Friday, December 18, 2009

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The Waiting Room - Our Little Community

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 young patients is in the backroom getting Botox injections.

We can tell when there is a visitor amongst us. First-time families whose children need physical, occupational or speech therapy. They tend to look a little longer at a child in a wheelchair, puzzle over what is going on during an enteral feeding, wonder why some children make silly sounding noises in order to communicate. The rest of us look and smile, trying to make them feel welcome. We understand their worries, their fears, their anxiousness.

For some of those in our little community, mere socialization turns into friendship. We call one another, send each other Christmas cards, give new babies in the family gifts and set up play dates for the kids. We are our own little community and it helps us get through the life of having a special needs child a little easier and a little less overwhelming.

Tuesday, December 8, 2009

Lots of Rest - the Best Medicine

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 most of that time. We also had respite care for an overnight and even though I had a four hour nap, I was still able to sleep most of the night.

After all of my rest, I was finally feeling better over the weekend and I even felt like I had more energy. Unfortunately though, at my doctor's appointment on Monday, my O2 sat. was still below 90% and she could still hear "crud" in my lungs. She put me on another round of antibiotics and also tested my thyroid, iron and checked for mono.

I was a little discouraged after the appointment. I miss taking my daughter to school and chatting with her teacher's aid and the other moms of half-time kindergarten students. I am also just tired of not feeling well. Today, however, I didn't want Faith to miss another therapy appointment so I did get her there and it went well, despite the cold weather.

So while the apartment continues to not get cleaned, paper piles up waiting to get filed and respite care takes over bringing Faith to school, I will continue to rest. I will also continue to pray that Faith will have more nights of good sleep. It really is the best medicine.