Today is 3-21, a day recognized for celebrating individuals with three copies of the 21st chromosome. On World Down Syndrome Awareness Day, we launch our virtual balloons (they’re yellow), have a cyber pow-wow with friends across the world who celebrate with us, and whisper our bit of gratitude for our daughter, the friends we’ve made in this community and the humble recognition that the introduction of Down syndrome into our lives has become an invitation. The world is rich with so many different kinds of people and millions of stories. The more of these people we meet, the more differences we encounter, the more stories we hear and truly listen to…the more we discover the meaning of life and find our own place amid this very big world that needs our voice, our heart and our hands. Happy World Down Syndrome Awareness Day.

I became friends with a woman a few months after Nella was born when her husband reached out to me after their own son was born with Down syndrome.  “My wife is struggling,” he wrote to me, “can she talk to you?” Only a few months in myself, I didn’t feel I had much to offer but a listening ear and some pretty good “we’re going to do this” enthusiasm; but I agreed to talk to her, and after an initial tearful phone conversation, we found ourselves writing back and forth, sending pictures and joking that our kids were going to marry each other someday. Just a few months behind me, watching Lisa was like watching my own self evolve. As I knew she would, within a matter of months, Lisa let go of crippling fears and worries, fell more madly in love with her little boy and settled in to the idea that there’s so much of life we can’t control. But we can love. And take one day at a time.

I still e-mail and text regularly with Lisa and her husband, not so much about Down syndrome but about important life stuff—like funny e-cards or pictures of our kids dancing in the kitchen. Sometimes we talk about how we’ve evolved, how life seems so normal now when a while ago, we wondered if it ever would be.

I got a text this week from Lisa: “Lately, thinking of the future scares me to death. Not knowing what category we’ll be in. Our quality of life. It’s terrifying to think about. I think about this so much lately.”

I love this vulnerability.  It’s real, it’s normal, and it’s healthy. It helps keep me in tune with my own vulnerabilities and address them in the company of friends.

I thought about it for a minute and realized, yes, it can be pretty terrifying, can’t it? The Future can keep any one of us awake at night, regardless of whether or not we know what we’ll be dealing with. I always come back to this thought though:

We’ll only ever be required to handle one day at a time. Thinking about all of the future right now—packing years of challenges into this one present moment when we try and force ourselves to deal with every heartache we’ll ever possibly experience in life—is not only overwhelming, but it’s unrealistic. Whatever the case, when we get there, we’ll wake up any given morning and deal with that one day. And amid the challenges of that day, there will also be lots of good things to cushion the hard moments—both for us and our children. People who make us happy, lovely things to make us smile. Coffee and music and walks outside and delicious food and good books and holding hands and kissing cheeks. And then we get to go to bed every night and wake up again and deal with the next day with maybe the same challenges but new good things too. We’ll never have to deal with thirty years of hardship on one given day, so why do we force ourselves to think about all of it right this second?

I’ve also realized both within this little spectrum of Down syndrome and in the greater world of experiences outside of it, that our worries about intimidating situations are often so much more overwhelming than the situations themselves. Because at least when we’re in the situation, there is the productive energy of doing it, no matter how hard it is, that fulfils us rather than the latent anxiety of not doing it and worrying about how hard it’s going to be, that keeps us up at night.

