Maggie McKelvey

@maggie-mckelvey | contributor
Maggie McKelvey lives in Mount Airy, Maryland, with her husband, Matt, and her two children, Ava (4) and Michael (2).

Ask My Son If His Sister With Down Syndrome Is Different Than He Is

Recently, I had the opportunity to take my 3-year-old son Michael on his very first field trip. It was your usual fall preschool excursion, complete with a pumpkin patch, hayride and of course… the boo barn. It was tons of fun for Mommy and her little man. On our way back to the car, we ran into a group from another school. The students at this school have various disabilities. Most are nonverbal and non-mobile, many use wheelchairs or specialty strollers. Like any curious 3-year-old, Michael began asking questions. “Mommy, why does that boy like me have wheels on his chair like that?” I immediately responded with, “Well, buddy, sometimes, children and grown-ups have difficulty walking and they need some help to get around so they use wheelchairs.” “Like when me and Ava get tired of walking and you and Daddy carry us?” “Exactly, Michael, but it’s all the time.” “OK, Mommy.” At the end of this 30-second conversation, the aide pushing the little boy in the wheelchair in front of us turned around and said, “Thank you, buddy, for asking such a great question. It’s always nice to ask questions. We usually don’t get that. We usually just get stares.” Obviously, that statement went over his 3-year-old head, but it stuck in mine the entire way home. As a mother of a child with Down syndrome, I’m no stranger to stares. However, most of my stares are followed by, “Look at that beautiful red hair!” or “Well, aren’t you the cutest thing!” It’s not usually what I fear the most. It saddens me though, that some children cannot go on something so simple as a field trip without being stared at. They cannot feel the warm October sunshine on their face or hold their prize pumpkin without being labeled as different. It saddens me that, for whatever reason, some adults cannot embrace the similarities we all have and don’t teach their children that different is beautiful. Children are naturally curious; they ask questions. So often when they ask a question that’s uncomfortable for the adult, such as “ Why is that child in a wheelchair?” or “What is Down syndrome?” they’re hushed or told “We’ll talk about it later.” Sometimes later never comes, and instead of it being a learning experience, children come to fear the unknown and label it as bad. This is where stigmas start. My daughter Ava was 19 months old when Michael was born. She doesn’t remember a time when he did not exist. When Ava had in-home therapy, Michael was there. When Ava said her first word, he was sitting right beside her. When Michael started to crawl, Ava was butt-scooting next to him. When Michael took his first steps, Ava, not to be out done, took hers as well. To Michael, there’s no difference. He doesn’t see Down syndrome. He sees Ava, his sister. She’s the one who takes his toys and tries to mother him when he falls down. She’s the one who he draws pictures for. She’s the one he chases down the hall in the morning when they should be brushing their teeth. She’s his cuddle buddy. She’s the one who wakes up early on the weekends so she can pick which show she wants to watch first. She’s the one who will play endless games of Spider-Man with him and never once complain. He’s her best friend and biggest cheerleader. If you ask him if he thinks Ava is different than he is, his response would be, “Yes, Ava is a girl and I am a boy.” It’s as simple as that. Follow this journey on Ava’s T21 Foundation.

When I First Knew My Daughter Had Down Syndrome

I think about the day Ava was born a lot. I think about having contractions all night but still going to work in the morning. I work at a hospital, so I figured I’d be in right place. I think about calling my husband at work, telling him our baby girl was coming. He got caught in traffic and was so excited he called the police to ask for an escort. I think about the nurse checking me and telling me it was time to push. I think about the first time my OB-GYN placed my daughter on my chest and I saw her tiny little face and her red hair. I think about the first time I knew that she had Down syndrome. No one said anything. No longing stares or questionable glazes. Everyone held and cuddled this new precious life. I sat in my bed and quietly smiled, thinking in my head, “Does she? No, she can’t. But what if she does?” They took my baby and my husband to the nursery for her first bath. I was alone when my nurse came in to transfer me to my new room. As she was helping me into my wheelchair she said, “First we need to stop by the nursery, a neonatologist is there and has some concerns.” Here it comes. “About what?” I asked. “There are some concerns for Down syndrome,” she responded. At that point my whole world fell apart — or so it seemed at the time. All of a sudden my world went from what kind of diapers to choose and pink onesies to possible holes in my baby’s heart and pulmonary hypertension. My visions of taking my little girl to get her nails painted and helping her pick out her prom dress were taken away from me. In place of those dreams were fears of what was to come. We hadn’t prepared for this. What did we know about raising a baby with special needs? They didn’t write a chapter in my pregnancy book on this. If they did, I didn’t read it because this wasn’t suppose to happen to me. I’ve wished so many times that I could go back to that moment. That I could go back and hold my own hand when I felt like my world was crumbling. That I could be there to tell myself and my husband that our baby doesn’t have all the health problems they first suspected. That she is an absolute joy and has been since the moment she was born. That our little girl does things in her own time, not when we want her to. That she can sing her ABC’s and count to ten. That she’s in an inclusive pre-k program and comes home every day talking about her friends. That she loves to have her nails painted and go shopping for pretty dresses. That she has more baby dolls than she can take care of but still tries to fit every single one in her Bitty Baby crib at night. That she loves with her whole heart and can light up your world with a smile. That while she may not be what we expected, she was everything we wanted and could ever dream of. If I could, I would go back and tell myself, she makes your family whole. The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Woman at Grocery Store Asks to See Baby With Down Syndrome

When my perfect 5-pound daughter was born almost five years ago, we were given a diagnosis of Down syndrome. Fear of the unknown consumed our lives. Constant worry filled our days and nights. What will her future be like? What will our future be like? I became the overprotective mama bear and mistook kind smiles from strangers as glances of pity. Scared and in love with this little baby, I felt so lost. When Ava was about 1 month old, we took a mommy/baby trip to the grocery store. In the canned goods aisle, my life forever changed. A stranger was pushing her cart by us, looking over her shoulder at my little baby in the carrier. She came back around and asked if she could take a closer look. When she saw Ava’s sleeping face, a warm, bright smile spread across her own. “Thank you,” she said. “This brings back so many wonderful memories.” Just then, a teenage girl came up and gave her mom a hug. She too had Down syndrome. This kind stranger hugged her daughter back and placed her hand on my shoulder. “You have been tremendously blessed; everything will be OK, you’ll see.” I stood there with tears in my eyes and gave her a shaky, “Thank you.” I felt like a huge weight had been lifted. We would be OK. She would be OK. This woman gave me strength to start to raise my daughter to do and be anything she wants. Today Ava is a spirited preschooler with so much love to give. That kind stranger in the grocery store will never know the gift she gave that day. She gave me the ability to push aside fear and start living our lives for our little girl. She was right… our lives have been tremendously blessed.