Caretaker Notes: Chris

"For about a week after he died, I didn't want to drive." Chris glances out the window. He sits in a booth across from me.

"Why?" I ask.

"I don't know. There're so many things to remember to do when you drive. I just didn't think I could do it."

His son, Mason, who died more than two years ago, wasn't his biological child. He married Mason's mother. Unlike many of us with disabled children, Chris chose to enter this world with his eyes mostly open, though he admits that he still came to it naively.

"I was the kind of guy who had a bumper sticker on his '68 Plymouth Fury that read, "If it's not fun, don't do it."

drawing of a man smiling by David Borden, (c) 2016
"Chris" (c) 2016 by David Borden
I asked, "So how did that guy, the 'if its not fun' guy, end up doing such an un-fun thing?"

He laughs uncomfortably. "First of all, I have often made different life choices, starting back when I graduated from college and chose to teach in a high school in a small village in Central Africa as a  U.S. Peace Corps Volunteer...  Also, I fell in love with his mother. I knew some about the lifestyle, such as night duty. But also, I just looked into his [Mason] eyes. He needed help, and I naively thought I could help him."

I can't help it at this point and I say, "But, me I didn't choose this. It just happened to me, to us... to Savannah and Tamara and I. I don't know if I would have chosen to do this."

Chris says, "But you stayed, didn't you? Not everyone does."

"So, are you saying, getting in is the same as staying in?" I ask.

"I don't know. How could I turn away?"

Chris and I talk another hour. We drink beer and eat French fries as the sun sets on this winter night. I wonder if naivete and an inability to see the future are components of the hard road of caring for a child with significant disabilities. It's so hard. I've watched people destroyed under its weight, but I've also seen people flourish. Its all paradox and contradiction, this world. Only one thing is for certain: you cannot go through this experience without being profoundly changed.

I want to talk to more parents. I want to talk to those who feel robbed and those who feel blessed. I want to talk to the angry and the grateful. We, the caretakers, the parents, the grandparents, attendants, nurses, siblings, and anyone who cares for someone else, must support each other. Those who try to ameliorate suffering or bring joy to people in greatest need, I want to give them voice.

Some have called me an expert at raising a child with disabilities. I am, but I'm not. Every experience is unique, every child unique. I have learned that I can not solve these problems. In fact, my daughter died before her sixteenth birthday, so by some accounting, I am anything but an expert; I am failure as a parent.

If you know someone who would benefit from reading about this journey, please share this post. If you would like me to interview you and tell about your struggle as a caretaker for a disabled person, contact me at All I ask is some of your time and honesty. In exchange, I'd like to draw a picture of you and post it along with your interview.

Thank you.

#caretaker #specialneeds #disability #family #caring


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