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

Ashes of Hope: My Love of Lent but Not of Murder on a Cross (PLUS 40 Days of Sustainability coming soon)

Even the winter won’t last forever. We’ll see the morning, we’ll feel the sun.
We’ll wake up in April, ready and able, Sowing the seeds in the soil.
Even the darkness cannot disarm us. We’ll see the morning, we’ll feel the sun.
-Audrey Assad

Easter is what many would argue to be the quintessential turning point of the Christian faith. The crux. The climax of the story. The thing that you must be able to articulate into carefully formed sentences depicting your belief, as though words and theology solely define your spirituality and very existence. Perhaps from all of this lies the basis for the trite messages that I, along with so many others, have heard about the Christian faith. “Jesus died for your sins.” “Jesus paid the debt.” “Jesus stood in your place and died for you so that you might have life.”

And if those words bear truth and meaning to you, I have not come to take them away, nor discredit them.

It’s just not the Jesus I’ve come to know, face-to-face in my human spiritual struggle. 

The Jesus I’ve come to know didn’t die at the hands of a blood-thirsty, vampire-like God who needs to see someone murdered in order to forgive people. The Jesus I’ve come to know, and the God to whom he points, is a rebel. A revolutionary who challenged the privileged and elevated the marginalized. Who spoke out of turn, unafraid to make people think harder about themselves and the world around them. Who taught us to slow down long enough from our exhausted minds to “look at the birds and flowers,” and to be a visionary in whatever issue your culture is facing.
Direct from the mouth of this revolutionary contains the most gripping parts of the Eastertide story, in my experience. The pieces that I rarely heard pastors and Bible study leaders quote. The part where Jesus, our supposed role model, screams up at God, “My God, My God, Why have you screwed me like this?”  Because that’s life, that’s reality. That’s the affirmation I look for when I’m stuck in the mud and mire and all around me are hope-depleted apertures crying out for just a flick of mercy from a kind and loving God, begging for auspices that come from this Divine Light. And to hear Jesus utter these same words gives me confidence that I am in good company when I am in the thick of the squall and my once blithe heart feels incapable of coming back to me. When I’m a low that low, that’s when I know I’m only a few steps out from mercy. Because we, like Jesus, get to experience the surge of joy that is the resurrection, ashes of hope that sing of redemption.

I think these ashes of hope are what the soul longs for. Beyond a good love story, a good hope story. To know that all of our troubles will not be squandered, but used for fodder to keep these tales of beauty-from-pain alive. To give us the fortitude to know, anchored in our core, that it doesn’t matter what comes our way, for it won’t last forever. But the feelings of hope and the aftermath of beauty will hit us so viscerally that we tear up at the thought, “I didn’t know life could be this good.”

This is why I haven’t given up on Lent or Easter, despite some of my theological wrestlings and frustrations with the traditional teachings of this spiritual season. Lent draws out the heart’s ability to draw nigh to your Creator. A 40 day season containing strong, beautiful symbolism. Death from life. Life from death. The two are inseparable. Hope is reborn, recycled out of crushed pain and heartache. The timing of this season enhances the meaning all the more to me, as we begin Lent in the waning winter, in which it is still snowing as I write this. But we end Lent well into spring. During those 40 days, shoots on trees develop, buds blossom to form magnolia flowers- my absolute favorite tree on this planet that reminds me there is no cold that cannot be endured to eventually give way to life. The sun graces us for 2.5 minutes longer each day, until we’ve accumulated some 177.5 minutes of additional daylight come Easter evening, thanks, largely in part, to Daylight Savings Time. (Can you tell yet that spring is my favorite season and consumes many of my thoughts?)

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Copyright MO 2013

And so I don’t know where your heart is this season. Maybe it’s hiding in guilt and shame, underneath a veil of many coverings, because you feel it has gone so far awry from any sort of “straight and narrow.” Maybe your heart is parched, longing for a bit of this hope story. Or maybe your heart abounds in a joy so full, that it might cry droplets of gratitude onto baby seedlings that will soon lean their faces toward the sun for the first time. But one thing I do know, as we forge into spring, is that all around you, life begs your soul to awaken, and if it cannot awaken on its own, let its colours take you to places unknown until hope uncovers and your soul sees vibrant hues ablaze in beauty.

But there will come a time, you’ll see, with no more tears.
And love will not break your heart, but dismiss your fears.
Get over the hill and see what you find there
With grace in your heart and flowers in your hair.
-Mumford and Sons

    

Coming tomorrow: My 40 Day Sustainability Plan- Come observe Lent through environmental social justice

The Gayest Valentine’s Day Ever!! Literally.

Originally posted on The Button Chronicles…:
It would be safe to say that my sister, Stacey, is my Hero… ——————————————————————————– Dear Whitney,  I wanted to send you an email to wish you Happy Birthday. Your D told me that I…

The Stories Our Pictures Tell Us, Or, What I Learned from Sitting Alone for Two Hours in a Closet

                                                                                                 
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We shall not cease from exploration
And the end of all our exploring

Will be to arrive where we started
And know the place for the first time.

T.S. Eliot — “Little Gidding”

I just got back from a wonderful weekend in Philadelphia with my family. I always tell people from out of town that though I grieve summer’s end, the best time to visit PA is in the fall, where the gold, crimson red, and yellow trees will call you into attention, causing you to notice every little thing around you that you’d normally overlook. This weekend was no different. The sun shone all weekend, tall trees telling tales in goldenrod and setting sun orange.

