02/03/2026
A powerful post from a powerful mother. Shared with permission.
(Long post but important)
When the Snow Days Bring More Than Snow:
This week has been… a lot.
We’ve done a little bit of everything, and somehow too much of everything at the same time. Lyra is a lot—beautiful, complex, demanding, extraordinary. I know this. But knowing it doesn’t stop my brain from feeling stretched thin every single day. Some evenings, after caring for her, I’m not sure I have anything left for myself. I worry about my capacity—my mental bandwidth, my emotional reserves, the invisible load I carry.
Caregiving is unlike any other kind of strain. There aren’t enough words for the way it chips away at you while also filling parts of you no one else ever sees. And this week of snow days has brought back a wave of PTSD from last summer—long days, no breaks, and the countless moments where I just broke down. People outside this arena don’t always understand. Honestly, how could they? When others are out doing fun activities on days like these, I often can’t even fathom the bandwidth required to make that happen. And when I can’t, I’m left feeling like I’m failing on so many levels.
Our brains weren’t built for this—no one’s were. This whole system, this expectation that families can shoulder everything, is new in the grand scheme of things. Maybe 50 years old. Maybe even less. Most institutions were shut down in the ’90s—and thank, God. Prader-Willi would have been a qualifier, and I cannot, cannot imagine her living in one of those places. The thought alone makes my stomach drop.
But here’s the part people don’t talk about: when those institutions closed, states promised services. Big promises. After all, running institutions was a massive expense; supporting people within their homes was supposed to be more economical—and better for families, better for humanity.
Except… the services never came. Funds went elsewhere. And now thousands of families across the country sit on waitlists so long you practically need a decade to climb them. We’ve been on ours for three years. We’re not even halfway up.
So we wait.
We wait for funds that would help give Lyra more therapies. Funds to offset the expenses we pay out of pocket. Support inside our home—a respite worker, someone to give me even a tiny breather. Financial support for the care I provide, because there is no longer a facility doing it. I am the facility now.
And that’s not even touching on how brutally hard it was just to get on this list. We were rejected three times before we were finally approved.
There is so much wrong with the system. So much that needs to be talked about.
And let me be clear: I will never complain about her being home. Never.
But I will complain—loudly—that the support for caregivers is nonexistent. I will speak up about the cracks families fall through every single day.
So on snow days, yes—I struggle. Not because I want pity. Not because I love my child any less. But because this is our reality. A reality many people don’t even know exists.
And maybe if more people knew, more could change.
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Picture from a school worksheet today. She chose Ill. I'll put the picture in the comments that we ended up finding after some struggle. I love how she said it's holding coffee, like her mama.
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https://youtu.be/AmKMtH9ZutI?si=s_R46eaqZ-c92dsd
Center for Excellence in Disabilities at WVU
WV Developmental Disabilities Council
Kayla Young
Pushkin for WV
Senator Jim Justice
Jim Justice
Senator Shelley Moore Capito
Shelley Moore Capito
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This is written by Moon & Mountains
Feel free to share, but do not remove my name.
These are words from my heart.
