Three years ago I had no idea what Down syndrome really was. Had someone asked, the best I could probably say is “Corky” from “Life Goes On” because that is the almost embarrassingly small world I was raised in. Ask me now, and I can bend your ear for hours, talking about everything from nights in the NICU to the best snot-sucking methods and everyone from Supermodel Madeline Stuart to my own Superman Dylan. Dylan turns four years old in September, and he happens to have Down syndrome.
Everyone talks about the importance of prenatal care, copies of What to Expect When You’re Expecting are passed around, you dream of baby showers and baby nurseries and baby toes and curls. Inevitably your belly is being rubbed and advice is getting handed along. No one likes to talk about any possible problems or issues, although I imagine most folks know at least one someone (some of us knows way too many someones). So what happens when there is a problem or issue? No one wants to call it for what it is, that’s for sure. Words are diplomatic, and sentences are short. Medical terms and numbers hang heavy in the examine room air.
My journey began when the ultrasound technician noted excess fluid during the nuchal scan. They wanted blood work. The blood work showed an increased risk my child had Down syndrome. They wanted an amnio. I paused. I knew an amnio could put my baby at risk, and why did it matter? As it turns out, it mattered because if he did have Down syndrome he would be at high risk for complications and if they knew, they could be ready. We could be in the right place at the right time with the right equipment to give him his very best chances. How could I say no to that?
Weeks ticked by as we waited on the test results. I say weeks, but really it was only days. I will always hold a special place in my heart for the genetic counselor who called with my test results. I didn’t want to wait, I didn’t want to come in, I just wanted to know. She delivered the news calmly and lovingly with none of the harshness I often read about on the internet. There was no “bad” news, just news. And while I’m not entirely certain what I said to her in that moment, I clearly remember thinking, “What do I need to know to help my son?”
Children are Not a Vacation
I often read about parents who grieve for the “typical” child they thought they were going to have. In fact, there’s a very popular piece, “Welcome to Holland” which addresses the topic. Personally, I find this confusing. The diagnosis did not change my child. He was the exact same baby in the exact same place and I wouldn’t have him any other way. Along the way, I’ve learned his special needs and how to care for him. But, truth be told, it’s absolutely no different than learning to care for my older son. All children have their own “special” needs, and only the trial and error of parenthood helps you navigate those waters of figuring out what works and what doesn’t.
Dylan vs Corky
I know many people look at Dylan and see “Corky.” They see his almond eyes, round face, and short limbs. They see his glasses, the braces on his ankles. They see a three-year-old acting like a one-and-a-half-year-old. And I get it because it wasn’t that long ago that’s all I saw too. But now…
Now I see a vibrant, happy, healthy three-year-old toddler who loves Cookie Monster and wrestling with his big brother. I see blue eyes reflecting a great wide curiosity, taking it all in. I see blond mischief trying new things and figuring things out faster than I’d like. I see my wiggle worm and my snuggle bear. I see late nights, early mornings, happy days, sad days and everything in between. I see a little boy who needs all of the same things any other child needs, especially love.
I also know many people look at me and see a “Special Needs Mom.” They see me tired, frazzled, and speaking in odd acronyms like ENT, IEP, and SLP. They see piles of paperwork and bills and medical equipment.
Of course, I see those things too (often more than I’d like), but at the end of the day I’m a mom like any other. I want the best for my hooligans, and expect the best out of them. I believe they have super powers, and are changing the world. Are yours?
World Down Syndrome Day
Join us in celebrating World Down Syndrome Day (WDSD) on March 21! WDSD is a global-awareness day recognized since 2012 by the United Nations, which takes place on March 21 every year (March 21, or 3/21, signifies the triplication of chromosome 21, unique to persons with Down syndrome). Global activities and events around WDSD each year, organized by people with Down syndrome, their families, friends and advocates, work to raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities.
Do you have a loved one with Down syndrome or have you recently received a Down syndrome diagnosis? Here are some local resources:
Center for Disability Resources
Richland/Lexington Disabilities and Special Needs Board
Able South Carolina
Arc of the Midlands
Club 321 on Facebook (Pro tip: Don’t be shy; introduce yourself! Best group of parents imaginable — very friendly and knowledgeable!)
You may also want to visit: