If You Could Take Her Down Syndrome Away, Would You?

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I took the kids downtown this past weekend, an impromptu decision brought on by taking the dogs out early Sunday morning to be met by what us Florida folk call “a chill”–a drop in temps I’ll liberally define as “comparable to a northern fall.” Regardless, it was the kind of weather that begged us to be outside, so I dress the kids in long sleeves, throw Dash’s trike in the trunk, text Heidi with an invite to meet us and head south toward the fancy part of town we go to window shop and play at the good park.

“I’m doing this every weekend,” I always tell myself at the sight of so many people out and about, enjoying Fifth Avenue–mostly spry well-dressed rich people walking their dogs, but there are a few regular folk who help us blend in–that is, if you don’t count Dash ramming his tricycle into the front window displays of stores we have no business walking into. Or Nella, investigating the nether regions of street statues to see if their privates are showing.

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But the dogs–so many dogs, and my kids want to stop and make friends with every one of them.

What’s his name?
Is he nice?
Can we pet him?

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We pet Boomer and Kiki and Reba while their owners wait patiently and smile at my kids.

Heidi talks to a woman who’s sitting in the sunshine, enjoying a coffee. I’m distracted, making sure Dash is gentle with the dog he’s petting, but look up when Heidi calls me. “Kelle!” She smiles. “She has a son with Down syndrome,” she says, pointing to the older woman who’s intently watching Nella play.

“You do?” I say, “How old is he?”

There’s a pause that prepares me for what I know follows. “He passed away,” she answers. “Thirty-two years ago.”

“I’m sorry,” I say. “I bet you miss him every day.”

We talk a little bit about how things have changed for people with Down syndrome these past several years before I gather the kids to keep walking, and then Heidi grabs my arm.

“I’m sorry, Kell. Is that hard to hear?” she asks.

“I’m used to it,” I smile. “I guess I’m just thankful that so much has changed.”

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For one, how did word travel thirty-two years ago? How could a mother tell the world the secret story she discovered when she took that baby home? That the joy and love her child radiated and his will to learn and contribute was far more powerful than the narrative she had been told to believe about him. How could she spread word of the powers of human connection she was discovering–the way she saw things differently, the way all her investments in a life of comfort and convenience had crumbled only to give way to something new she didn’t realize existed–an understanding that allowed her to love better, fight harder, and appreciate people for every ounce of spirit that beams from their very existence.

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Do you know what the life expectancy was for a person with Down syndrome in 1983? 25.
And today? 60, with many people with Down syndrome living into their 70s. And while much of this is due to the end of inhumanely institutionalizing individuals, I believe so many of the actions that have changed the outlooks for our children’s future are due to the power of story–moms and dads and grandmas and grandpas, brothers and sisters and friends shouting to the world, “She is worthy, she is smart, she is beautiful, she is happy, she is funny, she is capable, and you know what? She’s a lot like your kid.” Now that we have more tools to be heard, seen and to tell our stories, the world is expanding.

This month, for Down Syndrome Awareness month, I’ve read countless stories from families of a child with Down syndrome–how much these kids are loved, how much their families can’t imagine life without them, how they believe in them, advocate for them and continue to discover–alongside their children–what life is truly about. Based on the algorithms of who I follow on Instagram, my entire Explore page is full of babies of Down syndrome, so I frequently pop in to see these new families beginning. Behind the rawness of the uncertainty of those first few months, the love is palpable, and that’s the most powerful foundation a story can have.

Last month I spoke at the annual conference for the Utah Down Syndrome Foundation, the theme of which celebrated the power of storytelling in advocacy. Yes, things have changed and yes, raising a child with Down syndrome in 2016 is so much easier than it was in 1983, but there’s still an outdated narrative that our stories need to flood out–that this isn’t some sad thing that happened to us that burdens our everyday life. Someone in the crowd raised her hand and asked a question I hadn’t been asked in a long time–“If you could take her Down syndrome away, would you?”

It’s a hard question to answer. We try and separate Down syndrome from who Nella is and often compare her challenges to that of asthma or allergies in that it’s just something she has, not something she is. And yet if you asked any mama if they would take away asthma from their child, I’m sure they’d jump at the chance. No one likes to see their child go through physical struggles, especially ones that affect the opportunities they’re presented with.

