Three Years Apart, Two Hearts Together: A Report Card of Siblings with Special Needs

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“Hold Dash,” she says, skipping to the couch where she climbs into her spot—the same spot she’s sat to hold him since his pink wrinkled feet were stained with ink from his birth certificate prints. She pulls a pillow under her left arm to prop his head up–as if he needs it–extends her arms and waits, beaming with such big sister pride, you’d expect a swaddled newborn to be handed to her followed by camera clicks and flashes. Instead, skinny toddler legs awkwardly dangle as I attempt to cradle and transfer Dash—all 37 inches of him–into the space on her lap without a kick to her face. He smiles and plays along; he knows the drill.

“Oh, look at the baby,” I coo, tucking a blanket under Dash’s chin while Nella pats his legs and snuggles him close. They both giggle, realizing this is a bit silly now, but no doubt enjoying the charade—him, for the attention; her, for the chance to be the biggest, the nurturer, the one he looks up to.

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Later in the day, they swim together. Nella wears a life jacket and sits on the first pool step where the sisterhood of Barbies is currently gathered, their naked bodies floating in a circle. She talks to her dolls excitedly, words pouring out so quickly, they overlap into jumbled phrases that are broken by laughter and occasional talking tos—“No Barbie! You bein’ mean!”—because sometimes those girls get out of hand. Dash joins her for a moment, but the promise of underwater adventures granted by his new swimming skills is too good. He’s off, away from the edge, free from a life jacket, kicking, paddling, pushing distance and depth and breath limits. He jumps and waits for us to clap, again and again and again. Nella smiles and claps too.

In a blur of two years, he’s caught up to a place we knew he’d get to, a place we talked about before he was even born. He’s mastered what she’s mastered, chasing the next thing—a surge of new vocabulary words, a size 10 shoe, the discovery of how to slip a key into a door, turn it left and unlock it with a click!—with a speed we’ll never get used to. Her baby–the one who once sucked the finger she crammed into his mouth when he fussed; the one she patted to sleep, pushing our hands away when we tried to assist–is no longer a baby but nearly her twin, a bond strengthened by the sharing of everything–height, clothes, cups, car seats, secrets, conspiracy theories. One never requests a Popsicle or a cheese stick or a pretzel bag without asking for one to share. “For Nella,” Dash asks. “For Dash,” Nella says.

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While their bond will never break, their window of campatibility is slowly closing, and I feel it for her. She wants to be bigger, the helper, the teacher and he’s often helping her now. The flip side is, of course, that he pushes her along, becoming another valuable resource in her life. Here, let me show you how to climb this bookshelf. Hey Nella, follow me. I Shawshank’d a secret tunnel into the locked pantry. She’s learning so much! Siblings are motivating forces–I have mine to thank for attempting many new things. And with the added power of one, two, three, four comrades behind her, Nella’s going to do just fine. Before I find our rainbow though, let me make note of the clouds. My clouds look like little bursts of sadness here and there, worries for her feelings and, undoubtedly, projections of my own misperceptions–daunting phrases like left behind that, when I really think about it, aren’t true at all, but still…they’re there. It will be hard to watch her struggle to do things that are easy for her brother and sister, and the sadness of that cloud can feel heavy sometimes.

But…

We are all moving forward, falling behind, on the heels of some before us and smoothing a path for those behind us always, at the same time. The importance is that we’re on the track together.

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Nella received her end-of-the-year preschool report card last week, a gentle informative assessment comprised of a group of indicators generalized by educators as age-appropriate preschool standards. Always excited to see her sister’s school progress, Lainey pulled the report card off the counter and tried to make sense of it. “Tell me what it says,” she asked, handing it to me.

I read first the note that was stapled to the top of the report card above the assessment, a smart teacher’s way of saying: Read this first. Nella does not equal her abilities. Nella equals the little girl I hug and teach and celebrate every day. 

The note focused on the joy that Nella brings to the classroom and on the incredible progress she’s made this year and ended with “I’m going to miss her so much next year.”

Lainey smiled. “What did she get?”

