For the Love of Ivey

Transition is a big moment for someone with disabilities. Transition to school, in school, and out of school. But medical transition for a medically complex patient with multiple specialists, is a massive transition. Even though Ivey has the Medically Complex Care Program at Children’s, the transition is vast. Passing the torch cohesively to the adult medical world is near nonexistent. Children’s is talking and prepping me, but the actual transitional move of Ivey’s medical care is all in my hands. She will no longer be under one umbrella with a single medical Home with no one who knows her history. Depending on the body system, she will be dispersed across hospital campuses. The sprint to 21 is in motion with one to two office visits left with her Children’s team members. So many major decisions to make, new doctors to meet, protocols to be formed in the next few months, with everything to be in place and ready the day she turns 21. Twenty years ago, as overwhelming as it was in...

Twenty years in and finally realizing asking for and needing help doesn’t mean I’m failing at being “her” mom… or just being human. As I’ve been preparing for her medical transition to adult care, I keep coming back to the intake appointment to the Medically Complex Program at Children’s. Nurse Heather said to prepare that the intake would take at least 2 hours, in reality the appointment lasted 4 hours. Throughout the appointment I had moments of sheer overwhelming raw emotion- where tears flowed and I kept saying, “So she really is more. She really is harder. I’ve been doing all of this alone. You can help me?” Heather just kept saying yes, it’s okay, children like Ivey is one of the reasons the Program is opening. Parents like you need help managing her healthcare. It’s a lot. I kept apologizing for crying. Needing help feels like weakness. Silly, I know. Still, with the Medically Complex Program, her schedule requires vigilance. Here we are, on the countdown to a plac...