Recently I had to give an entire history on Gage during a consult for a potential doctor. Just a conversation. This sounded fine before I actually did it, you know? “Just share what’s happened in his life,” I told myself. Yet after I did it, I was broken-hearted reliving it all in just my words. My memory.
Born, fine for 8 months, then all of a sudden, he fell off the charts.
One year, ocularmotor apraxia diagnosed.
Late walking, late talking.
Therapies. More therapies. Educational concerns sneak in.
Age 3 diagnosed with ARPKD (Autosomal Recessive Polycystic Kidney Disease)
Meds, more therapies. Lots of labs, echos, ultrasounds, weekly blood pressure checks, more meds.
More meds, shots, therapies, special ed, beginning kidney failure.
Acute failure. Dialysis.
Education issues. Behavior issues. Behaviorist.
Awake during surgery, mistakenly.
Trauma, anger, rage, depression, suicidal thoughts, debilitating sadness, play therapy.
Hospitalization for safety.
Mental health meds. Brave psychiatrist. Therapy.
Living. Life. School. Sadness. Anxiety.
Sometimes struggling. Always at risk for sadness. Depression.
If I am overwhelmed telling his story in an hour, I am wondering how he must feel having lived it.
Just today on the way home from school in the car he excitedly typed in members from my immediate family into a family tree program. He was talking about the genetics of his disease because in science class they are talking about traits. Dominant and recessive genes. He asked about seeing the medical journal article on him that talks about his syndrome that only he, his sister and another kid share.
He wakes up. He smiles. He engages, even if he has a period of time where he doesn’t. He tries new drugs freely, he talks about how they help or don’t. If that isn’t tangible proof of the human spirit and resilience, I honestly don’t know what is.
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