Today, we saw yet another specialist in our ongoing fight to give Abby the best life possible. I won’t get into the procedure we were there to discuss, because honestly, that’s not the part that’s sticking in my gut right now.
What is sticking with me is this: there is a silent, cruel line in our healthcare system — one that no one says out loud but every complex medical family eventually hears.
It sounds like:
“This might help, but it’s not covered.”
“It’s usually done before age 21.”
“It’s a lot of work, and I’m not sure it’ll be worth it.”
“Have you thought about something more… permanent?”
Translation?
“We didn’t expect her to still be here.”
“And we didn’t plan for it if she was.”
It’s the unspoken policy behind so many of the denials, delays, and dismissals we face as our kids grow. There’s funding and sympathy when they’re young, hopeful stories when they’re newly diagnosed, awareness campaigns when they’re still “cute.” But transition into adulthood — into actual longevity — is met with red tape, closed doors, and a quiet kind of cruelty.
We don’t talk about this enough.
We don’t talk about the emotional gut-punch of sitting in a room with a doctor who shrugs their shoulders at your 20-year-old daughter like her expiration date is fast approaching.
We don’t talk about the tone shift when your child goes from being someone they want to “save” to someone they suggest you should just “manage.”
And we definitely don’t talk about how exhausting it is to have to educate the professionals. To walk in more informed than they are. To spend weeks researching options, only to be met with doubt or disinterest because they don’t know what to do with a medically complex adult.
Here’s the thing: our girls are growing up. Abby is growing up. She has value. She has dignity. And she deserves better than a system that sees her age and starts quietly pulling back its support.
She survived. And that should’ve been the beginning — not the disqualification!
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