Mom and interior designer Shelly Rosenberg shares her story of being pregnant and learning about her baby’s special needs diagnosis.
“We are calling to confirm a diagnosis of Trisomy 21.”
I will never forget that moment. I could have been shopping for maternity clothes. Instead, I was looking for skinny jeans in a trendy boutique, trying to ignore the desperate, gnawing feelings of anxiety and grief in the pit of my stomach.
My very first ultrasound revealed early markers for Down syndrome. Even though I was 40, my husband and I were shocked to hear this news. My first thought was, “What does this mean for us?” I was soon to find out what it meant to everyone else… whether I wanted to or not.
The reactions of others to my new, and very personal, situation, were wildly varied—surprisingly subjective, many times impersonal and significantly triggering. I can’t know what anyone else’s experience was like, but I can unfortunately assume it was mostly unpleasant.
Medical professionals are the first to know of this heavy load you now bear. And in my case, they were more than willing to relieve me of it. We naturally take cues from our doctors on how to process a diagnosis and construct a mindset about how to handle it. From the sonogram technician to my trusted OB/GYN, nurse practitioners and geneticist, the consensus was dire and matter of fact. Before my amniocentesis was even performed, or T21 verified, termination of the pregnancy was assumed.
In an almost knee-jerk reaction, we urgently looked to friends and family for direction. This is where it gets really tricky. Human beings fear the unknown. It’s natural, maybe even hard-wired, for us to use pessimism to protect ourselves and those we love.
We did receive empathy for our situation, yet none of our inner circle wanted to see us struggle raising a child with special needs. They cited everything from this child’s potential suffering to loss of freedom, less attention for our other children, financial stress and divorce statistics. A well-intended and heartbreaking consensus was clear. Nothing about this decision would be easy.
Yet there was a yearning to see another reality. My husband was the first to seek out the alternative. He wanted to reach out to other families who had children with serious challenges; to hear their perspective. Although I was resolute to continue our pregnancy despite the mounting fears, I wasn’t interested in “wishful thinking.” I longed to stay in a need-to-know-only cocoon. What if I couldn’t handle too much, too soon?
My gratitude for the extraordinary experiences we were soon to have is profound and lifelong.
One uncomfortable step at a time, we connected with parents who had walked a similar path. We didn’t find any Pollyanna stories where society’s warnings weren’t legitimate. It’s true that parenting an atypical child is rough in a world that clings to the comfort of a norm. But the brilliance of diversity became increasingly evident.
Toward the end of my second trimester, I begrudgingly attended a public fun-run raising money for a local nonprofit that supports preschoolers with and without intellectual disabilities. I tried not to stare at all of the kids. Would it be obvious I was attempting to decipher which ones had Down syndrome?
We must have looked hesitant and a bit lost. A smiling man sauntered up to us to say hello. He had a knowing look on his face; compassionate and confident. He welcomed us and congratulated us on my obvious pregnancy. It was our opening to admit the ruse. We wanted a glimpse of what our life might look like after our baby was born. There was something about him that began to glow as he turned our attention toward a small child bobbing and dancing awkwardly in the grass—a boy in a world of his own, delighted and laughing. A boy with Down syndrome.
In that instant, I knew I was now part of something thoroughly more significant than anything else before. This inexplicable feeling of complete understanding—without words—gave me the courage to embrace fellow parents as the safety net I needed to move forward with conviction.
We began to share this insight with our family and close friends. One heart at a time, the tide began to turn. Maybe this could work. Could it even be something to eventually celebrate?!
We now eagerly sought out and visited with parents and professionals who were raising and treating kids with all kinds of genetic differences; many conditions were fairly common and some very rare. No matter how limited these kids might appear to an outsider, each has a unique and wondrous ability to connect, love and evolve. Time and again, we are witness to stories of growth, compassion and grace. We glimpse nuances of brilliance and magic that no medical textbook will ever include. The more positivity we looked for, the more hope we found.
Every one of us will have a very different journey. And regardless of where your heart leads you, or what path you take, I honor your courage. Parenting any child comes with risk and reward. I just know for me, braving the initial reactions and facing my fears illuminated a beautiful reality that was hidden (and still sometimes hides) behind my grief. Finding and following others on a similar path lead me on a breathtaking journey of doubt and validation. One that delivered me into the arms of my son.
Shelly Rosenberg is a writer and interior designer who lives in Lakewood. For more than 20 years she has mothered three children who have been diagnosed with multiple conditions ranging from anxiety to Down syndrome. Rosenberg recently launched acornandoak.com, a website and blog where she offers design coaching and products that help families of special needs children adapt their homes to reduce stress and promote peace.
Photo courtesy of Korena Bolding Sinnett.