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.

Buddy Up

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Happy Halloween. I’ll have you know I take my one half of Lainey’s classroom room mom responsibility so seriously that I didn’t wait until party day to get craft supplies. No, I got a head start hitting up Party City the night before Halloween. So instead of standing in a line of 320 people holding a costume they don’t really want, but it’s all that’s left; I stood in a line of only 290 people. Because I’m responsible like that. Got my plastic spiders, so we’re good.

Today is the last day of Down Syndrome Awareness month, but we live it every day and so do you.  These are our daughters, our sons, our brothers and sisters, our coworkers, our friends; and we recognize the challenges and joys of DS  well beyond this month. Last weekend we walked to celebrate the things we are learning and to commit support and love to each other as we help our loved ones face extra challenges.

It’s such a happy day. 
Look.  The smiles.

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Recognize that face?  Little Coco was part of the Everybody Plays shoot in San Diego.  Her family was visiting Disney World and missing their Buddy Walk in California for their trip, so they headed to Naples to be part of ours. 

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I love our village. 

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I loved watching Lainey instantly make a new friend this year.  She was introduced to Sydney ten minutes before we began walking and they held hands for the entire walk.

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And Coco is a phone-stealer like Nella.  When she realized the phone was locked, she handed it over and said “CODE.”

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Olivia was adopted from the Ukraine last year through Reece’s Rainbow.  Still adjusting to her new family and progressing from delays, her mama thought for sure this trip would be difficult for her.  She smiled the entire day and happily embraced any open arms. 

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Again, it is always an honor and a privilege to be part of this community and to celebrate the many ways we are teaching each other.  A special day indeed.

Okay, it’s 3:00 and I already have a girl begging to put her costume on.

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I’m over at BabyZone this week with 15 Lessons I’ve Learned From My Hardest Parenting Moments

…and at All Parenting with My Budding Naturalist–fostering a love of nature in our kids (Lainey likes centipedes now!).

Happy Halloween!  I love this night with our family.

For Elizabeth and Luke

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Friends.  Tonight I’m sharing someone so dear to my heart with you.  I’m inviting her into this space to tell her story, but first I’m putting down lots of pillows and blankets and asking you to come and sit and listen with open hearts and minds. 

I don’t know that I can type an intro that is worthy of the love behind my friend, Elizabeth.  The way she loves her children is magic, but the way she loves the world around her makes me want to be a better person every day.

I met Elizabeth through my blog.  I don’t even remember exactly how it happened, but sometime after Nella was born, someone connected the two of us, we started e-mailing which then led to texting and phone calls, and now here we are a few years later, good friends.  To me Elizabeth is defined by her heart, the way she loves her children, her faith, her wit, her brilliant medical advice, her passion for orchestra, good yarn, teaching Sunday school and exploring the world around her with an open mind.  She also happens to be the mother of five children–one with CP, one with Down syndrome–and she’s been fighting breast cancer for five years.  Five years of surgeries, radiation and chemo. 

I asked Elizabeth last week if she’d be interested in sharing her story here.  October is both breast cancer and Down syndrome awareness month, and I knew if anyone could beautifully represent both of these, it was Elizabeth.  She lives both of them every day.

There’s another thing about Elizabeth that’s important to know.  She is a woman of strong faith.  She talks about it a lot, she loves her church, she breathes her faith into every e-mail, every conversation.  In fact, I was certain I wasn’t “faithy” enough to be her friend at first and thought maybe we wouldn’t be the best match (my judging, not hers).  But she never treated me like I needed to be saved.  Ever.  She knew we shared the same God, and she respected me and my differences.  I told Elizabeth recently that she’s a big part of my faith journey.  She’s loved me through every bit of it, always treating me like my truth was just as right as hers even though it was different.  That acceptance, that spiritual equality, that love–it’s restored a lot of my belief in church. 

I’ll stop rambling because Elizabeth’s words are more important here.  But more than that, I’ve asked her to pick a child who needs help and told her I’d ask you all to be a part of this.  You see, anyone who knows Elizabeth knows that one of the ways she’s made it through the past five years is by helping others–specifically children with Down syndrome who need families to adopt them.  So you’ll meet Luke at the end of this post.  He will melt you.  We can help bring him home.

