The Diagnosis Experience I Never Had for My Son With Down Syndrome
I recently attended a class with genetic counselors in training at a local college. Several families, including myself, were asked to be actors in adjoining patient rooms receiving a diagnosis of Down syndrome for our newborns. My nerves were shot and I couldn’t manufacture a tear for the acting. And then it occurred to me — I didn’t want the tears to come, because my experience at my son’s birth was handled so poorly. One tear would likely lead to a flood.
When Allan was born, Carl and I got our diagnosis with an “Oh by the way…” — a callous afterthought in a smug tone. To add insult to injury, we were treated as if we were ignorant and incapable of comprehending the probable diagnosis. “Well, maybe you just didn’t understand what I said to you,” they said. What should have been an incredible moment — the birth of our first child — was a tumultuous jolt, with impromptu meetings with the Director of the NICU and half-hearted apologies from a student doctor and her attending. Their efforts to clean up their mess were met with a formidable challenger in me, the mother who just so happened to be a previous graduate student in the biological sciences with emphasis in reproduction. For years the scar has remained, the memory of having received such a poor welcome into the world of Down syndrome. My gorgeous baby boy was treated as a label, a novelty, with the news dumped on us of everything they believed he likely would not be.
As you can imagine, I was rather anxious and admittedly cynical about what this student-in-training would say to me. But I’d made an agreement to be fully engaged, so tapping into my limited acting prowess, I went all-in as the student entered the room.
She immediately disarmed me with what had to be the most sincere declaration of congratulations on my newborn and asked his name. For 10 minutes, I pushed back with emotional turmoil and peppered her with questions. It was obvious she had an idea of how this might go, but every time I went into a deep hole of despair, she went there with me and reeled me back out with reassurances and offers of resources both local and national. She gave the hard cold facts, things I obviously already knew, but hearing them in that moment still made my heart race. I asked her questions I knew she could not answer at her level of training. She struggled with them but said “I don’t know” appropriately and offered to research more to find an answer.
Before these “mock counseling sessions,” the students were told they’d be giving a diagnosis of Down syndrome to actors. We were told not to reveal our true identities as actual parents of children with Down syndrome. The sessions were life-altering; the sincerity of this young woman’s words, and heartfelt congratulations on my beautiful baby, were reassuring and healing. I’ve waited nine years for this moment, and the tears won’t stop.
We reconvened and the students shared their assessments; we gave feedback as actors. Then the veils were removed and the tears flowed. The healing and ministry in that space between parents, professors, advocates, and students was blissfully outstanding. I shared directly with the student who counseled me that she gave me what I had never received — and it was right on time. She got up from her seat to hug me, and whispered, “I’ll carry you in my mind with every patient I meet. I won’t forget what you’ve taught me today.”
I also shared my faith and how it’s provided such comfort on this road of Down syndrome and now autism — Allan has a dual diagnosis. Several students approached me privately after the class to hug me tight and share how much that meant to them as fellow believers, that my family is sustained by our belief in the power and might of God in these challenging circumstances.
My hat is off to the Down Syndrome Association in my regional area. I am better because of today, and healed. I am comforted that our future medical professionals are better equipped. My bad experience at Allan’s birth was necessary to educate today’s newest professionals. My pain, my hurt wasn’t wasted; it was ultimately used so we can learn how to do better.
I give God the glory for another healing moment and the ministry that transpired with those future counselors. I left to see a rich blue sky, sun beaming brightly, but I was far more radiant and alive in that moment than the sun could ever be.
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