Enjoying the Small Things

Enjoying the Small Things

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It Begins with Awareness.

January 14, 2011 By Kelle

Today’s post is short but meaningful to me and thousands of others of families. Please watch.

Thank you to everyone who sent in videos and thank you for joining with us to share the important message of acceptance and celebration. And thank you to my dear friend who helped me put this together.

If you can’t view the video, please click HERE.

Donate HERE.

Filed Under: Designer Genes 385 Comments

Pay It Forward…Rock the ONEder Fund.

January 8, 2011 By Kelle

In two weeks, we will celebrate an epic day.

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And my heart is twisting in all sorts of beautiful ways just thinking about it, but mostly it is throbbing with love.

Any attempt at threading words to just how funny, how spirited, how healing her existence is…well it seems so small and unworthy. But, I’m used to that. Her sister’s had me slayed from the start.

I can tell you this though.

I have changed. My eyes have been opened to the broad spectrum of beauty, the value of uniqueness and the amazement of the common thread that binds us all regardless of the color of our skin or the makeup of our chromosomes.

How could I not have been aware of their magic?

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I am grateful for the pain that propelled me forward this year for without it, I wouldn’t have known the joy of this place.

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When I sat down to write this post earlier this afternoon, I intended to make this about Nella. But, I’ve learned something more this year. I’ve learned to look beyond. While yes, the rawness of loving my own child and imagining her almond eyed, milky-cheeked, tiny-toothed grin on the face of every other child with Down syndrome is what initiated my purpose in this new world, it has become more. I care not just because my daughter personally connects me to this greater world but because I have learned to see their hearts, their capabilities, their spirit, their determination, their love.

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And I want you to see it too. Beyond Nella. The faces of these children brighten the worlds of so many lucky families every day. And as I checked my e-mail earlier this evening after a quick Facebook photo all-call, tears rolled down my cheeks at the response. My e-mail alert chirped a continuous rhythm as pictures rolled in, and I couldn’t determine what was more powerful–the faces of these beautiful babies or the words you attached to them in a desperate plea to express a fraction of how you feel.

The love of our lives. She changed me. Our joy boy. The heart of our family.

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So, here’s the deal.

I’m going to ask you for something. And it’s really important to me. To a lot of people.

I’m going to ask you to think about what you’ve taken from this space this year. I have felt incredibly inspired by not only the feeling of community here but by this productive push toward good that arises simply from the understanding of the power of a group of people connected in a small way on the Interweb but, more importantly, in a much greater way within this vast world. And so, I’m asking you again, have you gained anything from visiting this space this year? A smile, a thought, a connection, the encouragement to dig deeper or let your own voice speak out. If you have, I’m asking you to give back today. Please, pay it forward.

In honor of our girl’s first year, we are asking you to give back to her. And the 400,000 other individuals living with Down syndrome in the United States alone.

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The mission of the NDSS is to create a culture that fully accepts and includes individuals with Down syndrome.

Let me say that more clearly. The mission of the NDSS is to create a culture that fully accepts and includes our little girl. Our Nella.

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Last year, the NDSS helped Annie Clancy, a Connecticut high school student, get closer to her dream of becoming a clothing designer when they gave her the once-in-a-lifetime chance to join designer Anya Cole in her studio to learn how to design and produce clothing. Without the NDSS, Annie wouldn’t have known what it felt like to strut her fabulousness down the runway of a fashion show in a posh SoHo loft.

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Or how about Sara Wolff? A skilled motivational speaker, she serves on the NDSS Board of Directors and actively promotes Down syndrome awareness and understanding through personal appearances and inspirational speeches to educators, employers and community professionals. She is loving what she’s doing. She’s doing something amazing with her one wild and precious life. Not to mention, she got to meet Barbara Walters and Meredith Viera which is more than I can say. As Sara says, “I feel good knowing I can inspire people and make a difference.”

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I want my little girl to have these opportunities, and I’m just one of many mamas who share this dream.

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I’ve set a scary goal. $15,000, People. (Actually, I’m editing this after 12 hours into the fundraiser, I’m doubling it, yikes! $30,000.) Editing this AGAIN about 2 days into it. $47,000. Yup, $47 grand for 47 grand chromosomes!) Alright, I’m back. 4 days, and our goal is now $63,000. That’s 21 x 3. Three beautiful little 21st chromosomes, that’s what. And I’m a little nervous about it. But, I believe you care. I believe we can make a difference together. If every Follower–a fraction of readers–gave only $5, we could raise $45,000. Forty Five Thousand Dollars to help change the world into a place that sees the beauty and potential of the magic of these amazing individuals.