It was a good weekend. One of those weekends that make you look deep inside of yourself and feel absolute gratitude for getting to experience it, all of it. I spent the majority of the weekend at Villanova University where hundreds of students put on the world’s largest student-run event for Special Olympics.  Cheering loudly, I’ll never forget the way they lined the walkway back to our cars, and high fived each athlete, as though we were married couples walking out to a procession line. When I told them thank you for their abounding energy, they just smiled, and replied, “We love this. It’s our favorite weekend all school year.”

I woke up the next morning and got to run with Special Olympics athletes in a 5k, delighting in the sun meeting my bare legs. November 2nd is far too into fall to be able to wear shorts, but today is different. The sweet 70 degree sun smiled at our legs. We danced the night away in the gym at the annual dance the students run, there we did the Cha Cha Slide, the Cotton Eye Joe, and The Wobble, whose choreography and lyrics I still don’t understand.

I watched my sister play soccer Sunday. For far too long in our relationship, she was the one watching me, and now I was thrilled to give back that time and attention to her. It was, perhaps, a moment of reconciliation, as if to make up for lost time.

As Sunday evening approached, the sun sunk at 4:58 PM thanks to daylight savings time. An extra hour of sleep? No thank you, I’d take an extra hour of daylight over extra sleep anyday. After sunset, I went upstairs and noticed a journal peeking out from my closet. Curious, I decided to take a look. Inside lie four boxes filled with letters, greeting cards, old swimming times, old swimming workouts, high school and graduation pictures, and friends’ wedding programs. There were printouts of old AIM conversations with boys I had crushes on. My polka dot scrunchie I wore way after scrunchies stopped being cool. I’m always a good 3-5 years behind the latest fashions.

A strange, but wonderful sense of nostalgia warmed me up like chamomile tea on a snowy day. I’m re-reading a wrinkled letter from one of my good guy friends from high school. One of my best friends created a senior project where students were asked to anonymously submit essays describing their experiences of love in order to “purge their feelings and maybe come to some resolution.” I don’t think it was until my binge in the closet that I fully appreciated the magnitude of her endeavor. Guys and girls alike anonymously poured out the most vulnerable parts of themselves on paper. I can’t believe he even gave me his letter, so personal. So visceral. I felt like I was reading a journal entry from a 35 year old who’s looking back on the thing or two that he’s learned from the journey he’s been on since he said “I Do” at an altar.

Their were greeting cards marking birthdays, apologies, thank you-s, and just-because’s. There was that note that my neighbors wrote me right before we all thought I’d be leaving for Peace Corps. Though I’ve made peace with my decision, it still stings a little bit each time I come across that name, or see a piece of paper of something I signed in the copious amounts of paperwork that the process entails. It hurts a little when dreams die. It hurts a little when you remember a part of yourself that was so filled with life, pulsating, passionate life. If I’m honest, there’s a part of myself that I never fully regained when I said no to my dream. Even though I’m most grateful for the ways in which I’ve healed since that time, looking back on ourselves and our lives can be hard, can’t it?

There’s my grandfather’s passport. I never got to meet the man, but from what I hear of him, he was the most amazing person. I’ve only ever seen pictures of him with the family or alone in solitude in his church robes. He was a pastor, a thinker, and I’d love nothing more than to pick his brain. He died at all-too-soon age of 53 from a heart attack in the middle of his kitchen. It hurts, doesn’t it, when you don’t get to meet the people that you want to meet? When lives are interrupted without your permission? Now, all that’s left in my hands are a picture of him at this last church service in Illinois before he and the family moved to PA and his old passport. I began prodding my dad for passport explanations. Why did he go to Russia, and South America, and who did he go with, and how long was he there for? Half of the stamps we couldn’t decipher, after all it was an expired passport from 1971.

There’s cards from my grandmother that all looked pretty standard: Hallmark cards signed in small, shaky cursive- “with love, Grandma.” I loved her; I know I did. It’s just that she had an aneurysm in 1985, just a few years before I was born. My only memories of her are of when she was in a walker. She and my aunt would come over for every birthday, Thanksgiving, Christmas you name it. We would blow up whoopie cushions, put them under her seat, and after we heard the fart sound, we’d erupt in laughter while she proceeded to ask us to stop it. We would just keep laughing. And we never stopped it. I loved her presence; it felt like home whenever she was in our house. I just doubt that as a kid, I fully appreciated her. And she’s gone now. I still remember that dreaded phone call at my friend’s graduation party in June 2003. When the phone rang on my friend’s house line- I didn’t own a cell phone at the time- it was my mom on the other line. “I need you to come home now. It’s about Grandma.” And so, as soon as I got home, we went to Artman Nursing Home, where I saw a dead body for the first time. It was weird. And I didn’t like it. So I cried. We left, not talking much, and a week later I went to my first funeral. Our neighbors were there, as they have always been for every major life event. I still remember Mrs. Beerley giving me a big hug, as she looked me in eye and said, “It’s ok.” I hope Grandma knew how much I loved her, even when I didn’t express full interest in her life. I know she’s chock full of stories, like her husband (my grandfather), whom I also didn’t get to meet because life was cut short.