Take school, for example. These past four years of having Nella at home have incorporated our initial acceptance and understanding of Down syndrome and yet, there’s always been the security of having her here, with us, protected, secure, in our presence so that we feel very much in control. This probably doesn’t have anything to do with Down syndrome and more to do with parenting.  Sometimes, it’s hard to let go. We worry about how our child will adapt to our absence as well as how schools and teachers and kids outside our control will treat our child. Thinking about all of this for Nella has, I admit, given me some good mother anxiety.  I enrolled her a few weeks ago in a fall preschool program—a typical preschool (as opposed to one only serving children with special needs), one I fell in love with a while ago; one that felt like a good, welcoming, happy place for any child to learn.  I knew I wanted a good bridge between home and kindergarten to get Nella acclimated to routines, being away from home and socializing more with other kids her age; and a once-a-week ballet class wasn’t going to cut it.  Brett and I talked about the best case scenario for Nella, her needs and our family, and we decided we wanted an alternating morning schedule at the preschool we had already researched. So I met with the director of the preschool and Nella’s teacher a few weeks ago. When her teacher asked me how I thought this transition would go, I felt the strong, put-together, this-is-business mom who walked into that preschool quickly disappear, replaced without warning by vulnerable, weepy, this-isn’t-what-I-wanted-people-to-see mom.  “I’m anxious,” I told her.  “I don’t know how it’s going to go. I want her to be happy, comfortable, and I want her to be challenged.” My worries were so tenderly acknowledged, and it was suggested that we start coming to some classes just to visit and introduce Nella to routines before the fall. We were overwhelmed by the kindness and sensitivity of our preschool’s staff. “You can stay with her as long as you feel comfortable,” they told me.

So we started three weeks ago—Nella and I popping in together to get to know the teacher and feel comfortable with the classroom. I thought it would take a while and that by the end of the year, we’d feel really good about starting this fall. I had no idea that within a few days, my child would be thriving—running down the hallway to her classroom, dragging her lunchbox, talking to her classmates and sitting quietly on the rug for circle time, listening to Pete the Cat. On Day 3, I left the classroom without Nella even noticing. I walked down to the director’s office. “She’s painting at the table with her friends,” I cried. “She’s fine. I worried for so long how she’d do, and she’s absolutely fine.” The director smiled and stepped away from her desk to hug me. “Kelle, this is just the beginning of a lifetime of her surprising you,” she said.  So she’s in partial-week preschool now, officially enrolled and putting her lunchbox inside the cubby that says “Nella”…like a boss.

I expect that there will be days where Nella doesn’t run down the hallway so happily to her classroom, and that transitions to new experiences won’t always go as well as this one did. But what a waste of perfectly good anxiety—all those times I worried about the challenge of preschool when we both did far better than I imagined.

There are challenges ahead for all of us—both in our own lives and the lives of those we love.  The most productive thing we can do is to face those challenges head on and to accept that life will sometimes be hard. I find more comfort and strength in accepting that fact than in resisting it.  I hate resisting and dreading and pushing against all the ambiguous what-ifs of the future. It’s exhausting mind-consuming work.

As for those random text exchanges like the one Lisa and I shared this week?  There are things we worry about that loom in the future—things about Down syndrome we might not be able to control like health or dependency issues. We’re working as a community to find ways to make life better for individuals with Down syndrome every day, and we are moving forward.  The therapies, scientific research, educational strategies, classroom accommodations and new expectations are changing the future for all of us.  But there’s more.

Some of those imaginary future scenarios we create?  You are that hypothetical situation. You are the parent of the student in our child’s class—the one we hope teaches your child to reach out to ours, invite her over to play, sit next to her at lunch. You are the employer who we pray sees potential in our child and hires her to perform a job she’ll love. You are the teacher in our child’s classroom, the one we want to work hard to meet our child’s needs and accept the challenge of creating a classroom environment that includes him and allows him to thrive. You are the high school student who we fear might not take the time to get to know our child, the coach we hope finds a way to let our kid play, the school board member whose vote matters in terms of decisions regarding our children, the co-worker who might need to practice a little extra patience and compassion in making sure our children settle in to their new jobs and feel welcome. You are the thinkers and doers and world-changers who can help alleviate fears for millions of parents world-wide and make life better for people with disabilities. That’s you.

Special needs is very much a part of every one of our lives because we live in communities that teach, employ, support and benefit from the contributions of individuals with special needs.  Special needs is very much a part of every one of our lives because we all have them—needs.

