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Coming to Grips with My Son’s Genetic Abnormality

Coming to Grips with My Son's Genetic Abnormality

For the first 19 months of my son’s life, he was undiagnosed but faced a plethora of medical and developmental issues. He was delayed developmentally and wasn’t doing things like sitting, speaking, crawling, and then walking. “Failure to Thrive” had us at the doctor’s office several times a week, sometimes daily. At 9 weeks he received his first pair of hearing aids after weekly tests confirmed hearing impairment.

However, because there was nothing “wrong” with him, each issue was treated in isolation. Hours of therapy sessions in OT, PT, Speech, and Special Ed (even as an infant!) saw him working hard for hours each week. He was a delightful, easygoing, lovable child, which made it all the more difficult when he had to be poked and prodded, held down, sedated, and cut open. A small question started entering into my thoughts: “Why him?”

When his physical therapist would be working his muscles and he would get so frustrated or be in pain, that nagging question hanging out at the back of my mind made its way to the front: “Why him? Why does he always have to work so hard at what comes so easily to everyone else?”

READ: 7 Common Misconceptions About Jewish Genetic Diseases

Sometimes my husband and I felt that our son was being punished for our previous sins. I would call out to God: “OK, I get it, we were wrong. Can we please go back to normal now?”

But when my son C was just 19 months old, and our new baby A was a mere 3 days old, I got a phone call on my cellphone. I was still in the hospital following A’s birth. Our pediatrician was on the line. A few months before, he had advised us to go for genetic testing. C had a lot of medical and developmental issues; it was best to get it checked out. The genetic counselor pored over his records and told us that she didn’t think anything would come from the testing, but best to be cautious.

How wrong she was.

READ: What Happens When You Are a Carrier for a Jewish Genetic Disease?

I was told on the phone that C has a deletion on the q arm of his 18th chromosome, 18q-.

There in the hospital I began to cry. It was not going to go back to normal.

The therapies, the doctors, surgeries, medications, delays–this would always be our normal.

Why him? What did this pure, innocent child ever do to deserve this?

One day, two years later, another phone call solidified this question that still haunts me. It was from another genetic counselor. This conversation took place in Hebrew, as we had fulfilled our dream of making aliyah and moving to Israel. This voice gleefully told me that my husband and I are genetically typical. We did not pass the chromosomal abnormality to C. Our future children were not at risk for it any more than anyone else.

READ: Genetic Testing of Embryos Raises Big Ethical Questions

But instead of meeting her with the smiles and grace she expected, I began to cry.

It really wasn’t us. It was him.

“Why him? Why him?” I cried over and over. Why can so many other children sail through life, walking, talking–with ease no less–and he has to work so hard to do any of these things?

I realized then there was another question I could be asking. A question that could actually have an answer, as elusive as it may be. The answer to this question may take a life and journey to unearth, but it is a worthy question with a lofty purpose: Why us? I had always shied away from this question, thinking that it made me sound ungrateful for this most magnificent child.

READ: When Two Tay-Sachs Carriers Try to Conceive

But really, God chose us to be C’s parents. Why were we chosen? What do we have to give him that others don’t? What do we need as people that only he can give?

And though these questions can be asked, and should be, of any child who we are blessed with, it is even more pronounced with a child who has special needs.

It is never easy to see someone you love in pain; to see someone you love struggle over and over again. It is especially hard to see your child like this. So when that question, “Why him?” sneaks in on a whisper, unannounced and uninvited, I let it in. I give it a cup of coffee. We talk, hang out, laugh, and cry, and then it’s time for it to go. “Why him,” doesn’t help anyone.

“Why us?” is going to get us where we want to go.

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