But I can’t imagine Nella without Down syndrome, and in a way it is part of who she is. There’s a love, a vibrancy, a compassion, an awareness of people’s need to be seen, and a determination to take in the world that is just…well, Nella, and I don’t know how much of it may be wrapped up in the mystery of that extra chromosome.

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Would I change her? Not her spirit, not her face, not her will, not her heart. Not the way she’s taught me to slow down and stop expecting life to roll out exactly how I planned. Not her crescent moon eyes that squint into tiny slits every time she smiles or the way, when her hand is in mine, I don’t worry so much about tomorrow because this moment right now demands all the emotion I can muster…and that’s happiness. She exudes it. So I will attempt to change what I can–the world around her. To value her, offer opportunities, expand its definition of beauty and success, and to celebrate the many things that make us different.

As for quality of life, I’ve got six years on this now. Our cuddly baby with the big blue eyes and milky skin grew into a girl, and we entered realms I used to worry about–public education, IEP meetings, bigger social settings and opportunities where her challenges are more prevalent and less cushioned by the bliss that is babyhood. But you know what? Life continues to get more beautiful, stretching my perspective, demanding growth and yet, without fail, offering more–more beauty, more love.

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I am so grateful to be living this story as her mom in an age where I can watch, listen and learn from the many others who share it with us.

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If you haven’t seen these, three online mama friends shared their stories in beautiful ways this month, and they made some incredible impact in the media: Amanda Booth and her little Micah, Oakley Peterson’s video of Welles’ story and little Sofia, self advocating like a boss. Your voice, your stories…the world needs them. It’s the most powerful advocacy tool we possess.

Happy Down Syndrome Awareness Month.

First and Last Impressions

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The hallway is empty now–bare bulletin boards that, just last week, were covered with colorful projects and pictures and sign-up sheets for the end-of-the-year party. The emptiness speaks of the fullness that’s been here the past nine months. This hallway is usually Main Street in the morning, a steady stream of in and out–parents leading the way and little ones following behind, dragging their tote bags, stopping in front of bulletin boards to find their hand print, their leaf project, their construction paper kite with the yellow yarn string.  There it is! The pink one! You made that? It’s beautiful!  Classroom drop-offs and hugs and Have-a-Great-Day!’s. Moms in yoga pants shuffling away to workouts and e-mail boxes, stopping outside the door to catch up–let’s do breakfast, let’s have a play date, let’s remember these preschool mornings forever.

Today it’s different. Classrooms have been cleaned out, projects sent home and the name tags that have personalized desks and job lists and cubbies have been removed to transition this sacred room for next year’s lucky students. The only last bits of this year reside at the table in the center of the room, covered in a summer table cloth, scattered with party treats. There are games, crafts, pizza and cookies; and I volley between Nella and Dash’s classrooms for events–a class photo picture frame craft and a montage slideshow to that ukulele version of Somewhere Over the Rainbow that always makes me cry. Today is no different.

I realize how much I truly love this place–for its smallness and coziness but mostly its greatness: behind each classroom door is a world leader. A preschool teacher who holds the key to an individual’s entire world of education with the power of a first impression. There will be many teachers that follow–classrooms, policies, tests, memories of projects and field trips, routines, and over the years a cumulative folder that grows fatter with reports. But there’s something about that very first classroom, that very first person who believed in you and knew you not by a student number–but by your first name. Your favorite book. The way you hold your pencil. How you learn. What grabs your attention. How it takes you a little more time but, man, how you shine when you’ve got it.

I learned about the power of a first impression working in health care. In college, I had a number of jobs at the hospital where my dad worked–a hospital well-known for its incredible patient satisfaction reviews. Every employee, from valet parking assistants to cardiac surgeons, went through extensive training to provide exceptional patient and visitor service–to recognize that walking into a hospital automatically presented vulnerability and to recognize and respond to that vulnerability with utmost attention for every single hospital guest. I see you. I know that you might be anxious or scared and that you don’t really want to be here. I’m here to make it better. Assure you, support you, offer you a warm blanket, listen to you, connect you to the right place that can help. As a patient transporter, I was paid a lot less than, say, a doctor. but I was often one of the first people patients encountered as I picked them up from waiting lounges and patient rooms to take them to their procedures. I remember being told–and believing–that I might be the most important person that patient interacted with; that my presence, words and care could be the ones that changed that person’s entire hospital experience into a comforting and calm one. I had the power of a first impression. We learned that patients, without even thinking about it, expect that doctors are licensed, nurses are trained and that machines that keep your heart beating are working properly, but what they judge you on–what their entire health care experience is truly about–comes down to being seen. Feeling valued, listened to, loved.

