What I Wish I Knew the Day My Baby With Down Syndrome Was Born

The saying goes, “If I knew then what I know now…”

When I think back to how grief-stricken I was after learning my son was born with Down syndrome, it makes me ashamed. It makes my stomach ache. I was ignorant of what it meant.

At that time, I could only see a diagnosis. Maybe that’s because my son wasn’t even an hour old when they whisked him away to the NICU. I wouldn’t get to lay eyes on him until much later the next day. I can still smell the smells and feel the feels of that first night. I can no longer wear a certain lip gloss, because it was the gloss I kept applying for the new baby and mommy pictures. Pictures we wouldn’t get to take.

How did I know to ask if he had Down syndrome before there was any mention of it? Mother’s intuition? I chose not to have the prenatal testing. I was only 34, so technically, I wasn’t of “advanced maternal age” — which is a term I hate, by the way.

When you are pregnant, you can feel so vulnerable. You’re already overly sensitive, you often feel huge, and then on top of that, they want to call you old! My pregnancy had been great, minus the morning sickness for the first five months. That was fine by me, because by Mother’s Day, I was feeling so swell I ate a dozen Krispy Kreme donuts (over the course of the day).

Fast-forward to that stormy day (literally, not figuratively). My water broke. My sweet daughter Ashlyn was 4 at the time. She couldn’t understand why Mommy was peeing in the middle of the living room floor. There are no books I’ve read on helping her understand that one. So yes, Mommy peed her pants. Off to the hospital we go.

Boy or girl? We wanted to be surprised, so we didn’t find out the sex. At 12:35 a.m., my eight-and-a-half-pound baby boy was here. I laid there and looked into his eyes. I just knew. Nobody was saying anything other than, “Oh, he is so cute,” and talking about how big he was for being three weeks early. It was then I blurted out I was worried about Down syndrome.

I looked to my doctor, and I could see her lips moving in slow motion. She was telling my husband, “Your son is showing signs of trisomy 21.” I was out; I couldn’t breathe. I was literally panic-stricken.

That first night, my sweet nurse made me drink warm milk and herbal tea because, “Mrs. Shea, we can’t give you another pill yet.” Damn it! All I wanted to do was sleep. Then I would wake, and it was like it was happening all over again. Where was my baby?

My baby, who I had dreamed about holding for those nine long months. I wanted my baby back safe in my belly again. The thoughts I had. Why him? Is he going to live to see his first birthday? Will he look like his big sister? So many negative thoughts. I was so ignorant. As was my neonatologist, who filled my head with worst-case scenarios and no hope for a happy life.

That all changed the next afternoon when I was able to visit the NICU and hold my son. Guess what? He was beautiful! Everything the neonatologist said, the baby did the opposite. The cardiologist put us at ease. The charge nurse, who had already fallen head over heels for him, was full of encouragement and nothing but positivity. I started to look at him as my baby and began the process of not feeling sorry for myself.

Seven days later, we got to bring Dylan O’Brien Shea home. Our baby boy!

The first night home as a family of four, my daughter Ashlyn said, ”He makes my heart giggle!” And to this day, that is exactly what he does. Dylan’s eyes literally light up a room. If I am having a tough day, he wraps those little arms around my neck and says, “Oh, Mommy.” I feel happy when he hears a song and starts dancing his little heart out, no matter who is watching.

To me, he is pure, uninhibited joy. Dylan is Dylan. A little boy full of love, curiosity, lots of energy and a few curse words! “Uck!” He learned that from his daddy. From me? He shares my love for donuts.

After my experience, I have some advice for pregnant moms. Please have the prenatal testing. An informed mama is a calm mama. And if you do get a diagnosis of Down syndrome, go to the nearest bakery and enjoy a dozen donuts. Have a good cry.

Then, spend the day with a family and their baby who was born with that extra chromosome. You may then realize you don’t have to be scared. A baby with Down syndrome is a baby. And they can open your eyes to a beautiful new world. It’s your baby. Your daughter or son. You just need to be ready to love your baby — and embrace their gifts, rather than dwell on negativity.

If only I had known then what I know now.

Image via Contributor.

A version of this post originally appeared on Motherlucker.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Down Syndrome

Mother and daughter with heads leaning against each other, smiling

A Letter to Myself on the Day I Found Out My Daughter Has Down Syndrome

When my newborn daughter was diagnosed with Down syndrome, I had no idea what to expect. Looking back, the cliché “if I’d only known then what I know now…” resonates more than I would have thought possible. That realization prompted me to write a letter to my 36-year-old self — that scared woman with a [...]
Screenshot of commercial with young girl with Down syndrome

Young Girl With Down Syndrome Stars in New Fisher-Price Commercial

Fisher-Price and its parent company Mattel has embraced inclusive advertising with its latest commercial featuring a young girl with Down syndrome. In the commercial, two children play with Fisher-Price’s Little People Sit ‘n Stand Skyway together. “Play is the ultimate way for children of all abilities to learn and have fun, whether it’s learning to share or [...]
Matthew and Marcus working out.

How My Son With Down Syndrome Is Doing His Part to Find the Cure for Alzheimer’s

My son Marcus Sikora is 26 years old. He enjoys performing, traveling, and is the author of the children’s book: Black Day: The Monster Rock Band. He lives nothing less than what can be considered a “full life,” and like any other 26-year old, has no intention of slowing down. Yet he is already taking [...]

What I Wish I Could Have Told Myself on the Day My Daughter Was Born With Down Syndrome

We are quickly approaching Alisa’s first birthday, and the anticipation and excitement at our home is palpable. As with any time of celebration, I have been feeling rather nostalgic, reflecting on where we were one year ago and where we are now. I’ve found myself thinking frequently, “If only I knew then what I know [...]