in like a puppy, all tongue and tail ready to be petted. When the petting doesn't come, I still get hurt.

This was all brought back to me in living color a couple of weekends ago. There was a gathering of online personalities here in the Twin Cities. These are people I've never met in person but have had contact with through their blogs, websites, Twitter, and Facebook. They were descending on my town on a weekend filled with family, church, and business obligations but I was sure I could find time to catch up with them. This is also the weekend my cell decided to partially die. The screen went out. I could dial out if I knew the number and I could receive calls but I could not return a call that came in if I didn't know the number nor could I retrieve my voicemail messages. Still, through a complex system of calls, tweats, and Facebook entries, it was decided that someone would call me at noon on Saturday to let me know where they were and how I could meet up with them. My window of time to meet them was small (noon-5 on Saturday). So I waited for the call. And waited. I tweated and FB'd. Nothing. Instead of waiting for the call, I decided to do laundry. And on my way to the laundromat, the old feelings of rejection washed over me. Familiar feelings of being left out, not good enough, and sadness just filled me. Of course I found out later that the gang had just been out too late the night before and ended up sleeping during the time they would have normally been out and about. The adult in me figured that to be the case but the little new kid in me thought for sure I'd been utterly rejected. I was never so happy to find this wasn't true.

Attending our new church has been an interesting lesson in acceptance as well. Not only are we still somewhat the new kids, we are coming in to issues of culture, race, existing community, and other issues. (For instance, people with kids just gravitate naturally towards others with kids and people who are neighbors already have an edge.) We are making friends and connections. I find Facebook kind of helps, as does my photography. But for every mis-step and mis-communication I make, I struggle with those old fears, failures, and frustrations. I long to be known. I long to be accepted and liked. I long for community and connection and I don't know how to do it. I am different. I am not cool. I am just trying fit in...but I think that once again, I'm trying too hard. When will this be a lesson I finally learn?

New Blog

2009-07-06T22:44:00.004-05:00

I'm not sure why I'm not writing...here or anywhere. Maybe Twitter and Facebook have filled the need for my sharing my life with the public. Maybe I just don't know what to say. Still not pregnant...probably never will be. Bob's still disabled. I have the summer off from school but am toying with the idea of not going back. I've been enjoying the summer though I feel a little aimless and off so maybe school is good if only to have something scheduled.

A comment I made in my Facebook/Twitter status led 2 people to mention that I write a book. I don't know that I can write a book but I can write a blog. So I am starting a second blog. I am going to write stories of what we have been holding on to/hoarding to tell our children. Since they aren't here, maybe others wills find some whimsey, wisdom, and worthiness in what we have to share. I think I might ask Bob to join me...maybe every other time he can share something from his heart. I don't know.

I do know that I need to write down all the things my mind conceives to tell the children we don't have but dreamt of. Things about their family, our lives before, things we learned that we wanted to teach our kids so they (hopefully) wouldn't struggle as we did, things that are just silly or amazing, and things that just come to me as I load the dishwasher or stand in the shower.

So, I will post the link to the new blog here if you want to join us. Thanks! http://parentstonone.blogspot.com/

Summertime and the Living is...

2009-05-13T22:16:00.002-05:00

So today began my first full day of summer. Since I'm not taking any classes at school this summer and my full-time job is to take care of Bob, I am home for the summer. I haven't had a summer break/vacation in 20 years. I've looked forward to this for months but even so, I'm kind of nervous.

I've been telling Bob for weeks that he only had to wait until summer and then he'd get me all to himself. We've both been looking forward to it but I'm a bit apprehensive as well. I'm an independent woman and like to do my own thing. Bob likes having me around and doing things together. Being at Bob's beck and call this summer may bring some interesting challenges for us.

Taking care of Bob was something I forsaw as soon as we received his diagnosis 7 years ago.I remember falling to the kitchen floor sobbing and grasping for something to hold on to. Seeing it then weighed on my like a huge burden I not only was unable to carry, I had no desire to carry it. Back then I saw it as a duty and something that would completely consume my freedom and independance. As Bob's MD progressed, it has progressed slow enough for us both to get used to the changes and challanges together. The longer we are together, the more I fall in love with the man Bob is and the more I want to be there for him. I want to help him maintain his independance and his abilities. I want to do what I can to help him stay free and do things on his own.

