1 Mom on Her Experience With Her Daughter Having Down Syndrome: "It's Better Than I Imagined"

By Murphy Moroney

Margot — a mom to a daughter with Down syndrome and a volunteer at the Special Olympics in Abu Dhabi — recently opened up to Humans of New York about what it's like to have a child with the chromosomal disorder. She candidly explained that although she's thrilled to be a parent, raising a child with Down syndrome can be challenging. Between learning the news about her child's diagnosis, dealing with scary medical issues, and doing everything she can to raise her daughter to be independent, she admitted it can wear you down at times. Scroll through to get a look at Margot's emotional story.

On learning your baby has Down syndrome.

"At ten weeks the blood test came back with markers for down syndrome. Then the next week we found out there were further complications. There was a grieving process for both of us. We had to realize that things were going to be different. I think it was harder for my husband, even though he didn't cry as much as me."

On being positive.

"My husband is a bit of a jock, so I kept sending him videos of down syndrome athletes. I wanted him to get excited about the possibilities. We drove to the beach one weekend shortly after the diagnosis, and the entire ride we talked about the future. We talked about how much of our daughter is going to be like any other child. And how we can still be a family. We can still go to Disney World. We can still have adventures."

On the high possibility of miscarriage.

"There was an eighty percent chance of miscarriage. I walked around every day not knowing if my daughter was still alive. Every two weeks I went to the doctor to check for a heartbeat. I always asked them to face the ultrasound screen away from me. I couldn't bear to look."

On having a difficult delivery.

"At week twenty-two my placenta began to fail. I was hospitalized at week thirty. The blood flow through the umbilical cord had been reversed. The delivery took three days. Her heartbeat was dropping. The chance of stillbirth was so high. During the emergency C-section, there were thirty people in the room. My husband said that all of them had an 'oh f*ck' look on their face."

On the reality of maternity leave.

"My maternity leave was spent bouncing between hospitals, therapists, and the insurance company. I still talk to a doctor every single day of every single week. My daughter has had five surgeries already — two on her heart. I have to fight so much. It took a month of phone calls with the insurance company just to get her a single shot that she needs to stay alive."

On not hitting milestones.

"We live in a different world. My kid doesn't babble. Doesn't eat food. Doesn't crawl. My husband is lucky because he has no idea what the milestones are supposed to be. But I do. I know what a fifteen-month-old should be able to do."

On parenthood.

"It's better than I imagined it was going to be. Because I'm a parent now. And when you're imagining all these things, it's so hard to picture the love. She's such a happy baby. She gets so proud of herself when she accomplishes something. She never wakes up crying. The one thing that comes easy to her in life is love and happiness."

On being part of the Down syndrome community.

"Even within the down syndrome community, it can be hard to not compare. You've found a group of people going through the same thing as you. And suddenly there are gradations. I follow all these people on Instagram that are my age and have Down Syndrome babies. And it's easy to feel jealous. There are so many differing abilities. Some kids are already walking by now."

On wanting the best for her daughter.

"I want her to be included and have friends and have a community. I want people to say
'hi,' and sit with her, and include her. If no boy asks her to prom, I'm going to be devastated. Because I imagine my own life without friends or social connections and it's so sad. I can't watch her go through that."