Faith's Mom's Blog

We had a great day celebrating Rob's birthday yesterday and to top it off the USA was playing gold-medal contenders, Canada in men's hockey. The only bad thing about this was that we do not get cable so we couldn't actually watch the game. Rob's sister contacted us to tell us that where she lives (Peterborough, Ontario) the game was on 15 different channels in five different languages. We were not so lucky. We figured we would have to suffer until his parents called us with a first intermission report. Somehow in the process of me getting Faith's bath ready, Rob and his parents decided to hook up using Skype through the Internet. Rob then came up with the idea that the game would probably be on the radio. His mom found it and put it near the microphone so that we could hear it. His dad was watching it in their living room yelling out who scored, who got a penalty, and other interesting plays. He may have missed his calling (he's a retired priest) and should h

Last week and now again this week we are experiencing some near-sleepless nights. Last week, Faith was only sleeping for about an hour at a time before waking up, tossing and turning on the verge of crying. Each time this happened I would get up with her and hold her until she went back to sleep. Then an hour later we would repeat the process. This was nothing new for her. It had gone on before and each time it happened I wondered what could be going on. Rob and I figured she was going through a growth spurt and having pains in her legs like I used to have. I decided this time though, that I would take her in to see her pediatrician. I'm so glad I did. He attributed her restlessness to muscle spasms which is common for those with high muscle tone (tight muscles). It made sense too because of the way she was acting. It's as if she just couldn't get comfortable. When you or I sleep we can actually relax our muscles, but Faith can't because her brain is not capable of se

Have you ever had a gut feeling? Sometimes I think that gut feeling is really the Holy Spirit. This has happened to me a few times recently. Once I was getting ready to go to a meeting to learn how I could get more involved in a particular group. But at the last minute before walking out the door, something compelled me not to go to the meeting. I heard a voice inside my head ask, "do you really want to do this?" No, I didn't want to, I just thought I should . I really do believe God knows what is best for us and for whatever reason maybe He didn't think my decision was the wisest one to make. More recently, I had another one of these gut feelings but I didn't listen to it right away. It involved our respite care for Faith. We were trying to get a third provider to help fill in some of our allotted hours. On the first day we were introduced to her I just had this feeling. My husband happened to come home for lunch and he said he felt the same way. I decided thou

As a mom, I have to make many decisions on a day to day basis. What to make for dinner, how to spend my free time, what to buy at the grocery store, what we need from Wal-Mart, etc. The list goes on and on. But one of the hardest decisions I have to make is whether or not to send Faith to school when she's not feeling 100%. Of course I'm not going to send her if she has a fever or if she's throwing up. But what if she just has a cold? Do I let her stay home and rest or do I send her to school anyway? On Wednesday of this week I opted to keep her home. She hadn't slept well the night before and she was really mucousy and very tired. But I noticed throughout the morning she seemed to feel better and she was her usual happy self. Could she have gone to school I wondered? That night she didn't even act like she had a cold the way she was laughing and carrying on with her dad. I decided if she slept well that night I would send her to school in the morning. Thursday

It is yet another cold, blustery day on the Northern Plains. The temperature may be above zero, but the wind makes it biting cold. Personally, it is not the kind of weather in which I want to be pushing a wheelchair. Frankly, I probably wouldn't even be able to push a wheelchair through this wind especially over the snow-drifted sidewalks and icy patches. That's where my friend, Tina comes in. She has truly saved the day more than once this winter. It was in December during a cold snap that Tina noticed me pushing a very bundled up Faith to school. Her heart went out to us and that night she asked her husband to take one of the seats out of their van so they could transport Faith to school. Tina called me and wanted to try it. Although I admired her enthusiasm, I had my doubts that it would work. Faith's chair was heavy and we were going to have to lift it up into her van. Plus, I didn't know if Faith was going to sit very well in one of her daughter's car seats.

I'm sure by now Faith's teacher's aid thinks I'm somewhat of a space cadet. On occasion I forget to bring things to school, like for instance, Faith's feeding. Faith's aid has gotten to the point where she writes little reminders to me in our communications notebook. Sometimes, though, even with these helpful little reminders, I still forget. But yesterday was the real kicker! When I got Faith to school, her aid noticed one of Faith's arms from her chair was missing. Let me explain. Faith's chair comes in two parts - her seating system and a base with wheels. At home she has an extra base which enables Faith to power her own chair. In the process of switching bases, we take one of the chair's arms off and replace it with another arm for the power base. This arm has a little computer on it to tell Faith when the chair is on. In putting Faith's regular base back on, I have to take the computer arm out and replace it with the chair's normal ar

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