I’m Using Stem Cells In Hopes Of Helping My Child. Please Don’t Picket Me.

by Jamie Sumner
Originally Published: 
Elena Pavlovich / Shutterstock

“Stems cells are life! Don’t destroy life! Those embryos have rights too!” cry the imaginary circle of protesters in my head as I pick through the packet of waivers and doctor’s recommendations and case studies fanned across my kitchen table. They arrived by mail in a conspicuously large manila envelope, and I had to fight the urge to hide it under my shirt in my “play it cool” walk back to the house. Could the HOA cite me for this? Were these materials not in accordance with the neighborhood bylaws?

The problem here is that nobody gets it. Nobody reads past the headlines and the fight-for-your-rights poster boards. I didn’t either until I had to, until it became clear that my son would need stem cells to help him walk and talk and freely move.

Cerebral palsy is not something you “work through.” It’s not a diagnosis you can overcome. Just ask our insurance. We do what we can. We have our favorite physical, feeding, speech, and occupational therapists. Our son rides horses in equine therapy and swims in little indoor private pools for aquatic therapy. We do it all. And it’s still not enough.

He has a wheelchair and a walker and a stander, and it’s still not enough. It cannot make him independent from me, his mother, who would gladly meet his every need if I didn’t know he wanted more than a mom escort through life. And so I’m sifting through the forms and signing all the waivers and conference-calling with the pathologists and study coordinators at the university where we will participate in this stem cell study.

Stem cell — it brings up images of tiny bubbling blastocysts on their way to full-fledged thumb-sucking babies. Stem cell — it makes you want to hug your kids tighter to feel all the pieces of them knit together. But hear me when I say it’s not what you think. I’m not taking anybody’s embryos. As a mom of three who went through rounds of IVF to get here and still has three “frosties” in the freezer, I would never ever syphon off embryos from the production line.

Stem cell research has come a long way. We’re getting our stem cells from leftover blood cells in donor umbilical cords and placentas. And we’re thanking all the mothers out there who chose to give theirs over for such purposes rather than bury it beneath a tree or steam it in tea to absorb its regenerative powers. We need those powers for our son.

Will this be the “magic answer” that will allow those damaged brain cells to be made new, a Captain America hero story? Will this let the wheelchair grow dusty and the sign-language videos go into storage? I don’t know. But I know that I want to try. I want to give my son the best chance at the best life, whatever that may look like.

And yet I hesitate to tell people of our stem cell leap of faith because that’s what it is and because of the word picture I fear they will form in their heads — of defenseless embryos being disassembled and proffered up into our greedy hands. I want to explain myself before I even begin. I want my word picture to be bigger and clearer than the misconceptions. I want a billboard of my own.

But for now, I will settle in with my manila envelope and tackle the unspoken fears as they come (or not) to fruition — because that’s what you do for your children. You brave the brunt of society’s mores in the hope that the tide will have turned by the time they take the mantle for their own.

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