The world is rich with so many different kinds of people and millions of stories.  The more of these people you meet, the more differences you encounter, the more stories you hear and truly listen to…the more you discover the meaning of life and find your own place amid this very big world that needs your voice,  your heart and your hands. Happy World Down Syndrome Awareness Day.

And remember: we are all on the same team.  

Love someone with Down syndrome?  A child, a sister, a brother, a niece, a friend, a neighbor, a co-worker? Leave a comment writing your pledge and the name of your loved one today.

I’ll start.

I am a thinker, a doer and a world-changer, and I will use the stories I hear and the things I learn to help make the world a more accepting place for all of my children, but today, I celebrate Nella. Nella, I love you, and I will never stop exhausting my energy and using my love to help support you and make the world recognize your incredible gifts.

******

And parents sharing “10 Things We’ve Learned” raising a child with Down syndrome…I’m over at BabyZone as well today for World Down Syndrome Awareness Day.

Last weekend, I headed north to speak at the Syracuse Gigi’s Playhouse Gala.  As I expected, “speaking engagement” quickly transformed to soul experience, and I put another pin on the map of places I’ve been that have changed my heart.

There was snow for a little boy who had never seen it (he only liked looking at it from the inside)…

…and the warmest welcome from two friends I made last year at the I Heart Faces Conference.  Two years ago, Heather Rodriguez  listened to a little voice in her heart that said she could make things happen in the Down syndrome community even though she has no family members with Down syndrome.  She got involved with Syracuse Gigi’s Playhouse, started taking photos for them, made lasting friendships with many of the families there and joined their board this year.  I loved watching her at Gigi’s.  She hugs and high fives and treats everyone around her the same.  And her friends with Down syndrome know it.  They know she doesn’t water down her hilarious slightly inappropriate jokes for them, and they love her for it.

Jennifer Tonetti-Spellman (dude, her photography!) drove 4.5 hours from the city for a cozy sleepover that served as the perfect prequel to Friday and Saturday night’s festivities.

photo courtesy of Jennifer Tonetti-Spellman

Gigi’s Playhouse is a series of Down syndrome achievement centers that serve both children and adults and provide educational and therapeutic programs at no charge to families.  There are currently 17 Gigi’s Playhouse facilities–16 in the United States and an International Center in Mexico.

I walked into the pre-gala party at Gigi’s in Syracuse Friday night and was immediately overwhelmed by the support and community present. So many families showed up, both those who had a loved one with Down syndrome and those who volunteer and bring their children to build an inclusive community.  And Kayla, the assistant site coordinator who has a part time paid position at Gigi’s, blew me away with her professionalism and pride in her job. She gave me a tour, brought me a water, showed me where I could hang my coat, watched Dash while I took pictures and quickly jumped in when I asked permission to post a photo: “Oh, they all signed media photo release forms.  You’re fine.”  She casually mentioned that she has Down syndrome and that she also has her driver’s permit, and though that fact shouldn’t be a big deal, it is to me. I’m only four years into this. “You’re very inspiring, Kayla,” I told her.  “Thank you.  I can’t wait until you meet my mom and dad,” she answered.

This place is building such a supportive community, and the energy that filled those walls Friday night could have illuminated a small country.  I watched while parents hugged each other and made themselves at home while kids ran to play in their safe place with both familiar and new friends.  I saw Mila jump into the ball pit, watched a buddy help Quinn climb the rock wall and smiled when Ava tucked some dolls in her shirt to nurse her babies just like Nella does.  I hugged Carrie who felt like an old friend, and when we realized we share a mutual friend at the NDSS, we took a selfie and texted it to her.  “I wish I was there,” my friend texted back.  I listened as Gigi’s enthusiasts told me about all the programs they are running–the tutoring, the yoga, the literacy, the sign language, the dance.  It’s their very own Field of Dreams.  If you build it, they will come.

And the Gigi’s Playhouse Gala?
Where there is dancing, there is love.

