Still Here

Gosh, I keep meaning to come back to this blog and post more regularly, and then it becomes a daunting task. But I will dive in, even if it’s just with a brief update.

Where are we now – C is walking in her walker, albeit very resistantly. She is talking and speaking in a way that’s amazing me. Certainly her speech is slower than her sister’s, and easier for “familiar listeners” to understand. But she can tell me about her day (I scratched my face, Nanny put on my pajamas) and ask me for things (Sit down! I want up! I want to play with puppy! I want my own bike!)

Milestones, well they move slowly. We still work on that elusive sitting. We worry about hips and bones and see more specialists now than I can count. I have some thoughts on the medical system, and the siloed nature of specialties, which I may come back to at some time. The reality is that helping C achieve her maximum physical potential requires daily labour, and it’s not something that can be fixed with a pill or a surgery, although those things may be tools along the way. So her core treatment remains therapy, mostly implemented by us, her caregivers.

I struggle sometimes with the battle of it. Things like going to preschool, parking at the hospital, having place to play, not being stared at, getting the right funding for her equipment in a timely way – all of those things require a lot of emotional energy. Sometimes it’s just mentally exhausting having to beg and plead for dollars. That is the biggest challenge, more so than the fact that we spend half an hour each night rolling on the floor and laughing and reading books and calling it therapy.