I’ve wanted to write about my boy. My tween. My strength. He is sweet, smart and funny as hell. That’s the surface stuff. My son is insightful and contemplative. He is compassionate to the point of hurting when others hurt. This young man is a survivor. Literally.
The reason I haven’t ever written about him in any kind of public way is because I can’t imagine where to start. Or how much to reveal. Or how to put any of it into a meaningful context. We are all a product of our context, and for my son that is exponentially true.
This is the start. The beginning. The introduction of my son's life through my muscle memories.
I’m not sure how to tell you who he is without qualifying his life in these terms: he flat-lined while holding my hair when he was three years old. His heart stopped for the longest four and a half seconds of my life. His blue eyes locked on mine. Our faces were maybe ten inches apart.
My son routinely missed 50 days of school every year. And once a week, I inserted three needles into his belly for a gamma globulin infusion. When we went to the Cleveland Clinic in March of 2008, we shipped more than 1500 pages of medical records ahead of us to six different specialists.
His life is very different today. While the underlying conditions are all still real, his treatment protocol took a 180 degree turn, and now, this 12 year-old walking box of changing voice, leads a healthy and normal life. As normal as it can be given how he spent the first 10 years of his life.
Last night, one of my friends took her 4 year-old son to the ER at Phoenix Children’s Hospital (PCH) for stitches. She sent out a photo.
“Lemme know if you want company – or a sweatshirt.” I wrote.
“Yeah, it is cold in her. You spent waaay too much time here.”
“LOL. Text me the name of your attending, and say “hi” to Child Life for me.”
