Life soars on

April 4, 2014

Kate was my second-born — and this week, we welcomed our fourth miracle, her second little sister into the world.

After Kate’s Down syndrome diagnosis at birth, I wondered what the future would hold for our family. Would we have more children? I remember googling that very topic and scrolling through forums the first weeks after she was born. Would life go on?

Little did I know that life wouldn’t just go on — it would soar.

Kate would become, in many ways, just one of the bunch. Another colorful fabric in the tapestry of unique individuals in our family — while at the same time, also giving her siblings an incredibly special gift in being their sister.

She loved holding her baby sister for the first time the other night and when I saw this pic I thought to myself: if I could have only imagined this image the day she was born.

The one I held with tears and fears the day she was born now gently cares for her younger siblings. Adores her older brother. Rocks her baby dolls and her skinny jeans.

Number four is cradled in my crossed legs cooing. And I am filled with the same awe that I’ve had since my first was born.

Life is so precious.

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Today is World Down Syndrome Day!

A day that takes place on 3/21 every year, representing the 3 copies of chromosome 21, which is unique to people with Down syndrome. Before Kate was born, I would have barely noticed this day — but today, I celebrate it with a joyful heart.

Whether or not you know someone with Down syndrome, there are many ways to celebrate with the Down syndrome community. After all, when it comes to love, acceptance and awareness of our differences, we’re all in this together.

Here are some ways to celebrate:

1. Share your favorite blogs, videos and stories of families with Down syndrome or other special needs on Facebook, Twitter, by email, or wherever you share.

Here are a few of my favorites: Dear Future Mom (a BEAUTIFUL video created by an Italian ad agency that went viral last week — get your tissues ready), Enjoying the Small Things (a blog that I discovered the day Kate was born that truly gave me comfort in those first few weeks), Down Syndrome: A Year of Grief and Joy (an honest and heartfelt article published by ABC News this month, written by my friend and new mama to a baby with DS, Genevieve Shaw Brown).

Why is this important? For many parents who receive a prenatal Down syndrome diagnosis, they feel scared and alone — as they have never even met a person with Down syndrome, let alone understand what the diagnosis means. The more we share the reality of Down syndrome, the less we are scared of it.

2. Take time to mindfully teach your children about compassion -- and there are so many ways to do that. Expose your children to people who are different than them, talk to them about our differences while emphasizing what we have in common — and set an example by embracing those that others may be weary of. Also, compassion and kindness are examples set not just in how we treat people with “special needs” — but in how we treat everyone: the Target cashier who is going slow, the person who cuts us off in traffic, the coach who doesn’t play our child enough.

3. Celebrate your own special talents. Kate may have Down syndrome — and while many choose to look at this as a disability, I see it as an incredible strength. Some things are challenging for her — while other things come much more easily for her. The same goes for my other two children. We all have different abilities — and today is a day to celebrate those.

4. Get involved in your local Down syndrome community. In a rut? Looking for a way to volunteer and change your life? Find the local Down syndrome society in your area. Volunteer. Help. Make friends. And realize first-hand how we’re all so much more alike than we realize.

“I can’t believe that God put us on this earth to be ordinary.” – Lou Holtz
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World Down Syndrome Day is Friday.

Had I heard about this day before having a daughter with Down syndrome, I may have overlooked it, ignored it, smiled and walked passed it. It certainly wouldn’t have meant as much as it does now, of course. And that’s expected — we all tend to gravitate toward the things that we’ve had personal experience with.

But since having Kate, I’ve realized that, truly, this day is for everyone and anyone — whether or not you have or love someone who has Down syndrome.

The heart of this day is for anyone who is or loves someone who is human.

It’s World We’re-All-Created-Equal Day.

World We-All-Matter Day.

It’s World Don’t-Count-Me-Out Day and World I’ll-Surprise-The-Heck-Out-Of-You Day.

It’s World Different-Is-Great Day. World Be-Yourself Day.

It’s World We-All-Have-Special-Needs Day. And World Wouldn’t-It-Be-Boring-If-We-Were-All-the-Same Day.

It’s World Help-Each Other Day. World Love-Each Other Day. World Serve-Each Other Day. World We’re-All-In-This-Together Day.

It’s a day where we advocate inclusion and awareness of those with Down syndrome — and of all of us.

We are all born to mothers who we hope will love and accept and celebrate us. We are all born to a world where we long to be heard and respected. We all have challenges to overcome and strengths to celebrate — and we all need others to help us along the way.

And on World Down Syndrome Day, it’s a good time to remind ourselves, our children, our friends and family and communities: do not be afraid of what’s different.

Do not underestimate those around you.

Do not count out those who do things in their own unique way in their own unique time.

Encourage. Include. Involve. Accept.

After all, it’s World You-Are-Who-You-Are-Meant-To-Be Day.

I started celebrating World Down Syndrome Day for my daughter, Kate. But now I know: it’s for all of us.

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I remember the first time in my life that the “R-word” gave me pause.