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I want this life-changing year to mean more. I want to hold hands with my family in two weeks and know, when we sing “Happy Birthday Dear Nella” and watch her pat her tiny palms into sweet frosting, that something greater is in store.

For everyone.

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Please. Give Nella a birthday gift. Help her give back to her friends.

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If a magazine costs $5, think of how you’ll feel if you spent that instead right here.

Pay it forward. Help us give Nella a very happy birthday.

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Nella’s shirt and sweater used to be dresses. They were her coming-home-from-the-hospital outfit. Sweater, crocheted by my mama

Giving is easy. Click on any link to Nella’s ONEder Fund on this page (the easiest being the large banner at the top of the blog which will remain until Nella’s birthday.)

Spread the word. E-mail it. Facebook it. Tweet it. Blog it.
Together, I’m certain we can move mountains.

Give $5. Or give more. But know, you are appreciated and you are making a difference.

Thank you for your support, your love, your joining with us to make something grand of our one wild and precious life.

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And thank you to all the mamas out there who shared their magically enhanced little beauties with me tonight.

Filed Under: Designer Genes, Favorites 532 Comments

Grays and Colors

November 3, 2010 By Kelle

I am an eternal optimist, but I like to think, as a good persuasive argument paying recognition to an antithesis confirms even more the intended point, my optimistic philosophy is likewise strengthened when I give room for what can sometimes be a disheartening reality. I try to balance my self-reflection somewhere between laziness and annoying hyperstimulation, so I hope this comes out as I intend…somewhere in the comfortable waters of “I’m treading, I’m figuring this out, I’m doing what works for me.”

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I see the good and talk about the good and my outlook fits me like a well-tailored suit, allowing me to use my strengths and yet paving the way for growth from the not-so-pretty times. Likewise, I know and love and respect others with different philosophies and have had discerning moments of clarity from their sometimes more dismal perspectives. Because sometimes life is hard and reality does suck and ignoring that fact does not give room for the progress and production that can come from those moments.

While progress comes most naturally for me from expressing gratitude and painting strokes of vibrant color where I can, when more painful moments come–and they do–I want to pay appropriate attention to what they can teach me. Sometimes when anxiety or discomfort or that throat-constricting sadness arrives, I want to heave it along like a hot potato that doesn’t belong amongst the yellows and ceruleans I aim to create. But gray has a beauty all in its own. Gray is purposeful too, and while I may instinctively attempt to quickly fold it and stash it away, I am learning to first run my hands along its threads and find the beauty in cold and calm as well as warm and spirited.

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With that unnecessarily long disclaimer, I think it is only fair I pull out the gray I folded up earlier this week and let it have its moment too.

My dad tried to keep it from me, but he finally felt he needed to share a rough week he had at work last week. He spent every day visiting a 50-year-old woman who had come to the hospital from a group home, and her health slowly deteriorated until she died on Friday. She was alone and incoherent. She had Down syndrome. My dad said he spent an inordinate amount of time with her. She became a favorite and he spent many hours sitting with her, talking with her, even though she did not understand. He gave her a stuffed animal. But still, she was only 50. Alone, unresponsive, and she did not make it.

And here’s the deal. Life expectancy still scares the hell out of me. I know things have changed and individuals with Down syndrome are living much longer now. I am hopeful, and today is really all that matters–and today is good–but somewhere there is a part of us that hopes every day that, no matter what, our kids will outlive us. It’s a parent’s greatest unwritten plea. And knowing that I have scientific data that increases the likelihood that I will hold her hand before she holds mine made me really, really sad this past weekend.

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I held the hot potato, I felt the burns, I cried and used it to fuel me. I am at peace now and am grateful for our very beautiful right now. I will not dwell on tomorrow, for it is unknown and filled with voids. Today is quite the contrary. Today is good. And I write not for sympathy or to ignite a discussion of optimism vs. pessimism but simply to slap a valid antithesis among “enjoying the small things.” It makes the small things even better.

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Which is why I’m completely geeked about my spontaneous decision to redo my bathroom this weekend on a very tight budget. The challenge thrills me. And while I actually considered painting the walls a languid gray–because gray is good too–I have settled for a vibrant, crazy aubergine. To thine own self be true.

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Life is sometimes hard. Reality sometimes sucks. But most of the time? Most of the time, it’s amazing.

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Like these wicked cute reversible bibs? Brooklyn Bib Shop is giving away a quilted bib/burp cloth set to a random commenter on today’s post. But wait…

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With the yin and yang of discomfort and joy, I want to know more. While I’ve made peace with my gray this week and am finding joy in a can of Inkberry #73RB, tell me briefly…what’s your “gray” this week, be it large or small…and what little happy is bringing you color?

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Filed Under: Designer Genes, Favorites 1,045 Comments

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