The story of my friend Elizabeth with the Very Big Heart:

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My name is Elizabeth, I am a 47 year old wife, mama, fiber artist and retired MD living in North Carolina. The current chapter of my story sort of started when we lost our fifth child, William, about seven years ago. William had Down syndrome, orthopedic issues, prematurity, a precipitous, complicated breech delivery, and we never even got to bring him home.

We were beyond joyful when we got pregnant again the next year. In early ultrasounds we saw some signs of Down Syndrome. I was totally fine with that. We had lost a son, and God was giving us another one. I just wanted a baby we could keep, and hold, and love, and bring home to our other children. We named him George and did everything possible to keep him (and me) healthy as long as possible. The preterm labor got serious at 30 weeks but we hung in there until he stopped thriving just past 34 weeks. Because our fourth child has CP and a metabolic disorder, I was pretty desperate to avoid a C section (how do you care for a non-ambulatory tube fed child on oxygen and monitors after a C section???) so we had a long talk about risks and benefits and decided to try an induction. We had a few scary moments, but our OB never left my side for 15 hours and we had George a little after midnight on December 19, 2007. He did indeed have Down syndrome, and we immediately fell in love with our son.

George was small, weak, jaundiced, unable to figure out how to suck swallow and breathe at the same time, and we all thought he was the most amazingly wonderful baby EVER. There were some really tough times. For example, I wanted more than anything to be able to breastfeed him. I had nursed all my others at least through toddlerhood, several well into preschoolhood. George deserved that, too. The lactation consultants all gave up. But we found a speech therapist who specializes in infant oral motor issues, and after months of pumping, he finally figured it out. By 6 months of age he was exclusively breastfed and gaining weight beautifully. I sure was tired, though. Four other children, including one who is VERY medically fragile and complex, homeschooling, way too many outside activities, other challenges too numerous to mention, and a husband who worked a zillion hours a week… it was hard. But we all loved George to the moon and back.

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People would ask me why I thought God would give our family such challenges, two handicapped children, losing William… and I was never sure how to answer them. I have friends who are really smart about theological things. They know huge chunks of the Bible from memory. They can answer complicated life questions with passages from scripture and quotes from important thinkers. They can dissect doctrinal issues and defend their faith with confidence. Me, not so much.

I believe that God gave us all life as a gift to be loved and cherished. I believe that all sacraments give grace, and that participating in the Mass makes me happy. I believe in the true presence of Jesus in the Eucharist. And you know what? I believe that the rest of it is pretty much just details, and I figure that God can manage the details. I think that’s why I have been teaching second grade Sunday school for almost 20 years. In our church, second graders usually make their First Holy Communion. And to teach second grade, you don’t need to be able to explain complicated things, you must simply share the beauty of the sacraments, the joy of the Mass and the miracle of the Eucharist. That’s sufficient. I can do that. The hard and complicated parts? Just details.

Then our family’s life got even harder and more complicated. When George was eight months old, I was diagnosed with invasive lobular carcinoma. Just two months after finally mastering breast feeding a baby with Down syndrome, I would have to have a mastectomy and a big axillary dissection. They gave me six weeks to heal from that (and yes, I managed to continue to nurse George on the other side for those six weeks) but then we had to wean over just a few days for chemotherapy. My biggest meltdown ever was in the baby formula aisle at Target. Here I was, after pumping for months, working so hard to get my premature baby with Down syndrome to nurse, and now I had metastatic cancer and just had a major surgery and was about to start chemotherapy and then radiation and I still had five children to take care of, two of whom had significant special needs… and now I had to wean my wonderful precious baby when I worked so hard to get him to nurse?

That’s when I came closest to questioning God about all of this. I knew deep in my heart that I had so much to be grateful for. I could spend all afternoon bragging about my sweet husband. And my children. I have five children, who even though they all love George best, really like each other and are kind to each other. We have excellent health insurance, the best specialists around, and family, neighborhood and church support beyond what anybody could hope for. But still…. I struggled with the whole thing. Why a mama who obviously had so much to do to take care of her children – all of them, not just the special needs ones – would get this terrible terminal disease?