It was two years ago — I was working in advertising as a writer. I was in the passenger seat of a client’s car, we were headed to lunch on a sunny day — and I can remember the way the sunlight flooded in through the sun roof.

My client was chatting about something work-related — and, in a moment of annoyance about someone or something, she said, “It’s so retarded.”

It’s a small moment in life, really, one that is usually forgotten as soon as it passes — but I can remember my thoughts as a new mom to a 1-year-old with Down syndrome. I thought to myself: “I think that word is supposed to be offensive to me now.” And knowing that my client knew that my child had “special needs,” I thought: “And I think other people are supposed to be more sensitive about it now, too.”

This was an honest moment — because truthfully, I wasn’t overly thoughtful about the “R-word” at the time.

I knew that my client adored my daughter, Kate. She would jump in front of a bus for her, climb a mountain for her, sing her praises from the rooftop — and after all, she wasn’t talking about Kate when she used the word “retarded,” she was talking about someone else — someone who didn’t have intellectual disabilities. I knew that she used this word as a habit, as casually as saying something “doesn’t make sense.” I knew that she would never say something derogatory about a person who actually had an intellectual disability — and that the word was so disassociated for her that it had almost taken on a new meaning. But still, something nagged at me.

As a child of the 80′s, I heard the R-word a lot.

Used on playgrounds, in classrooms, in movies.  It was similar to other words that evolved from purely descriptive statements (about religion or sexual preference or otherwise) into casual put-downs.

I was never a user of these words, and in retrospect did have a special sensitivity to them — but I also never thought about the silent victims of these words. The people who may not even be a part of the conversation: the onlookers, the over-hearers, the victims that know these “slam” words are the same ones used to describe aspects of them.

And truthfully, I just hadn’t ever put much thought into it.

Then, last week, I did.

I read a powerful article called I Am the Person You Hurt When You Say the R-Word by John Stevens, Special Olympics Global Messenger. John has Down syndrome and a powerful perspective.

John says:

To all of you who use it, let me say it one more time, THE R-WORD HURTS. You don’t have to aim the word directly at me to hurt me and millions of others like me who live with an intellectual disability. Every time a person uses the r-word, no matter who it is aimed at, it says to those who hear it that it is okay to use it. That’s how a slur becomes more and more common. That’s how people like me get to hear it over and over, even when you think we aren’t listening.

So, why am I hurt when I hear “retard.” Let’s face it, nobody uses the word as a term of praise. At best, it is used as another way of saying “stupid” or “loser.” At worst, it is aimed directly at me as a way to label me as an outcast — a thing, not a person. I am not stupid. I am not a loser. I am not a thing. I am a person.

It hurts me to think that people assume that I am less than a whole person. That is what is so awful about slurs. They are intended to make their target seem smaller, less of a person. People who live with an intellectual disability do not have an easy life. We have to fight to understand what the rest of you take for granted. We fight for education. We fight to live among the rest of you. We struggle to make friends. We often are ignored, even when we have something to say. We fight so hard to be seen as whole people. It hurts so much, after all that struggle, to hear you casually use a term that means that you assume we are less than whole.

When I read this, I pictured Kate overhearing someone use the “R-word” as an insult — even if it wasn’t directed at her. I remembered a time I heard a friend refer to an awkward-looking person as looking “Downsy.” I thought about the times I overheard people pretending to speak with a speech impediment if they were trying to act confused or unintelligent. And I realized the profound truth of John’s words.

All of these things are done in derogatory jest because our world all-too-often sees the people these words, phrases and actions are associated with as less than whole. Less than ideal. Less than.

So what’s the whole story on ending the “R-word”?

It’s more than just an attempt to be overly politically correct.

Or overly-sensitive.

Or overly-defensive.

The whole story is that by using the word we are contributing to the idea that someone else is worth less. And more specifically, that the group of people from whom the phrase originated are worth less.

I am still understanding of my well-meaning friends who use the word thoughtlessly (as I said, I hadn’t thought about it too much myself). But thoughtlessness from the mouth of the “user” does not change the effect on the victims — who, in a world where we’re all fighting to be seen as whole and valuable, are all of us.

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The ultimate career

March 7, 2014

I loved stumbling upon this CS Lewis passage today:

“I think I can understand that feeling about a housewife’s work being like that of Sisyphus (who was the stone rolling gentleman). But it is surely in reality the most important work in the world. What do ships, railways, miners, cars, government, etc., exist for except that people may be fed, warmed, and safe in their own homes?

As Dr. Johnson said, ‘To be happy at home is the end of all human endeavor.’ (1st to be happy to prepare for being happy in our own real home hereafter: 2nd in the meantime to be happy in our houses.)

We wage war in order to have peace, we work in order to have leisure, we produce food in order to eat it. So your job is the one for which all others exist.”

I’ve also seen this paraphased: The homemaker has the ultimate career. All other careers exist for one purpose only—and that is to support the ultimate career.

A beautiful perspective.

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