Eyes Like Sapphires

Life with Down Syndrome

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World Down Syndrome Day – Decoding Cliches

If you’ve recently become immersed in the world of Down syndrome, you will probably have come across what seems like a few cliches.  There are phrases and sayings that parents and organizations that advocate for people with Down syndrome say a lot, but I think to the uninitiated it is sometimes difficult to put real meaning to them.  I might not even be qualified to translate them for you, but in the past year we have learned a lot about what they mean – we have the best teacher! So what follows is my attempt at decoding the “cliches” for you so you can understand what they really mean to those of us who love someone with DS.

People with Down Syndrome are NOT always happy!

This one bothers Frankie’s grandma to no end, so we’ll start here. We get it A LOT – “She’s so sweet” or “She’s always so happy.” Let me tell you something, Frankie is NOT always happy. This girl is FIERCE! She knows exactly what she wants and if you make her do something she doesn’t want to, she will unleash the beast! She’s only 1, but we’ve seen her happy, angry, upset, grumpy, silly, coy, shy, crazy and manipulative all in equal measure. But I guess what is underlying here is whether or not people with DS “know enough” to have any kind of reaction other than happy. That this extra chromosome somehow erases the whole spectrum of emotions that make us human. People with Down syndrome are just as complex as everyone else and if you have trouble believing that, please take a look at Karen Gaffney’s TED Talk. She is an amazing speaker and this particular speech is full of passion, humor and emotion, not to mention intelligence.

More Alike Than Different

People with Down syndrome are more like their typically developing peers than they are different. Frankie and I are part of a very large mommy and baby group and there is very little that sets her apart from the other one year olds in the group. When we moms natter on about sleep issues and have questions about starting solids, dirty diapers and the finer points of Super Simple Songs (Frankie’s favorite!), I don’t ever have to bow out of the conversation. We may face some challenges that others may not, but, you know what? They will face some that we don’t have to as well. That’s not Down syndrome, that’s life! And as Francesca grows, she will have hopes and dreams and fears the same as you and me. She will have friends and struggles with school work, a yearning to be independent, she will find love. She will live a life. Her life. And it holds as much value as anyone else’s does. And she’s lucky to start it off with these guys, who will hopefully not blink an eye when they meet a person with DS in the future, because they already know they’re more alike than different.

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On a related note, we often say that though people with Down syndrome may share some common physical features, they look more like their families than one another. Here’s our proof…

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…enough said…

People with Down Syndrome are NOT a diagnosis!

Francesca is first and foremost Francesca. The majority of her traits, her personality, her habits, etc are NOT attributable to Down syndrome.  An example: She doesn’t crawl, she scoots around on her bottom. It’s very cute. Lots of kids do it, typical or otherwise, and yet it surprises people.  They will say Oh, look at her! And then they may continue to stare or talk about it for so long that I sometimes feel the need to explain that she has low muscle tone that makes crawling on all fours difficult. But recently it occurred to me – she doesn’t scoot because she has Down syndrome, she scoots because that’s how she figured out how to best use her body to get around. DS doesn’t define the way she moves, or the way she thinks or the way she acts. She’s just doing the best she can with what she’s got. As we all are.

But, most importantly, she is loved and loved and loved. By many.
Not because of her diagnosis, or even in spite of it.
But just because she’s our Frankie Cat.

Happy World Down Syndrome Day!

 

 

If you want to know how to treat a child with Down syndrome…

I’m just going to leave this right here…

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Naivete

We’ve just crossed the 1 year threshold and it’s almost entirely gone – the uncertainty, the fear and the sadness.  In fact, there’s only one time that sadness comes back to knock the wind out of me and sting my eyes with tears – and it’s not when I think of my baby girl.  It’s only when I think of myself.  See, I don’t feel sorry for Frankie at all, or me, or Seb, or our family and friends.  I only feel sorry for the “before” me –  the me that didn’t know that she was about to have her world changed the instant she looked into her baby’s gorgeous kaleidoscopic sapphire eyes.

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I guess I’ve never dealt well with my own naivete. Always embarrassed after the fact at the things I didn’t know, before I knew them. I think of myself planning for the baby I thought I was going to have. Trying not to act excited as I bought a new robe and PJs for the hospital. As I packed travel sized shampoos and toiletries for my stay. Trying to be nonchalant as I bought just one more gender neutral onesie – “It’s definitely a boy, but, you know, just in case…” In the aftermath of Frankie’s birth these things seemed so trivial and inconsequential and I felt like such a silly naive girl preoccupied with it all. I remember feeling angry, thinking to myself how could I have cared about that stuff? How did I think I was just going to walk in there and walk out with a perfectly fine, healthy baby.