Still I am wondering if spending the summer together might bring me to a place this fall where I am reluctant to return to school. Bob says we need to do things together now while we (he) still can. There may come a time when we (he) can't travel or fish or go to our favorite parks and places. So while he still can, we do what we can to enjoy life, the outdoors, and each other. On the other hand, maybe we will have had enough of 24/7 togetherness and I will be anxious to get back to class.

So far the care I give Bob is mostly maintenance kind of care. I cook, I clean, I do laundry, I feed the cats, I drive him to appointments and meetings, I sometimes help him with dressing and undressing, and there might be things I help him with today that he doesn't need help with tomorrow. But there are days he can barely move on his own. There are days he is in so much pain all he can do is still in his wheelchair and look out the window. He doesn't usually allow the pain to take anything away from him, but there are days he doesn't have a choice. Neither one of us looks forward to a day that may mean I have to do things for Bob that he is able to do himself now.

The other day I dreamt Bob died. And in the dream, at Bob's death, something died inside of me. I lost my sense of purpose and it felt so real. I woke up and realized that by making Bob's care my job, I don't have a lot to fall back on if he goes before I do. We don't have children. My home is really here because this is Bob's home and I fell in love with it when I fell in love with him. If he were gone, I don't know that I could stay here. What would I do? Where would I go? I continue to ponder these questions. No one has ever loved me or treated me the way Bob does. I don't think anyone ever could. I hate to think of a time when either one of us might be left behind due to the other's death. Maybe God will be good and take us together?

In the meantime I am looking forward to what this summer brings. It's been a long, cold winter and I want and need warmth and sunshine. I need as much as I can get. You know, Memorial Day is the earliest it can possibly be and Labor Day is the latest day it can get so it's like we get nearly 2 extra weeks of summer. I am going to do what I can to make sure Bob has a great time. I've already planted our patio garden, we are going to a training session for follow-up to the Rock the River event coming up in August, and we are feeling more at home in our church and making friends there. In addition, there will be fishing, maybe some camping, and hopefully a short trip to the Black Hills. When we look back on this summer, it will hopefully rank up there as our best. I am going to do my best to make this a summer of memories because that is what I can hold on to if Bob does go before me. Maybe there is nothing to worry about after all.

Ignoring It doesn't make it go away

2009-05-01T10:41:00.003-05:00

I have known that this week is National Infertility Awareness Week for some time. I wanted to write something about it earlier in the week but as the week flew by, I found myself hestitant to write anything. After all, what could I say that hasn't already been said by me and others familiar with the pain of infertility? Besides, I am already aware of infertility. I don't need a week to refamiliarize myself with it. By writing about it, does it make you aware? Were you not already aware? Now that you are aware, so what?

Infertility is a painful medical condistion and yet isn't something that is noticible. You don't see women and men with a big purple I painted on their foreheads. If our bones were broken, you would see a cast or splint or some kind of impliment wrapped around the broken area. But with infertiliy, our reproduction is broken and there is nothing to wrap around us to heal us. And the pain is intermittent. Some days there is no pain. Other days the pain suddenly sneaks up on you and clobbers you with intensity. And still other days there is just little pains that remind you of your brokenness.

Last night someone kindly mentioned to me that she was sorry for our struggles and I was so grateful for her kindness and yet it was all I could do to not just bawl all over her as I thanked her. The grief and tears came out of nowhere. Prior to her empathic outreach I'd been laughing and having fun doing what I love to do. As soon as she mentioned our infertility, the tears came as though she had physically pressed on a broken body part. Which I guess she did.

Later last night I was in Target and I think it was tiny baby shopping day because I heard no less than 4 tiny infants crying the cry of a newborn baby in the hour I spent in the home of the bullseye. Also, I saw a dad shopping with his son in the toy aisle. The boy had to be 5 or 6 and was dressed in fuzzy feetie jammies and flip flops. All of these scenes pressed painfully against that spot inside me that is broken.

One of the reasons for the stop at Target was to pick up Mother's Day cards for our moms. Again, another sharp and painful press on a broken place. Mother's Day has been especially painful for me for the past 5 or 6 years. I tend to avoid churches and Sunday Brunch places that particular sabbath day in hopes of lessening the sharp, throbbing pain of failure, loss, and brokenness.

