Henry moved through January at full toddler velocity with big feelings, big laughter, and big movement. Henry claps like it’s a profession. He celebrates his brother with his whole body, clapping for his wins and often giving him full-body hugs. Henry added another full-time role this month: Chief Enthusiast of Baby Shark. The doo doo doos of the Baby Shark soundtrack echo through a house that also runs on medical equipment and alarms. Toddler joy and complex care, side by side.
Frankie moved at the careful, watched-over pace that defines life in a medically complex body: numbers, settings, outputs, meds, and appointments. But January also gave us so much Frankie. More personality. More spark. More of his sweet, expressive face that tells me exactly how he feels if you know how to read it. He has this quiet determination that shows up as joy, the kind that lives in eye contact, in the way he locks in on you, and in the little flashes of pride when he does something hard.
He is my little shark in deep water — not splashing loudly, but steady, aware, and so much stronger than he may appear to some.
We were loaned a gait trainer from Shriner’s Children’s Hospital, and I am blown away by his motivation to move. I’m asking him to work muscles in ways that don’t come easily, and he’s crushing it. There are moments where you can see it click for him, where his eyes get bright and his whole energy shifts like he knows he’s doing something big. It’s impossible not to feel his joy, effort, and fight wrapped in such a gentle little body.
My private insurance stopped covering home nursing effective January 1. I had to transition to what Medicaid will provide, which is a maximum of 18 hours a day, not 24. January was brutal as we shifted schedules. My mom stepped in again and again to fill the gaps. February looks slightly more stable. But 18 hours still isn’t 24. We’re still stretched. Still swimming, even when the water feels heavy.
I am now also pursuing a second opinion at Children’s Nebraska. Frankie’s anatomy, history, and responses have never followed a tidy script. His team at Primary Children’s continues to prescribe textbook next steps, and I am beginning to feel we’ve hit a wall in their understanding of what to do with a very proximal jejunostomy kid. I’ve been told over and over we have one shot to get his surgery right. The timing has to be perfect. This major surgery will affect the rest of his life and whether he can ever safely tolerate food by mouth. I need to find him the best gastrointestinal surgeon and team I can safely get him to. I’m walking into this second opinion hoping for wisdom, experience, honesty, and the kind of surgical judgment that can change the trajectory of a child’s life.
Right now, “still swimming” doesn’t mean things are calm. It means moving forward even in uncertainty. Even in deep water. Even with shark songs playing in the background.
Frankie’s version of two isn’t measured in words and running. It’s measured in resilience, in determination, in connection, in the way his face lights up when he hears my voice, in the joy he shows in his own ways. He is not just enduring this life, he is in it, responding, trying, showing me who he is every single day.
Henry’s two years are big energy, big love, and full-volume joy — plus shark choreography. He’s growing up in a story most kids never know, and it’s shaping him in beautiful ways.
These past two years have meant living in constant role-switching: mom, nurse, advocate, coordinator, researcher, comforter, and the one making high-stakes decisions on little sleep. We take this life as it comes, one day at a time, still swimming through shark waters while I navigate insurance hurdles, push for the nursing support Frankie needs, press for answers, stand firm with providers, piece together care across broken systems, and pour everything I have into giving my boys the best life I can.
