06/04/2026
Payton has cerebral palsy.
This isn’t new, nothing has changed for her, but we officially have this diagnosis.
We met with a movement specialist at the beginning of March and he told us he was a cerebral palsy expert. A few times throughout the visit he mentioned the term cerebral palsy and at one point I had to stop and say, “you keep saying that...but no one has used this term with us before.”
He paused for a moment and then explained what cerebral palsy fully means. Essentially, it encompasses a variety of presentations, but the three pillars are:
1. Have a movement disorder
2. Be present since infancy (under 1 year old)
3. Not be a degenerative disorder.
So cerebral palsy could be from a birth complication, a brain infection that leaves deficits in a 2 month old, or a car accident with a 6 month old. I (mom) honestly had no idea.
He also said that this term is mostly for insurance companies - and also other services such as school - as hearing cerebral palsy automatically helps them understand what a person might need.
Getting services covered through insurance is much easier when they see that diagnosis come across their desk.
He also said if you’re traveling and tell the airport, “my child has cerebral palsy”, they’ll have a better idea of what you may need than if you say “my child has holoprosencephaly.” (Payton’s brain difference)
It took me a while to be ok with this new label. The first few days were full of heartbreak.
When you have a medical chart as long as Payton has, adding another diagnosis to the list feels like another gut punch.
“It’s another label that they’ll see instead of seeing Payton.” That’s how it felt. And why I haven’t really wanted to say anything for a long time.
But we are here to keep advocating for and loving this wonderful and precious little girl. And we are so grateful for her happy spirit - she is truly a gift.
