We’re back in the hospital, and I’ll be honest — this time feels heavier than the last. I’ve cried more these past few days than I can even count. Maybe it’s because the reality of it all keeps stacking up. Maybe it’s because I’ve been holding it in for so long and the cracks are finally showing.
There’s guilt. Endless guilt. I feel guilty that I can’t take this from her. Guilty that she can’t live a “normal” 13-year-old life. Guilty that sometimes I’m stretched so thin between three kids, hospital stays, and life that I wonder if I’m giving enough to any of them. And then, on top of the guilt, comes anger. Anger because this isn’t fair. Anger because she shouldn’t have to fight these battles. Anger because no matter how strong I try to be, sometimes I just want to collapse and admit that this life is too much.
I think about her future constantly, and it terrifies me.
- Will she ever be able to go back to school full-time?
- Will she someday need a transplant or lobectomy?
- What does her life look like 20 years from now?
- Am I even doing everything right for her in this moment?
The unknown is scary, but so is the present. Right now she’s on precautions, which means she can’t leave her room. The isolation wears on her. She has her moments — frustration, sadness, boredom — and who can blame her? To pass the time, she colors every day, watches movies, and tries to make the best of it. But I see it in her face, I hear it in her voice — she feels the weight too.
And I feel torn in a million directions. Being here with her means leaving Brantleigh and Maveryk behind, and that guilt stings too. Michael has to work, so the back-and-forth between hospital life and home falls on me. Finances pile up — gas, food, the little things that no one thinks about when you’re living in and out of hospitals. Then there’s the stress of navigating care, communicating with her Dallas team and this local team, trying to educate, trying to advocate… it’s nonstop.
I wish I could take it all from her. Every poke, every procedure, every isolation day. I wish I could trade places so she could just live freely without this constant cloud hanging over her. But I can’t. All I can do is be here — to love her, to fight for her, and to let myself admit that sometimes, I’m struggling too.
Someone told me recently: “No one gets to choose whose bad times are worse.” And they were right. Hard is hard. Pain is pain. What we walk through doesn’t need to be compared. It just needs to be acknowledged.
So here’s me acknowledging it: this is hard. This time, I am not okay. And that’s okay. Because sometimes strength isn’t about holding it all together — sometimes it’s about letting yourself fall apart.
But even in the thick of it, I find light in the little things. Her laugh while watching a movie for the hundredth time. The way she focuses so intently while coloring. The small moments where she smiles despite everything going on around her. Those moments remind me that joy can exist right alongside the hard. And maybe that’s what keeps us both going — the reminder that even when life feels unbearably heavy, we can still find pieces of light to hold onto.
With love,
Kursti, Founder of Breath in Bloom Collective
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