A year ago, we were still hoping we’d get out of this whole CP thing, perhaps with it not being too noticeable or too obvious. Based on what we’d been told, we knew that was probably unlikely, but we were still hoping. At that time, the thought of a kid who needed a walker, or a wheelchair, was kind of terrifying. Four months ago I bristled at the idea that we needed supportive seating – I still want her to sit independently, ASAP.
I’m learning patience. I still do want those things to happen – walking and sitting. We still work very hard, several times a day, to get her sitting, rolling, bringing things to her mouth, touching her toes. And we see results from that. Today she grabbed the curtains as I went past, which she could not have done a month ago. But we are getting referred to a centre that will provide us with “equipment.” We are talking about getting her a walker. Except now I’m excited about a walker. I still hope this equipment is a stepping stone in helping her eventually walk and sit independently. But I see how much C wants to sit up and be part of things, and how lately she gets left behind on the living room carpet while the other kids move from room to room. The possibility of equipment is no longer scary. I’m actually relieved that her therapists think she may be capable enough to move with a walker.
And that’s me, jogging along the path of acceptance. I still strive to be like one mother I met who said, without pausing, “I wouldn’t change it.” I can’t say that quite yet. I’d love things to be easier for her. But I do know I can’t change it. I still find I have triggers that bring me back to the NICU and birth and reliving it all over again. There is still a boatload of uncertainty. But I’m learning that instead of suppressing those feelings, I need to just RUN INTO them full force. Let them wash over me like a wave. Then I can take a break and say “Walker, here we come!” At least I hope we’re coming. Like everything in this place there’s a wait list. If it takes as long to get a walker as it did to get someone to give me some advice on feeding, we may be waiting awhile.