The love was big.  You don’t forget nights like that.  Dance moves like that.  Hugs like that.

(gala photos, courtesy of Heather Rodriguez)

And a little part of what I shared, something I’ve been meaning to write.  A letter to my old self.

Dear Old Me,

You’re scared, aren’t you?  I get it, and it’s okay.  I know you love her, and you didn’t expect that upon kissing those cheeks for the first time, you’d also have to carry the weight that she’s going to have a lifetime of challenges.  I know you want to take them all away from her, but you can’t.  This isn’t exactly what you had planned, but sooner or later you’re going to realize that you can’t plan everything, and those unexpected things in life often turn out to be the best things that ever happened.  

Forget about what you think you know about Down syndrome and start thinking about what you want to know about Down syndrome.  The future that you hope she has.  Never lose sight of that.  In fact, find other people who have that same future in mind.  Join forces with them.  Make it happen.

I know you want to run home and shut the doors right now–close yourself off with that baby and pretend the rest of the world doesn’t exist.  Take your time.  But know that the world needs you and your voice, and the world needs Nella and her friends.  You’re not alone.  You’re going to meet people soon who will amaze you–people who are building roads where roads have never been.  Learn from them.  Help them.

And see that ceiling above you?  Kick it out.  She’ll never fly above it if you don’t.

You’re going to be fine.  Nella is going to be fine.  And no, it won’t always be easy.  But what’s really easy in life?  Certainly not the most beautiful things.  

To everyone who is part of this community and a part of this incredible story we all are telling (that means you and you and you)–what a privilege it is to do this with you, to learn from all of you, to be inspired by your drive and your ideas and the way you are loving people and knocking out that ceiling.

And sometimes, a good church “Amen” is how it needs to end.

Amen, amen.

Thank you, Syracuse, for inspiring me. You’ve built something amazing.

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Congratulations to the Great American Cookies $50 gift card winner, (generated by random.org) Comment #17: The House Wife Rookie: “Pink and her rendition of the timeless “somewhere over the rainbow” truly moved me to tears.  A very special moment, indeed.”

Please e-mail your contact info with “Giveaway winner” in the subject line to kellehamptonblog@comcast.net.  Thank you!

We happily welcome Great American Cookies to Enjoying the Small Things.  They provided the delicious goodies for this year’s Pajama Glama Oscar and are sponsoring this post. 

I don’t get into Superbowl parties, I couldn’t really keep up with the Olympics this year, I haven’t seen one episode of House of Cards yet, but the Oscars?  Oh, I do the Oscars–celebrating the golden glutes of that svelte little man with a pajama party for nine years now. (2012 Pajama Glama and 2013 when Dash was my itty bitty Oscar date)

It started years ago with me and Heidi, both kidless and starry-eyed for Hollywood glamour, and over the years gradually grew into something more mom-ish.  We sit in our pajamas; throw some costume jewelry on for kicks; eat comfort food; root for the two movies we actually had time to watch this year; make lists of the ones we need to see; point out good hair, good hemlines, good Botox, good speeches and let the little girls have fun with us where they can.  Click-clack shoes, rhinestones and adorable misspelled lists of the best dresses: “sparcley silver” and “long blue” (Oh, Lupita, Lupita! You so win!).

Our Oscar spread this year:
Great American Cookies has a NEW! Fudge Brownie made with M&M’s ® that became the star of our dessert table.  I admit I had three (we cut them into dainty halves), and I’d like to thank the Academy for their inspiration.  The brownies are super chewy and chocolaty, and the tiny M&M’s ® are the perfect topping–not too big or crunchy, but just right.  Plus, they’re pretty.  I mean, who doesn’t love a rainbow brownie?

We kept it simple–popcorn and itty bitty milk glasses to complement the sweets.

The little girls were most definitely happy.

The rest of the party followed suit for a star-studded evening:

We were honored to have a pregnant Will Ferrell at our party.  His baby ‘gonna be so cute.

