Born Different

Photo Cecily Johnson

My daughter is three and half years old and a tiny tornado of love, laughter, and light. She can count to 10, and she knows her ABC’s by sight. Some people are surprised that she knows her colors, but I’m not. She knew those first. Her absolute favorite things in life are Daniel Tiger’s Neighborhood, her dad’s iPad, and Pharrell’s hit single “Happy.” She can dance like nobody’s business.

Her name is Dorothy, and she has Down syndrome.

I try to tell people how cool she is, but if I mention the words “Down syndrome,” I get a lot of looks that imply sadness or even pity. I can’t understand these reactions anymore. Dorothy really is cool. Her therapists tell me she is especially fun. Her school teacher loves her to death, and I can’t blame her.

Every time we walk into a doctor’s waiting room, she runs up to the nearest seated person and says “Hi!” She will especially target you if your lap looks comfy or if you are holding a personal electronic device of any kind. At first, I tried really hard to stop her from doing this, then I realized that most people were okay with it. It sometimes gets weird when she runs up to a man and calls him “Dad!” but I just say “Oh honey, he’s not your Daddy!” and share a laugh with the accused.

When Dorothy was first born, I thought I had every reason in the world to feel completely devastated. One of my biggest fears in life was of having a child with Down syndrome.

I prepped myself, though. On the suggestion of my best friend, I read the birth story of Nella Cordelia online. I wept through the entire thing. When Dorothy was born, and we received her diagnosis, I was in a very fragile post-birth state and I dreaded telling my family and friends. I never got in as bad a shape as Kelle had been in, but we all have our own ways of dealing with grief.

And the feeling was definitely grief at a time when I felt I should have been blissfully happy.

The way we told our family was really difficult. Dorothy had been sent to the NICU for blood-related issues. She ended up in the NICU on the very day we were supposed to take her home. We invited our family to my hospital room at a prescribed time for “an important talk.” My mother and both younger sisters were there.

I kept silent while Sam announced the diagnosis and explained a little bit about what the baby was going through in the NICU. I couldn’t even keep eye contact with my mother. I laid propped-up-to-sitting in my hospital bed, eyes down, crying silently. The caseworker who had encouraged the meeting was present and waited until Sam was done to ask if anyone had any questions. My mother said, “What do we do next?” That was heartwarming.

My sister admitted that she had a suspicion there was something not quite right. I was very grateful that she said that. I had spent days in a world of medical staff not saying anything about the diagnosis when it was all I could think about.

When I finally spoke to my family, I said something I hadn’t even wanted to say out loud. I hadn’t even spoken of it to my husband. I choked on the words.

“I wanted Genevieve to have … a sibling. Now it feels like … like I have to have another baby.”

I burst into tears. My sister comforted me. “She has Nathan and Jonah. They’ll be there for her!” More tears and much relief. Her children are older than mine and they’re the perfect comrades and protectors.

Other reactions were not so comforting.

Our pediatrician’s first words upon meeting Dorothy were: “Did you not take the prenatal screening test?” The words hung in the air between us. Actually, we did not. Why would you ask me that? Is it because you think I may have terminated my pregnancy if I’d found out she was different? How nice of you to bring that idea up when I have a newborn in my arms! A friend relayed that she had mentioned to a colleague that she knew someone who’d just had a baby with Down syndrome. He said, “Is she going to keep it?” She was shocked at his comment. The man was sincere.

We were quickly finding out that “old school thinking” is still alive and well.

Another friend who came to visit in the first week we were home told me if she had a baby with Down syndrome, “I’d probably feel like killing myself!” She laughed nervously. Every time I tell that story I feel myself reeling from the absence of tact.

Now that Dorothy has been a part of all of our lives for over three years, I think it’s safe to say that no one in my family is immune to her charms. She loves everybody, especially her big sister Genevieve. We haven’t really said anything to Genevieve about how her sister is “different.” It just never came up.

I have a friend who grew up with a younger brother who also had Down syndrome, and she said it only came up for her when she saw her mother crying over a milestone he achieved. We shed tears over Dorothy’s first steps, and Genevieve just rolled with it.

One day we will sit down and explain it all to her. She’s five now, and I think another couple of years will make it easier to process. I just don’t know what to say. Dorothy is not really THAT much different. The National Down Syndrome Congress has a whole ad campaign dedicated to the slogan “More Alike Than Different.” It really strikes a chord with me, because I know it to be true.

Dorothy grabs everything within reach, she makes a huge mess when she eats, she cries when she doesn’t get her way, and she steals her sister’s toys to get attention. All in all, she’s just a regular kid.

It took me about six months to adjust to the idea that we really had a child with Down syndrome. I’m not going to pretend it didn’t affect me. I found other moms of kids with Down syndrome and we have occasional playdates. It’s nice to meet people who understand the constant churn of therapies, foot braces, heart surgeries, ear tubes, special programs, ECI, PPCD, ARD’s, etc.

There are many many different ways to be born different. Dorothy is different, yes. But she’s more like everybody else than we probably realize.

Cecily Johnson is a photographer and mother of two lovely girls. She has lived in Austin since 1988.

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Comments (5)

  1. Mary Helen

    The first person with Down Syndrome that I ever really got to know well was my friend’s older sister. Apart from her voice sounding a little different and her face looking a little different, she’s really just like anyone else. So much so that I rarely remember she has Down Syndrome. To me, and certainly to her sister, she’s just her – a funny, affectionate person. Your daughter sounds like a wonderful little girl. When people get to know her they’ll see past Down Syndrome too, and simply enjoy the unique person she is. If they don’t it’s totally their loss.

  2. Erin

    Thank you for your very honest, heartwarming story about your daughter. I enjoyed reading it. Thanks for sharing so others can learn from you. Erin @parenthappy.org

  3. Kimberly Craig

    Cecily, I love this piece that comes from your heart. Both of your daughters are beautiful, and very much loved! I only see yall through facebook, but let me tell you, you have been blessed with two wonderful girls! Your girls are definitely more alike in the amount of love you and your husband have for each of them! Keep advocating for children with Down Syndrome.

  4. Susan Maccarelli

    This is lovely and I the photo is adorable. Even for people not in the exact same situation, the theme of something seeming horrible at first but turning out to be a huge blessing is something we can all relate to. So great of you to share this!