“Well,” I explained, pointing out the rubric, “there’s M, S and N. M means ‘most of the time,’ S means ‘some of the time‘ and N means–” My mind jumped to “none of the time,” but I stopped and looked back up at the key. N doesn’t mean “none.” Do you what N means? N might be the most valid measure of competence and progress, equally applicable to us all.

Needs more practice.

We are all so focused on mastering tasks. In fact, we’re beyond that. EXCEED, we think. Brett took one look at the honors list in the program at the last graduation we attended and laughed. “5.0? Seriously? Dude, when I was in high school, I would have thrown a party for a 3.8.” The truth is, the best lessons in life aren’t mastered or exceeded. They are locked in the “am learning” stage. And thank God, because otherwise I’d feel like a big fat failure.

I haven’t mastered mothering without meltdowns.
Or loving without judgment.
Or trying without flopping.
Or running without breaking to massage that pain in my side.
Or freely writing what I really feel.
Or valuing my self worth without comparison.
Or making all the right choices for a life best lived.
But I’m learning.

My life report card would consist of a stapled note noting my positivity, my big heart, my great use of color. And underneath it, a giant N. Needs more practice. 

And I’m happy with that assessment.

I approach Nella’s progress equipped with the same things I use to approach my own: Perspective and Action. We celebrate the magnificent opportunities that dwell in the assessment of “needs more practice.” And we show up for practice every day.

I finish reading Nella’s report card to Lainey, giving credit to the importance of each grade, celebrating the “most of the time“s and “some of the time“s and the familiar place of “needs more practice.” When I’m finished, Lainey takes the paper from my hand and scans it over.

“What’s this?” she asks, pointing to a letter chart with circles.

“Those are the letters she knows.”

She studies it carefully. “It says she doesn’t know R. Yes she does.”

“Exactly,” I smile. “It’s just a piece of paper, Lainey. Report cards don’t show who you really are.”

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The report card is still lying on the counter this morning when I wake up. Dash is first to join me and finds his way to a stack of cardboard blocks while I make my coffee. I hear a few crashes, some blocks being flung to closet doors, and in my head say another thanks to Brett for picking up the cardboard ones to temporarily replace his former wood weapons of choice. Nella soon wakes up to join him in his room and I leave the two of them alone to do their thing. The alarm of prolonged silence though soon calls me to check on them, and I peek around the edge of the door.

“Clean up,” Nella says, stacking blocks against the wall where they belong and directing Dash toward the last two left under the table. He runs to get them and passes them proudly to the boss, the big sister, the teacher, the helper, who finishes the clean-up job.

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Dash looks to Nella, clearly in charge, for the next command. She spots me from around the corner and another idea is sparked. “Take a bath,” she says, pulling an arm out of her sleeve in preparation.

“Take a bath,” Dash repeats, two steps behind his sister who’s already in full trot down the hallway.

They both drop an article of clothing near the living room rug, too excited to wait for the bathroom, and right before I ask them to pick it up, I notice the other treasures left in the living room–the lone ballet shoe, the sports bra, the towel, the tape measure and the open book next to the empty glass.

Our family just needs more practice.

As for the assessment of these two?

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They fight “some of the time.”
They listen “most of the time.”

But that space in her arms where she’s held him a hundred times? He’ll fit forever.

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3-21 Pledge Support

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Did you read yesterday’s post about the 3-21 Pledge?  If you didn’t, stop. Do not pass go, do not read any further. Go catch up and then come back.

We raised over $53,000 so far for Ruby’s Rainbow, thanks to your generosity and the incredible support you gave in sharing the story. If you don’t have an extra $21 to give, that’s okay. You can still support the 3-21 mission by sharing Zach and Ali’s story and asking others to make the Ruby’s Rainbow pledge. We still have until 3/21 to celebrate World Down Syndrome Celebration Day, so share away!

Liz and I texted all day yesterday, into the night, giddy with excitement over your support.

And I’m so happy to share these four business friends who have committed to supporting Ruby’s Rainbow with us.

