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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This Beautiful Moment Brought To You By Sir Mix A Lot (Or, What I Learned From Dancing On A Street Corner With a Homeless Woman)

Nietzsche

When I first saw her walking down the street, I confess I wanted to ignore her. She was wailing, flailing her hands, and muttering jumbled words I couldn’t make out. On a cloudless 65 degree day, she was walking down the street in a long wool coat, baggy pants, and worn sneakers. The wailing grew louder, and I put on my helmet, fiddling with my bike lock, ready to leave the cafe I just got done dining in. My friends had all left, and my bike lock was stuck. Annoyed at the lock, then annoyed at myself for thinking my dad’s high school U-lock would still work in 2014, I finally got the lock undone and pulled my bike away from the street sign. The woman was walking down the street toward me, and I was coming toward her direction to go down the road that would take me home. I planned on smiling at her and looking her in the eye to say, “Hello,” expecting I might get asked for money. It’s happened plenty of times before, so my thought was not unfounded. But instead something else happened.

Our eyes stopped glancing toward each other, because our ears heard something. We both turned our eyes toward music we noticed coming from the cafe’s outdoor speakers.

Jump On It, Sir Mix A Lot’s 1996 hit, was coming from the speakers for all passers-by to hear. She began to laugh. I began to laugh. She started dancing, moving her hips then pausing them at the precise time when the “dun-na-na-na-nah-nah-nahs” came on, laughing with her whole mouth. I couldn’t help myself. I slid right next to her just in time for the part where you turn around, swinging your arm over your head as though you’re waving around a lasso. Her infectious joy caught onto me, and the two of us—she in her long winter coat, and me wearing a neon shirt and bike helmet— danced like two fools intoxicated by the music and the warm sunshine that sang of spring’s soon-to-be debut.

We kept dancing, and I was grateful they played the extended remix version instead of the regular, as to get every minute in with my new dancing partner. Alas the song drew to a close, and we finished facing the sun, arms extended, our smiles and laughs communicating to one another, as if to say, “Gee, that was fun!”

I asked her for her name. “Terryn,” she replied. “I’m Melissa,” I replied back. She began to walk the other way, and started laughing at a car driving in reverse. I guess she expected it to go forward in drive, and the sight of it going the other direction was enough to set her off laughing. As I turned the corner to head home, she went back to talking to herself. But I was so grateful we got to dance together, if only for those few moments, in lucid clarity.

A colleague I work with was recently telling me about a training she went to in which attendees were required to go out in the community wearing headphones that played a recording of voices talking in various tones to mimic what people with schizophrenia go through. Instructed not to take the headphones off and not to adjust the volume, she and her friends in the training had to complete tasks around the community— find the nearest bathroom, ask someone on the street for directions, etc. “It was the hardest thing I’ve ever done,” she shared. “For the life of me, I couldn’t concentrate, and I felt crazy inside not being able to shut off the noises we were hearing. It gave me compassion. We really have no idea what it’s like,” she reflected.

I thought back to my colleague’s comment as this woman was walking down the street, back to talking to herself, and tried to put myself in her shoes. While I don’t know for sure that she had schizophrenia, I thought about what it would be like if it happened to me. How powerless or misunderstood I might feel. Maybe, I’d just want to love everybody I’d meet so fervently, but for the life of me, my words, thoughts, and behaviors wouldn’t be able to follow through. The woman I danced with, though, had a beautiful lucid moment, as though she was trying to love like that.

It reminds me of my favorite poem by Mark Nepo called “Life in the Tank.” In it, he describes an experience in which a child filled a bathtub for his fish to swim in while he cleaned their fish tank. Though the fish had the entire tub in which to play, they stayed huddled together in a corner, as though they never left the tank, when all surrounding them in every direction was fresh water to explore. Muses Nepo,

“Life in the tank made me think of how we are raised at home and in school. It made me think of being told that certain jobs were unacceptable and that certain jobs were out of reach, of being schooled to live a certain way, of being trained to think that only practical things are possible, of being warned over and over that life outside the tank of our values is risky and dangerous.”

I wonder if the same can be said for our interactions with people. How many of us were told what people were “safe,” what people to avoid, who to talk to, and who to not even make eye contact with? Many of us were cautiously told “don’t talk to strangers” by someone who loved us with the best of intentions.