There were newspaper clippings from our local newspaper. I grew up in a neighborhood in which teachers came to school early to provide homework help. It felt safe. One time, the crime section read: “Three flags stolen from Flourtown Country Club golf course.” Really, I’m not making this stuff up. There’s also that time, because our town was so small, that I got in this same crime section for careless driving. It was an early morning, a long day and even longer night on July 2nd, 2005, as friends and I spent the day at Philadelphia’s Live 8 concert advocating for global action to end poverty, especially in Africa before the G8 summit. At 12 AM on July 3rd, I crashed into a telephone pole, wrecking public property (along with my car) and was even told I had to pay for it. A week later, I re-lived it all over again as I read “Melissa Otterbein, 18, cited for reckless driving….” Fortunately, I’d built enough rapport with the parents whose kids I coached and babysat. As I received cards from these families, all I could think was, “Hopefully they didn’t read the newspaper.”

I found some old CDs in the memory boxes, including a couple Christian cds. I stopped listening to Christian radio about two years ago when I grew tired of hearing infomercials about how there’s new aged speakers on Oprah who are leading people astray and if we really love people, we shouldn’t let them listen to these people. I grew tired of their cheesy slogans that they would repeat multiple times per hour. “Family friendly, kid safe.” What about those of us who don’t have kids? Does that mean public radio is evil? I hardly think so. Anyway, as I drove home later on, after I had left the closet, a strange familiar came over me as I found myself nervously singing the words again for the first time in a long time. I thought about the times when those songs carried me though difficult nights, when things weren’t so good at home. Or when I’d have those occasional teenage relationships dilemmas, experiencing life’s stress, but oh, I was happy. It didn’t even feel weird anymore to sing these songs. The attachment felt peaceful, like I could enjoy it while keeping it a safe arms-length away. I guess that’s where I am with Church now. I love God, but seem to keep Church that arms-length away. It wasn’t God who scared me, it was Church, well, just some Churches, that often minimized how I could find the love of God in my sister’s smile instead of ancient text that angered me most of the time.

It’s funny, I spent almost two hours in that closet and left the room a lot messier than I found it. I figured it would give me a good reason to go back in there the next time I’m home.  It’s amazing where photos and cds, or letters and decorations and old newspaper clippings can take us. It’s amazing how words on crinkly paper from a decade ago can help you make sense of today. It’s amazing how a box of photos that we can no longer reprint because we stopped using 35 mm film about the same time we stopped playing with pogs can spark up warm fuzzies and fear all in the same memory. TS Eliot once said,

“We shall not cease from exploration
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time.”

I sense that in my boxes of nostalgia. I sense that we’re on this journey and the good, the difficult, the crushed, the joyful all carry us into our future in untied fragments. Someday, some great-grandchild might finger through our letters and CDs— what the hell were those, never the less tapes?–and smile. Perhaps they’ll ask their parents about us or put us back in a box. Or perhaps if you lived a life bold enough, they’ll proudly place your picture on a nightstand and smile at it when they wake up in the morning on their way to work.

It’s a strange life. We live it once. That’s it. And all that’s left are the memories. Half of them, we forget about, until an old photo jogs our memory as though we need basic instructions on how to look back on very own lives that we created. We do things everyday that we won’t even remember doing tomorrow, let alone 40 years from now. That’s weird.
But I hope when you go to bed tonight, you feel the love of those people.
I hope you keep taking those photographs, even if you’re scared to document this time of your life because you don’t want to re-live the pain you’re going through right now by finding it buried in the pixels of an old photograph. I hope you keep writing those journals, even if you don’t want to read the sad tale you documented on paper ten years from now.
Or maybe you’re having the time of your life, too busy to sit down and even capture it. But one day, though, someone’s going to look back in order to find themselves because they got lost too. We all get lost. I’m trying to keep up with these memories in order to make sense of my life and maybe you are too. It’s amazing how five people can experience the same event, but none will recall it the same exact way with the same exact details. We each bring forth our little vignettes and keep our lives sustained into another year, another decade, another century, or even millennium. It’s ok to look back on your pain. It was a part of your struggle. I only hope that the painful parts of your story will find some healing. I hope there’s days you can’t pen down because you were so overwhelmed by the privilege of being alive that even if you tried to write it down, no one would get it. Perhaps you too, just like TS Eliot will live along some day and be able to put back the pieces. We’ll find ourselves and lose ourselves until we glance up to the endless sky in these cracks and crevices of darkness and of light.

“It’s a victory to remember the forgotten picnic basket and your striped beach blanket. It’s a victory to remember how the jellyfish stung you and you ran screaming from the water. It’s a victory to remember dressing the wound with meat tenderizer and you saying I made it better…” -Jenny Hallowell, A History of Everything, Including You

A Love Letter From God In The Midst of Confusion ((Part II))

Just some words of peace and love that I imagine God whispers in our ears in the mist of confusion or change. You are that Dear Child of God.

 We shall not cease from exploration, and the end of all our exploring will be to arrive where we started and know the place for the first time.
—T.S. Eliot
       

Dear Child of God,

Together, you and I have journeyed these times through and through. Every time it seems as though you face a new intersection, it’s tempting to think you’ll be alone, but let me assure you, you will never be truly alone. I will be with you always and I will send you love and kindness through the people around you. I promise. Choose to encourage yourself in the moments of un-joy that I am orchestrating things you just have no idea about yet. Yes, I will have beautiful new opportunities ahead of you.