SHOP GEO
My beautiful friend Nici who’s also a writer, mama, maker and lover of good is donating $3.21 to Ruby’s Rainbow for every purchase in her shop for the month of March. Shop Geo hand-cuts and stitches wares and wears to your unique specifications and has a whole shop full of clothing, accessories and homewares. Click the photo below to see more of her shop.

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MELODY JOY DESIGNS
My friend Melody (who I happened to finally meet in person the night before our college tour with Zach and Ali) offers handmade goodies from knit cowls to mother nest jewelry, a favorite of many. Melody is giving 15% of all of today’s shop sales to Ruby’s Rainbow. Click the photo below to shop.

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TUTU CUTE BABY
My friend Kaili right here in Naples makes the most gorgeous tutus for kids and babies. Lainey and Nella wore them at our friend Kaity’s wedding last year, and they looked like little mountain angels.
Kaili’s donating $1 from every tutu she sells from here on out to Ruby’s Rainbow. Check out Tutu Cute Baby by clicking on the photo below.

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BORN SHOES
Finally, our friends at Born Shoes wanted to help. “We’ll give away shoes!” they said. “Will that work?”

And I thought, when does giving away shoes ever NOT work? Yes, yes! We love Born Shoes!

So, here’s how this one goes. The first five people who donate $50 or more today to the 3-21 Pledge and e-mail a screen shot of their completed donation to kellehamptonblog@comcast.net (subject line: Born for 3-21) will receive one pair of ANY shoes on Born Shoes site. *Note: The giveaway has been filled now. Thank you!
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I love what we’re doing together. Thank you, thank you! The world is full of so much good.

If You Build It, They Will Come: If you read any post here this year, please make it this one.

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When Nella was born, I quickly reorganized my expectations for her life with a lot of okays.
It’s okay if she doesn’t go to college.
It’s okay if she doesn’t drive a car.
It’s okay if she doesn’t live on her own or have children or check off all the boxes on “The Life of a Successful Adult” list that the world has created.
Because what matters most is love, we told ourselves. Let her be happy, let her feel included, let her learn, live a fulfilling life and, above all else, let her feel loved .

We were inundated with beautiful stories from families who love someone with Down syndrome–positive stories, hopeful stories, stories that told us we were going to be fine, that Nella was going to be fine. I hung on to those stories and to the pictures of children’s smiling faces that parents sent me. I saved them in my phone and pulled them up when I needed to be reminded that everything was going to be okay. See Lilah. She’s happy, her mama says. She has friends and is loved and look how beautiful she is! Everything’s going to be just fine.

As I talked to more parents and was slowly introduced to the world of adults with Down syndrome, I heard the same–that the joy outweighs the pain. But there’s definitely a change of tone when you talk to parents of adults–a wisdom perhaps, laced with a present sorrow for a deeper understanding of what their children have to work so hard for–good jobs, a social life, independence.

We’re cheerleaders, the new parents, bound by optimism and fueled for a good several years by jetpacks of love that are refueled simply by our child saying a new phrase or busting some dance moves or curling up to us on the couch for that embrace we know too well–the one “low muscle tone” can only begin to describe because it’s less about a physical explanation and more about a staggering feeling that’s meant to remain mystical.

Those parents of adults are the varsity team. They too cheer us on and share our optimism, but they know things, things we can’t understand until we get there. I know from talking to them that there’s a lot of support for little kids, that schools provide many educational and social opportunities, but that about the time kids normally start teetering on the edge of the nest, sniffing out the world that whispers to them to fly, it gets hard. It gets hard because they want to fly, they were born to fly, but suddenly support is harder to find. Or it says “fly a different way.” While friends have been excitedly opening acceptance letters, meeting roommates and packing boxes for life at college, kids with Down syndrome have been waving goodbye from the front porch, often wishing for that same excitement but believing that it’s not available to the them.

But what if it was?

I’m going to ask you to come with me on an adventure for a moment.

Come with me to North Carolina, to Western Carolina University, a college campus tucked in a valley of the Tuckasegee River between the Blue Ridge and the Great Smoky Mountains.

