C’s little custom chair sits on an old stand that we borrowed from the hospital. It has a desk so she can have toys in front of her. Â But at the end of the day, it’s still a very passive thing.
C is becoming less passive. Â She has learned to nod for “Yes” as in “Do you want a baba?” Nod. Â “Do you want uppa” Nod. Â Did you like the Christmas tree? “Nod.” Â She hasn’t mastered the shake, but she does have a little “Na” that she is starting to use as “No.” Â As in “Do you want to go in your walker?” Na. Â “Do you want to go to bed?” “Na.” Â She also started saying “Hi” yesterday over and over and over in response to to our “His!” Â Her mouth, like every other part of her body, is affected by her CP, and so these words are very precious.
But now that she can ask what she wants it’s hard that her only option is the passive option, of sitting and us bringing the toys to her. Â I found myself wishing the chair had wheels lately, as she hates to be left alone in the living room as the other three move into the kitchen. Â The other day I dragged the thing in front of the fridge so she and B could knock magnets off the fridge and she loved it.
And I wondered,Â am I wishing for a wheelchair? We’re still waiting for this walker – after months, it has been approved and ordered, but we have no idea when it will come – maybe just a few more weeks. Â That will help because unlike her current “stander”, it doesn’t have a tray blocking her and the real world,, and is lighter and more manoeuvrable. Â And she is working on walking and loves the treadmill. Â Part of me thinks that we don’t want to let her “rely” on a wheelchair when she has this chance to walk. Â But are we depriving her of things in the meantime? Â The reality is her stamina even for her interim walker, which she uses as a stander, is limited. And how different would it be to have her sitting in a wheelchair that moves as opposed to the hour or two she spends in her little stationary chair? Â We’d still do tummy time, we’d still practice walking. This is a strange shift mentally.