I still don't know what God's plan in all of this is. I am no longer angry with Him nor ignoring Him or pushing Him away. I am still struggling to get answers and see what this means. His word says to be fruitful and multiply. He speaks of children being a blessing. He created my body to conceive and bear children and yet it has not happened. We tried to become foster parents and that is not possible either. I don't know how to reconcile what it seems God's word says with our own reality but I am not giving up on finding understanding at some point.

So maybe at the end of this National Infertility Awareness Week you can go ahead and just give someone a hug and say you are sorry for their pain but have hope in a God who heals. And then maybe ask if you can bring your kids over for a playdate. Big people like to play with kids too.

Oh, hello there.

2009-04-17T01:00:00.003-05:00

Yes I realize it's been a while. Let's dispense with the pleasantries shall we?

My friend had her baby yesterday. Remember me writing about the friend who, more so than any other friend, has stood by me believing Bob and I would one day actually be parents? Remember me writing that she had gotten pregnant? With her 4th child? Accidentally? And her other three kids are ages 15, 16, and 17? Yeah, that friend.

Her baby came at 8:38am, weighed 6lbs, 12oz, was 19 inches long, and is the most beautiful little girl I've ever seen. She's a tiny little peanut who came out just lovely due to the C-section her mommy had. Her name is Jaina Marie and I've changed 2 of her poopie diapers.

I was actually doing very well with everything considering...until today. While I was at the hospital today, my friend was visited by another friend who turned out to be pregnant with her 8th child, a girl. This will be their first girl and she is due in June. Before my friend's friend left, she exclaimed that she can't wait until their girls are older and can be best friends and play together. As soon as she left, I burst into tears. I didn't mean to. It just happened...like some kind of grief bomb. My friend was so consilatory. She immediately handed the baby to me and held my hand while I cried. Sometimes I am good with how things are and sometimes it hurts so much I don't know how I will endure it. Tonight was the latter.

It doesn't help when I watch TV shows like the Duggars. This past Tuesday, the eldest Duggar kid, Josh's new little wifey turned out to be pregnant. Four months into their marriage and she is pregnant. She spoke of how hard it was to read this pregnancy test because so many of their other ones had been negative. Yeah. So many of them. Like all 3 or 4??? It's not that I begrudge the new Mrs. Duggar her disappointment because I sooooooo know that feeling. The elation and expectation of hope only to crash hard on the disappointing reality of a negative pregnancy test. But come talk to me after you've tried for 7 years and taken who knows how many pregnancy tests that all say, "Nope...not this time sistah."

It also isn't easy when Bob looks at the pictures I took of this beautiful little baby and says whistfully, "I want a baby. I want to be a daddy." Oh, I know honey. I know and I wish I could give that to you. More than anything I wish I could bear a child with Bob's red hair and my brown eyes. I wish I could see Bob fall in love with his new little girl or sweet baby boy. I wish when I am buying baby clothes at Target they are for our child, not someone else's. I wish I could know the mystery of carrying a pregnancy and birthing a child and nursing. My friend is supremely generous with her baby and loves me so much but it's not the same. Duh.

Yesterday, after visiting my friend and her baby, I came home sick and had a bout of vomiting. Today Bob told me he had secretly hoped it was morning sickness. He hadn't wanted to share that with me but after I told him about the grief bomb at the hospital, he just felt it right to share. Truth be told, I kind of hoped so too. More truth is it's not likely and I won't have any positive idea for another week or so but the odds are high that it was just a bug, not a baby. Although at this point I never allow myself the luxury of hope. I actually don't even keep track of my periods any more so I'm not sure the exact date it's due. I've even been toying with going on the pill. My periods are so painful the first 2 days or so and last time I was on the pill, the pain and cramping significantly decreased. I just can't get there yet though. Although I don't allow myself hope, I can't give it up totally either.

How Did I Get so Blessed?

2009-02-21T21:06:00.002-06:00

Wow, I have a blog. Maybe I should update every now and then, huh?

Things are good. Since the last time I wrote I am now an official employee of my husband. I have the paystub to prove it. I got my first paycheck for being my husband's personal care attendant. Heh, sounds like something every husband would pay for but this is just a job taking care of my husband in ways he is unable to do himself. Hmmm, still sounds kinda kinky...believe me, it's not. Most days I help him get dressed or undressed, make his meals, clean up, make phone calls, run him around to appointments and on errands, and other stuff for which he needs help. It's a pretty good gig. People joke that I probably had a great interview and maybe slept my way to my current position. I joke back that I had to report him to HR for being a little "handsy". But so far, so good and the pay's not bad either. Oh, and I also get medical insurance...that is if I'm approved. I just feel so blessed.

