Wednesday, May 14, 2014

Roller Coasters

Two weeks ago, Jonas rode a roller coaster for the first time. We went to Magic Kingdom for one of Luis's media events, and Jonas had the opportunity to preview the Seven Dwarves Mine Train coaster. By all accounts, he loved it. He squealed, he laughed, and he asked to ride it again.



We came home from Disney, and so began our own roller coaster: One of a different sort altogether.

Jonas has been complaining of chest pains, off and on since January. He's had several echocardiograms, EKGs, holter monitors, and event monitors. None of these have caught anything out of the ordinary. Still, the pain persists. I cannot easily convey to you what it feels like when your child, a child who has had three open heart surgeries, complains his chest hurts and his heart is beating "too fast."

Last week, we visited Miami Children's Hospital twice in search of answers. By Friday, arrhythmia had not been ruled out entirely, but it had been moved to the bottom of the list of concerns. At the top of the list are gastrointestinal issues. He has a GI appointment next week. He will also need an exploratory catheterization, we're just not sure yet how soon.

By Saturday morning, Jonas had a fever. We stayed in bed all day watching cartoons and hoping to catch a break.

As I write this, it's Wednesday night. He has not complained of chest pains all week. His fever is gone. He still has a congested cough, but everything else appears to be fine. We're constantly in a state of flux. Things are good, things are bad, things are good again. This is not what I expected post-Fontan, but I should know by now not to expect anything to be smooth sailing. That is just not how things are meant to go, and this is our reality.

Tonight, Jonas fell asleep in the car on the way home from dinner with our friends. I gently scooped him from his car seat, as I have done hundreds of times over the last nearly 5 years. He softly whispered to me: "We're home? I'm tired." I pulled his long, lanky frame close to my chest, his body limp next to mine. He rested his head on my shoulder, his smooth cheek pressed against mine. I kissed his head as he whispered: "I love you, mommy." I couldn't help but think about what a completely ordinary moment this was. My little boy, ready to be tucked in for the night. Snuggled up close to me. In this ordinary moment, there was no congenital heart defect. There was no hospital, no procedure, no impending sense of fear and dread. Just a mother and her son, sharing small space in a vast universe.

In reality, this recent trip was not Jonas's first time on a roller coaster. We are constantly riding one. Tomorrow, I choose to laugh and squeal with Jonas. I wouldn't have it any other way.

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