A Simple Request Today: Help One Family Remember Maura

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Last week, I received this letter from a reader named Clare:

Dear Kelle,

I’ve started this letter to you probably about 5 times over the last year. I’ve never quite been able to put in words all that I wanted to say, but last night I decided I needed to try again.

I read your book right after it came out while I sat on the beach with my husband and wept. I am the big sister to an almond-eyed little girl, and you gave me such a great insight into my parents’ struggles and worries. Your Nella and my Maura have the same infectious smile! You can’t help but laugh when they laugh! I stumbled on your blog several years ago and have since shared it with others I knew who needed it.

Your blog has been so very life giving to me, particularly over this past year. My almond-eyed sister, Maura, died a year ago this month. It was sudden and heart-breaking. She was surrounded with love…

I think my favorite story that my parents retell occurred in the first few days of Maura’s life. Maura was the sixth child (of eventually 9 babies). After Maura’s diagnosis was confirmed, my parents came home from the hospital, prepared to tell us the news. After telling us children that yes, Maura did have Down syndrome, we all fell to the floor, weeping, noses running, each a huddled mass on the floor with an adult bent over, cradling the distraught sibling, until one of us lifted our head and asked, “What is Down Syndrome?” And in the words of my mom, “There began the story, the healing, the acceptance!”

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…I remember one summer Maura went to an overnight camp. To get from the mess hall to her bunk, she had to cross a bridge over a lake. Maura was petrified. She absolutely refused to cross the bridge. Hours went by, and still Maura had not crossed the bridge. My mom, jumping into action, hoisted Maura up on her hip and said, “Maura, you face your fears just like we do—head on!” And off they went over the dreaded bridge. Within a few feet of no fatal incident, Maura began to smile, then grin, then giggle. She then ultimately navigated multiple bridge crossings per day with a smile!

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As we approach her “Feast Day” as my mom calls it, we have come up with a way to honor her memory and spread some of the same joy that she always showed us. We are organizing a “Pay It Forward” kind of day and trying to spread the message. I’m encouraging people to do random acts of kindness and leave a note explaining what you’re doing, then take a picture of the act and post it to social media with #HonoringMaura. It will be a tough day, but in between the tears we wanted to do something positive. We are asking our friends and family all over the world to participate and it would mean a great deal to my family and I if you would like to take part. 

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There are 9 children in my family and we loved Maura something fierce. I remember right after she died and looking at my mom and asking how we could go on. I felt like Maura was the glue, the thing that made us special and I feared we had lost that. Over this past year I have been blown away by how many connections we have made through Maura. Being in a large family I would often be called “Gerry’s daughter” or “Rachael’s sister” and I never liked that, but the other day I was referred to as “Maura’s sister” and I was beaming the rest of the day.

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I’m attaching a picture of Maura so you can see that infectious smile! There’s also a picture of all my siblings. One of my sisters is holding a pink stuffed animal that belonged to Maura. We had some family pictures made last spring, and that was our way of having Maura in the pictures with us.

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Thank you for your honest words about Down syndrome. You have had such a huge impact on my life.

Much love to you and your family,
Clare


We have the opportunity to help make today very special for one family just by sharing an act of kindness.  Buy an extra cup of coffee for someone, scrape off the windshield next to you, bring lunch to your child’s teacher.  And if you’re using social media, can you share it with the hashtag #honoringmaura?  Maura’s family will be remembering and celebrating her life today through watching acts of kindness spread around the world.  What a wonderful way to be remembered. And what a perfect way to start our Wednesday.

A Birthday Post

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A Birthday Post.

Upholding an annual tradition, I read two months’ worth of old blog posts from Nella’s birth last night, stopping at my sister’s entry from two days after she was born:

At 4:24 pm, January 22, 2010, six pound Nella Cordelia Hampton entered the world and our hearts.
Nella has Down’s Syndrome.

I never changed the incorrect spelling of Down syndrome because I like that it represents us then—we didn’t know anything about it. We didn’t know that “D” is capital and “s” is lowercase, we didn’t know that there’s no “apostrophe-s” in Down, and we sure as hell didn’t know that someday “has Down syndrome” would be one of the least defining predicates that follows the subject of our daughter’s name.

Four years later:

At 4:24 pm, January 22, 2010, six pound Nella Cordelia Hampton entered the world and our hearts.
  Nella has…
…this crazy infectious smile that takes but two seconds to extract from even the grumpiest moments.
Nella has…
…a determined little run, and when she’s tearing across the sidewalk to demonstrate her independence, she shakes her right arm in sync with her feet and looks backs and giggles at the distance between us.
Nella has…
…a special way of knowing when anyone needs love, and she never holds back from offering a pat on the back or a tight hug.
Nella has…
…the most impressive dance steps—twerking ain’t seen nothing on her signature “Go Low!” move.
Nella has…
…favorite books and colors and places, numerous ways of expressing herself, notable interests, repeated routines for getting into trouble, a growing repertoire of “naughty” words, the best laugh, remarkable qualities for facing challenges and an ocean of opportunities awaiting her future.