In other "blessing" type news, we may be able to buy a house. How is this possible, you may ask? Well, I wondered that as well. I was talking to a guy I know from church and I asked him how Bob and I might possibly find a house to buy on the North side of Minneapolis. He said he knew of a couple of ways and to either contact Urban Homeworks or City of Lakes Land Trust. When I got home I looked both up on the web and saw that CLLT had a handicapped accessible home for sale. I emailed them...and never heard back. However, on Monday night I was commissioned to photograph a meeting through our church's community development program. At the meeting was a speaker from Urban Homeworks. He had TONS of information and gave me his card. I emailed him and a co-worker of his and at this point, we tentatively qualify to buy a house through them. They have one they are building right now that is just a foundation but if we truly do qualify and get on board with them, they can make it accessible. It's in the North neighborhood we are interested in and there are neighbors from our church already established there. We hope to meet with "our guy" in the next week or so. Wouldn't it be amazing if this works out? I am so ready for a house. We've lived in an apartment for all 7 1/2 years of our marriage and for the most part, it was good. This year has been the worst what with the stomping neighbor child upstairs.

School contiues to go well. I continue to be completely intimidated by studio lighting and portraiture. I am muddling through and hoping that by getting through this semester I will at least get to a point where I feel comfortable with the lighting and posing. Also, I keep thinking that at the very least I can get through it and maybe learn something that will help me be a better photographer. This Thursday was so frustrating. I was in the studio with 2 other classmates trying to complete an assignment and my camera would not work with the studio lights even though we tried everything. I thought maybe my camera was broken somehow and had to complete the assignment with a camera borrowed from the school lab. Later, one of my instructors quizzed me about the episode and told me to try again but this time set my camera's shutter speed at the next lowest speed. He said most cameras have a max synch speed and it was possible mine was not working because the shutter speed was set too high. I tried it and he was right! It worked at the lower speed which must be the max. I was so relieved. I was thinking I would have to buy a whole new camera to complete the semester but I don't. Whew!

Bob is doing well. As well as can be expected since he's been in a high amount of pain every day. We have a wheelchair follow up with the physical therapist so he can get his new wheelchair. The one he was using to demo was awesome. He will need some custom seating, but the new chair is better, faster, stronger. (A nod to the 6 million dollar man.) He's been giving away his book of poetry in hopes of blessing others with his story and he continues to amaze me with his positive attitude and strong faith. He is truly an amazing man with more strength than 10 body builders.

Breathing Room

2009-02-02T21:50:00.002-06:00

So I'm now on Bob's payroll. We made it through all the hoops and paperwork and got our grant and plan approved. I am paid to take care of Bob 5 hours a day every day. I am not paid a lot but I get an hourly wage and health coverage. Plus we have a small amount left over in order to get Bob other things he needs. For instance, today we picked up a speaker phone for him. Holding a handset is difficult for him. Now all he needs to do is push a button to answer the phone. Easy. I can't even begin to tell you how much this helps us and makes things easier for us. We can breathe again.

Another thing that helps is that I finally got the money from my former employer's cash balance program. It was a lot less than I thought...it was, after all, based on the market so I guess I shouldn't be surprised. However, it's enough money to allow us to catch up on all our back bills and have a little left over for things we need as well. More breathing room.

This weekend was crazy busy but the weather was absolutely amazing. The high here on Saturday got to 45 degrees. People were going without jackets and I even saw some people out and about in shorts and a T-shirt. Conversely the weather today was bitterly cold. It was about 7 degrees and very windy. The low in the morning is supposed to be -25 with windchill. Anyway, Friday Bob and I went to Ikea to get him a dresser. I was so glad he was with me because I would have picked out something completely different. As it is, he picked out a dresser from their Melm collection. The drawers have slanted edges that are easy for him to grip and they have rollers that roll smoothly and easily. They aren't meant to close on their own, but they do, mostly in part I am sure due to the slant of our floor. I spent the rest of Friday evening putting the dresser together.

Oh! Also on Friday I got my hair colored. I went to a salon that was offering a special. As long as the appointment was made and kept in January, the cost of all over color was $50. I went in to get my old color back but left with something more akin to Mortitia. I think I look like an overaged goth but Bob likes it. One of my girlfriends said it looked...OK. Nice. Pictures don't seem to quite capture the darkness of the hair but I am getting used to it now.