But is that the best we can do out there, in the real world? What soul-to-soul conversations have we missed because we were following the “don’t-talk-to-strangers” framework? What divine spark have we missed out on; what song did we miss dancing to, what high five did we not exchange because of the “life in the tank” mentality?

Caution has its merit, and so does instinct and prudence. Our hearts can’t be given away to everyone and anyone. But I wonder if our hearts are more malleable than we think. I wonder if we are meant to escape from the constricting layers that tell us to “just keep walking,” as if to keep every part of ourselves intact, not risking the opportunity for community and connectedness?

All of these things I ponder as I bike home after my interaction with my dancing stranger friend. The news in most cities- Baltimore, no exception- often shout of violence and try to covertly scare citizens into never coming outside, or to go outside- if you must- but don’t you dare come out of your shell of self-protection. My heart breaks over stories of innocent people victimized by violence for no apparent reason, other than the cliche “they were in the wrong place at the wrong time.” But maybe it’s time we start daring ourselves just a little bit more to believe in the possibility that we might be “at a great place at a great time.” That now is the perfect time to start dancing to the music- the music that may or may not even be audible. To be a little foolish. To invite someone new into conversation with dignity and sincerity. Yes. I’ll bike through these streets with both circumspect acuity and a posture of openness- open and ready to sing, dance, or high-five when laughter is our gain and excessive guardedness our loss. 

Copyright: O'Doherty Photography

One of my favorite events that brings community members together is Baltimore Bike Party, as pictured above. 
Photo credit: O’Doherty Photography

26. (I’m Still a Dreamer)

I had a conversation on a plane last week with a woman who lamented, “I just feel like I haven’t accomplished anything and I’m 65 years old.” This woman, mind you, runs her own business, volunteers with her Church, has raised 3 daughters, is active in the lives of her grandkids, and has poured out her painful experience of divorce to support other friends who’ve walked the same crestfallen lines.

“I thought I’d be married by now,” I heard another friend say.

“I thought I would have been more successful at this point in my life.”

“I thought I would have accomplished more by now.”

Do you hear voices you know in those sentiments? Have you ever felt that way?

I turned 26 a few weeks ago. From the get go, I knew it would be a hard number for me. Throughout college, I talked non-stop of serving in the Peace Corps in Africa post-college and then attending grad school immediately after. “I kinda know what I’m doing with the next four years, or so, at least,” I shared with a friend a few weeks out from college graduation. “I’ll spend two years overseas and then two years in grad school, and by that time, gosh, I’ll be 26!” I remember exclaiming, and wow, did 26 seem much older then.

Peace Corps was my dream. My passion. The thing that drove me to put all my energy into swimming Division 1 athletics now, because one day I would be on a plane headed off to Africa. I saw the faces of women and girls I met on a short term trip back when I was 20 in Botswana. I dreamed of meeting more of those animated smiles. I scribbled “Peace Corps” all over notebooks, especially my senior year, when I was tired of learning about people and just wanted to be out in the vast, wide open world with people. I’d dream about which country I’d get selected for. I poured over University of Denver’s Masters in International Human Rights program with vigor, glancing on their website when I should have been writing papers. Life seemed big, seemed open, seemed exciting and filled with possibilities and wonder.

Until that stopped.

It was January 20, 2010, 10 minutes before the close of business on the day before I was supposed to leave for South Africa with Peace Corps. I had knots in my throat all day and stared at the phone until 4:50 PM, pacing my room with trepidation, sadness, loss, fear, and most notably, uncertainty. My mental health had taken a downward turn. During my sophomore year of college, I developed anxiety for the first time in my life. I began to withdraw from my daily activities, including friendships, then entered in anxiety’s menace counterpart: depression. Throughout college, I attended a couple of clinical counseling sessions (but couldn’t afford to do a series of consecutive sessions that would have enabled me to really address my issues) and relied on my anxiety/depression medication and prescription sleeping pills. It was something I hoped would get better, would go away. I didn’t think it would turn into something that would take me away from the dream I’d been building.

But it did, and I made that painful phone call to say I wasn’t going to be leaving tomorrow. After receiving a few minutes of condolences and logistical instructions (“You can expect your passport to be mailed back to you in approximately 4-6 weeks”), I bawled my eyes out. My dream lie crushed, broken, smashed on the floor, like a million photographs shredded into one thousand pieces, all within a matter of a 5 minute phone call.