And I suppose I should tell you that Nella has Down syndrome.

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While her birthday will always hold deep sentiment for our family and raw memories of the day she was born, today’s no different than any other birthday for any other kid. It’s a celebration of life. Every day—no matter who our child is or how many chromosomes she has or what she may have to face in the future—is an opportunity to celebrate life. That’s what makes us all the same. ­­­­­­­­­

My personal notes to my daughter are written with pen in her keepsake book today, but the blog invites the eyes from many walks of life—some of whom share the journey of raising a child with special needs, many who don’t.  So I take this as an opportunity to talk about what has become second nature to us—a part of our lives that has woven its fibers so intricately with the others that it’s hard to make it out from the entire tapestry.

I think that Fear is the most cancerous and incapacitating emotion there is. It eats away at the good we have to offer, cripples us from exploring dreams and pulls our focus away from where it should be. Fear is Productivity’s Kryptonite and Gratitude’s Predator.

I’ve trained to be a Ninja Warrior against Future Fear, knowing that with every challenge we’ll ever be given in life, our job will never require more of us than to face one day at a time. Thinking about all the what-ifs for Nella at once—if she’ll be accepted, if she’ll get made fun of, if she’ll be sad or feel different, if she’ll be healthy, if she’ll find employment, if she’ll be taken care of after we’re gone—can feel like having the wind knocked out of me. But I’ll never have to face all of those things ever at once, so why worry about them all at once. One day at a time. We have more than what it takes to love and support our children for just today. And I can wake up and say that again tomorrow and the next day and the next day after that.

I do find it appropriate once in a while to give Fear limited visitation rights to challenge my hope and determination from ever sliding into that blind optimism realm or, simply put, to “keep it real.” Some sad people drink to feel happy. Me? I drink to feel sad. Beer and Bon Iver are the Mucinex for my sadness and fear, so that’s what I do to cough it up. I drink and listen to music and push the bruises of our challenges to feel them more deeply every once in a great while. I’ll cry and talk to Brett about how things will feel when, say, Nella understands more about her limitations, and we give ourselves a good night to feel the hurt.

Thank God the best things happen when we’re awake and sober though, and when you strip away a sappy playlist and a few beers, you find the clarity of hope. I choose hope over fear. I like to think of hope as the place where realism and optimism meet, and that’s where we begin each and every day.

I hope my children feel loved and accepted and yet face enough challenges in life to broaden their perspectives and transform the weaker “I feel happy with life” to a more powerful “I feel fulfilled by life.” I hope they take care of one another. I hope they have opportunities to contribute and loved ones with which to celebrate and share.

I hope this girl knows how exotic and beautiful almond eyes are; how valuable her abilities, her love, her mere existence is; how full these past four years have been with her.

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As my sister wrote with the announcement of Nella’s birth:

It’s as though the stars were aligned and all was and is exactly as it should be. Perfect. When really, God could not feel any closer.

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Happy Birthday to our Nella.
We’ll eat cake tonight. 

Pay It 4Ward

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On Christmas Eve, I had to run to the grocery store to pick up a few things. Consequently, I joined a hundred other last-minute shoppers who stood in long cashier lines, checking their phones, reading magazines and people-watching while they waited. I stood long enough to observe a five-minute scene that occurred a few feet from me, and because it was Christmas Eve or perhaps because it mirrored a piece of our future—one that sometimes overwhelms me—I smiled through tears. A young man with special needs was unpacking boxes, pulling gum and candy bars from inside and carefully arranging them on the shelves next to the check-out. He was quick and careful and cleaned up the boxes as he moved through his work. I didn’t even realize he had special needs until another employee—a nice-looking man maybe in his fifties—came over and started talking to him. The older man mumbled something near his ear and they both laughed and shared a fist bump.

“How ‘bout I take one of these boxes and help you out?” he offered. “I’ll start on the other end and meet you in the middle.”

The younger man smiled and agreed. Not but a minute later, another employee—a woman—came up and laid her arm on the young man. I admit, at this point I was completely sucked in and eaves-dropping.

“You okay?” she asked.

“Yeah, yeah, I’m fine,” the young man answered.

“I saw you had your head in your hands earlier,” she went on, “—and I just wanted to make sure you’re okay. If you have a headache, you can go sit in the break room for a little while and then come back out and finish later.”