I met some girlfriends for brunch Saturday morning and then spent the rest of Saturday hanging out with Bob and running errands. Sunday was church and cleaning and then the Super Bowl. Truth be told, we watched more of the puppy bowl on Animal Planet than we did the Super Bowl but we didn't have a vested interest in the game so it was hard to pay attention.

Today was laundry and more errands. Tomorrow is school all day. It is interesting that I no longer have to look for a full time job. I get paid to look after my husband. I get paid to make his meals, wash his clothes, clean the house, and help him dress, undress, bathe, and to drive him around. Essentially I get paid to hang out with my husband and best friend. It feels good.

CDCS Update and More

2009-01-25T22:02:00.004-06:00

It looks like we are on our way with the Consumer Directed Community Support grant will finally get started on February 1st. We met with the director of the program on Wednesday and I am meeting with a person from the agency that will help us with our budget and with my employment as Bob's Personal Care Attendant. We are granted a set amount each year and from that budget we have to pay for things that help in Bob's daily care. That includes a small salary for me to care for him but it also includes training for me and Bob, modifiers for his daily living (environmental modifications and provisions) which include clothing, food, and items used in bathing, dressing, and working. For instance, we already know that money will need to be budgeted for Bob's Lifeline service and for his Meals on Wheels service. This is such an answer to prayer. It will certainly be a learning experience as we go.

Yesterday I went out and photographed the events of the St. Paul Winter Carnival. I took pictures at the snow sculptures in progress and then happened upon the Carnival parade in progress so took some snaps there as well. Finally, I was able to get photos of the ice carvings too. Since yesterday's temps ran below 0 with windchils even colder, it was not a day for the faint of heart to be out. It took me hours to warm up once home and today I woke up feeling ill. It seems that whenever I spend more than an hour in frigid temps, I wake up sick. It happened last year when I stayed out to photograph the total eclipse of the moon and it happened again yesterday. Bob said that perhaps I'd been fighting a cold or flu already and then my body was working so hard to keep warm in the cold yesterday despite the layers I'd carefully worn and wasn't able to fight the illness any more. Makes sense to me. I slept until 2:30 this afternoon and just rested in front of the TV and a book this afternoon. Hope I feel better tomorrow since it's laundry day and Tuesday is my full school day.

I am so looking forward to Friday. Friday is the day that I get the remainder of my student loan paid out to me. I am also looking forward to Monday the 1st since I am supposed to get the money from my former work's cash balance plan. Once we get all the funds together, we are going to catch up on bills. We are behind several months in our heating bill and are behind a month on our other bills. It will feel good to be caught up. After that, I will be drawing a salary from my care for Bob so we should be able to keep on top of them from now on. We are also going to use a small portion of the money to take a short trip. I think we should go to Chicago over my spring break. Bob's never been there and we can take the Amtrak round trip for under $200 for us both. It's a 6 hour drive but only an 8 1/2 hour train ride. Bob should be able to ride in an accessible area so we don't need to worry about what to do with the chair.

Oh! Speaking of the chair...Bob is getting a demo of a possible new chair on Tuesday. His chair is nearing the 5 year (or is it 6 now?) mark and is showing signs of breaking down. And while it was a good fit for him then, as his disease has progressed, it is now not such a good fit. Hopefully we will be able to find a better fit for him and be able to make his use of it more comfortable for him.

Finally, I am amazed to discover that a photo I entered in a monthly photo contest at school won 2nd place. It's only the 2nd photo I've entered and I am scared to enter these things. Still, it feels good to have my work recognized. Even more so when I remember that I am only a 2nd semester student and the people that routinely win these things are the students in the 3rd or 4th semester. Go me!

Like the Hammonds

2009-01-11T21:47:00.002-06:00

I went to the memorial service of a family friend yesterday. I hadn't seen Pete Hammond in years and yet his death has left me a little...off sides. I am not sure why. When we first moved to the town I consider my home town, we started attending a church. At that church one of the families I noticed right away was Pete's family. His children were the epitome of beauty. He and his wife were gracious and kind. Pete himself was funny, fun-loving, and kind. I remember thinking he must be like Jesus because he exuded a kind of grace, humor, kindness, and provocativeness (is that a word?). I imagined Jesus being the same way. He always had a kind word for me even when I was an immature teen. And it was obvious to me, an outsider looking in, that he loved his family fiercely.

