Have you ever heard (after something that rocked your world) that it’ll be ok, you’ll find your “new normal” and you’ll just adapt?
My kid-only one I’ll ever have due to cervical cancer when he was a year and a half old, but that’s another story. My kid, my baby, has Asperger’s. That’s the diagnosis that people understand. I almost never talk about his diagnosis with pseudohypoparathyroidism, because for 1, it’s a mouthful, and 2. Nobody’s ever heard of it.
Hunter was diagnosed with hypothyroidism at about 18 months. I actually found out he had hypothyroidism and I had cancer on the same day. The Asperger’s diagnosis came when he was 7.
Pseudohypothyroidism is relatively new to us. The diagnosis was only a couple years ago. It’s a genetic thing. It explains why he’s short and a bit heavy. It explains why he has short fingers and three toes with no joints. It explains why he has dimples for knuckles. The brave kid gets a blood draw and x-ray every six months to see where his growth is and where his hormones (thyroid) are.
He sees a specialist–a pediatric endocrinologist twice a year. Today was that appointment. Hunter is now a bit over 5’4″. His doctor told us 5’5″ would likely be as tall as he would get. His doctor wanted to run some more tests today to see what other hormones he’s immune to (testosterone is one of them).
As I was laughing with and arguing with my son all through the appointment, it suddenly dawned on me–this is normal for us.
We have our “new normal” and while nearly nobody understands; pseudohypoparathyroidism affects 7 out of every million, it’s just our lives.
I don’t talk about it much because there’s truly nothing wrong with the boy. He’s talented. He’s brilliant, and nothing can stop him.