Six Years

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I went to pull the big red bow off the front of the green car the other day. It’s been several weeks since Christmas and—to be honest—I’m surprised it hasn’t fallen off yet, especially with the way Dash drives that thing. But here it is, late January, and the bow is still hanging on as the car turns another corner, rolls across another sidewalk groove, lands in the garage for another night of recharging, red glitter shedding all the way. It’s faded a bit in the sun, but the bow on the car still whispers “present.”

“Don’t take it off!” Lainey yelled, catching me just in time. “Leave it on. It reminds me of Christmas.”

 

It’s been six years today since Nella was born, and I guess you could say I still can’t take off the bow.

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Six years old seemed so far away when I could barely comprehend the length of space between “She has Down syndrome” and “You can take her home now,” but I’ve realized in parenting that nothing is far away and time is an elusive and magical concept. How else do you explain that yesterday I dropped off a clingy, crying shy girl to kindergarten, and today she was a third-grader who barely turned back to say goodbye?

I do know that six years old was something I didn’t want to think about when Nella was born because I thought it would be hard. So I told myself to take one day at a time, to love as much as I could love in one day. To take any sadness, any happiness, any worries and all celebrations–but only one day’s worth–and make that my daily job. Because I can handle one day.

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Truth is, it does get harder–for all kids. But that one day approach has served us well for every member of our family. I mean, look at us. We’re here. Alive! Frosting cupcakes!

I know how to handle one day. I wake up and listen to my kids and see what they need and get them to school and check their papers and show up for an appointment and give a pep talk and say I’m sorry and watch them play and hold their hands and tuck them in and end every day with Thank You and Onward and We Did It.

What I didn’t know though was how little I’d need to remind myself “One Day at a Time.” I’ve been a little preoccupied the past six years with this: (pssst: this is the part where I flood the post with my favorite pictures because birthday and sap.)

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You know what life does after unexpected things? It returns to its regularly scheduled program. Mine includes taking cupcakes up to a preschool class where friends will sing “Happy Birthday” to a girl in a yellow dress. She’s six. And she’s mine.

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As for what’s beyond six? Possibility and promise, one sweet sliver of a day at a time.

Happy Birthday, Nella. You are loved.

Slough Your Stuff

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Hellooooo! I’m back from my blog break which included this scene:

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And this one:

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And this one:

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Claire Bidwell Smith and I hosted our second Spark Retreat which, since I’m typing this waiting for a clay face mask to set in, I’ll translate in beauty terms. At our retreats, we slough our stuff–emotionally exfoliate, if you will, through writing. And then we deep condition the parts of us that don’t always get a lot of attention–through connecting with other women and eating really nourishing food and yoga and meditation and lots of “me toos.” The result is everyone leaves with the reserves filled up–takes them home to their families and their jobs and most important, themselves. (We had a spot open up for our November 5-8 retreat. Email sparkretreats@gmail.com if you’re interested!)

Another result? I’m eating jicama sticks and drinking coconut water right now, deciding on how I’m going to mix the bean sprouts with the bok choy for dinner tonight. That is because our retreat chef not only cooked us the most wonderful meals but inspired us all with his passion for food and health and taking good care of ourselves. I love braiding new inspiration and things I learn into what already works for us which means I’ll still indulge in pizza and I will not feel awful when I reach for a box of macaroni. But I will aim for the good stuff, and I’ll have fun doing it.

Feels good to be home.

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Also, tomorrow starts Down Syndrome Awareness Month, and we have a fun way for you to learn more about the hopes of families and opportunities for people with Down syndrome. While post secondary education is one path of many, it can be a powerful tool in bridging the gap between graduating high school and creating a fulfilling life in adulthood for people with Down syndrome. And, it’s a dream many parents assume they have to give up when they are given a diagnosis for their child. We want families to visualize the future they want, and to let those dreams guide their journey. Beginning tomorrow on Ruby’s Rainbow Facebook and Instagram accounts, you can follow the adventures of Ruby and Nella as they head to college. Candid on-campus moments, hilarious captions and fun facts about some of the amazing educational programs currently available to students with intellectual disabilities will be shared as well as perspective from other students, parents and volunteers.