I have more memories of his kids of course. Scott being the oldest was my, and every teenage girl's crush. One time I announced my phobia of bugs to my crowded church family and Scott and a friend asked if I could accompany them to a movie. I was thrilled. I was less so when during a scene in Indiana Jones and the Temple of Doom I became ill (due to the plethora of bugs in the scene) and had to leave for the restroom. Not the movie date I had in mind with Scott. I look back now on it and laugh but then I was mortified.

Leigh was the middle child and 2 years ahead of me in school. I so looked up to her. She was popular but not stuck up. She was kind to everybody and seemed to be a friend to all. I so wanted to be like her.

Layne was a year behind me and seemed to be a better friend to my brother than to me but again, she was a popular girl with dozens of friends and I wish I could be like her.

Looking back I know I idealized their family. I only knew the public persona put forth for church and school but I also know that Scott, Leigh, and Layne are authentic and kind and amazing people who love God and live the life Jesus laid out for us every day. They became the people they are due to the influence of their parents. Parents who, though not perfect themselves, exhibited grace, kindness, and love.

You know, I took Pete and his wife Shirley for granted. I did. I knew them but I didn't KNOW them. And I could have. I thought there would be more time. Why wasn't there more time? What I wouldn't give for the time to introduce my husband to Pete and have them talk about growing up without a father and learning how to let God be Daddy. That opportunity is gone...at least in this life.

Every now and then you know you are in the presence of a true authentic person. Pete (and Shirley) was that kind of person. Scott, Leigh, and Layne are too. I hope that some day I too can be like them. It's been 20+ years and I still want to be like the Hammonds. Of course I know now what I didn't know then. We all just want to be like Jesus. I hope I am getting closer.

Thankful

2009-01-06T23:19:00.002-06:00

On Thursday I am driving home to Wisconsin. A family friend passed away unexpectedly and the memorial service is this weekend. Bob is staying here. He encouraged me to leave tomorrow or today so I could spend more time with my family. While I entertained that thought I did not entertain it for long. I just did not feel comfortable leaving Bob home alone for that length of time. Even with him getting 2 Meals on Wheels per week and having a Lifeline hooked up I do not think it's safe for him to be alone that long. He gets frustrated when I voice this because it makes him feel like a baby or child. I don't mean to make him feel that way but I do take his safety and care seriously and just don't think it's wise for him to be alone for 5 days. This is one of our constant battles now that I am officially his caretaker. How do I manage his care and safety without demeaning him and making him feel like a child? This is why I wish I had a caregivers support group to attend.

There is still a little money coming in here and there which makes life a little easier. Today Bob turned off his computer and said I should turn mine off as well because he was taking me to lunch. Well, our money is all pooled together and I drove so technically we just went to lunch together. The first place we went, Boston Market, was no longer there. The place was empty, the signs missing, and all was gone. So we decided to try Mexican and I drove to Don Pablos only to find the same thing! We finally settled on our favorite Irish Pub which was still standing and operable and am I glad. I ordered the beef stew and it was the tastiest, most savory, most tender stew I've ever had. I wish I had the recipe and knew how to make beef stew. So good.

On Monday I went to my school to buy my books. My school has this heavenly system that allows you to purchase books and they apply the cost to the financial aid you've been given instead of making you buy them and THEN reimbursing you for them. I bought my 4 books, an 8 gig jump drive, and a new backpack since the one I had was finally falling apart and it was all under $200. That surprised me in a major way since none of my books were used. Classes start next week and I feel like I am ready. It certainly seems that a 3 week break is just the perfect amount of break so as to feel properly rested and ready to get back to work.

I am thankful for this time right now. We have the help we desperately need to keep Bob healthy and energetic. We are closer now to the grant and me getting paid for Bob's care. We have a church we love and are excited about attending. Our home is homey, peaceful, and full of the things we need. We have friends and family that love us and support us as they can. Bob and I are able to spend significant parts of the day together. We are doing what we can to live out our faith on a daily basis and to love our neighbors as part of that life. This is a stressful and somewhat lean time but I truly think there has never been a better time in our 7+ years of marriage. Recently a woman at church told me that our marriage is a testimony of true love. She doesn't know us, she had just MET me but she's seen us together regularly on Sundays and her comment was another reminder that I don't just stay with Bob because I love him (and I do). I stay with him because I promised him on our wedding day that I would and because loving him is another way I can show him tangible evidence of God's love When you say those vows you don't really believe the poorer, sicker, and worse days will come. But come they do. When Bob gets down on himself and wonders why I am still with him I always tell him that if it hadn't been the Muscular Dystrophy, it would have been something else and we would have to face that together.