Education is a lot like health care in that sense. I assume and hope I can certainly expect that my children’s schools are up to code–that teachers are properly trained and text books are up to date.  But what their entire educational experience is truly about comes down to being seen. Feeling valued, listened to, loved. I was reminded of that recently by another teacher and a parent of a child with Down syndrome when I had IEP Tunnel Vision: the document. Make sure it covers everything. Focus on the plan. The wording. The accommodations. The legal rights.

“Remember,” she wrote me, “an IEP is a fluid document that can be changed at any time. What’s better than a great IEP is a great team of teachers behind your student.”

Like health care, I know that I can’t control everything and that little minds are a lot like little bodies. But as we prepare for Nella to go to kindergarten and enter a much bigger world of friends, teachers and experiences that will continue to shape her entire world of learning, I’m comforted by the foundation that’s been laid by a lasting first impression–this little school and a teacher who has taught my child that she is incredibly capable of very big things, and that she is valued, listened to and loved.

I hug her teacher one last time yesterday, unable to let go. “Thank you, thank you,” I whisper. “You’ve given me a gift. I’m not anxious anymore.”

We’re now in the bridge between two sides–the ground that launched Nella into the public school system and the side that will receive her next year. And this week, we venture into another first impression as the principal of the school she’ll attend next year takes her hand and leads her to the kindergarten classrooms so she can explore and get comfortable. “We cannot wait to have her here next year,” the principal assures me. “We’re ready for her, Kelle. She’s going to do great here. We love her already.” With tears, I hug her before we leave. “Thank you, thank you,” I whisper. “You’ve given me a gift. I’m not anxious anymore.”

I know there is much to be done across the country in the world of education, especially when it comes to special needs. I’m prepared for setbacks and frustrations in coming years and understand the power of advocacy and the importance of growth and change. It gets harder every year, I know, and as the gap between learning pace becomes more prevalent and she’s more aware of her differences, I’m expecting it won’t be easy. But right now I have two powerful first impressions that drive our next step and cushion our new beginning.

I wipe my tears after our last goodbye yesterday and take Nella and Dash’s hand as we make our last walk of the year down the empty hallway of the preschool. But wait–I forgot to take a picture. We turn around and pop back into the classroom one more time. “Can I get one last picture of you two together?” I ask her teacher.

“Of course,” she answers as she kneels down and hugs Nella. And just before I hit the button, Nella shifts her eyes to her teacher and I see it–the all powerful look. Her worth, reflected by the one who’s revealed it to her this year.

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Teachers, you hold the keys to our everything. How you see them is how they see themselves.

Later at home, I read the letter Nella’s teacher wrote to next year’s teacher and rifle through projects and reports from the last few weeks. “She is wise enough to know that she’s at a different level than her friends, but smart enough to know that she can fit in,” her teacher writes. “She has a wonderful stubborn streak that reminds you that she knows herself well and won’t settle for less. She is most comfortable being treated as equal and being given the same responsibilities as her friends.” Oh, to have your children seen for who they truly are.

For this little one, I’m so thankful that her launch has her sails full spread, pushed by the wind, guided by those who love her.

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Our Children’s Future, an Investment with Guaranteed Returns: 3.21 Pledge

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It’s been five days since I returned home from visiting the students at Vanderbilt University’s Next Steps program. I never know how to tell these stories, especially when they’re as important as this one. I always hope for one of those writing experiences where I’ll sit down and the simple act of resting my fingers on the keys will complete some magic circuit, and the words will write themselves like they’re alive and have been waiting for someone to open the gate. It hardly ever works that way for me though. I have to think about it–scribble notes, cross them out, type, delete, type, delete, stare at the screen a lot.

And this one? This one’s important.