I know it’s tempting to avoid and ignore feelings of pain, confusion, discomfort, anxiety. But there’s something bigger here, if you dare to look deeper in your bravest moment. I hope you can look back on my faithfulness and realize that every time you run away instead of facing the uncertainty of things unknown, you lose out on an opportunity for growth. There’s something here for you. Look again. Too big? Too scary? Gently lift the covers away from your face while I hold your hand. Child, while I wipe away the exhaustion from your face and plant a tender kiss on your forehead, I pray you’ll free your tarried mind from the burden of “why.” I can see the road ahead. You cannot. I know that frustrates you. But when you free yourself from the burden of having to have it all figured out now, have all the “whys” answered, you create space for my peace to enter in. It yearns to have room in your heart, your chest, your eyes, your smile, your soul. But inside of you, it’s crowded with the “why’s” and the secret fears that I already know of. There’s no room in the inn of your heart but I will find a way to make room to slip into your soul, through the cracks of your despondency as I melt your fears away like the wax from your midnight burning candle flickering in your dark room right now. I’ve come to bring light to your darkness. Let me in.

I know you’re afraid of rejection, of not being accepted by the people you meet. That your task-oriented, introverted personality tempts you to avoid investing in deep relationships. I assure you. Be yourself. I will give you new experiences of my love as you meet new people, find friends of freedom that you’ve been longing for. But you need community. And I want to show myself faithful to you in this arena. So leave the house. Put the keys in the ignition. Go meet someone new and get lost in their story. It will help shape or touch yours, anyway. Each of you have something to teach the world. When you’re feeling lost or confused or feel as though you can barely figure out how to make peace with the changes coming your away, check in on a friend and realize that they’re probably going through some of these same things too. Choose to be in it together. There’s going to be days that hurt, break, make you cry out in the dark. So speak gently to one another. Speak love to one another. Speak hope to one another. Speak of the strength with which I clothe you.

I know you’re trying to figure out where I’m leading you. I know it might seem like the steps you have to take are a giant waste of time. Just be faithful to the journey. Don’t get too caught up in it. Just go, one step at time. That a girl (that a boy). See, it’s bright and beautiful out there, isn’t it? I promise not to waste your years. The only moments you waste are those when you step away from Me and get distracted by your discontentment but sit there, on your floor, too afraid to try something different, to make a change. I see where you’re trying. I honor all tries, attempts at trying, successes and failures. Pick up your bones and shake the dust of your feet, child. Your shoes have some walking to do! To new places, to new faces, to the things I’ve put on your heart, if only you’d be courageous enough to follow through.

So go listen to that still small voice in your heart, whatever it’s telling you. Maybe it’s time to take another stab at your studies. Or go grab your bike and get on the open road. Or take that flight. Or meet up with that new friend you’re fond of. Or apply for that new position that keeps resurfacing in your mind. And when all of your life and career and relationships and choices seem to jumble into mass confusion, wanting your full attention, don’t forget to head outside and take a look up at my Pleiades. You know the Big Dipper looks awfully close to the kite you flew last spring. Trace its outlines with your finger toward the sky. Feel the edges of each star from 50 million miles away. My hands crafted these lights out here, and now, as you finish tracing the shapes of the stars in the air, pull those hands in close to your heart, for I am holding them.

I’m here.hampton beach

I’m here.

I love you, all of you, every day.

Your Maker

The shallow cracks within my soul.

There’s a path I sometimes walk
That doesn’t create wonder and gratitude nor beauty or intimacy
But that walks in the “in-between.”

That’s too afraid of change or the possibility of things turning out worse
So I don’t take full steps to make it better.

The part of me that trades in originality and audacity and brightness
For dullness and sameness.
And makes me feel like a let down
To the 18 year old girl inside of me
Who once woke up with an airbag in her face
Car slammed in a telephone pole
Calling 911
Vowing to never ever take the preciousness of life for granted ever again.

Who pushes off booking a Southbound flight
To roll down hills with my cousin
Who feels like a little sister
All because I’m scared of what will happen
If I don’t make the next dollar
And have to live off savings for a while.

There’s a part of me that doesn’t say the words I want to say
Because I’m scared to be different
And so I choke behind the voices that tell me to be quiet
Just to “fit in.”

There’s a part of me that wants to run the opposite direction of anything religious
And get pissed off at God
Or rebel against every Christian teaching
To spite the dogma of heavy nooses I’ve experienced in Evangelicism.

And sometimes,
I’m glad I do this.

Because in the defiance
I find space to stop hearing the words that hurts me.
And get to ask every unadulterated question I’ve ever wanted to ask.

But most of the time, I know I go home
To my room
And my candlelight
And it’s just me
And God
And I get scared of death
Or need hope
Utterly.
Within my soul
Every part of me in tune with my need for God
And I’m ashamed that I would ever turn my back on him/her
When the last thing God would do
Is turn his/her back on me.

So the words of the most subversive person I know
Whispers in my ear,
“Come with me
And I will show you the unforced rhythms of grace…”

There’s a part of my soul that dies a little when I think about how much time I spend
Ruminating on how much I dislike my job
But don’t know how to make my dreams reality
So I become like many Americans
And get a temporary high on Friday nights
That crashes 48 hours later
With the Sunday evening blues.

There’s a part of me that’s too afraid to take a chance on my dreams
Because they aren’t “academic” enough
Or important enough
Or impressive enough.
And that’s when I remember
I’m feeding into the trap
That certain careers are more important than others
When all we really need to do
Is find that makes us come alive
And go do that
And let everyone else
Chase success and notoriety
In a job they hate but think “looks good.”

There’s a part of me
That wishes I were the opposite gender
Because I hate the fact that mine
Makes me less muscular, less tall
And is laiden with propriety
And tells me to change my last name
And have kids
That I don’t really want to have.
At least not biologically.