So then I started chemo. And I never figured out the why part , but I have gotten some amazing glimpses into how all the rest of it is supposed to fit together. Like this: God TOTALLY knew what he was doing when he gave me a baby with Down syndrome and breast cancer at the same time. There is NO WAY I could have been chasing a typically developing toddler while on chemo. Well,I didn’t have to chase George. Despite all sorts of therapy, he really wasn’t interested in or able to go anywhere. So we snuggled and and sang songs and spent countless hours on the sofa just loving each other. A few months later when I had to have another mastectomy and a hysterectomy, so we knew that we’d be unable to have any more children, we realized how nice it was that our last baby would truly be a baby for a little bit longer than the others….. See, God knew that I needed a baby to get me through cancer, and not just a regular baby. I needed the world’s most amazing baby… a very happy child who made everyone around him happy. An easy baby who basically stayed where you put him. A good sleeper. A baby who brought joy to his older siblings when they were under great stress because of my cancer and my surgeries and chemo…. There is NO WAY this was some sort of random accident. Even if I’m not good at the details, God was. So he gave us George. (Who is still everybody’s favorite, by the way…)

One thing that happens when you have a baby with Down syndrome is that you sort of realize that the world would be a better place if every family got to experience the blessings that we have because of George. So I was thinking about that one night, and talking to another blogging friend, and learned about Reece’s Rainbow.

That’s about when I started blogging. The basic concept was that I was blessed with this HUGE support system of family and friends who were all afraid to call me on the phone to see how I was doing lest they perhaps wake me or George up from a nap. We thought that if I blogged about this cancer journey, everyone could stay up to date, and besides, it would be a record of our family’s story for my husband and children for the future. Little did I know that my blog would connect me with the most amazing mamas ever…. some T 21 club families, some faith-filled homeschooling mothers-of-many, some ladies who are as passionate about spinning and knitting and fiber arts as I am…

But anyway, back to the story. One thing that happens when you have a baby with Down syndrome is that you sort of realize that the world would be a better place if every family got to experience the blessings that we have because of George. So I was thinking about that one night, and talking to another blogging friend, and learned about Reece’s Rainbow.   Reece’s Rainbow is a non-profit organization that finds families for international orphans with Down Syndrome and other disabilities. In many other countries, when a family has a child with Down syndrome, they are strongly encouraged – some say forced – to never bring their baby home, but to give the baby up, to put them in an institution. And this institutional life, in many cases, is very brief and very grim. Reece’s Rainbow also helps with advocacy and fundraising for families who are trying to adopt children with Down syndrome. I was amazed at what a perfect idea this is! Only certain families get to have a baby with Down syndrome, and this isn’t fair. So Reece’s Rainbow fixes this by matching up families with children. And then, not every family is ready to adopt a child with DS, or maybe they just can’t, for whatever reason. That’s not fair, either. So Reece’s Rainbow helps them by letting everyone participate in saving these lives, by advocating, or praying, or contributing financially.  No exclusions.

We obviously can’t adopt. I would give anything to welcome more babies with Down syndrome into our family, but these children need a mama without metastatic cancer. There are, however, healthy mamas with so much love in their hearts who don’t have the spare cash to fund an adoption. So it’s time to confess about my secret. We call it the DeHority Distraction principle. Late at night, when I am feeling really bad, or scared, or worried, like when they have to cancel my chemotherapy because my white blood cell counts are going down, I get on the Internet and go on the Reece’s Rainbow website and find beautiful children. Some already have families working to save their lives, some without families yet. And then, after reading about them, saying a prayer for their health and safety, and learning about their family if they have one, I anonymously make just a little donation into those children’s sponsorship accounts. It’s especially fun when they have a family trying so hard to raise money to rescue them, and all of a sudden this cash appears in the account. So they post about it on their blog or on Facebook, and often it inspires other people to contribute, and instead of watching my numbers go down, I can watch beautiful children’s numbers go up.

This is Luke.  He is currently living in an orphanage in Asia.  He has been matched with a wonderful loving family, waiting to raise the funds to bring him home.  We’d love your help in bringing this beautiful boy home to his family sooner.  You can read more about Luke and donate to Luke’s fund here.  Can you help?  Can you give even just a little bit or share Luke with others who might be able to give?

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I want to hug him.  I want to tell him that soon, soon, he will have a mommy and a daddy and a place to call home.  I want to watch from the sidelines when this boy is held in the arms of his family and finally brought home to where he will be loved and nurtured for the rest of his life.  Our family is making a donation to support Luke, and I hope you will consider giving anything you can to bring him one step closer to home.

Elizabeth is one day past chemo.  I know what that means.  She’s waiting and watching for numbers to go up, up, up while she rests. 

As always, thank you.  Thank you for being a part of this space.  For listening and contributing and caring.

Love to you all tonight.
And Elizabeth.  I know you are reading.  I love you so.