It was dinnertime and each of us was talking about our day… was it good? Bad? Regular day? Suddenly Gage said, “I told my teacher I needed the worksheet blown up, so I asked him to make a copy of it larger for me. He did.”
I looked at my son, then my husband and back to Gage and trying not to seem too excited said, “Oh that’s awesome. Do you know why?”
“Yeah.” he says, so I proceeded to elaborate that for as long as he’s been at school and visiting doctors it’s been my hope and ultimate goal to raise them to speak up for themselves. We started talking about all the ways they will need to take over their care some day.
“You’ll call and make your own appointments one day.”
“You’ll arrange for your perscriptions to be filled and you’ll put them into med trays for the week, like we do.”
“You already think about the time you need to take your meds and make sure they are the right meds before you take them.”
He says, “Yeah, I do that.”
The conversation went on like this for a while and we talked about him being 25 and older and I am grateful he wants to think about his life at 25 and older. He talks about college and jobs and he talks about his liver transplant and his next kidney transplant.
This conversation reminds me of a couple of months ago when he came home and said he had to do a report of some kind on a genetic disease. Naturally, he picked (his disease) ARPKD. It’s what he knows. I gave him several options for other equally interesting diseases, but he was set on talking about a disease he knows. He was determined to present his own story, even after – and maybe more so – I tried to dissuade him.
He researched, wrote and pulled together a PowerPoint presentation. I helped him think through the order of the slides and asked him a couple of questions. He practiced it with me to make sure he knew the information and he got a very good grade and he was proud and so were we.
Gage has lived through a lot. A little boy fighting to walk, talk and eat, to pick up small beads and cut with scissors. He’s had to work harder than anyone I know to just be understood, and seen. He fought through years of symptoms of kidney failure and medications and needles to take his blood and needles to keep the symptoms at bay.
He was a boy who lived through kidney failure and dialysis. A pulled catheter, a botched surgery followed by PTDS that brought on depression and a dark, dark place that he lived in far too long.
He’s lived a big, big life. One thing I am continually amazed at is Gage’s ownership of his story. Is it possible for a nearly 14-year-old to know what it really means to share his story with others? I’d say if that teenager is insistent on sharing his story with classmates and teachers that he sees everyday, then yes, it’s possible.
For a kid who has survived and gone through what he has, sharing his story is nothing. I mean compared to what he has gone through to survive, to live and he shares it proudly.
One of the most important parts of our relationship as parent/child and caregiver/sick kid is trust – both ways. He has to trust that I won’t steer him wrong as we navigate his healthcare together and eventually as he takes it over and I have to trust him. I trust that he is growing into the remarkable kind of human I knew he’d be while he claims his story and shares it his way.
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