There’s a part of me
That’s hurt by every ignorant statement
Mouthed by Evangelicals
Or conservative white or black men
Spewing out their desire for pompous power
By telling women how they should live (the “sanctity” of life) and die (don’t you care go into combat, after all, you’d make the military have to change the way it does things to become more gender equitable and that’s really inconvenient).

I realize how much I want to become sarcastic
And yell in anger
And let men see
A women get angry
Instead of passive, taciturn, and “nice.”

And sometimes I’m glad I do this.

But most of the time,
I think about Jesus.
And how hard it is to love the way he talks about loving.
Especially when it comes to loving those crazy (insert the opposite political party with which you affiliate).
And so I make a fool of myself
Missing out on an opportunity to develop my character
By instead choosing anger and resentment
Instead of something more courageous
Like love.

I walk these icy paths of the cracks within my soul
And confess my wasted moments
And ask God to redeem them
To start afresh in the morning
And ask for just a little more time in solitude
Here in the light
In open spaces
Where the sound of stillness
And the beat of my heart
And the wind on my face
All remind me to come alive
And be contraire
And get out of my head, my self, my biases
And get lost in the dreams and stories of each beating heart around me.

And together we’ll solidify the cracks
Until they become steady ground
Connecting hearts
And minds
And dreamers.

We’ll glance up to the endless sky
And find ourselves and lose ourselves
In these cracks and crevices
Of darkness
And of light.
046

The Peace House

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There’s a street in Baltimore where incandescent lights, flags, Christmas trees made out of recycled bicycle tires, and lit up crabs brighten cold December nights as people gather together year after year. Some hold hands, others push strollers, but each meander down the sidewalks with a sense of lifted spirit and joy, a little twinkle of hope somehow rising within them like the sun, undismayed and resolute, shining even if it’s going to be a cloudy day. Now in its 65th year, residents of W. 34th Street in Hampden, Baltimore put on a dazzling Christmas light display, multi-colored lights strung from one side of the street to the other unite neighbors in cheer as a “labor of love.” People from all over the world gather to check out this earnest display. Residents of each house on the block participate to emanate joy and unity, even though for them, this means a hike in their BGE bill, crowded streets with even more limited parking, and people roaming your street until all hours of the evening.

Each resident allows visitors to come up on to their porches and many leave out guestbooks for people to sign, noting that they delight over seeing where people have traveled from. I made my way down this street for an annual pilgrimage yesterday, just a short walk away from my house. I confess I began the evening with a slightly heavy heart exacerbated by too many conversations and images in the past week centered around gun violence or gloomy media portrayals of the fiscal cliff. I had just come from work, where I sat down with a man who had withered down to no more than 100 pounds, hospitalized from an opportunistic infection stemming from an HIV diagnosis. The holidays fast approaching, he whispered softly that his family doesn’t speak to each other. My heart broke. But this man had such a heavenly spirit in him, and warmed my heart with his resiliency, perseverance, and strength to keep hope alive for one more day. Needless to say, the presence of lights, people holding hands, arms draped around each other’s, smiling for pictures, made my heart grow warm on a chilling, windy evening. Of all the houses I visited that night, one stands out the most:
The Peace House. If you go to this neighborhood, it will be halfway down on your right. You can’t miss it. It’s the lawn with this emblazoned on the grass, welcoming you in:

IMG_1160I climbed up the steps and approached a table on the porch with a note from the house owners, Elaine and Ed. They describe the joy of living on this block, being able to mark a holiday season characterized by hope, goodwill, merriment, and joy. “Family and friends come together and peace seems possible. Whether it be a bright smile or the shiny eyes of a child or the kindness people show to one another, peace is all around.” They then invite each guest to write in a notebook what their vision of peace looks like, encouraging people to sign their name and mention where they’re from. Some of the comments in the book were funny, like “peace signs and pizza” and others were more serious, talking about being at peace within one’s soul to intentionally commit to bringing peace in interactions with each person one comes in contact with. Choked up, I continued to look around the porch. Pieces of fabric with “peace” written in over a dozen languages garnered the top of the porch like paper chain decorations. Dozens of rectangular flags criss-crossed above our heads: colored fabric with yin-yangs, the Star of David, the Celtic Cross, and other peace symbols. “Pray for peace” banners and rainbow “peace” pennants blew gently in the wind. “We can be the change we wish to see” emblem stitchery and a “Coexist” sticker (with the Islamic IMG_1181Star and Crescent, peace sign, the Jewish Star of David, and Christian cross) displayed to usher in the observance of peace as not only possible, but already occurring in this world. Also adorning the porch was a “world peace” display with newspaper footage of individual leaders who have stood for peace, containing images of faces such as Martin Luther King, Jane Addams, and Mohandas Gandhi, reminding each of us to take a stand for peace with whatever that looks like in our own creativity and passion.

It was beautiful, and just the reminder the world needs to hear more and more each day.

But perhaps what grabs me most about The Peace House is that when this couple moved here, the Peace House, as we know it, did not exist, but rather, what transpired came from the creativity, beauty, and imagination of their souls. Sometimes, we are met by doubters, by naysayers, by collective media and acts of violence that try to usurp beauty and harmony with discordance and chaos. But every day, we have a choice to make: to go along with the cynics or intentionally create acts of peace, beauty, and love for as many to experience as possible. The Peace House gave me hope that no matter what the news stories might say, or whatever the political or religious divides exist in the world, there are still places in which hope and peace and optimism dwell. That there are still compassionate people who want nothing more than to see the world engaged in love; people who don’t just pray prayers (though prayer may certainly be a part of the process), but actively, deliberately create safe places for peace to blossom. The type of place that offers a downhearted or weary wanderer just a little bit of hope, as if to say, “Don’t let your candle burn out just yet.”