Now what?

First thing was to schedule an appointment to see a psychiatrist. It was the best gift I ever spent on myself. Through medication and  counseling, I began to gain new footing and spent my days writing cover letter after cover letter, wondering if anyone would even read the text over which I labored.

But sure enough, I had a job interview one long month later, and within two weeks, was hired as an HIV research assistant for a start date in April, giving me one whole month to re-focus, re-gain strength, and most importantly, breathe in the beauty of the spring air around me underneath the solace of Magnolia trees.

So many wonderful things have happened over the past four years; things I could have never foreseen at 22 when I said “no” to my Peace Corps dream. I spent 10 days in Cambodia with a women’s advocacy group. I began weekly therapy sessions, finally able to crawl out from underneath the rubble I felt like I created. I began writing and even got a few articles published. My family celebrated my grandmother’s 90th birthday party, bringing together all of my cousins who are scattered across the US.

But I knew 26 would still bring back memories of realizing that I never accomplished the life goals I had for myself at 22.

Which begs the question…

What do we do when our dreams get smashed? When your dreams are taken from you? When your dreams become trampled upon, left for dead? When that gaping whole in your heart where your dream once was pangs with emptiness and longing for the dream to return?

To find that out, I went back to water, my first love.

I headed out to a reservoir with one of my best friends on my birthday, gathering small rocks and stones scattered along the shoreline. We wrote each of our regrets, fears, worries, and uncertainties on the rocks with a sharpie. All of the things we needed to make peace with. The things we thought we would have done by now- the way it was “supposed” to turn out– and we tossed each and every one in the water. Sunk them. Skipped them. Hurled them like a shotput, letting all of the shame, disappointment, and fear of the future go with the rocks we now released into the water.

It was a holy moment.

A freeing moment.

To acknowledge crushed dreams and to affirm that my dreaming spirit never died; it just got revamped.

The thing I’m learning about dreams is that they are changeable, moldable, adaptable. They are resilient, yet flexible. True dreams offer life, not shame. They guide you but don’t harness you in. True dreams don’t immobilize. They recognize the wind and waves, and move with you, not against you. A passionate current that allows you to be washed over and over again with hope.

It’s that hope I think about when the Bible talks about “turning swords into ploughshares.” I’ve always been fascinated by the symbolism of taking something negative and turning it into something positive, useful, something better and more beautiful. I think that’s what God longs to do with dreams that never came into fruition. To take our crushed spirit and set us on a new trajectory, one that is more open, and free, and ever-passionate. One that accepts that things change, and don’t turn out the way we think they are “supposed to.” Ones that don’t feel too heavy because we can hold onto them tightly enough to put in our blood, sweat, and tears, but loosely enough to let the light in, let in air, let in matter, creativity, open-mindedness, and acceptance.

Right now, I say I want to get married sometime in my 30s and adopt a child in my 40s. But I hear a little bit of my obstinate, so-sure 22 year old self in there. I’m learning that dreams change, including timelines, and to not get so hell-bent on insisting things turn out the way I want them to right now, because who knows, that 22 year old girl who was sooo sure of the future has learned a thing or two now.

And so what about you?

It doesn’t matter if you’re 26 or 36 or 96 or too afraid or too scared.
Your dream is still there.

Oh sure, it may have changed shape since you first dreamed it up, but there’s still something tugging at your heart, calling you into life each day.

It doesn’t matter if you’ve said “no” to opportunities that you just weren’t ready for.

You still have the heart of a dreamer and that can never be taken from you.

May we have the fortitude to express our disappointment in not accomplishing what we thought we would, without shaming ourselves.

May you have eyes to see the amazing things you have done, though perhaps not your main dreams, the things that have shaped and molded you, and given meaning to your life.

May we come to understand that dreams shift, dreams change, and may our hearts be open to new directions, confident that there is something bigger going on here, things that if we were to see ahead of time, all at once, we could hardly contain ourselves in joy.

I’m 26 today…
IMG_1498

  
  

… and I’m still a dreamer.

                                  

   

     

          Have you ever lost a dream? What was that process like?
             How did you gain a new vision for your life?

