Faith's Mom's Blog

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

Adults Living with Congenital Heart Defects

Today was the day I saw my cardiologist who comes to Bismarck from Mayo Clinic. Today was the day of my annual echo cardiogram which is basically an ultrasound of my heart. And this appointment was no different than what my appointments have been like in years past. (Except for the fact I was only there for about 30 minutes as opposed to two hours). It was business as usual when I went up to the pediatric floor of MedCenter One. You see, technically my cardiologist is a pediatric cardiologist. But since babies with congenital heart conditions eventually grow up, there is a need for cardiologists who specialize in adults with congenital heart defects. I'm not sure if the receptionists quite get this. Every time I call to make the appointment, the receptionist on the other other end of the phone asks, "and who is this appointment for?" "Me," I answer trying not to sound exasperated. And every time I check in for my appointment the receptionist looks around expec

If You're Curious About My Special Needs Daughter, Please Ask Questions

Coping with the News that Your Child has Special Needs

Adaptive Toys for Special Needs Children

Make a Smilebox scrapbook

In the waiting room, at pediatric therapy, I am known as Faith's mom. Just as others are known as Ashley's grandma, Luke's grandma, Chloe's mom, Abby's caretaker. At first, we were just a familiar face to one another. But as our children and grandchildren came for therapy more and more, we began to talk. We compared stories. We asked each other questions. Our waiting time has now become social hour. We have become our own little community - supporting one another, offering prayers and talking to those who know exactly what we go through. It's not just the parents, grandparents and caretakers who share a special connection with one another. It's also the three receptionists who sit behind the desks. Some children, like Faith, have been going to therapy for years. They know our backgrounds, they know when we aren't feeling well and most of all they know and understand our children. They laugh at the children's stories and they cry too when one of the

We had a small miracle occur in our household last night. Faith slept in her own bed until 6:30 in the morning. She woke up and I got her back to bed and she slept another couple of hours before I had to wake her for school. This morning I felt so well-rested that I didn't feel the need to sleep while Faith attended school. Last week, that's exactly what I did. After seeing another doctor, actually a cardiologist, I found out my O2 saturation was down to 87% and I had pneumonitis . I was having major shortness of breath so I was concerned there was something going on with my heart. He told me to finish my antibiotics and get lots of rest. He also said it wouldn't be a good idea to walk Faith to school and back home. Thankfully, we were able to get someone from respite care to bring her to school and back. And while she was in school, I slept. On Friday Faith stayed home from school because she was coming down with a cold but we had respite care from 1-5 p.m. - I slept mos