Standing there on that porch, surrounded by words and phrases of such beauty, including a Christmas tree adorned with Tibetan prayer flags, and a banner crosshatched with “peace” in several languages, I knew, irrevocably, that peace can still be found and that even those who say peace on Earth is mere fallacy are welcomed in too, here at The Peace House, here in this world, where we can be active facilitators of peace, reconcilers of wrongs, through our homes, our relationships, our souls, and whenever we feel we cannot find it, that is where we must create it. Yes. We have to make peacehouses. We have to sing songs not just for our own ears, but together, whether on street corners in December or through rolled down windows in the spring time, laughing over off-key renditions of whatever catchy song plays from your radio at that moment. We have to speak and say a hearty, “hello!” to strangers, not waiting to speak only if spoken to.

Because there is more peace to be experienced on this Earth. We need only to get outside of our own microcosms of regularity and normalcy to create something more compelling, more inviting. And together, we will collectively taste shalom, pax, la paz, whirled peas, on Earth as in Heaven, this holiday season and always.

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Communion: Is it About Sexuality or Love?

This past weekend was the first time I experienced someone looking me in the eye, stating that they wouldn’t partake in communion with me.
Why?

Because of my views on homosexuality.

Is that what communion’s all about?

Clinking miniature plastic shot glasses with pre-filled grape juice as an “amen” to deeming what’s “abominable” in the eyes of God? A meal to lambaste a group of people who are “unnatural” and “cannot procreate?” Is communion all about reminding people that “‘they’ choose their own sexuality,” while you negate to mention that you didn’t choose yours? Does the act of communing only involve eating and drinking and doing life with people just like you, who think like you, who hate the ‘sins’ that you hate, who interpret scripture the way you interpret scripture, who vote the same way you vote?

Is that what communion is all about?

If that’s your version of gathering around the table, I’ll take a pass. Instead, I’ll go to the open field of freedom, where we sit in a circle, Kumbaya style, and each share the same cup and the same bread and say a glorious “Amen” to our maker, celebrating the imago dei in us all. We may not agree on everything and we each are passionate about different things, but together we create beauty and peace. Some of us are married; some of us aren’t. Yes, some of us like men; some of us like women; some of us don’t know; and, really, we don’t care either way. Because together, we know what we do care about: loving God and loving people. And anything we can do to advance the Kingdom of God- that Kingdom- we’ll do.

Because the last I checked, communion was about all of us being invited to the banquet table. Celebrating the Jesus who loves us as people first. People who feel pushed aside. People who are lonely. People who are searching for just one person to say, “Let s/he who is without sin cast the first stone.” People who love him. People who don’t. The world called them “prostitutes,” “tax collectors,” “Pharisees,” “sinners,” “adherent disciples,” “disciples-soon-to-be-betrayers.” The question is, though, Who would Jesus say he ate with? How did Jesus see each person he dined with? Does God see the prostitute? Or as author Shane Claiborne learned from a friend who was an atheist, “Jesus never talked to a prostitute because he didn’t see a prostitute. He just saw a child of God he was madly in love with.”

Realizing the beauty behind his friend’s words, Shane continues, “When we have new eyes, we can look into the eyes of those we don’t even like and see the One we love. We can see God’s image in everyone we encounter. As Henri Nouwen puts it, ‘In the face of the oppressed I recognize my own face, and in the hands of the oppressor I recognize my own hands. Their flesh is my flesh, their blood is my blood, their pain is my pain, their smile is my smile.’ We are made of the same dust. We cry the same tears. No one is beyond redemption. And we are free to imagine a revolution that sets both the oppressed and the oppressors free.” (The Irresistible Revolution, pg. 266)

It’s easy now to see, in this light, how beautiful our God is and how precious we each are one to another, one to the world, one to our beloved Maker. Oh sure, it’s easy to point out the dissension, the arguing, the “righting,” and “wronging.” But when you take a second glance, when you uncover our fears, dismantle our pride, and each reach out our hands, we discover the love that Jesus sees when he looks into each child’s eyes and whispers directly from God, “I have loved you with an everlasting love.”

If I can see what’s in your heart by what comes out of your mouth
then it sure looks to me like being straight is all it’s about.
It looks like being hated for all the wrong things
Like chasing the wind while the pendulum swings
‘Cause we can talk and debate ’till we’re blue in the face
About the language and tradition that He’s coming to save
And meanwhile we sit just like we don’t have give a sh*t about
Fifty thousand people who are dying today

The Fiscal Cliff: Like the Wall Street Crash, “We Need a Little Christmas”

There are two hackneyed words that have droned on the web, radio, television, social media, and even in some conversations I’ve had this week: fiscal cliff. Not being an economist, I confess I dismissed most of it, just interpreting it as another way of phrasing the “not enough money” message we’ve been hearing about for the past five years, that further reiterate the messages of budget concerns I hear on weekly conference calls at work. Deciding, however, to become a little more informed, I found this Washington Post article to express “the fiscal cliff for dummies” (my words, not theirs). For those who can resonate with not quite understanding this issue, here’s a few main points:

The 2001 Bush-era tax cuts are set to expire on December 31, causing, among other factors, congress to discuss taxes increases/decreases and budget cuts. Congress has set a limit on how much money the U.S. can borrow, therefore, a deal must be reached.

Half of the scheduled annual cuts will come directly from the national defense budget, half from non-defense.

