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Adult Medical Care: The Transition Begins.

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...
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Can I ask? Why is asking for help so hard?

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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 ...
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Unchurching The Church.

My favorite Christmas song is "Mary, Did You Know?".  No, it's not Christmas.  On really hard days, I listen to the song, on loop, just to hear the one verse that provides Hope in the hard days.   The blind will see, the deaf will hear The dead will live again The lame will leap, the dumb will speak The praises of the Lamb. Do you think Mary knew?  Did she know she was kissing the face of God? 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....
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IEP TSUNAMI.....I saw this video of a mom crying in her car.

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...
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A Sibling Story: Highlighted by Lawson Luckie (UGA/ESPN): my perspective.

I've watched this over and over. This is Lawson's story, but his story is a sibling's story. I've said for years that siblings are the heroes in these special stories. They live in a deep shadow most days of their childhood. They choose the shadow as adults. A shadow they love for a person who takes priority in time, space, and attention. They hear "hold on a minute" more times than fair. Siblings live in homes where the need for responsibility and priorities exceed their age. They do it with a quiet love that is unconditional. And, they are their siblings biggest cheerleaders and motivation. They show up. Siblings have an understanding of Life, each breath being a gift. Sacred and cherished. As Lawson said, which broke my heart, a Life he didn't know if he would see after he walked out a door some days. Siblings witness the fragility of Life. It is not my place to try and tell Knox and Walker's journey with Ivey. I can only tell this j...
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And Sometimes Feeding Your Kiddo Looks Like This...

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A simple sentence. No one said it to me in the beginning, but boy did that tube cause a lot of chaos. The NG tube graduated to the G-tube which morphed to a GJ- tube…. A brief history of Ivey's feeding tubes: *The NG tube was in place the first time I ever saw my daughter in the NICU.  My only memory of her without a feeding tube is them placing her in my arms immediately following her birth. *The G-tube, well, that is a story within itself.  That decision did not come lightly.  Another hole in her.  Another decision on our plate, but not really on our plate, it was apparent it was a medical necessity for her survival.  Literally to give her a chance to live.  A permanent decision.  A 5am panic attack in the Scottish Rite elevator that happened to coincide with Dr. Meyers arriving at the hospital at the same time as me.... Our intersection in the elevator set the stage for the years to follow. From that point on, he knew I was a little nuts and a lot...
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Sibling Secret Sauce

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Siblings of kiddos with disabilities are amazing humans walking amongst us. They live a life, most often, in the shadows of their sibling who simply needs "more". More time. More direct attention. More of more. We have now come to a fork in our road. Our boys are young men, and, our daughter is a young lady. I'll be honest, I was uncertain what life would look like once the boys left this home, once they had their own time, in their own personal sunshine. We found out quickly once Knox left for college his freshman year what that would look like. And then, when Walker left, we knew what life would feel like in their absence. There was too much space. Ivey felt it. We get many compliments about the relationship the boys and Ivey have with one another. Hints here and there that, maybe, Matt and I had some secret recipe to parenting a household with a child that is very medically complex and a very complex communicator. This is what I can tell you - there is no re...
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