“I’m fine,” he replied.

She touched his arm gently and smiled. “No problem, just so you know that’s okay.”

I moved ahead in line, paid for my wine and plant and left, later regretting that I didn’t say something to those two employees—to simply let them know that, as a mom of a child with special needs, I appreciated how well they demonstrated inclusion in the workplace. They weren’t condescending, they weren’t impatient, they weren’t overly syrupy with praise or supervision. They were kind and supportive, valuing that young man’s contribution and friendship no different than any other employee would expect.

In two weeks, we will celebrate Nella’s fourth birthday.

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I feel like we’re off the “Go” space on the board game now, away from the security of “just let me enjoy these first few years of no worries” and venturing into the next squares that lead to that curvy path of more unknowns. Unknown is not a scary word in itself though because, who knows, maybe what isn’t known are amazing things, good things, things we couldn’t have even imagined.  There are new stories every day of individuals with Down syndrome going to college, getting married, finding meaningful employment and living independently.  I do know that facing the unknown for the future of Down syndrome and walking this path of raising a child who is labeled as different is made so much more hopeful knowing that we’re not alone—that others join us in challenging stereotypes, demanding change and promoting inclusion and acceptance.

For the past four years, you all have been a been a big part of that, and there is no way I can express to you how grateful we are for your support. You’ve e-mailed your stories, you’ve shared how your perceptions of Down syndrome have changed, you’ve read and commented and supported our mission in so many ways. While I didn’t create this blog with the purposes of advocacy or fundraising, you’ve jumped in and followed along when we’ve taken that direction. Thank you. Thank you.

Throughout the past four years, we’ve designated Nella’s birthday as a time to give back. We’ve chosen the National Down Syndrome Society as the recipient of our fundraising efforts, and through Nella’s ONEder Fund, the 2 for 2 Fund, Nella’s Triple Crown and two t-shirt campaigns this year, you’ve helped us raise a total of $260,409 to benefit the over 400,000 individuals living with Down syndrome in the United States today. These funds allow the NDSS to provide Down syndrome education and support services for the general public, run the national Buddy Walk program which promotes community awareness, and continue efforts to shape and move forward a legislative agenda that will help individuals with Down syndrome live with economic independence.

This year, we’re celebrating Nella’s fourth year with the Pay It 4Ward celebration. To help us celebrate her birthday and the many other individuals with Down syndrome, please consider supporting the NDSS by donating to Pay It 4Ward. We’ve accomplished incredible feats with donations made from caramel macchiato sacrifices.  We’re excited to do it again.

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We know that dollars are important in funding programs and helping to provide support for families, but we also know that awareness goes beyond that. So many of you have shared ways in which you’ve changed your perceptions or stories of how you’ve gone back to your communities to promote acceptance, and I’d love to hear and learn more about things each of us can do in our communities—as simple as recognizing and applauding organizations that demonstrate inclusion in the workplace, as I wish I would have done in the grocery store that day.

Sure, these things should be happening naturally and continually in our society without recognition, but they aren’t happening enough. We need more voices and more support. What can you do? You can pledge to find a Buddy Walk this year. You can find out the name of the individual with Down syndrome who works at your coffee shop or grocery store and make it a point to talk to him every time you’re there. You can research to find a special needs support group in your area and volunteer your services, your gifts (photography, tutoring, etc.). Find events for adults with special needs, and get involved.  Collaborate with leaders in your churches to create socialization opportunities that unite individuals of all needs.  When you see inclusion taking place in education, in sports leagues, ballet classes, etc., let these organizations know you appreciate it! Especially if you don’t have a child with special needs. We are a feedback driven society. Inclusion will continue to happen, creating more opportunities for growth for all children, but not without our support and demand for it.

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We’re asking you to share the ways you are promoting acceptance in your communities by using the hashtag #payingit4ward in social media and tag me (@etst on Instagram, @KelleHampton on Twitter) and @NDSS. Make others stop to think about this too. And teenagers! We need you! Your voices are powerful and loud–more than you know.  Your friends are listening. Give them something to think about.

This little girl has brought so much joy to our home. We prepare for her future and excitedly join others in paving the road for all of our children’s tomorrow by making efforts today—speaking up, reaching out, spreading awareness, shouting from the rooftop that different is beautiful. It really is.

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Thank you again for your support these past four years—for growing with us as we learn more about acceptance, challenges and most of all, love.

Help us Pay it 4Ward to celebrate these four years. We’ve come a long way—from a dark room in a hospital where we didn’t know how to begin to this celebratory, thankful place…full of hope. 
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Click on any of the photos in this post to be directed to Pay It 4Ward.