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Several years ago, a young woman attending a special needs graduate course there piped up at the end of class and asked her professor, “What is this college doing for inclusion?” The professor thought a moment and then turned it into a homework assignment (“The other students hated me,” she laughed.): Design and write out what you think a college program for special needs should look like.

If Field of Dreams taught us anything…

If you build it, they will come.

The students designed what became the University Participant (UP) Program, a fully inclusive 2-year program–full residence, dorms, classes, work, support, communication, goals, accountability–and soon found one student with special needs who wanted to come. “We were building the airplane as we were flying it,” Dr. Kelly Kelley remembers.

“So you built it,” I asked, “but how did you fund it?”

“Passion,” she quickly answered.

Speaking of passion, let me explain how I landed in North Carolina last week.

Right before Nella’s birthday this year, I received an e-mail from Liz, another mom of a little girl with Down syndrome. I had written a post expressing interest in organizations helping adults with Down syndrome, specifically in relation to post secondary educational opportunities. Liz responded, telling me about Ruby’s Rainbow, the organization she and her husband had just started in 2011, providing scholarships for people with Down syndrome to attend college. In four years, Ruby’s Rainbow has already helped fund 42 people’s college dreams.

The thing is, a lot of people don’t realize that “people with Down syndrome attending college” is even a phrase. And how can we raise money for it if people don’t know it exists?

I wanted to help bring attention to the incredible work Liz and Ruby’s Rainbow is doing, but I was also curious–what does this even look like?

One phone call with Liz, and we were scheming. Let’s go to college. Let’s go visit two Ruby’s Rainbow scholarship recipients and let them tell the story. Let’s peek into the window of possibilities for our own girls. Let’s see what can happen when one person begins with a question: “What are we doing to help?
Thanks to an incredibly accommodating college that quickly set up a full day’s agenda to give us a thorough day-in-the-life experience, and two individuals who were eager to share their story with us, we were on our way early Wednesday morning last week to make the two-hour drive from our hotel to Cullowhee, North Carolina.

Our first stop: The Office of Residential Living where Zach gets paid to work 10 hours a week as an office assistant to supplement his college experience. A handsome young man, sharply dressed, stepped away from his computer to greet us when we arrived. He shook our hands and introduced himself, answered our questions about what he does and paused to answer the phone when it rang or tend to the front desk when his officemate asked for help.

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Promising to meet up with him later at his karate class, we left Zach at work and headed out to meet Ali, another UP Program participant with Down syndrome who works as a preschool teaching assistant. She warmly greeted us in the hallway, but didn’t let the introduction break her focus from the more important people there–the students who adored her. Together with Miss Charlotte, the preschool teacher who kindly shared instructional and guidance duties, Ali led her beloved preschool students in from recess and settled them down for a lesson she had prepared on polar bears.

“Polar Bear, Polar Bear, what do you hear?” Ali read each page with enthusiasm, stopping to look at pictures, carefully scanning the pages so that each child could see, and the students quietly followed her lead. After the story, she modeled how to make a polar bear craft from a styrofoam cup and guided the students through each step, kneeling to help them apply glue or add a googly eye when needed.

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When one student called for help, Ali walked over to assist. She stood behind the little girl and reached around her shoulders, like a hug, to help her glue a nose on. I caught a moment–as quick as a blink–but I saw it. The little girl turned her neck to look straight up at Ali above her, and she smiled this loving little thank you. I’ve seen that look with my own girls and their teachers before, so I’m qualified to spot it, but this one? It was so special.

It’s okay if she doesn’t have children.

Another teacher told us that they call Ali “the baby whisperer.” “You should see her at naptime. The little ones love her, and she can get them all to fall asleep.”

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We showed up at Zach’s karate class later.

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It was a long class in a warm gym, so we eventually sat down against the wall to watch, but Zach? He was focused. He completed the class just as good as anyone else, receiving feedback on his form and gentle adjustments from the teachers when necessary–just like the other students.

