I belong to a few support groups, one in particular being a Facebook group for Pierre Robin Sequence awareness. A question was posed today:
A question to parents with older PRS kids. what has having a child with PRS taught you, how has it changed you as a parent/person?
Namine and I now apparently have what Jessica had last week. I thought that I had gotten the worst of it, but Namine woke up with a crouping cough this morning. Despite her being sick, though, she nearly always keeps it together and stays cheerful.
As Namine gets older, she gets ever more independent. But even as she grows, learns, and develops, the little things she says and does remind us that she is our little love. She is God’s gift to us, and we treasure her more each day.
Today Namine had an allergy test at the hospital, but as usual, we got a little more excitement than we bargained for. She threw up at the clinic, so I had to call my mom to bring some spare clothes. (Of course I was stuck at work, otherwise I would have done it myself.)
There are no gunpowder, treasons, or plots here. Just a little thing called decannulation. That’s right, kids. A year ago, Namine got rid of her trach, and her entire world changed.
I’ve seen quite a bit lately on Twitter about grieving your child’s special needs. Most often, this applies to autistic kids (kids with autism? I won’t get into a semantic debate with anyone), but it also pertains, really, to any disability – whether “visible” or “invisible.” And I think it’s a load of crap.
Tomorrow we have to be at Children’s Hospital at 9:30 for surgery. Not that the surgery itself is that early; no, it will be about two hours later, around 11:00 or 11:30. Most of the day will be waiting on our part – waiting for them to come and take her back, waiting for the surgery to be done, waiting as Namine is in recovery. The ear surgery is not likely to be long, but they do still need to put Namine to sleep.