These two have big dreams.

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Follow them this month through #rubyandnellagotocollege hashtag.

And now I have no idea what to do with my bok choy. I have some Googling to do.

Happy day.

Changing the Face of Beauty

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A friend told me to watch this short Eunice Shriver documentary right after it aired during Special Olympics, and I finally got around to it today thanks to arriving in school car line 30 minutes early. I’d like to recommend this video for the following people:

1. People who ever dreamed of making a difference.
2. People who love someone with special needs.
3. People who need a kick in the pants to get something done.
4. People who need to be reminded how important it feels to belong.
5. People.

That’s all of you, so come on, click-click.

 

One of the great follow-up blessings to having a child with Down syndrome is meeting amazing people within this community. I’ll be honest, I didn’t want to meet them at first. Nope, we’re good. We have all the friends we need, thank you. I don’t do clubs, move along.

But then I realized these people don’t do clubs either. I was the one who pigeon-holed them there. Their amazingness is not confined to the special needs community. No, they’re just world changers who happen to have a kid with special needs. What they want is the same thing I want–the same thing we all want, so let’s move this train together, shall we?

Friday, I told you about what Ruby’s Rainbow has been doing (did you see it?)–a mission that started with the idea that we could ask people for money to support a dream that was unheard of 20 years ago–people with Down syndrome, going to college. It happened, and it’s happening.

And then I spent the entire weekend with my friend Katie, a woman whose passion and drive is so palpable, it possesses its own magnetic field. We talked a lot this weekend about the future of our kids, about the world we want them to live in.

Katie started Changing the Face of Beauty shortly after her daughter Grace was born in efforts to encourage advertisers to include people with disabilities, one of the largest minority groups in the world yet underrepresented in the media. Here’s the deal. We know what beauty means, and we tell ourselves and our children that magazines and billboards and clothing advertisements should not be used as standards in measuring our worth. But it’s hard to convince a teenager of that. And in a media-saturated world, we need more imagery that shouts “We See You! You Belong!” to the 13% of school children who have a disability.

So you know what Katie does? She asks for what she wants. On phone calls, in e-mails, in tweets and texts. Daily reaching out to corporations, marketing firms, P.R. teams, brand reps, anyone who will listen. Include our kids. Represent them all. 

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And they’re listening!

I couldn’t help but think of Katie, watching the Eunice Shriver film, hearing that President Kennedy assigned an entire team to deal with Eunice’s big ideas. “When Eunice called, (President Kennedy) would say ‘Give her what she wants because otherwise, we’ll never hear the end of it.'”

I learned so much this weekend about asking for what you want, about launching ideas into the world, about fearlessly going after a dream. I’m so often far too afraid of the word “no.” I tell my kids no all the time, and they don’t seem to care. Time to take a lesson!

Loretta Claiborne said of Eunice: “Here’s this woman–anger and fire. But she was fearless.”

And all the people said…Amen.

 

A little more from the launch party for GapKids’ new line with Ellen, a collaboration event with Changing the Face of Beauty.

You should have seen these kids’ faces–all of them. So proud. One group, all the same. Someday, this will be no big deal. But to several moms there, this was so much more. A “We see you!” hug and a growing promise of a more inclusive tomorrow. After one little girl walked beside new friends, smiling and waving through the cheering crowd, I hugged her mom. Through tears, she whispered, “This was one of the best moments of my entire life.”

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We are thrilled with the initiative Gap took and the Lincold Rd. Gap Kids staff who sent an important message that was seen by so many families. It benefits everyone! We love Gap and are looking forward to their continued support in representing the many faces of beauty. (Pssst, Gap…big print ads, please! Storefront signs! Oh, how beautiful that would be!)

A short video of the event (check out Miss Kayla at the end who worked the crowd!):

We have big dreams for this one.

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The same dream for all of them…to contribute to this world in ways that make it better.

“Let me win. But if I cannot win, let me brave in the attempt.” ~Eunice Shriver

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Now if you forgot to watch that short film at the top, scroll back up. You’ll be glad you did.