Raising Joey: One Mom's Story of Having a Child With Down Syndrome

Macaroni KID publisher shares her family's journey

By Kara Murphy October 16, 2021

Jennifer Sheran and her husband, Chuck, had two daughters when they were thrilled by a "surprise" pregnancy in 2010. They were excited to find out a little boy would complete their family and had no idea until after he was born that he had Down Syndrome. Jennifer is a Macaroni KID publisher in McDonough, Ga., and talked with Macaroni KID about her experience as a mom of a child with Down Syndrome, and offered her advice to new parents who receive the unexpected news. October is Down Syndrome Awareness Month.

MK: Tell me about yourself and your family.

Jennifer: My oldest is Annie. She's 20 and at college. Carlie is 13 and in middle school, and Joey is 11 and a fifth-grader. I've been married to my husband, Chuck, for 22 years and we recently moved to McDonough, Ga. from Dunwoody, Ga. Both are near Atlanta. I had a long career in corporate public relations and now work independently, along with publishing Macaroni KID McDonough and acting as a coach for special needs families.

Can you share the story of Joey's diagnosis?

It was considered a geriatric pregnancy — I've always hated that term — and so I had all the extra ultrasounds done that come with that, and everything looked good. 

We didn't have any indication he would have Down Syndrome. 

He was born two weeks early. It was July 2, and the Friday before the July 4 holiday weekend. I had a c-section, so I didn't get to hold him right away. They took him away to clean him and told me he'd had an apnea episode, so they put him on oxygen right away. 

Then the doctor came in and said matter-of-factly, 'We think he has Down Syndrome.' They said he had low tone and the slanted eyes that are common in kids who have Down Syndrome. My husband wasn't in the room at the time, and one of the hardest things I've ever had to do was tell Chuck. All he'd been envisioning was the quintessential 'boy' things and this was a shock. We were in disbelief. Because it was the holiday weekend, it took another seven days to get the genetic testing done to tell us for sure. I kept thinking they were wrong. He looked just like Carlie had in her baby pictures. I really thought they were wrong.

What was it like hearing the official diagnosis once it came?

I was in the NICU holding him when the doctor came in and said, yes, he has Down Syndrome. He has tri 21. He said it very clinically. I was in despair thinking: What's going to happen to him? What's his life going to be like? But a nurse came over and told me she had a 36-year-old sister with Down Syndrome and that her sister had a very full life — that she had a job and friends and loved life. That really helped and made things much better. 

Does Joey have a full life?

Oh yes. 

Too often people with disabilities are still very much discriminated against and seen as 'other,' or that they shouldn’t be here. It was expected just 30 or 40 years ago that if you had a child with Down Syndrome, you’d put them in an institution. 

That's obviously changed, but it's taken a long time since then to find out that people with Down Syndrome can do a lot of things everyone else can. They learn differently and not at the same pace, but they do learn. For instance, someone with Down Syndrome has a better chance of really learning to read as a teenager — but by then most high schools are just offering them life skills classes and not much in terms of academic learning. So we're still learning about the brain and how it works and how to maximize potential. 

It was hard when he was first diagnosed — a geneticist told us we'd be lucky if he could string two words together. 

Luckily I was able to do my own research and found we didn't have to have low expectations for Joey. I know he’s not going to be a doctor or lawyer, but I expect him to go to school and get a job and live on his own in some capacity. He's already very independent and can do things like make his own meals. There are even programs in colleges for people with disabilities now, so I would love for him to have that opportunity. And he can definitely string more than two words together. Joey loves to talk. Sometimes we think he'll never stop!

You help other families who are on the same path as you as part of your coaching business, Dezined4Joy. What do you tell them?

I always start my conversations with congratulations, because that’s what you say when someone has a new baby. I want to flip the script of putting negative energy in front of these new parents. Their vision might have been different, but what we envision for all of our children, no matter their abilities, has to change at some point— it’s their lives, after all, and they all have different needs. 

I also advise them to get invested in their local Down Syndrome community because they'll find awesome friendships and amazing people who can provide so much information and support. That's the key: Get people around you who have walked the walk, who are a little further down the road than you are and can mentor and guide you.

I also tell them this is going to be OK. Your child can have a normal life. Sure things will be a little different. The pace might be slower. You'll have more doctor appointments and therapies. But you'll still have all the great experiences and memories that come with being a family. You will have them. They might just look different than what you expected, or come at a different time. But you all will be OK.

What is it like having Joey in your family? 

He is the joy of our family. He has brought us laughter from day one. He's just a ball of love. He gets mad, he gets sad — he gets every emotion other children get — but he doesn't linger in it. He gets over it and moves on to his natural joy.

He just has this natural wonder about life and he gets so excited about little things — like he'll be overjoyed to find we're having pizza for dinner. It's a contagious joy and he can bring anyone out of their shell. 

The world is just a brighter place because he is the way he is. He’s just awesome.