Anyway, I am thankful for this time, even if it has been difficult. I haven't had to do it alone and I've been able to spend it with my best friend in the whole world.

New Year, New Blog

2009-01-04T21:25:00.003-06:00

Things have changed. The old blog seemed to be more of a place to whine, complain, bitch, moan, and cry out, "WHY?" That may still happen here, but what I want to document here are the things that God is DOING not what He's withholding or keeping from me/us.

I think the changes started during my time away with my girlfriends during our annual girlfriends getaway up north. We had a powerful time of prayer. During that time I really cried out to God. I can't explain it but afterwards I felt a release. I finally felt free from the burden of grief I'd been carrying around. That is NOT to say I still don't have a deep desire for children. I still do. However, I am not carrying the grief of not bearing children with me any longer.

Another change that has recently occurred is that Bob and I have found a new church. It's called The Sanctuary and it is a church that is very different from the churches in which we grew up. It is just a little over 5 years old and it meets in a North Minneapolis middle school. Its purpose is to change the face of the church by reconciling the people of the city to God and one another. Its vision is a reconciling movement. Because of its size, there are small study groups, meal groups, and what they call affinity groups. There are also TONS of opportunities for service and outreach. Bob and I have kind of jumped in with both feet and have felt welcomed, loved, and at home there. One of our favorite features of the church is its Hip Hop Sundays where the music, art, dance, and rap of the Hip Hop scene are used to to praise God and worship. It's different but it's amazing.

Today in church our pastor preached on change and how true change requires a close relationship with God, an understanding of the church, and an understand of Biblical history and the anticipation of Jesus's return. As Pastor Smith was preaching I realized that while I no longer carry the grief of not having children, I still carry the desire to have children. So I prayed that God would use that desire in whatever way He saw fit. Maybe it's in conjunction with my heart for single moms or Bob's heart for fatherless boys. Maybe it's to be available to friends who just need a break. Who knows? The change that has occured in me has allowed me to finally seek God and ask Him what He would have me do instead of thrusting my anger at Him and yelling at Him for what I don't have. And would you believe I feel so free? And excited? There is palpable anticipation in my heart about what God can do with me now that I am open to whatever it is He has in store/mind.

The other changes that have occured have to do with how I spend my time. Of course I am no longer working full time. I am working part time work study at school and taking classes. This next semester I will have class all day (over 12 hours) on Tuesday and will work workstudy Monday, Wednesday, and Thursday nights. This leaves my days free as well as full weekends free. Of course I will have homework and will have to spend some extra time at school with one of the classes I am taking which is called "photographers assistant". The rest of my time is spent taking care of my husband Bob. Not that he requires non-stop care or assistance with every aspect of daily living but he does need help making meals, getting dressed and undressed, picking up, and for safety. Thankfully we have other help with some of the things. Meals on Wheels comes every Tuesday and Thursday and Bob has a Lifeline necklace that he wears when I'm not home in case he falls or something else occurs in which he needs emergency help. Those things take a huge burden off of me. Still, I was surpised at how much help Bob needs. I should have quit my job a couple of years ago but am just so thankful that nothing horrible happened to him while I was at work before.

I am not sure how I feel about being Bob's caregiver. I do know that all too frequently we fall into a kind of parent/child dynamic that neither one of us likes. And there are times when I feel like Bob is taking me for granted and is just throwing his towels on the floor on purpose or doesn't make any effort to do something for himself. But mostly I just want him to be comfortable, happy, and free to do what he can with the strength he still has left. I did reach out to another wife/caregiver I know whose husband has ALS. I asked her if she knew of a local caregiver support group and she said she's been looking for one as well. She suggested we get together for coffee and just start one ourselves. I agreed to that and am waiting to hear back from her as to what works best. She also suggested the St. Paul Center for Grief. I will be looking into that as well.

So there are changes afoot. On the outset they may not seem so good (not having a full time job, Bob's MD, not havingds we wanted) but God is really keeping His promise about working them all out for our good. That's why I wanted to start a new blog. So here's to new beginnings, new hope, and the new blog.