I’ll be honest with you. Like really honest.
Bella is okay. Healthwise, she’s doing great. And I thank God for that every single day.
But here’s the honest truth. My truth. I still feel awful about this page.
I never wanted this. Not even when she was in the hospital, hooked up to machines, fighting for every breath — I didn’t want people worrying about us then, and I don’t want it now. That’s just not who I am. I have always needed to be the one who holds it together. The one who says “we’re fine, we’re good, God’s got it.” And we ARE fine. And God DOES have it.
But here I am anyway.
And the guilt is real. I lay awake thinking about it. I think about our friends and family carrying this now — our worry becoming their worry. I think about every future family trip, every outing, every normal moment — and I wonder if we’ve forfeited the right to those things now that we’ve asked for help. I know that probably sounds irrational. But that’s what my heart does at night.
This isn’t a story about a family who can’t make ends meet. Our life was okay. It was good. This is a story about a government that changed the rules without thinking about the families who would fall through the cracks. Families like ours. And now we’re here — with a daughter who sees 11 specialists, who has never once stopped fighting, who did a whole PowerPoint presentation last week just to prove the doctors wrong one more time — and we can’t get her to her appointments.
I almost wish I could take it all back.
But then I think about her. And I know I can’t.
So I’m going to keep showing up here even on the days it breaks me a little. Because she never stopped showing up. Not once. Not in 471 days in a hospital. Not in 13 years since.
The least I can do is show up for her now. 💜