For the Love of Ivey

And just like that an initial video telemed for transitioning one major component of Ivey to Emory ended with her next procedure to happen there. I thought the telemed was a consult, a plan, a schedule to see her first. Nope, with the click of a button, Ivey's next procedure is at Emory St. Joseph's. Well, I didn't see that coming. I fought the urge to say NO! Wait.... wait... wait... not yet. Not next week. I'm not ready. So two things are going on simultaneously. A medical complex parent will get the struggle of the two opposing forces. A medical need was solved; on the other hand, I'm scared out of my mind to leave Children's Healthcare of Atlanta . In the beginning we didn’t want to be there. And we lived there often for days, weeks, or months at a time. In the middle, it never occurred to us years would go by so fast, that one day we would leave. The hardest, also in the middle, it was uncertain her future, how would she leave? At 18, we saw th...

So, why Disney? It’s a different kind of joy. It’s also a little defiance. There’s this video that parents of kids with disabilities post. The video is a reference to the catastrophic changes that happen upon learning of a diagnosis. Hurricanes. Exploding volcanoes. Natural disasters. I can say without fail, I felt every biblical revelation. Back to Disney. I can talk about DAS, cast members, accessibility…. But it’s more than that. It’s proof of defiance. A choice. Either try or forever wonder. Get on the ride or assume she’s breakable. I put her on each ride. I make a choice. It may seem trivial. But over the years, each choice for "Bigger" has an equivalent mental choice to defy what should be the obvious. What looks obvious. Keep it simple. Slow. Gentle. After all, she looks fragile. Once upon a time Katy Blankenship and I put Ivey on Thunder Mountain. Matt and boys were across the park. I was terrified. Katy didn't have a second thought. I had ma...

25 years. The silver anniversary- and as you can see in the progression of photos- I have adequately added every silver hair on Matt’s head. We forgot to order our wedding pictures- we only have the proofs and snapshots that were taken at the reception on those disposable cameras we all scattered on tables for guests to use. They are the best! The time before cellphones. Matt and I are terrible about taking pictures together. Most are pictures of us and our kids, their friends, our friends, a random sunset at the farm, trips we’ve taken. My advice to those three babies that are ours- marry the person you can suffer with- marry the person who can walk through the fire- marry the person you can throw a cheeseburger at their head on a random Tuesday night dinner and then laugh together the next day because you missed- you would think I have better aim- marry the one who will stay during sickness and health, especially when it’s one of your children. If you marry a woman like your mo...

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 I am finally admitting that asking for and needing help doesn’t mean I’m failing at being “her” mom… or just being human.  It's strange how having a child with disabilities distorts reality, or common sense for that matter.  I was and am a different parent to the boys than I am Ivey.  I parented the boys in a cluster of friends.  Playdates when they were young.  Sports.  Drop-offs to birthday parties, friends' houses, conversations in carlines, the never-ending awards ceremonies at the school.  Lunches with friends discussing parenting strategies, parenting wins, parenting fails. A network of moms doing this parenting thing - together.  Can you grab them from school - I'm stuck in a meeting, running behind, late coming back from an appointment?  We are heading to the beach, can your son come along?  There's a stomach bug going around, did you take yours to the pediatrician?  Who all is going?  What time did ...

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...