Social Security, Medicaid, supplemental security income, refundable tax credits, the children’s health insurance program, the food stamp program and veterans’ benefits will not be cut.

Discretionary programs (those that do not have earmarked funds) could face cuts. This includes educational and public health programs, to name a couple.

The Tax Policy Center has calculated that the fiscal cliff will raise taxes on 90 percent of Americans.

The tax hike would be largely progressive, with the tax rate increasing more on high-income Americans than lower-income taxpayers.

Those are a few highlights. There’s still a lot over my head. But that’s enough for me right now. I took a break from public radio this week— even though I enjoy listening to all the unique highlights and interviews I wouldn’t hear elsewhere— because somehow, whenever I’d leave for work in the morning, and whenever I’d leave in the evening, I always seemed to catch the headline news update. And most headline news reports this week have felt dismal. Parking my car after work this week and hearing words like “fiscal cliff” and “economy” swirling around my brain began to dull my ability to enjoy the blissful Christmas lights adorning the homes and entryways of my neighbors. So I decided to take a “media fast.”

A day into this “fast,” I went to Baltimore’s annual Monument tree lighting celebration, in which the city comes together for the lighting of Baltimore’s Washington Monument. Strolling the streets after the lighting and celebratory fireworks, I came across a quartet of women singing, “We Need a Little Christmas,” right there, on the sidewalk, taking a moment out of their evening to stop what they would have otherwise been doing, slow down, and simple sing a song of joy. A multi-racial crowd gathered around, cheering on the carolers, lauding them with applause. I listened to an older man with a broad smile tell me his about his favorite Christmas song -Oh Holy Night- and the joy that singing brings him. As we waved goodbye, tears warmed in my eyes, a little lump forming in my throat. I’m not normally this sensitive, but it’s just that this peaceful act of beauty has been missing from the news, often times, and, while I’m at it, missing in my life. Like when I complain about how long the grocery store line is instead of striking up a conversation with the man or woman in front of me, grateful to have an abundance of food to choose from and the ability to pay for it. It’s been missing from the world, as we shift our attention towards banter and money and taxes, when really, can’t this whole thing work itself out if we’d all just be a little more peaceful, a little more civil, be a little bit more willing to listen, and be a little bit more willing to cooperate cohesively as citizens of the United States of America? What would happen if, say, we shifted towards the spirit of unity that can so embody this time of year, a time in which every major world religion has a holy day to celebrate, or just finished celebrating a month earlier, as in the cases of the Hindu holiday Diwali and the Islamic New Year.

I think that’s what was captured in the gathering of people surrounding this beautiful quartet. Coming together, instead of dividing; finding hope, instead of despair; giving out of a loving heart instead of hoarding our riches to bless ourselves… isn’t that in the teachings of most major religions, anyway?

Interestingly enough, “We Need a Little Christmas” was sung in the Broadway musical Mame. The song is performed after Mame has lost her fortune in the Wall Street Crash of 1929, and decides that she, her young nephew Patrick, and her two household servants “need a little Christmas now” to cheer them up. Patrick protests, “but Auntie, it’s one week from Thanksgiving now!” Intransigent, Mame insists, “It’s time we hung some tinsel on that evergreen bough. For I’ve grown a little leaner, grown a little colder, grown a little sadder, grown a little older, and I need a little angel sitting on my shoulder. I need a little Christmas now.” I think Mame knew something powerful: the joy of this season can bring hope even in the midst of despair, like in the Great Depression Mame faced.

Though a fictitious story, the lesson that Mame teaches us in the mantra of “We Need a Little Christmas” parallels to times today. No matter how pollyanna or naive it seems, we too can experience peace and joy in the midst of daunting or disheartening headlines that reflect anything but the Christmas spirit. And maybe, if we could focus on things to be joyful about, like stories of kindness and cheer in the media this month, a little bit more than we’ve done during the other months of this year, perhaps that spirit of kindness will help us become united as one this holiday season. As the saying goes, “Let there be peace on Earth, and let it begin with me.” For me, as someone who is guilty of taking life too seriously as I all too frequently rush around with my own agenda, only half-heartedly listening to the world and those around me, learning how to express gratitude and gratefulness in the midst of my selfishness and apprehensions. What about you? What about us? What if this holiday season, we learn that we are truly brothers and sisters, neighbors to love? Let’s reflect this spirit  in anyway we can; you use your gift, I’ll use mine. Perhaps your gift is being able to spread a smile across someone’s face as they gather around neighbors-becoming-friends as they hear you sing mellifluously of hope and joy. Perhaps it’s inviting some friends over for no reason at all other than to be together, celebrating the life we’ve each been given. Perhaps it’s gathering your family together and choosing an animal for a family halfway across the world to use as a source of income. Whatever it looks like, it looks like love, it looks like togetherness, and to me, it epitomizes the true spirit of Christmas. Yes,—-

For we need a little music,
Need a little laughter,
Need a little singing
Ringing through the rafter,
And we need a little snappy
“Happy ever after,”
Need a little Christmas now.

HIV/AIDS & Faith, Hope, Love in Baltimore, Africa and Beyond

I want to tell you a little story about HIV, AIDS and faith, hope and love in Baltimore City, (where I spend the majority of my days), and beyond. I won’t lay any heavy facts or staggering statistics on you, although I am grateful to those who have spent their time, energy, and giftings on disseminating surveillance and research data to contribute toward preventing, treating, and ending this pandemic. Instead, I want to share about some of the people I’ve met along the way who’ve touched my life and paint a picture of what it looks like for us to hold hands in red today, gathered as one. 