Here, now.

6.12.11

I was about to start a run yesterday, when I noticed the most beautiful, free-fluttering, yellow butterfly. I peered closer, lifting my leg towards my back to stretch, and pause long enough to notice the black and fellow fur, completely covering what used to be caterpillar, but now has blossomed into this spotted-winged creature.

Being still, like I was in that moment, is hard for me. I don’t know very often how to be present. It’s something that I talk about- being passionate, being fully alive, not missing your life. Maybe I should stick to following my own advice. Nevertheless, it’s something I’m working on and something God is trying to teach me, through many experiences and people.

One of them is my youth pastor, whom I met with last week, and I bought a copy of her beautiful new book, “Unhaling.” The last chapter is titled, “be here now.”

Be here now. Be here now.

The words mull over and over and swirl around my brain, as my feet take to the pebbled trail. “BUT I DON’T KNOW HOW TO BE HERE NOW!!!” I shout out to God, tears mingling with sweat. “My grant position ends in April; I have no idea where my career is going; I don’t know exactly which grad program I should go into… everything feels like it’s changing…… And why, God, WHY, for the life of me can’t I stop thinking about Africa, I trip I’ve been on nearly FOUR years ago?! And why can’t a day go by without me thinking of HIV, and images of orphans, and girls being trafficked and sold into sex slavery, and unbearable poverty. WHY ARE YOU BOTHERING ME WITH THIS STUFF, GOD!!!?” I shout indignantly as my feet hit the pavement harder.

Be here now.
Be here now.

I pick up my pace. Bikers, runners, joggers, and walkers smile at me. But I can’t smile back. My 19-year-old self would have gladly smiled at a fly, but I didn’t feel like smiling at anyone in that moment. And I feared depression has awakened from its nap and once again reared its ugly head, like a hissing snake, slithering in the darkness through a crack in an unlocked door. I quickly slam the door shut, but fear its hissing, mocking voice will come out again.

Be here now.
Be here now.

A red, red cardinal stretches its wings, moving from the path into the shaded branches of the trees.

Be here now.
Be here now.

Squirrels hang upside-down above me, tip-toeing along tree branches, exposing their white bellies.

Be here now.
Be here now.

Bono whispers, then SHOUTS through my headphones, of a journey of running, crawling, scaling these city walls… when, “DAMN IT!!” I mutter out loud. My iPod died, battery gone. Embarrassed, I pray no one has heard me, as I notice little kids with training wheels biking around me. I fear their parents are secretly glaring at me, wondering what my problem is, and successfully avoid eye contact with anyone.

Be here now.
Be here now.

Now that silence has officially overtaken my headphones, I can hear birds chattering to each other in trees along the path, like neighbors across the street catching up over gardening and trash day.

I can now hear cyclers’ dinging bike bells, warning me that they’re about to pass and I envision myself on my next triathlon. This one will be a half ironman and I visualize myself swimming, biking, and running my way through those 70.3 miles.

Be here now.
Be here now.

I watch as a young girl feels the peddling sensation of her knees going up, down, up, down, her dad smiling behind her, as she tries to bike without training wheels for the first time. They’re smiling and laughing and he is not letting go.

Be here now.
Be here now.

My feet hit the pavement harder. I look ahead. About 20 feet in front of me to my left is a deer trotting merrily along the path. “Bambi?” I think out loud, as it leaps over the grass down to the water for a cool drink.

Be here now.
Be here now.

My feet are moving faster now and my tears have stopped and sweat is pouring down my face.

Be here now.
Be here now.

My finish line is getting closer. My chest is pounding. My toenail, bruised and falling off, screams at me.

Be here now.
Be here now.

I lengthen my stride, pumping my arms as swiftly as I can and cross my finish line. Overcome with a mix of sheer exhaustion and endorphins, I pause to catch my breath. I look up to the sky and feel sunlight touch my face, knowing, deep in my heart, that I have just spent the past seven miles with my wonderful Father in Heaven. My spirit, enmeshed with His, in an intimate holy embrace.

Be here now.
Be here now.

I stretch my hands out to my Maker, and, for the first time, I smile.

“You are here now,” says God. “You are my child.

And,

I

LOVE

YOU.”

And I walk to the car, heart rate now steady, smiling, here now.