08/15/2026
Summer so far. 🩷
These months of good health have allowed Milanah’s body to do so much growing. I’m really seeing it in both her height and her weight, and it’s such a beautiful turnaround to be living in.
Last summer she was still frequently ending up with pneumonia, and I was still living in that constant fight or flight mode. Last year was exhausting. When summer rolled around and she was still getting sick so often I was scared of what the future might hold for her. I never could have imagined that just one year later she would be doing SO much better. 🥺
This summer Milanah graduated senior kindergarten, she lost her first tooth and then her second, started swimming in the deep end of the pool (with her floaties, but a win is a win 😂), made endless mud cakes, had lots of beach days, and had her first weekend away sleepover with her Aunty Loretta and Uncle Bill.
Yet one of the biggest milestones of all? She hasn’t been sick once this summer.
What a whirlwind of a difference from last year.
I guess sometimes no update really is the best update. Maybe we’re finally out of the woods? (Is it safe to say that here now?) Maybe this is the part of life where we get to just “be” instead of constantly fighting our way through.
It took me a while to settle into normalcy. For a long time, normalcy and good health actually felt uncomfortable because I wasn’t used to them. As a medical parent IYKYK. Now do not get me wrong… I was over the moon that Milanah was finally experiencing the good health we had fought years for. But when your brain has spent years getting used to chaos sometimes calm can feel unsafe. And I’ll admit I struggled so much with that.. I remember crying to my mom because why did good health for Milanah feel so anxiety provoking in the beginning? I truly felt like I had to learn how to be a different kind of mom. Because before that my whole motherhood experience had rooted and grown through extreme situations.…It’s like a lotus flower that learns how to grow in the mud. It grows roots there, It learns how to survive there. And somehow despite the environment it was given it still manages to become something beautiful. But what happens when you suddenly take it out of the mud? When you cut those roots free and place it in clean still water? The water is safer. It’s everything you hoped for, yet the flower doesn’t know that yet. All it knows is that the environment it learned how to survive in is gone. I think that’s what this last season of motherhood felt like for me. I had spent years learning how to be Milanah’s mom in the mud through hospital stays, sickness, fear and constantly having to fight for her. Then suddenly we were placed in clear water and I had to learn that I didn’t need the mud anymore. I could stop surviving and trust that maybe we were finally safe enough to just grow.. It took time. Maybe that metaphor makes sense to some or maybe just me I don’t know. But I wouldn’t be honest if I didn’t share that part of this whole experience because I feel like other medical parents could relate.
For the first few months I struggled with that more than I expected. My brain had spent four plus years staying on alert, always waiting for the next illness, next hospital visit, the next thing I would have to watch her experience. But I can finally say it’s been calm long enough that my brain has settled here. The calm doesn’t provoke anxiety anymore. I’m not constantly waiting for the other shoe to drop, maybe this really is our new normal. And after everything it took to get here, what a beautiful normal it is.
