Enjoying the Small Things

Enjoying the Small Things

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a birthday post

January 22, 2012 By Kelle

It is easy to say “two years ago.” Two years isn’t a very long time, and the memories of her welcome, for the most part, are still clear. I remember what it feels like to cry so desperately that relief breaths can only come in short, stomach-jerking gasps. And, days later, how I listened to this song and this song, clutching to every word, praying it would be true–that we would be okay.

In the first two years, we talk about then and now, the difference between these two abstract eras distinct and concrete. But as the bridge between these two places slowly grows, the distinction likewise fades. A moment that changed me forever, yes; but the outcome a product of what was there all along. I had the love. I had the strength and courage. I was so capable of being her mama. I just didn’t know it.

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I think about that a lot–how I am the same person today as I was the day before she was born even though it doesn’t seem true. How I am the same person I am today as I will be thirty years from now. What stones will be unturned in life–whether victories or challenges–to reveal more love, more courage, more understanding? We evolve.

As Cher would say, if I could turn back time…

I would take that little body and hold it closer, breathe her in, study her long fingers and smooth pink cheeks and let my soul do what it begged to do–to connect with its counterpart and fully accept her as the gift we needed. I would wrap my body around her, smell her, kiss her, draw her right into the place she needed to be and let her feel a purer love. I would trace her features with wonder rather than apprehension and know that her tired little frown would evolve…just like we would.

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And while this day represents so much more, really it’s about a little girl who was born. A daughter who came to be, a sister who arrived, a baby like any other who just needed to be loved.

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Oh, how she is loved.

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This morning she woke up early–early enough I had to check the clock to make sure it wasn’t still the middle of the night. I heard the rattle of the crib railing and her happy whispers, and I finally reluctantly climbed out to welcome the day with her. I feel her low muscle tone most when I pull her from the crib. There is no resistance, no independent efforts to stand tall and pull her weight, and I love that. Every ounce of her sinks into my grasp as I lift her and pull her close, her bottom settling into my forearm, her hands touching my face, her chest fully dropping into my shoulder. I remember pregnancy yoga classes and how long it took the instructor to guide us into this kind of limber physical release. “Let go of your shoulders. Imagine your chest is dropping. Now release your leg muscles, your thighs, your calves…let go of it all. Submit to the peace in your inner soul,” she’d exhort and even after all those steps, there was still a part I couldn’t let go. After that experience I realize low muscle tone is hardly a disability. It’s an enviable ability…to just be.

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We walked out into the dark living room, her head still resting on my shoulder. “Is it your birthday?” I whispered. She pulled her head up and smiled. “Yeah,” she answered. I thought about exactly where I was two years ago. Counting contractions. Waiting for the doctor to call. Knowing I’d finally get to meet my daughter.

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It feels good to skip over the rest–to look back at the dark and difficult moments and stop right when it hurts to run and hold her. Like getting through the awful suspenseful parts in a movie you’ve already seen–not so bad when you know it ends well.

It’s two years later–not long, but long enough to know…it ends well.

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No matter what happens, it ends well because life is bigger than scripts and sets and how-it’s-supposed-to-bes.

And before I quote another singer–God forbid, Richard Marx–let me cut to the chase.

Dude, these two years have been grand. And we love her. We love our children with a deeper, purer love that is so infinite, it cannot be shaken.

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Happy Birthday, Nella.

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You are everything we ever wanted. I only wish we would have been cool enough to know it then.

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We know now. We love you so much, Birthday Girl. And we celebrate you today.

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And thank you, little girl, for my birth day–what gift that day, those moments, those tears will always be.

“Awareness born of love is the only force that can bring healing and renewal. Out of our love for another person, we become more willing to let our old identities wither and fall away, and enter a dark night of the soul, so that we may stand naked once more in the presence of the great mystery that lies at the core of our being. This is how love ripens us -by warming us from within, inspiring us to break out of our shell, and lighting our way through the dark passage to new birth.” -John Welwood

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Filed Under: Designer Genes, Favorites 427 Comments

For $40,0000.

January 17, 2012 By Kelle

A little over $40,000 to go.
We can do this.

Please join us in spreading the word. Every child is important. Every child deserves a promising future.

Help us in our 2 for 2 initiative. $200,000 to support the National Down Syndrome Society in honor of Nella’s two sweet years of life. Please share our video and our message–help us raise awareness for a more tolerant society that embraces and celebrates differences.