To begin, let’s go back to 2010. In a hospital bed where I had just been told, “We think she has Down syndrome,” I sat holding my tiny perfect baby girl, so consumed with fear and heartache that I could barely breathe. What could I hope for her? Everything you’d hope for your child. I soon realized that most of the things I want my children to have–happiness, opportunity, friendship, afternoons pedaling red tricycles in the driveway and evenings curled up next to me, laughing over the funny part in their favorite book–are available to Nella too, given extra time and some accommodations. But she only just blew out six candles on her cake, and we’re still cocooned by youth, the next step laid out for us on a clear path I can still see. The flailing feeling of “what next?” when the path disappears and you have to forge your own? While it feels far away for us, I know it’s there because too many parents have told me how hard it is to watch their child graduate high school and want the same next step their friends have–to go to college, keep learning, stretch their wings further to fly into the world of contribution and fulfillment and independence–only to be told, “You can’t. You’re limited. Your path stops here.” And for a long time, that was true. But in this great progressive world of big ideas and brave ones who believe in them and work hard for change, there’s a new path being paved. And you get to be one of the first investors. As a smart investor, you’ll need to know your returns, so come with me. Let me take you to Nashville, Tennessee where you get a first hand look at what this new path looks like.

This is my second trip with Liz, the founder of Ruby’s Rainbow, an organization that grants scholarships to people with Down syndrome. Last year we visited two students with Down syndrome attending West Carolina University, and this year we have a hefty schedule packed into two full days of observations, work visits and interviews, following a current student in Vanderbilt University’s Next Steps program as well as a recent graduate.

We begin our trip in the home of Matt Moore, a 26-year-old graduate of the Next Steps program who currently works at Best Buy, volunteers at Best Buddies and lives at home. We’re warmly welcomed early Monday morning by his mom who offers us coffee and hollers for Matt to come downstairs. We say hello and hug and explain to Matt that we want to see what a typical day is like and want to know all about his college program and how it’s prepared him for his current experiences. He knows why we’re here though–he’s been waiting for us.

The separation of time and different worlds between my little family at home and Matt’s grown-up life quickly disappears when I walk into Matt’s bedroom and see a giant photo of him as a toddler, propped against the wall. Somewhere along the journey, we’re all just parents in love, hanging pictures of our babies, dreaming of what their world holds for them, hoping it’s grand.

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The connection continues with all the photographs displayed in Matt’s home–so many of him and his sister.

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“That’s Katie,” Matt’s mom Sheila tells me. “She’s getting married this summer. She’s finishing school to be a special education teacher.”

I smile. “I hear that a lot from siblings with kids with Down syndrome.”

“I asked her, ‘Are you sure you want to do that?'” Sheila went on, “‘It’s a lot of work.’ But she’s determined. She said, ‘It’s where I can make a difference.'” Sheila chokes up which makes me choke up, and I’m glad somebody gets choking up out of the way this early in the morning because I’m emotional and don’t want to be the first one.

Matt continues his daily routine as we ask him questions, snap pictures and roll video. He’s unphased by our hoopla yet proud to talk about his job and his recent college experience.

“How did you feel walking across the stage when you graduated?” we ask him.

“I felt proud my family was there with me,” he answers.

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“And we are so proud of you,” his mom adds.

Matt tells us all about the Next Steps college program–about the courage he gained, the skills he learned, the student ambassadors who helped him with planning and friends, homework and tests.

“The program changed Matt drastically,” his mom tells us. “I remember picking him up after his first day and he said, ‘Oh man, I want to live here. I want to stay on weekends.’ He wasn’t the same young man coming out of that program two years later than he was going in. He’s more confident. Independent. Loves life.”

“We have to work our schedules out just so he can get to all the events he’s invited to,” his mom continues. “And 26 years ago? We had no idea. We just didn’t know what to expect.” Sheila stops and starts to cry. “It’s amazing. We never dreamed this would be the way it is.”

I hear more crying next to me and look up to see Matt. He pulls his glasses off, wipes his tears, and looks at his mom with a look of love I know so well now. “You did good, Mommy,” he tells her.

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Matt finishes packing his lunch and grabs his Best Buddies shirt for his volunteer job he’ll be doing after work. He proudly points to the back of his shirt, “It says STAFF. That’s me.”

