When Your Twin Has Down Syndrome and You Don’t (Perfectly Human by Vicki Vila)

“Mommy, do I have Down syndrome too?”

My four-year old daughter asked me very matter-of-factly, without fear or expectation, only with curiosity. She does not, in fact, have Down syndrome. Or maybe she does, in the sense that it will forever be part of her identity as a fraternal twin.

Her other half, our son, was born with the chromosomal disorder known as trisomy 21, or Down syndrome. So what does this mean for his sister? The common wisdom goes that twins are two parts that make a whole, each integral to the other. So I felt a bit cheated, for my sake and hers, when we learned of our son’s diagnosis at birth. That cutesy twin stuff would be beyond our grasp, I thought. The babies won’t be the same at all. I never did join a twin club, focusing instead on meetings of our local Down syndrome support group because there was so much to learn.

At first, I was proven right. Our son wasn’t strong enough to nurse, and he even needed a feeding tube for a short time, while his sister suckled easily and fell asleep next to me, all warm and cuddly. She sat up at six months and walked at eleven. It took him fourteen months to learn to sit and more than two years to walk. While he stared blankly at the world, trapped in a body about as sturdy as a cooked noodle, she tackled it. He sat quietly, complacent and pliable. Many a toy was snatched from his chubby fingers.

But as they’ve grown and changed, so have I. I need not measure the sameness of my twins by looking at superficial details. Internally, they share the same spark. In each other’s presence, my little gemelli ignite, lighting up a room with their laughter and mischief. Both approach life full-tilt, head-on, arms wide open, eyes wide shut, fearing little and falling often. They both love books and animals, especially dogs, and will put their own lives in danger to dash across the street and pet whatever mutt is out for a walk. Also, they are stubborn as oxen, and about as ugly when things don’t go their way. My daughter we have been able to break to some degree, but her brother’s most favorite word I fear will always be “no,” and his default position will be head down, mouth in pout, throat filled with a whiny cry of defiance.

But what does it really mean when your missing puzzle piece, your twin, has Down syndrome, and you don’t? This will either be a most irrelevant question in my young daughter’s life or a most important one, and I may never know which. After all, she has always developed a whisper away from a person with Down syndrome, a distinction she shares with no one in our family, including her older sister, who is seven.

From my limited vantage point, here is what it means to be her:

It means you will have endured years of getting your hair pulled and your head hit with dolls, ropes and cars. It means that when you say, “Let me help you,” a phrase that comes to you as naturally as breathing, you might be met with a stern “No!” and a turned back. It means that when you are trying to sit and pay attention to the teacher, your twin might come sidling up, plop down nearly on top of you and start pulling the barrettes out of your hair. It means that every toy you have, especially the ones that talk, will be greedily snatched by said twin, who will immediately proclaim it “mine.” Karmic revenge for how you behaved as a toddler, perhaps.

Having a twin brother with Down syndrome also means that every time you cry (usually because you have been scolded), he comes running over with a tissue. It means when you aren’t around, he will go looking for you and ask about you incessantly. It means that he will imitate everything you do, especially the bad things like throwing tantrums and spitting food, because he looks up to you and thinks you are the greatest person ever, outside of his older sister.

To all you twin parents, I ask: Does this sound much different from a day with most twins under the age of five? So maybe the “Down syndrome” aspect of her twinness isn’t as important as the “brother” part of it. Boys will be…well, you know the line.

For now, I take comfort in their dynamic. But I worry about the years ahead, even as I anticipate them with great excitement. You’ve read my take, but what will she think about having a twin with an intellectual disability? That’s the question I’m burning to ask. Will there come a day when she truly notices that he’s “different?” Will she always be so willing to help him, to play with him? What if she’s embarrassed by him, or worse, what if someone is really mean to him or calls him “retarded” in front of her? What will she do? Can I even equip her for that moment? How will this affect her perception of herself? I imagine the weight of all this as heavier for a twin than an ordinary sibling.

What if she has a date for the prom and he doesn’t? What happens if she gets a boyfriend before he gets a girlfriend? Or vice versa! One thing I can picture: her getting her driver’s license first and him gleefully barking orders to his “chauffer” about where to take him.