Let’s begin with faith then, shall we? In 2008, I began my leap into HIV/AIDS advocacy after a trip to Africa the year prior. While in Mahalapye, Botswana, I volunteered with Habitat for Humanity and learned much from our trip leader about all things Africa, including the HIV/AIDS pandemic. With a smile, she said, “We’re grateful for our friends in the US who are able to give us our medicines when you pay your taxes.” She was referring to PEPFAR, the President’s Emergency Plan For AIDS Relief, enacted by Former President George W. Bush in 2003, a government program that, among other things, funds Anti-Retroviral Therapy (commonly known as ART, ARVs, or HAART) for people living with HIV/AIDS in developing countries. (Domestically, this takes place through the government-funded AIDS Drug Assistance Program (ADAP)) I was touched to see America perceived so positively in an international setting. If we’re honest, we haven’t always shown love towards all people, especially those who are poor or vulnerable, with our finances and actions as a country, but, like the faith based community, who sometimes gets associated with words such as “judgment” “hatred” and “intolerance,” as a country and as people of faith, as people of no faith, and as people of other countries, we know that there is much good being done around the world, by many hands, by many faces, in the realm of HIV/AIDS. I implore you to consider the passionate faith based efforts of organizations like HopeSprings. Founded in 2006 by two Baltimore City Churches of differing denominations, this organization has trained hundreds of volunteers, of which I am just one, who serve as HIV Certified Testing Counselors, HIV educators, mentors, and teachers of life-skills to men and women as we build bridges between God and God’s incredible love for all people— positive, negative, status unknown, gay, straight, black, white, doesn’t matter. God sees us all and loves us the same.

HopeSprings partners with JACQUES Initiative as well as dozens of churches in the Baltimore City area once yearly to conduct 1,000 HIV tests in one day in a city-wide event known as City Uprising. This is all volunteer led. Doesn’t cost the city a dime, except for their role in supplying test kits that they have already allocated for. For an individual who receives the often times alarming news that day that he or she is “preliminary positive,” (meaning that their HIV rapid test has shown up positive, but their diagnosis needs to be confirmed with a blood test), they are welcomed into the warm touch of hand from people who care, from people who want to walk through pain or fear together, from people eager to connect you to an service you may need, from people eager for you to recognize the imago dei (the Image of God) that is in you— in each of us, positive, negative, or who’s statuses are unknown. During this year’s City Uprising event, I noticed this sweet man sitting in a corner of a room receive his testing results and as he gingerly repeated in English and Spanish, “Thank you, God, thank you God,” my heart swelled with hope for a future world without HIV. Yes, thank you, for truly we are made in the image of our Creator, equally loved, equally bringing gifts to this world.

Now that we’ve considered faith, let’s take a look at hope. Hope is what has kept people with CD4 cell counts of 2 holding on long enough to see their CD4 count rise to 500 as they began taking HIV medication, known as antiretrovirals. (CD4 cells, also known as T-Cells are a part of the body’s immune system to fight off illness and disease.) Hope is what kept a woman I met in 2010 who spoke at the Baltimore City World AIDS Day Celebration from being a self-ascribed “homeless junkie eating out of trashcans” into an inspiring woman who brings joy to everyone she meets with her contagious smile, persistent HIV advocacy, and hugs. Hope is when we look at Cambodia, who has literally reversed the direction of HIV in their country, down to a prevalence rate of 0.5% . “Getting to zero,” (a popular phrase in HIV/AIDS advocacy) is a real, definitive possibility for Cambodia in our lifetime.  Hope is what a person I spoke with yesterday still had in their heart, despite first learning about their HIV diagnosis one month ago, at which point this person was already AIDS-defined with a CD4 count of 111. “I want to meet with my doctor and get on that one pill a day (Atripla). I need this and I’m ready,” this person shared. This person has a bright, limitless future ahead of them and I think they are just starting to taste and believe that to be true.

Armed with faith and hope, next let’s explore love. Love is what illuminated in the darkened huddle of an HIV/AIDS support group that I had the privilege of attending with 10 other women from Women Who Stand, a Baltimore-based women’s advocacy group under the auspices of World Relief. Women with smiles as bright as stars talked about the challenges of caring for families and keeping up with daily life and still, somehow making time to take care of someone very important: themselves. Many women feel competing needs of caring for their families that make it harder for them to keep up with consistent HIV care. This, however, can be changed by promoting the equal sharing of caregiving responsibilities between women and men and making efforts to improve Millenium Development Goal (MDG) 3: Promote gender equality and empower women. Love is what brought people who are black, white, Christian, Muslim, urban, suburban, gay, straight, transgender together around the Christmas tree at the Baltimore Washington Monument on December 1, 2010 for a candlelit vigil with red glowsticks. Love is what brought people together on Rash Field on October 9, 2010 to attempt to organize the world’s largest human red ribbon, leaving each of us in awe about how easy it is for strangers to come together and lay differences aside to come together on so important an issue. Love was walking through an HIV ribbon labyrinth and then communing over a holiday meal together last December not as black people, white people, poor people, rich people, gay people, straight people, but as sisters and brothers who support JACQUES Initiative in a variety of ways—volunteers, advocates, supporters, clients, prayers, hopers, wishers, doers. People, no more, but certainly, no less.

So…
Faith.
Hope.
Love.
Amidst HIV in a sea of red today and everyday.

Happy World AIDS Day.

B'More Aware Red Ribbon Event, October 2012

B’More Aware Red Ribbon Event, October 2012