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Jen Pollock Michel

( author + writer + speaker )

Filtering by Tag: special needs children

Found Wanting: Faydra Stratton, "I didn't want a child with Fragile X"

jenmichel@me.com

I am curating stories for a blog project called, “Found Wanting.” (If you’d like to submit a guest post, learn more here.) During Jesus’ earthly ministry, it was not uncommon for him to approach the sick and sin-sick with this question: “What do you want?” In John 5, he speaks with a man lying next to the healing waters of Bethesda, a man who has been an invalid for 38 years.

“When Jesus saw him lying there and knew that he had already been there a long time, he said to him, ‘Do you want to be healed?’”

The man seizes an excuse. “I have no one to put me into the pool when the water is stirred up.”

Was it too much for this man to hope for healing? What is too great a risk to invite the responsibility for walking again?

There can be fear in desire: fear that we will want what God will always refuse to give; fear that we will not want whatever God, in his sovereignty, chooses to give.

Ultimately, we are profoundly afraid of ceding into the hands of God our trust.

I’m grateful for those willing to share their stories of desire here. In my book, Teach Us to Want, I claim that:

“Desire takes shape in the particularities of our lives. We cannot excerpt desire from the anthology of our stories. Our desires say something about us – who we have been, who we are and who we are becoming. They tell a part of the story that God is telling through us, even the beautiful and complicated story of being human and becoming holy.”

Adams. And Abrahams.

“Genesis is a book of beginnings and blessings. And if it is a book about unfaithful starts – Adam – it is also a book about faithful endings – Abraham. I trust, by grace, that my story (and yours) will, at the end of [our] days, have traveled that distance.”

* * * * *

I didn’t want a child with Fragile X.

When the “is it time to have kids” conversations began in my marriage, I remember seeing at the grocery store a handicapped child with physical and seemingly mental impairment and thinking coldly, I don’t want that.

By then I knew I was a carrier of Fragile X syndrome, a condition causing intellectual disability, behavioral and learning challenges and various physical characteristics. My husband and I knew that if we chose to expand our family biologically, I had a fifty/fifty chance of passing on my fragile X chromosome and having an affected child.

Like tossing a coin. Heads: our child would be all we’d imagined - precocious and funny, college-bound, eventual supplier of grandchildren. Tails: he could still be in diapers at ten, might suffer seizures, might never write his name, read a novel or drive a car.

I knew, should I ask the Lord for a fish, I wouldn’t be given a snake. Should I pray for eggs, I would not be tossed a scorpion. I believed that but still didn’t want a child with Fragile X. I shoved the coin deep into my pocket and researched adoption.

I’d been interested in adoption even before I knew about Fragile X, so this decision did not completely sprout from my carrier diagnosis. I also realized that the travel and expense of an international adoption might not be possible with a special needs child.

So our first child came to us from Russia. I prepared for his possible health concerns. At 16 months, when American toddlers are bumbling around on chunky legs, my son wasn’t even crawling, and he weighed in so pitifully, he didn’t make it onto the lowest weight statistics of the pediatrician’s charts for many months. Not the right way to be “off the charts”! Then, a few months later, a “routine” adenoidectomy resulted in helicopter airlift because he suddenly needed a hospital with a pediatric intensive care unit.

What a welcome to parenthood!

But we weren’t so shell-shocked that we wouldn’t give parenting another go, and decided to became certified to foster. We hosted a set of sisters for a few days of respite care before receiving our one and only placement, an 11-month old boy. It took two years and a jury trial to complete his adoption, but we did not doubt our second son’s place in our family. At the trial I sat eight months pregnant, my unplanned baby already big enough that when he moved my body visibly shifted.

I had not wanted to become pregnant. I had not wanted to deal with the stress of a pregnancy while fighting a custody battle for our foster son. I certainly didn’t want trial dates set close to due dates.

But in those days, I knocked and sought as I never had before.

We won our trial five years ago this month. Of course, the child I didn’t think I wanted is my deepest source of laughter, my best cuddler, and the most adept at relaxing my helicopter-mom tendencies. Nothing beats learning to let go of control than having a special needs kid.

Today, while my middle son practiced forms at Tae Kwon Do, I attended an afternoon playdate with my other two. I watched my oldest, now ten, tackle and wrestle friends while my youngest, who indeed has Fragile X syndrome, handled the party in his own way - sometimes enjoying the kid chaos, sometimes taking a break off to the side, most of the time sneaking back to the chip bowl.

God used my initial reluctance and grew our family in the most spirit-woven way. What had been unwanted became desperately, achingly desired and loved. Each good and perfect gifts from Him.

Bio: Faydra Stratton has an MFA in creative writing from the University of North Carolina Wilmington and usually writes fiction. (But promises every word of this story is true.) She lives in Florida where she stays active keeping up with her three boys and her husband, a pilot for Missionary Flights International. Connect with her on twitter: @faydramarie