The Exact Same Words
Today I sat in a doctors office with Kenzie and spent most of my time keeping her hands off any medical equipment that was in there, and keeping her in the room each time the door opened.
Before that we were in a large waiting room and those are always the hardest. Wide open space with other kids and parents who are no doubt tired, and for sure don’t want a strangers kid walking over and grabbing a piece of their muffin.
Open doorways that a child can dart out of at any time and 4 versions of the same toy that entertains a child for about 4.2 seconds.
When chatting with the doctor he actually asked me what I preferred him saying? Down syndrome or T21? Such a nice gesture, to give me the opportunity to say that I just prefer people don’t say “Downs Kids”, and after that we agreed he should just call her Kenzie.
I thought, wow! This is the first time a doctor has asked me this, and we had a conversation about it, with a medical student in the room to boot!! Things are changing, I can feel it.
Then we had to wait in the waiting room for another 20 min and by the time the nurse came out with all our paperwork I was a sweaty mess holding Kenzie under one arm and giving back a child’s toy with the other. Needless to say, this “quick follow up” appointment left me exhausted, as they all do, because having a child with special needs can be hard sometimes.
And then, the nurse referred to Kenzie as a “Downs baby” and that her reaction to surgery will be different from a “normal kid”.
There it is. The exact same words I heard 2.5 years ago before Kenzie had eye surgery. The exact words I wrote to the hospital about and asked them to just consider terminology with parents. The exact words that had me standing in front of 150 nurses 2 years ago giving a speech about being a parent to a child with special needs.
The exact. same. words.
And it made me a little sad. But mostly, it made me f-ing exhausted. Because the advocating will never stop, not if I want to make + see changes for my daughter.
I was already tired, and sweaty and trying to keep Kenzie from going behind the reception desk - and then I stood there not listening to a word that nurse said because all I could focus on was whether I should say something or not.
This is the life of a special needs parent : weighing the benefits to your child against your level of exhaustion.
So. Today I’m tired, and a little defeated. And after I post this I’ll go back and watch our Pink concert highlights, because that was a really good day where no one said anything about Kenzie not being normal.