Now to break down the show:

Ellen
I love everything she does.  I like that, unlike many other comedians, she’s never mean or disparaging to people for the sake of comedy.  I loved the pizza she ordered and the we’re-just-regular-folks kind of feeling she brings to the Oscars while still respecting the art and glamour of the tradition.  And I liked her sparkly tux.

Best Dressed
5. Charlize Theron:  Classic and beautiful.
4. Jennifer Lawrence:  Red siren. Loved that little structured peplum thing on the hips. Love that she tripped and fell again this year because I’m a tripper and a faller, and she pulls it off so gracefully and brings a refreshing realness to the Oscars.  She bridges the gap between beautiful women walking the red carpet and moms sitting in their pajamas watching the red carpet.  And she does it so good.
3. Kerry Washington:  Pregnant women win.  Always.  It’s the rule.  A glowing, flowing wonderful representation of motherhood in all its beauty at the Academy Awards.
2. Amy Adams: My friends said “too simple,” but I loved her dress.  I thought she looked regal and confident, and I loved the structured details of the dress against its simplicity.  Love that she skipped a necklace and a bunch of arm candy for some simple dangle earrings.
1. Lupita Nyong’o  It was fresh, it was flowy, it was ethereal, it was sexy.  Her dress was like cotton candy but sophisticated.  The pleats, the color, the sexy V neckline.  Holy, holy.  

Speeches
3.  Matthew McConaughey:  Probably scripted and memorized to boot but still heartfelt and delivered so well.  Loved his recognition of God and heroes.
2.  Jared Leto:  The way he thanked his mama and all her hard work in being a single mama and teaching her boys to “be creative, work hard and do something special.”  Boys who love their mamas for the win.
1.  Lupita Nyong’o: Her smile. Her poetic words.  The way she could barely breathe while she spoke.  And I loved: “When I look down at this golden statue, may it remind me and every little child that no matter where you’re from, your dreams are valid.”  And then she swished away in her cotton candy dress.

At one point in the show, Ellen grabbed a bunch of stars and took a selfie.  She posted it to Twitter and made a note in the show that she wanted to break the record for most retweeted photo in 24 hours.  It happened with over 2.7 million retweets today.

“God, that’s kind of sad,” I said last night.  “We’re so celebrity-obsessed, national disasters and inspirational stories can’t compete with a photo of a bunch of stars at an award show.”  Maybe that’s true, but I decided to put High Horse back in the stable and take Silver Lining out for a ride.  There is something about the movies and Hollywood that draws us in and captivates us.  Movies helped keep dreams alive during the Great Depression and continue to provide a safe escape for so many people who are hurting today.  And many of this year’s nominated films hold important stories–things to make you think.  I’m glad we have movies and only hope big stars can use their influence to make good things happen in the world.  Ellen’s doing mighty fine with that.

With that said, my post-Oscar must-see list:  Dallas Buyers Club (like, this week), 12 Years a Slave and American Hustle.  And Her for the second time because I loved it that much.

Now, for some goodies for you.  Great American Cookies provided such wonderful treats for our party, and they’re extending their generosity to our readers.  In addition to their NEW! Fudge Brownie made with M&M’s ®, Great American Cookies offers an extensive lineup of delicious cookies, Cookie Cakes, brownies and other treats (Lainey’s classmates bring in their cookie cakes for birthday treats a lot, and they’re a huge hit).  One reader will receive a $50 gift certificate from Great American Cookies.  Just leave a comment with some of your Oscar favorites from last night or a great party tradition you’ve created on your own, and one comment will be selected and announced in Wednesday’s post.  Comments will be closed Tuesday evening at 9 p.m. EST.  

More of Great American Cookies at their Facebook page, on Twitter and on Instagram.

Thank you Great American Cookies for partnering with us, and thank you readers for supporting the sponsors that help support this blog and our family.

Finishing pulling some images together from this past weekend. I can’t wait to share more about our time in Syracuse.