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

Boulder, 2013 ((Transforming Inequality Through Peaceful Rebellion))

“Swatting the air with the back of his hand, Tour de France director Christian Prudhomme says he has nothing to say to a group of female cyclists hoping to one day ride in the sport’s greatest race.” That familiar grit returned to … Continue reading

“This is the only time in your life…”

“This is the only time in your life when you can focus on your sport and your sport alone,” his stolid words echoed through the natatorium while writing today’s workout on the whiteboard. Sounds like hell, one side of me … Continue reading

Lessons Learned in Running a Marathon

During my freshman year of college, I heard this talk at church based on a book called “The Dream Giver.” The gist of the story is that God has put dreams on each of our hearts, and through taking the courage to pursue those dreams, and facing any and all necessary conflict, God will not only change us in the process, but use our dreams to serve His purposes to change the world.

I remember walking back to campus that sunny Sunday afternoon with my friends, all jazzed up about the dreams that were filling up my heart, fresh blood filling my veins. And I started writing down dream after dream, some small, and some big, some common and some less common, and I created what has become known to me as my bucketlist.

In fact, if you hang around me long enough, you’re bound to hear me sporadically get inspired by an idea and I’ll shout out loud, “aw man, that’s going on my bucketlist!” (and as a side note, if you ever want to check it out, just come over and use my bathroom. It’s taped to the wall next to my mirror so that every day I am reminded of what I’m living for and, most importantly, who I’m striving to live for.)

Anyway, as you probably guessed by the title of this, a marathon was on that list. I didn’t really know what the greater purposes were behind that dream back when I wrote it on the list in 2006, but I couldn’t shake the fact that I just had to do one before I died.

So back in the spring of 2010, a few friends and teammates from college were doing the Baltimore Marathon and I knew that was my cue. At the time, I was reading this book called “A Million Miles in a Thousand Years” by my favorite author Donald Miller (if you’re looking for a book that will get you up off of your… chair… I highly suggest you read this). In it, he says, “…humans naturally seek comfort and stability. Without an inciting incident that disrupts their comfort, they won’t enter into story. They have to get fired from their job or be forced to sign up for a marathon. A ring has to be purchased. A home has to be sold. The character has to jump into the story, into the discomfort and fear, otherwise the story will never happen.” The day I read that was the day I clicked “register now.” The story was happening. No more thinking, no more dreaming, no more “one day…” DOING.

And so since that fateful day back in April, I started learning some lessons. Some things I learned pretty quickly. Besides learning right away that 26.2 miles is a LONG distance, I also learned that…

-When you go for a run, don’t lock your car keys in the car unless you want to wait an hour for triple A to show up

-My toenails will probably continue to fall off every other year

-Don’t run past McDonalds after eating ice-cream for dinner… that won’t feel too good.

And I’m continuing to learn stuff. For one, I’ve been trying for three years to race for HopeSprings, a non-profit HIV ministry here in Baltimore. The Baltimore-Towson metropolitan area ranked second in AIDS cases in 2006. This organization was created out of the fact that the church has the call to love and engage in the culture around us. Since my involvement in the ministry in 2008, God has changed my life by showing me His incredible love and grace and beauty that HopeSprings so beautifully epitomizes. After several months of planning, and brainstorming, and dreaming, this year it will happen. You can look for it on the website soon (www.hopesprings.org). This will be an opportunity to race for a purpose and change your life and others’ in the process.

I’m learning, or rather re-learning the practice of discipline. As a division 1 swimmer at Towson, I honestly thought I had that part covered. But staying motivated when you have 40-plus girls cheering each other on and a coach who won’t let you get away with skipping a workout and a championship title to defend looked a whole lot different then training mostly by myself for a race with no potential consequences if I didn’t end up “succeeding.”

But most importantly, I have learned that it’s easy to sign up for the things in life that have little to no risk. Anyone can do that. But to live a life worth telling stories about… for that you have to DO HARD THINGS. It’s my new motto now. DO HARD THINGS. When I’m trying to decide whether or not I should do something, I now have this filter where I ask myself, “will this be hard?…” “Yes.” “Good. Then it will be worth it.”

Hard things allow us to grow. Hard things take us outside of the safe confines and familiarity of our comfort zone. Hard things move us from sitting to standing, from dreaming to doing, from complacency to action.

Through my training and racing, I was reminded by how much better off we all are when we connect to each other, when we spur each other on, when we team alongside each other do life together. The first time my boyfriend and I went running together (in the rain nonetheless), I quickly realized that if I was going to keep running with him, I’d have some catching up to do. Literally. Besides the fact that he’s faster than me, he’s also a good 6-7 inches taller than me. I mean, we’ll be walking somewhere and I’ll either powerwalk to keep up with him or let out a friendly, “Brian!” and he’ll smile patiently as we adjust to each other’s strides. By the time we’re a mile in, we’re on different paces and I’m chugging along with my iPod, knowing he’ll be there at the finish line, as if to be saying, “come on, you can do this. We’re in this together.” And so that’s how it would go. We’d run and at the last stretched of my run, I would muster up all the energy left within me and there would be this awesome person just yearning to reach out and give a high five.

It’s kind of how it is with my dad too. For 58 years old (sorry Dad!), he still has so much kick in him that I really have to push myself to end a run by his side. Though I can probably one-up-him on distance now-a-days, this man ran alongside me every since I could remember, always with patience, always with endurance, always with heart.

Similarly, I was going on a run (by myself this time) around my neighborhood back in the fall. And I was about halfway through my run when I looked across the street and there was this man looking straight at me with his hands in the air giving me two giant thumbs up, smiling. And so I took off running. Those last two miles, I was running off of sheer adrenaline and encouragement. I mean, it’s as if God himself put this guy there, along my running route, to give me the motivation and encouragement I needed to bang out those last two miles.

Growing up in the Christian faith, there’s this verse I came across that’s kept me going through many practices and meets. “Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart” (Hebrews 12:1-3). And so I’d be in the water envisioning the “great cloud of witnesses”- people who have inspired me and encouraged me to keep at it-having seen the dividends of hard work paid off.

And when I find myself short on faith, short on energy, going through the hard stuff, the conflict of life, I go back over the scenes of joy of seeing it all pay off, that moment when you’re reminded that every single step was all a part of the journey.

And so I saw a man bring me back to that point, back to that point where we see just why we all need to keep spurring each other on. That we can’t do it on our own. That even if we could do it on our own, it wouldn’t be half as enjoyable. That no one is alone. And it sounds so simple- spur each other on. Encourage each other. Each of us is going to have a time in our life when we are going to want to lay it on the ground, toss it in the trash, hang up the towel, and give up. But giving up is easy. Keeping together takes work.

On the day of the marathon, I was reminded of this again at mile 23. There was this man next to me, paralyzed from the waist down, using a seated bike to race through those 26.2 miles. And I watched him churn his arms as if to say no one is excluded from this “great race.” And I saw young women wearing t-shirts with names on the back of people who’ve passed away that they were running for, all the while Sara Groves shouting to me through my iPod of all the saints who’ve gone before

At some point, I realized that we’re ALL running this race, but it’s up to us to decide who and what we’ll run for and how we’ll get to where we’re going and when. That time will lapse regardless of whether or not you are pursuing your dreams and we might as well risk something big, something beautiful, or else we will die with unfulfilled dreams and unexplored possibilities. That life without such risks or dreams will result in living boring stories. And I think we are all made to want to live some daring stories. And if nothing else, next time you’re out in the neighborhood, give someone two thumbs up and send them along their way.