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From karate, we went to lunch at Which Wich? where ordering a sandwich isn’t the easiest task–so many choices, boxes to check off, paper bags to fill out. “Do you need help?” I asked Zach. “No, do you?” he asked. I did. Our table was soon filled with friends who stopped to chat. I had made a note to ask Dr. Kelley about how they made friends and if socializing was a problem, but it was clear that wasn’t an issue. Zach excused himself early from the table because he had a finance test in his budgeting class. “Good luck on your test!” a crowd of students hollered. One of his friends and an UP Program student employee pointed out that, while classes are audited for UP Program participants, for the most part, course work isn’t modified. “And Zach doesn’t want it modified. He wants to do the same assignment, the same test, the same projects as everyone else.”

Later we met with Dr. Westling who oversees WCU’s UP Program with Dr. Kelley. With decades of research and development under his belt, there’s no doubt the man is well-versed in special needs education, but it’s his passion that stands out.  “It’s a good fight, what we’re doing here,” he says.

“Forty to fifty years ago,” he explained, “even at the beginning of my career, adults with Down syndrome were living in institutions or, at best, group living accommodations.” Look where we are. “People are capable of having a very full life if you’ll let them and give them the guidance.”

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WCU’s UP Program focuses on person-centered planning, individualization and self-determination. “We don’t want to tell someone they can’t do what they want to do,” Dr. Westling added. So they help them, combining education with natural supports and people living on campus to provide a fully inclusive educational experience aimed at preparing individuals for employment and independent living. An entire network of volunteer students as well as students employed by the UP Program help provide support to the eight students with special needs who attend WCU every year.

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UP Program student volunteers and employees help with scheduling (the most impressive thing I’ve seen–a computerized, color-coded system that could run the world), homework, life skills and test support. This isn’t just a job or volunteer opportunity for these students. These people are their friends.

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“This UP Program made my college experience worth something,” Abby, an UP Program student employee, explained. “College isn’t just about hanging out. I feel like I’m helping a cause.”

Ashley, another UP student employee majoring in speech with a special ed minor added, “This gives me so much encouragement to go into my field of work. And it’s so great to watch their independence grow.”

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The students involved in running UP aren’t just special ed majors either. Augaly, a political science and international studies major and UP worker described perhaps one of the best things UP has to offer: “This has made me more aware of people’s differences. And not just disabilities–it’s not just about that–but people’s differences in general. We’re all different.”

Imagine a whole world of people who function like WCU’s UP Program: What is it that you want to do? I will help you get there. And it’s working. Most UP Program participants are matched with customized employment opportunities before they graduate. And not only that, if we continue to invest in these programs, state and federal governments will save money on group homes, work and assisted living programs (they’ve done the math) for overall success–less money, better lives, better living.

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Do the program participants get homesick? I wondered. Are they ever sad? Is it hard? Dr. Kelley smiled at my questions, “You’d be surprised. Most of them don’t want to go home. Ask them.” Jaylen, another program participant, answered, “This place is my family.” Later in the day, I watched Ali and Jaylen make plans with a few other kids to hit Hot Wing Night the following evening at a nearby bar. I listened as Ali and Abby made plans to study later, saw numerous hugs and fist bumps and overall observed the natural course of what happens when kids are given permission to freely fly.

I asked a lot of questions and took a lot of notes while I was at WCU. I thought about how we could help Ruby’s Rainbow provide more scholarships so that more students who want to can join their friends at colleges that have these programs instead of waving goodbye from the front porch. I thought about how I could tell you all the story of our trip, how I could gather all the necessary information, and I didn’t know how to do that.

And then we visited Ali in her dorm, and suddenly I knew how to tell this story. I can tell it as a mom because that’s what I know. That’s how this whole adventure began–holding my baby in the dark of the night, so desperately in love with her but so deeply hurting for the future I thought she lost.

I was that mom again when we knocked on Ali’s door and she opened it smiling. Hope spilled out of that room like a tidal wave, practically bringing me to my knees.

She was just like any other college student, showing us her room which, she admitted, she had cleaned up just for us. Jewel tones–a hot pink bed spread, a color block rug, a fringe heart pillow, with her name embroidered on it, that looked like a child’s lovie.

“This from when you were a kid?” I asked.

“Yeah,” she smiled.