Some of these thoughts make me laugh, while others fill me with dread. But no matter, I cannot write the future. All I can do now is answer the question.

“No, honey, you don’t have Down syndrome,” I reply. “Only Nino does.”

“Oh,” she says back. “But why?”

“I don’t know. That’s just the way you were made.”

Amen.

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Vicki Vila is a freelance editor and writer who keeps a blog at www.modernmessy.wordpress.com.

 

 

 

About Amy Julia Becker

Amy Julia Becker writes and speaks about family, faith, disability, and culture. A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, A Good and Perfect Gift (Bethany House), and Why I Am Both Spiritual and Religious (Patheos Press).

Comments

  1. Great family portrait, Vicky. Thanks for sharing it with us.
    Tim

  2. This is beautifully written! Your daughter will grow up with strength and a level of compassion toward people with disabilities that not very many people possess. The relationships between siblings on which one is disabled and one is not are so precious. May your home be blessed with more love than you could ever imagine.

  3. A beautiful story and a very special bond that will last a lifetime.

  4. I’m a parent of a child with Down syndrome and I happen to be a fraternal twin. I love the line about karmic revenge for snatching toys as a toddler.

  5. Thank you for sharing your story. It means so much to know that someone else understand how I feel even if our stories aren’t identical – they share many common threads.

  6. I,too, have a twin brother with Downs. We just turned 40 years old a month ago. I must admit i have my ups and downs still knowing my twin is different from me. We do still share a bond that cannot be explained. Now that I have my family of 4 kids, I often wonder what it would be like if he too had kids of his own. I miss not sharing those special moments of what I think it would be like but he is so special to everyone in our family that I find comfort in that knowing he is so loved.

  7. Dawn J. Fraser says:

    Thanks for your moving piece Amy! I have a twin brother with Down’s Syndrome- and I’ve never met another set of twins like me and my brother, but I can say that my life has been a journey of learning to live in the moment.

    To answer some of your questions, your daughter probably already knows that her twin is ‘different’. I knew that my twin brother Duane had special needs from my first memories at about 3 years old. Because of this, I’ve always had a strong sense of equality and have never seen him as anything but love. When we were younger, it meant learning to share and have fun like any other twins, but I also knew that I was a natural ‘go to’ in case there was anything that didn’t make sense. To the outside world, it meant explaining why my twin was in a different academic track, or sometimes a completely different school, without making them or myself feel awkward about it (which was sometimes easier said than done). I tended to have the best friendships with people who were open and cool with both Duane and I, which showed me alot the character of those who I respected. When people used the ‘R’ word around me (in general), it meant learning to tell people that I don’t agree with their language, even if they didn’t know about my experience. Now that I have moved out of my parent’s house, it has meant trying to explain why I can’t come home as much as before without feeling like I’ve left my better half behind. And now that my parents are getting older, it has meant recognizing that one day I might need to be his caretaker. The journey never ends, but with your guidance both your twins and the outside world will understand and respect your journey to treat them, as much as possible, as equals.

    (BTW- I told a story about my Duane teaching me a lesson about sportsmanship through the Special Olympics. It can be found at http://youtu.be/W64XQaBpmkA)

  8. Today my twin daughters turned eighteen. Grace has Down syndrome; Rachel does not. I always say “Grace came with a helper.” While opening presents this morning, Rachel read aloud the cards to Grace, because Grace cannot read much at all. Then both oohed and ahhed over the gifts with the rest of our large family watching (we have eight children–the twins are #5 and #6). I worried about those “big milestones” and how it would go. As they approached sixteen and Rachel practiced driving for her license, Grace counted the days until Rachel could drive the two of them to Starbucks for coffee. Grace joins her four other sisters in “when-I-get-married” talk, but deep down I know that possibility is slim or non-existent. I think, however, she will thrill at being in her siblings’ weddings and will be the coveted “Aunt Grace” helper once her siblings start their families. Sometimes Rachel and her older siblings do activities Grace is unable to do. Those are the sad times to me. She says she wants to “be big, like they are.”


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