Down Syndrome, You Need a PR Manager


Dear Down syndrome:

Within a minute of finally holding my newborn baby for the first time, a pediatrician told me, “We think your son has Down syndrome.” Down syndrome? I mean, what the heck? The screening test I had told me I had a lower risk for Down syndrome than my age-related risks.

So, Down syndrome, you were a most unwelcome visitor. You inspired in me this sense of dread, of lowered expectations. A blissful time was anything but because you showed up uninvited. You made me cry, not the tears of joy a new mom is supposed to have but deep, soul-shaking sobs. Down syndrome.

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Right away, the doctors started telling me everything that could go wrong because you were there. Low muscle tone. Heart issues. Digestion problems. Instead of hearing words like “congratulations,” I heard words like “cognitive delays.” Down syndrome, Down syndrome, DOWN SYNDROME. For days, that’s all I heard, a constant echo in my head that wouldn’t quiet down.

Because of you, Down syndrome, I had to change from a fiercely independent person to one who had to open my home to what would become a steady stream of therapists who would work my little guy’s muscles, help him learn and help him speak. There were definitely times I resented that and everything else that came along with your presence.

But…

There was so much the so-called experts forgot to tell me, Down syndrome. There were so many things they just didn’t know and couldn’t tell me, and it’s quite clear to me, Down syndrome, that you’re in desperate need of a good public relations manager. While the experts told me with precision and certainty all the things that could go wrong, they so rarely told me all the things that could go right.

The doctors forgot to tell me that my baby was a baby and not a diagnosis. They forgot to tell me that though some milestones may take a long time and may be hard fought, they will happen. They forgot to tell me that other parents and the steady parade of therapists who would come in and out of my home would be like family, and I would come to value and trust them as part of my inner circle. They forgot to mention that I could and would still have high expectations and demand of my child what I would of any typical child.

The experts forgot to tell me that I would suddenly find myself with a reset button — something that would teach me to let go of certain things because they were just drama, and there are real things in life far more important. They forgot to tell me that my child would be amazing, that he would be clever and smart. Yes, smart. They forgot to tell me that he’d be determined and persistent. They forgot to tell me that he might be able to pick up letters and numbers quickly and that he might start reading some sight words by 4.

They forgot to tell me that you, Down syndrome, might be a gift. If only they’d told me that. In all fairness, though, Down syndrome, I probably wouldn’t have believed that. Your serious lack of highly publicized positive publicity would never have let me believe you were a gift, but you are. So my recommendation is that you hire a really good PR manager, someone who will remind the experts to tell parents like me all the things they didn’t tell me; someone who will retrain parents, the public and the doctors so the first reaction won’t be a gut-punched feeling and soul-wrenching sobs — someone who will teach us all that you, Down syndrome, are not a problem but an opportunity and a reason for hope.

Regards,

Julie Gerhart-Rothholz

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The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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