I sit, motionless, still reeling from the words I had just heard. The words ache in my ears. The tears don’t come just yet, but they are beginning to burn fiercely as they well up. Then, like a flood gate they flow, almost unending for days on end…
The words, you ask? Confirmation. Science in its boldest form. Trisomy 21. Three copies of the 21st chromosome. DOWN SYNDROME. There they were again…this time in print, so I could torture myself by reading them over and over and over.
I had been holding on to hope for nearly two weeks. This hope, resembling a strong woven rope, was holding me up, helping me through each day. Hope that our new little baby didn’t have to live under the label that doctors and nurses casually slapped on him when he was born.
The karyotype blood test had been performed on Reece in the hospital when he was only two days old, but the results typically took two weeks to come in. Two weeks to stare at him and convince myself that everyone was wrong. Believing that his almond eyes were just a unique feature, and the palmar creases in his hands were passed along from a family member, after all, my grandmother has the same creases and she doesn’t have Down syndrome.
Our appointment with the pediatrician was on a Monday, a sweltering, August Monday. It was my actual due date for Reece, but the little man decided to surprise us two weeks early.
This was the day we were going to get the karyotype blood test results.
I dragged that hope into the exam room, feeling the rough fibers of that rope between my fingers, it was holding me up just as it had over the last fourteen days. Waiting for the doctor to join us in the room was beyond nerve wracking and all I could do was pace the floor, five steps this way and five steps back. We waited, knowing on the other side of that door were results that would determine the course of this little boy’s life, our life. Jeff held Reece as I paced for what seemed like forever, and we waited.
The door swung open and in walked the doctor holding a crisp white piece of paper. I took a seat in the lone chair in the room and braced myself for the news. Without as much as a hello, the doctor said, “Well, we got the results…and he does have it.” My hope began to unravel faster than I could hold the rope together until it swiftly dwindled into the smallest of threads, eventually snapping from the pressure of the blow.
An avalanche of sorrow fell on my shoulders and with that I began to cry. Seeing my tears, “Oh, I thought you knew?” the doctor callously questioned. I couldn’t even believe that there could be anything but encouragement coming from her mouth at a fragile time like this, and I wanted to scream at her “NO! I didn’t know. I didn’t know he had Down syndrome for sure, but now I guess I do…don’t I?” But instead, I maintained my composure and asked for some time alone. The remainder of the appointment is a blur to me, but the reality of Reece’s diagnosis was painfully clear.
A quiet knock, as not to wake the sleeping baby, who was now just a few weeks old. In walked a representative from a local Down syndrome organization, who called to request a visit with us shortly after we received our heartbreaking news.
It took everything within me to accept her invitation as I was walking through a very dark place and struggling with acceptance. She was a kind-hearted soul who had a child with Down syndrome of her own. Finally, someone who really understood what we were going through. She gave us a new parent welcome basket filled with information and gifts, which I am embarrassed to admit, sat in a corner for months before it was even touched.
But it wasn’t the gifts she gave us that stuck with me, it was what she said that turned out to be the most precious gift of all.
“What you’re feeling isn’t good, isn’t bad, it just…is. And if I had a magic wand to wave this all away, I wouldn’t even do it, because you have to experience this heartache, this pain, this sadness to get to a place of true acceptance.”
There it was. Something I didn’t want to hear at the time, but now I look back and know it was exactly what I needed to hear. It went far beyond the “I’m sorry” that most people whispered with best intentions when we told them our news.
In my heart, I knew we were not alone. How many parents had already navigated this path we were beginning to tread?
And now, 19 months into this journey…I can honestly say, if I had a magic wand to wave it all away, I wouldn’t even do it, because I did need to experience that heartache, that pain, and that sadness to get to the place of true acceptance that I find myself in now.
Reece was diagnosed with Down syndrome at birth and Alissa hopes to inspire and encourage other mothers of special needs children through her writing. Click HERE to follow her blog.