Visit Nella’s 2 for 2 Fund to donate.

Thank you to everyone who shared videos. I wish I could have used them all. I have saved them and hope to use them in the future. Your children are so beautiful, and your pride and willingness to share their gifts with the world is so endearing. Thank you.

Filed Under: Designer Genes 152 Comments

2 for 2: Pay it Forward

January 10, 2012 By Kelle

I’ve been trying to write this post all day. I’ve promised myself that I will never write something that’s important to me unless I really feel it. Well, this is important.

While the easy current of everyday life may make us forget about Down syndrome a lot, we are two weeks away from the anniversary of a day when the idea of Down syndrome weighed so heavily on me, I lost myself for a moment.

The word anniversary just doesn’t do that day justice now. It’s a celebration. Of her. Of how we’ve changed. Of all the beauty in the world we overlooked for so long.

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I was recently asked what my favorite post from 2011 was. I thought about it for a moment, scanning through memories of old posts–personal things, funny things, happy things–and then it dawned on me. It’s the post I wrote to launch Nella’s ONEder Fund last year. Why? Because I learned from it. I was nervous to set a $15,000 goal, thinking we wouldn’t get there. And the impact that followed? Over $100,000…because of you. How much I learned those weeks–about the other families in our D.S. community, about the generosity of people I had never met, about the magnitude of effect we all possess.

We’re doing it again–asking for your help, setting out to remember January 22, 2010 in a way that will help make life better for anyone who possesses the magic of the extra 21st chromosome.

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This year, we are launching the 2 for 2 Fund–hoping to raise $200,000 by the time Nella turns two. We’re more than half way there, thanks to you. A little more than $75,000 to go.

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Every dollar given to the 2 for 2 Fund supports the NDSS whose mission is to to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.

Things are changing in our society, but it’s only because people are working hard to change stereotypes, to recognize abilities and to tear down walls of discrimination.

I come to you as a mama.

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What does any mom want for her child? Hope. Hope for a successful future, happiness, the opportunity to fulfill dreams.

And when you’re told your child has Down syndrome, for a moment, you think you have to give all that up.

Thanks to the NDSS and many others that join our cause, there is hope. We want the world to know that people with Down syndrome are doing great things with their wild and precious lives.

Just ask Leah.

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Or Michael.

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Talk to Jon about adventure.

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Or Josh & Nicole about love.

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I am ecstatic about the potential for what our kids will do in twenty years. What will the future hold for Nella’s friends?

Like Millie.

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And Drew.

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And Sophia Rose.

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And Kayla who, by the way, can read. Big words in big books. And she can write. Because Sister is amazing.

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I know these families. I’ve shared e-mails and phone calls and have met many of these kids and their parents, and all we want is for the world to see what we see.

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That Lily is just like any other kid.

And George? Well, ask his siblings. One of them recently told his mom, “Mom, does it ever bother you that everyone in our family loves George best instead of you?”

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Perhaps the best spokespeople of all for these kids are their brothers and sisters.

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Kate and her brother

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Nora and her family

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I don’t want anyone to ever tell me that my child’s dreams are limited because of an extra chromosome.

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Aaron

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Alex

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Sarah & Levi

And so I’m asking you for something. For Nella. For our family. For all these beautiful capable children and their families and thousands of others.

Please give back. If you are a regular reader of this blog, here’s an opportunity to pay for a subscription. Whatever you can give. A whole ‘lotta $5 and $10 donations went a long way last year. We can do it again.

For her birthday, we ask you to help us make a home run. 2 for 2, Baby.

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Join with us in raising awareness and creating more opportunities for individuals, more hope for families.

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Share on your Facebook, e-mail it, spread the word.

We are sincerely grateful as are the hundreds of other families who celebrate their own little magic.

Two years ago, right now? I had no idea what was in store. How could I ever had known how much joy that baby was going to bring us? I want the world to know that joy. Help me do it.

Two Weeks. Two Hundred Thousand Dollars. We can do it.

Click on any of the links to the 2 for 2 Fund in this post, click on the 2 for 2 banner at the top of the site, or click on the 2 for 2 logo in the sidebar to give.

Thank you, thank you.

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Filed Under: Designer Genes 238 Comments

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