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We drive him to work and follow him in to the chorus of high fives and “Good Mornings!” as his coworkers welcome him at the entrance.

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“Hey Matt! What’s up?”
“Saw you at the Vanderbilt game the other night. Did you see me? I was waving and yelling your name.”

Matt introduces us to his friends and leads us to the employee lounge where he tucks his lunch away and prepares for work.

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Taped next to the door in the lounge is a newspaper article about Matt, and if you look closely, you can see where he signed it–MATT, right there in the corner.

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He wastes no time–clocks in, looks at his schedule and heads to customer service where a stack of inventory is waiting to be sorted and taken to the back warehouse.

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From watching Matt and talking to his coworkers, there is no doubt that he is a valued contributor to his workplace.

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He admits it can be overwhelming when customers stop and ask him a lot of questions, but his manager has a game plan for when that happens–find someone who can answer the questions he can’t. But for the job he’s hired to do? Move inventory, stock product, help customer service employees keep a smooth-running ship? He does his job well.

“Let me put this way,” one of his managers tells us. “I have a budget for labor, and I take hours away from someone else to give them to Matt. I wouldn’t do that if he didn’t perform his job well.”

“He is the highlight of my day,” says Scarlet, one of his coworkers.

“Employees love him because he stops to say hi and ask if they need anything,” Kyle, another manager explains. “And he’s been asking to learn some new skills. He knows how to do the job he’s been assigned to well and he says he wants to expand what he’s able to do here.”

“Are you going to take him up on that challenge?” I ask.

“Absolutely,” Kyle answers. “I’ve already been thinking about where else he can put his skills to use.”

From our morning at his home and workplace, it’s clear Matt feels fulfilled by his work and contributions. This theme continues when we visit Best Buddies later where Matt stops by to finish a job he had started earlier–some handwritten letters to sponsors. He has his own desk, surrounded by framed pictures of friends and family, and tells us Best Buddies is where he met his girlfriend, Olivia.

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We connect with Olivia later that evening when we meet up with other Next Steps students and their families at BB Kings in downtown Nashville. Olivia enters the restaurant, and Matt lights up, excusing himself from the table to welcome her.

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The parents sit at one end of the table and we join the students at the other but aren’t sitting long before the music calls us, and we’re on the dance floor, shakin’ it to a Blues band. This is my church, by the way. This is where all the sleeping parts of me are awake.

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I ask Matt and Olivia and Jason, another student in the Next Steps program, the same questions I’d ask any other college student or young dreamer in love. What’s your favorite class? How’d you fall in love? How often do you see each other? Where are you working right now? What’s your dream job?  They are proud to tell me about their classes, what they’ve learned, where they work, and when it comes to the big question of “Where do you want to be?,” they all answer with hope: I want to be independent.  

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That goal is clearly becoming closer with college programs like Next Steps at Vanderbilt University. We start our day early Tuesday morning on the campus of Vanderbilt where we see the program in action. Jason, a current first-year Next Steps student, is meeting with Taylor, one of his student ambassadors who helps him with homework. They are watching a TED talk on Jason’s computer, a weekly assignment for Next Steps followed by journal writing about what they learned.

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“Next Steps is one of my favorite things I’ve done at Vanderbilt,” another ambassador tells us later at lunch. “These students have become my friends. I’m not just here to help. This is a mutual relationship.”

It’s the mutual relationship that interests Dr. Carter, a special education professor we meet with later in the day. Dr. Carter not only teaches regular classes (some, like “Transition to Adulthood,” of which Next Steps students have chosen as their regular ed classes to attend) but is involved in research that captures the impact of university programs for individuals with intellectual disabilities.

“I’m interested not only in the story of why it matters to students, but as a campus as a whole,” he explains. “How is this good for peers? How does it make the university experience?”

As one of the leading research facilities for individuals with disabilities, professors and students at Vanderbilt University’s Kennedy Center are conducting research in hundreds of study fields that involve disability. For years, Dr. Carter has studied work places, faith communities, K-12 schools and colleges that practice inclusion.

