Faith's Mom's Blog

What an adventure we had last week trying to make it over to Mandan for their annual Ag Day. The day began by adjusting Faith's feedings so I wouldn't have to do it at the event. Thankfully, she was up early that day and I was able to bring her to school about 30 minutes late. By the time we were getting ready to leave the school she had her second feeding and was ready to go! Or so we thought. When I went to pick up Faith she was surrounded by all three Kindergarten classes standing in line trying to contain their excitement about their field trip. While the kids impatiently waited for their bus to arrive, Tina and I got Faith loaded up in her van and away we went. As we drove into the parking lot of the Mandan Community Center, Tina received a phone call on her cell phone. Apparently, the paperwork for the bus had not been finalized so the kids were not able to go on their field trip afterall. What huge bummer for all those kids. Tina and I decided to go back to the schoo

Late last week, Faith and I had a little accident in the Hyundai. We were going north on Washington, which is a very busy street especially around 5:00 p.m. I was trying to get to Avenue C and then make a left in order to get home but we only made it as far as Avenue B. We had just gotten done with Faith's physical therapy appointment and getting her hair cut. It was after five and I knew Michelle (respite care) was due to be at our home at 5:30. I was in a bit of a hurry and then I got distracted by a pedestrian who was trying to decide where to cross the street. I watched him for a bit then when I looked back in front of me all I saw were bright red brake lights. I hit the brakes but it was too late. CRASH! Right away I looked back at Faith and she had a look of surprise on her face. I asked her if she was OK and she said she was. I was so thankful that instead of being buckled in a regular carseat, she was buckled into her adaptable carseat that offered her extra support. (We

I love taking Faith to school and seeing all of the kids coming in and out the doors. I laugh to myself when kids come flying in while the final bell is ringing and it's usually the same kids everytime! I watch the girls walk arm in arm whispering their secrets to each other and the boys being told to walk and not run. There is just something refreshing about kids being kids, laughing, talking and hanging out with each other. But there is also something I see that makes me sad. There are some kids with disabilities, some in wheelchairs, who don't seem to have any friends. I see a little boy sitting at the end of the table at lunch quietly keeping to himself. I never see him with a friend. There are also other kids, mostly boys I notice, who may have more difficulty walking who don't seem to have any friends either. And of course it makes me wonder what it will be like for Faith when she gets older. Right now, the kids in her classroom adore her. Some of them stop and sa

One of my favorite sounds in the whole world is to hear Faith sing. She has such a sweet little voice and to hear her sing always brings a smile to my face. I really get a kick out of her singing when she's driving her power chair down the hallway. As I slowly walk behind her she belts out, "1,2 buckle my shoe, 3,4 four shut the door..." She reminds me of me singing along to the radio while driving my car. But for her - she doesn't need a radio! When we are in the car together I have KLOVE playing on the radio and she always asks, "what's this song called?" She listens to the song then the next one will come on and she'll ask the same question. Sometimes I don't know the answer and I'll tell her, "I don't know what this one is called." Then she'll say, "It's about Jesus." There are some Christian songs she knows the words to and when she sings along to those I am so proud of her for listening so well to the

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