Namine met with her pulmonary doctor. We were met with unexpected good news.
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.