The Story of a Life in an Hour
Last year 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 in every baby book, 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.
Kidney transplant.
Trauma, anger, rage, depression, suicidal thoughts, debilitating sadness, play therapy.
Anxiety.
Hospitalization for safety.
Mental health meds. Brave psychiatrist. Therapy.
Living. Life. School. Sadness. Anxiety.
To now…
Sometimes struggling. Always at risk for sadness. Depression.
But stable. For now.
Educated by people who “get” him.
If I am overwhelmed telling his story in an hour, I am wondering how he must feel having to live it.
After school in the car one day, 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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>This is part of the NaBloPoMo program for people writing on their sites everyday in November.
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About The Author
Julia Roberts
Julia Roberts is founder of Support for Special Needs and has been a regular contributor since its inception in May 2010. A mom to two kids with special needs, she didn't want other parents to feel what is the often isolating world of raising a child (or two!) with disabilities. Her kids had kidney transplants at the age of eight and will need liver transplants in the future as a result of ARPKD/CHF. They both have vision disorders and learning disabilities.