For the Love of Ivey

Ivey cast her vote today! . Thank you Aunt Kathy Brandon.

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...

Thank you to everyone who wished Ivey a very happy 20th birthday. She was absolutely giddy with those who sent her recorded messages to listen to! Thank you for knowing her so well and the way into her heart, your voice…….even when I have to text you to let you know she now wants “The Wheels on the Bus.”…and you send it Brooke Ann ! She can be a bit demanding…. It has taken a village, you are our village. Thank you. For Matt and I, we celebrate her every year with gusto. This year it felt even more so. There is an emotion, a quiet accomplishment, a semi-checkered flag, maybe an exhale of sorts. There are no words. Just emotions. Matt and I are in a small club no parent ever wants to be. Specialists all trailed off in those early years with the words … maybe she will survive until childhood. Heavy to know- to not know. We were told Ivey’s first day of life, she most likely would not make it through the night…that night turned into a week…a year….into childhood…then teen years...

The tale of Ivey’s shoes and Disney. It’s a tale as old as time. It’s a tale you’ve kinda heard. It’s legend. Full of hero’s chasing down the princess to return her shoe. Very similar to Cinderella. But different.

Before Ivey, I thought I understood how it all worked in my own interpretation of who God is to me.  Who I believed to be Jesus.  Just a couple of weeks before Ivey was born, I had a conversation with one of my best friends, who would soon take on the role of being Ivey's Godmother and all its unknowing Glory, about the sins of the father mumbo jumbo.  All of which led us down the path of what I believed, what she believed, and the core of the conversation, is God a punishing God?  We had the conversation on a Sunday.  Funny the things I remember.  It wasn't a serious conversation, just an off topic conversation and one that would swing back around in a matter of weeks to be the keystone in building the foundation of my Life with Ivey.  The conversation was put in my path with intention.  I have no doubt, now.  In the immediate moments following Ivey's birth, I have only glimmers of memories.  I can recall in detail the moment I knew som...

Not one- not one- have I not left- no matter how good, bad, or ugly- and sat and cried. As she perfectly says, it is an emotional whiplash. We sit with Ivey in the room, with Stephanie signing the conversation to her, and we discuss her. I have requested her absence from the hard meetings. For the record, and I think anyone who has ever sat in one of Ivey’s meetings would agree, we push hard into her present levels of academic achievements- we focus on what she can do. Her possibilities. And so far, she has exceeded every goal set in front of her. Still. No matter how stoic or the smile- my heart is breaking and full of pride all at once. mommas go to their quiet space - and cry. So many meeting were spent fighting with people who were supposed to be on her side. Yet, there is a side. The only side we allow in these meetings, year after year- is Ivey’s side. Still, things are lopsided. Matt and I have different roles in Ivey’s life. Matt and I are a team. We sit in the me...