And what they’re finding? “This is changing perspectives and outcomes of everyone,” Dr. Carter reports. “It’s proven that peers who learn along side students with significant disabilities go up a letter grade and a half or stay an A if they were already an A.” Research involves years of data collection, classroom observation and now includes follow-up studies with students who are involved with peer mentoring. Peer mentors report new friendships, a heightened sense of self-awareness and many times an experience that changes their career path.

“Of course we have to get our faculty on board,” Dr. Carter explains, “but it’s happening.”

Fifty plus professors have agreed to let Next Steps students be a part of their classes and make accommodations for their learning and while not all classes are suitable, most of the professors who have agreed to include students with intellectual disabilities report that the experience made their classes better.

As Dr. Carter explains, “Having a student with intellectual disabilities in a college class helps professors make a universal design for instruction and change their ways of teaching that ultimately benefits ALL students. It reveals things you might have overlooked in your teaching and brings a great sense of satisfaction when you see those students thrive. This is shaping the entire undergrad professional experience.”

I ask Dr. Carter the question I ask everyone in special needs education: “Why special education? What brought you here?” I expect the same answer I hear from so many–someone they met who changed their life.

“It’s a long story,” he answers, “But yes–there was someone I met. A friendship years ago. For once, someone didn’t care about my accomplishments or anything else I did.”

The current employment rate for adults with disabilities in our country is 15%. Graduates of the Next Steps program? 87% paid community-based employment. It’s working.

“Studies show that if a parent truly expects their child to grow up, contribute and work,” Dr. Carter tells us, “the odds of that happening increase 6-12 times.”

To grow up and contribute. To be known. To be needed. We all want that.

Success with Next Steps has opened new doors for Vanderbilt University. The program recently received a $1.93 million grant from the U.S. Department of Education’s Office of Post-secondary Education to expand the 2-year non-residential program to a 4-year residential program.

What do the students think about that? Well, we had dinner with them Tuesday night, and it was unanimous. They all chanted, “We want dorms! We want dorms!”

It’s those chants that stay with me as a mom. The voices from so many students who’ve told me they want to go to college, they want jobs, they want to live on their own. The parents ahead of me on this journey who’ve prepared me: “Nella’s going to want this too. They just want more.”

And my friend Liz and Ruby’s Rainbow? They’re giving them more–$85,000 to 32 scholarship recipients last year and with your help, even more this year. You should see Liz in action. She lives and breathes this organization. She knows all the recipient names by heart–where they’re going to school, what job they’re pursuing. She talks about them like they’re her own kids, and in a way, they are. One of last year’s recipients, Paige, called Liz at 10:00 the other night, and Liz excitedly took the call from our hotel room. “It’s Paige! I’m taking this. I know why she’s calling–she wants to read me her essay.”

You should see the way these students and their families hug Liz when they see her–the thank yous for believing in them.

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It’s the most beautiful, promising thing to be a part of.

And YOU? You get to be a part of this too. The path to change and a better life and more hugs like these and stories like Matt’s need more opportunities, and we can help provide them. For everything you’ve ever dreamed for your child, for any emotion you’ve ever felt reading here, for the way you can possibly relate to a mom in a hospital bed holding a new baby, hoping for her happiness or for a young man dreaming of going to college like all of his friends–can you funnel that into a small donation of $21 to help Ruby’s Rainbow grant more scholarships this year?

 

Here’s how the 3-21 Pledge works. World Down Syndrome Awareness Day is March 21–so we have two weeks here.

1. Click here to make a $21 pledge.
2. Pledge to be kind and considerate to people of all abilities (I know you got this one!).
3. Share your pledge with 3 people (or more!) and ask them to do the same.

This year, the 3-21 Pledge visually tracks your donation and people who donate from your link, so you can see exactly how much your pledge grows, a true testament to the fact that one person can make a huge difference. Social media creates wonderful momentum for missions like Ruby’s Rainbow and the 3-21 Pledge, and they can’t make this happen without you. So, would you please share? Make it personal–tell your friends why it matters. It’s not just for our kids–it’s for ALL kids.

If you click on one link on this blog, please make it this one. As Dr. Carter said, this is changing perspectives and outcomes of everyone. We get to to this, together. Invest in this, and your returns are guaranteed.

The future for my girl is looking brighter.

Do I still worry? You bet. But I know we’re not alone.

Thank you, thank you, thank you for coming with us. 

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