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She was just like any other college student with her alarm clock and iPod dock, text books neatly organized on a bookshelf, pictures on her desk. I picked up a photo block and pointed to a pretty lady hugging her in a picture. “Who’s this?”

“That’s my mom.”

She was just like any other college student with her laptop and mini fridge with the scattered magnetic poetry. With her shared bathroom and her loft bed–the one she volunteered to climb up and sit on to show us what it looked like.

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She was just like any other college student until I saw, taped to her wall, a newspaper article with her photo. That’s when I lost it. That’s when I was a mom, standing in a field of dreams, knowing exactly how we would share their story, all of our stories…

…Dreams Coming True for Hickory Youth.

It could be Lainey. It could be Nella. It could be Dash. It could be anyone. And it hurts so good to know that dreams come true for youth.

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WCU isn’t the only college building fields of dreams. There’s more. And there will be more if we continue to ask, like Dr. Kelley, “What are we doing to help?”

Here’s the thing. Today, there is something you can do to help. Liz and her husband have been working so hard to raise money for scholarships. They dream of more “Dreams Come True for Youth” newspaper articles taped to dorm room walls and maybe someday a world where news like that doesn’t even make the papers because it happens everyday. They want to call more families to tell them, “We can help you!”

World Down Syndrome Celebration Day is in 11 days–3/21 for three copies of the 21st chromosome.
Ruby’s Rainbow wants to raise money for 21 new scholarships by March 21st, and we need your help. They’ve created an easy way for you to donate and share–take the 3/21 Pledge.

3 Easy Steps.

1. Donate just $21 to Ruby’s Rainbow.
2. Pledge to be kind and compassionate to individuals of all abilities.
3. Spread the word. Ask three friends to take the 3/21 pledge and donate $21.

Share it in your social media channels, send it in your e-mails. If you build it, they will come.

Fifty years ago, adults with Down syndrome were living in institutions. Wednesday night, I cheered two on in a basketball game with their college friends.

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Fifty years ago, parents were told that their child might never talk or go to school. Wednesday night, I watched a room fill up with students who came to hear their peers with Down syndrome deliver speeches they wrote about ending the R-word. I listened to Zach tell me about the half marathon he’s planning to run. I watched Ali read a book to a captive audience of preschoolers.

Fifty years ago, parents feared bullying and a lack of support. Wednesday evening, I watched 100 students sign a pledge to stop using the R-word. I cried as they turned their backs to face a wall so that their friend’s nervousness would subside as she started her speech. I marched with a passionate group of young people across campus as they cheered for their friends, for the truth that everyone matters.

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Five years ago, I cried with the news of my own daughter’s diagnosis because I thought our dreams for her had been shattered. Wednesday night, after an emotional day, Liz and I held up two plastic cups in our hotel room, shared a tearful hug and made a toast: “To the future of Ruby’s Rainbow. And for Nella and Ruby and their friends and all their dreams.” Last week, my friend picked me up from the airport after my trip and dropped me off in my driveway where I could see Nella peeking through the window of the front door. She jumped and smiled and waved, realizing I was home. I couldn’t open the door fast enough and was greeted with a hug that felt like hope. I pressed my lips against her hair and held them there. Sweet baby, I love you. You would have loved what I just saw. 

I’m so thankful for the questions people are asking and for the great work they are doing to respond to needs. I’m grateful for Dr. Kelley who believed that passion was enough to get a dream rolling and for Liz and Ruby’s Rainbow who know that passion needs some back-up.

Can we back them up? Will you please help us build a bigger field of dreams and make the 3/21 pledge to celebrate World Down Syndrome Awareness Day? 

We can do great things, we’ve done them before.

It’s quick and easy. Click on the 3/21 Pledge, fill in your name and e-mail address on the bottom, click submit and a page will pop up requesting your credit card information. Click submit. Done. Then share with three people and ask them to do the same. You just helped change the future.

Thank you so much for coming on this journey with us. Anything is possible. Dreams come true for Hickory youth…for any of us who follow through with our passion to help.

Fly away, little birds. Fly away.

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