One of the small pleasures of knowing someone with cognitive and speech differences is the words they invent to express something very profound in a simple way.
Elbow Team is something that our daughter began saying that means:
"We're on the same team." or "I'm happy we're going through this together".
Our daughter has several challenges in her life: She has a brain injury from meningitis she contracted shortly after birth. Her brain cannnot control the pressure of the fluid around it without help, so she has a special valve that does it for her. She has had almost a dozen brain surgeries in half as many years to keep her brain pressures safe. She also has an untreatable seizure disorder that causes her to have mini-seizures hundreds of times a day. Structural differences in her brain make her functionally blind, even though her eyes themselves function well. She has Cerebral Palsy, and autism and sensory issues. On top of it all, she has an undiagnosed genetic disease that is being studied by the NIH to find other kids like her and maybe someday a treatment.
In all of this, she brings an indominable spirit to life. On paper, she should not walk or talk, but somehow she's surprised her parents and every doctor. She wants to do absolutely everything. We're here in Florida celebrating her... Her ideal disney trip won't look like almost anybody else's, but we're here to give her our best!
Our Daughter is loved SUPER HARD by her big bro! He's been through a lot too. He's eaten on the porch when his sister doesn't want anybody near her. He's been through scary stuff like EMTs coming and taking his sister to the hospital, sitting at home with Mimi waiting for news from her latest brain surgery. And boring stuff like not getting the attention he deserves or his family not having as much freedom to take him to activities, trips or one-on-one time that a kid with a typical family would get.
Our son is such a great Big Bro, and we couldn't be more excited to have him on this trip with us!