Happy World Down Syndrome Day (Thoughts on Growing Up With a Sister With Down Syndrome)

Today is March 21st— World Down Syndrome Day. For those not familiar with Down Syndrome, Down Syndrome is a congenital genetic disorder in which a baby is born with three copies of the 21st chromosome (hence why it’s celebrated on 3/21). One extra chromosome sounds rather innocuous, but results in several physical differences, such as small ears, eyes that slant upwards and poor muscle tone, to name a few of many listed by the CDC.  One thing the CDC forgot to add to their list, though, is that people with Down Syndrome seem to have some of the most joyous smiles. There are often times behavioral differences too, as many people with Down Syndrome face obsessive-compulsive, oppositional, and inattentive behaviors, to name a few listed by the National Down Syndrome Society. One thing, though, that NDSS forgot to add is that people with Down Syndrome tend to be very affectionate, resulting in some of the best hugs and “I love you’s” imaginable.

Photo: MO 2012

Photo: MO 2012

So now, I want you to meet who I’m celebrating this World Down Syndrome Day: my sister Lauren. In case you have any doubts about her age, she is quick to remind anyone that, “I’M the big sister.” Side by side, she at 4’9 and me at 5’4, it’s easy to mistake Lauren as my younger sister. But I’m the baby, and both she and my brother used to make fun of me for that. They even tried to wrestle with me growing up, and, like the picture to the left shows, Lauren still does.

Growing up with Lauren has helped me to see a spectrum of life so rich and big that leaves me in awe of the Image of God in every person. But it wasn’t always that way.
I confess, growing up, Lauren and I went from best play pals to me feeling somewhat jealous of the sisterhood my friends with older sisters experienced. I thought it would be cool to have an older sister to talk about boys with, share clothes with, and who could show me new places, especially since she would get her license before me. But we had our fun, too. We liked putting as many stuffed animals as we could onto my bed then jumping up and down as high as we could on Saturday mornings. We’d dance to loud music in the room we shared and play with chalk outside. I didn’t notice any differences then. She was my sister, and I was her sister.
Then, in elementary school, I remember being in public with Lauren and sometimes kids would stare at her. I would intently glare back at them, hoping they would see how good that doesn’t feel either. But two wrongs don’t make a right. We need to have grace with people who don’t understand, or who are not ready to understand. We need to recognize that there are people who are curious, but aren’t sure what to ask when they don’t know why someone seems so much different than themselves. We need all people to know that respectfully asked questions are always welcomed, and they lead to a special understanding of each other as humans. It’s easy to huddle in groups of your own gender identity, sexual orientation, race, age, and ability level. But something beautiful happens when we spend time with those whose gender identity, sexual orientation, race, religion, age, and ability levels are not our own. I have a feeling a lot of walls could not only come down, but come down with a beatific, thunderous crash that opens up the sky with refulgent rainbows welcoming audacious freedom to dance, dance, dance beneath these wide open spaces.

But let’s be real, here, too. Not everything that goes on in a home with someone who has special needs is rainbows and dancing. I watched my parents cry, throw their hands up in the air, and then use those hands to hug each other as they got through challenge after challenge. Around the time Lauren was seven, her speech was very far behind. She would try to tell my parents what she wanted or needed, but my parents couldn’t understand what she was saying. They would try to talk to her, but she couldn’t understand them. After months and months of feeling misunderstood, anyone would get frustrated and maybe even have a temper tantrum or two, or thirty two. Sometimes when my sister’s routine changes, she gets so upset that she starts yelling and crying at the top of her lungs. It can be hard to understand what exactly causes her to become so distressed in the first place. She’s even thrown things before. But who am I to call her out on this, when just last week I used very colorful language to describe my frustration in not being able to find my cell phone, that lo and behold, was simply hiding behind the one part of the couch I overlooked on the previous 20 search attempts. Oh, and yes, I threw the couch pillows that time when I got mad. No matter how mad my sister or I got, I was fortune enough to grow up with a dad who has the patience of a saint, whose unphased resiliency consistently gives her space and time to breathe in order to calm down, while he goes back to creating Special Olympics track and field practices, or folding laundry, or simply relaxing as though nothing happened. He and my mom teach me just as much as my sister has.

I’m so thankful for my parents’ persistently loving examples. Because everytime I make a trip back to visit, no matter how late at night I get home, one of the first things I do is run upstairs, hop in Lauren’s bed, and give her a big hug. “Sister! You’re home!” she’ll exclaim, half awake, forgiving me of waking her up at 11 PM some Friday night (at which point she’s already been asleep for three hours). She’ll fill me in on how work was and any other important events of the week I missed. It won’t be long before she’ll say, “Alright, Sister, I have to go to sleep. Goodnight.” And usually I honor her request, but sometimes I stall and we get in an extra five minutes that usually consist of us laughing late night giggles over something that probably wasn’t that funny if we were to have talked about it earlier in the day.

Photo credit: SO 2013

Photo credit: SO 2013

When my sister was seven years old, our family got involved in Special Olympics. In 2003, my dad became involved as a track and field coach and introduced me to their team. Sometimes I get to run with them, and meet amazing people like my friend Rob, pictured here. Rob is one of the most joyful people I know and he’s taught me so much about how to love life. His great sense of humor teaches me not to take life so seriously. I love every minute of being around his positive presence.

Photo: MO 2012

Photo: MO 2012

One October weekend in 2012, my dad took a van full of Special Olympics athletes and I to Rhode Island where we competed in a long distance running competition. We all ran fast, earned medals, stayed up a little too late, and laughed the car ride home (once one of the athletes stopped asking my dad every five minutes, “Where are we, Coach Scott?”). On that trip, I captured this picture of my sister’s laugh and I can almost hear her hamming it up as I smile at her face.

Life with Lauren has taught me so much that when I stop and think about all I’ve learned, my eyes well up with tears, seeing how every challenging memory my parents experienced was recycled for something more beautiful and compelling. She taught me patience. That going on walks is more fun when you tread slowly, unlike me, who always seems to be in a hurry. My mom calls her “my pokey puppy.” She’s my pokey puppy, too, and I would never want a race horse instead. She taught me that you can never say, “I love you” too much. And to take people by surprise every once in a while by shouting “cheers!” to life, chugging a glass of wine or beer (She limits herself to one small glass, though. Promise.) She taught me how much more awesome the world is when we practice inclusion, and that parties are so much more fun when everyone has a seat at the table. She gave me eyes to see the Image of God in every single person, and my eyes, heart, the lens with which I see the world are forever tinted with a shade of tight embrace, sanctifying the everyday and turning every moment into the perfect time to laugh.

Happy World Down Syndrome Day.

I love you, Sister.

Photo: SO 2013

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4 thoughts on “Happy World Down Syndrome Day (Thoughts on Growing Up With a Sister With Down Syndrome)

  1. Pingback: Bloggerhood Etc. 3/24/14 | Fatherhood Etc.

  2. Pingback: Bloggerhood Etc. 3/23/15 | Fatherhood Etc.

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