Being honest here... I don't know what to do when Paige utters this statement.
Paige has very mild CP. You would not know it by watching her on the playground. She runs and swings and can maneuver the monkey bars like a pro. When she is with her peers, the CP is a little more noticeable. Nonetheless, most people still cannot tell.
Does that mean that she does not have pain?
Paige started telling docs that her legs were hurting as soon as she could form sentences. The first neurologist patted her on the head and told her that her legs really don't hurt. He said that she could climb up on the exam table so she must be fine. She was so sad. (yes, we fired that neuro) Other neuro's admitted that her legs were very tight but she must not be in any pain because she was so active.
Yet another case of "she looks good to me."
When we moved we started seeing a new neurologist (for her epilepsy). During the very first visit, and during the first 5 minutes of the appointment, she told him that her legs hurt. He listened. He told us it was because she has CP. That was the first time she was diagnosed. Age 6. This neuro put her on pain meds, which Paige took until they didn't seem to work anymore. We let her decide and she chose to try to handle the pain and stop the meds, mainly due to the side effects and the fact that they didn't work.
She has never been able to walk long distances. She only has short bursts of energy. She has been asking for a wheelchair for about a year. Her neuro has even offered to let her out of certain activities (mainly long distance running) in physical education class. I have never agreed to any of it.
I'm afraid she will give up.
Recently we were headed to the mall. We knew we were going to be there for a few hours. Paige was very upset and begged for a wheelchair. When we go grocery shopping she sits in the big part of the cart. But there are no carts at the mall. I told her that we would take breaks. She was so sad. "But Mommy, I NEED a wheelchair!" I think she is in a growth spurt because her legs are even tighter than they have been before. She has pain daily.
Hubby and I gave in.
Hubby pushed her while I pushed her brother in the stroller.
I held back tears.
Paige was the happiest I had seen her in the longest time. Every so often she would get down and run around. When her legs got tired, she got back in the wheelchair.
All was good. Then we ran into one of the secretaries from her school. The look on her face said it all. "What the heck is she doing in a wheelchair. She looks fine to me."
At the end of our trip, she thanked us for the wheelchair and asked us if she could get one of her own. She wants purple.
I'm not sure why I'm having a hard time with this. Maybe because I know what people will be thinking (about hubby and I-not what they will think of the wheelchair). Maybe because I am so afraid she will give up. Maybe because I am still hoping that all of the lasting effects of prematurity will just go away.
I don't even understand how she can have so much pain. I've watched her run around the playground... she looks good to me too.