And then there was the cringe-worthy “hopeful” phase – nervously googling, taking it to heart when the hospital pediatrician said “It’s probably nothing.” The me that thought “She can’t possibly have it, LOOK at her.” But those eyes were so telling…I knew. And I knew I knew.

And then finally there was acceptance. Maybe I’m not SO embarrassed by this final phase of me. But I still feel stabs in my heart when I think of myself handing my beautiful girl over to each new admirer and simultaneously blurting out “She has Down syndrome.” Each time was cathartic and freeing and met with the most sincere words of love and encouragement, but pierced right through me nonetheless.

There were weeks that followed when I repeatedly crumpled into my husband or my parents still hoping to wake up to find it all a dream. When I muffled my cries so my older son wouldn’t wonder what was wrong. Where I sat on the steps in my robe long after everyone had left for school or work for the day, ugly crying my way through nap time. When my baby girl’s face was wet with my own tears as I pledged to give her the very best in me with Natalie Merchant’s Wonder on repeat in the background.
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Somewhere in there it all changed for me. I’ve come to accept that it was – it is! – a process and I try not to be too harsh on myself about the way I’ve dealt with it all. I am still sad for that woman who didn’t know the pain that she was about to encounter on the eve of an occasion when she expected nothing but joy. But now, I feel so lucky to be the woman who gets to experience such joy when she expected such pain.

I guess life is funny like that sometimes…

 

Spread the Word to End the Word

Today is the annual day of awareness for the Spread the Word to End the Word campaign. For the uninitiated, the R-word is “retarded” or “retard.”

You remember saying it without a second thought in the 80s and 90s, right? Me, too.  And I will admit that even now, though it doesn’t slip out anymore, I’m not completely shattered if someone says it flippantly to describe something they think is stupid or uncool. But more and more, it makes me stop and take a deep breath. And if someone ever said it about Frankie…well, I’m afraid I’d have to get all mama bear on them.

But, here’s the thing, when someone uses it, it’s offensive to anyone with an intellectual disability. It belittles their achievements and their value as a person. Which isn’t nice.

So just don’t use it. Find another word, there are tons to choose from. It’s not going to save the world, but it’s one more step towards a kinder society. And that means a lot to a lot of people.

One Beautiful Year

Strong. Independent. Smart. Sassy. Beautiful.

These were all things I imagined when I dreamt about having a little girl. A headstrong little miss with hands on hips and pouty lips. She would grow to be a woman who was savvy and intellectual with inner beauty and strength.

These were qualities and traits I valued before having a child with Down syndrome.

When Frankie was born and her diagnosis sunk in, all of those dreams of mine dissolved.  In the darkest days I remember irrationally crying that she would never be pretty or smart, that I felt like all I could do was dress her up and make her look cute. That was all she could be. And I wanted so much more for her. My perfect daughter was gone in an instant.

How wrong I was!!!

You are 1 year old, baby girl!

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You are so strong, you blow your physical therapist away at every session and she says you’re the best she’s ever seen.

You are so independent, you push my hands away at least 10 times every day, saying without words “I got this, Mom!”

You are so smart, you are constantly figuring out ways to do just what you want to even when your little body is not quite ready.

You are so sassy, I get a preview of the fights and struggles you and I are going to have when you’re a teenager every time you glare at me from across your highchair’s tray.

And beauty…well…

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Almost every day we are approached by strangers – whether in the store or on the street or on the train. They smile, they coo, they literally gasp. I’ve heard “She’s beautiful.” “She’s perfect.” “Those eyes!” “A baby like that makes you forget there is bad in this world.” They say simply and yet with a sincerity that always catches my breath, “She made my day.” What could be more beautiful than that?

I am sorry I ever underestimated you, beautiful girl. I should’ve known better from that first day we met when you pulled my hair and checked out my diamond ring and I saw that glint in those sparkly, sapphire eyes. How could I ever doubt you would fulfill all my dreams? And more importantly, I can’t wait to watch you fulfill yours.

Happy 1st birthday, Francesca Catherine.

A Love Story

It’s taken me much longer than I thought to decide to write about our experiences with Frankie’s diagnosis of Down syndrome. It surprised me – writing is usually my go-to form of expression, but there was something about putting it all out there that kept stopping me.  Ultimately, I think the reason was that I didn’t want my little girl to ever know that I felt anything but utter joy at her arrival.  I knew it would take time to work through the fear and to unravel the tangle of emotions and I couldn’t bear the thought of her one day stumbling across my untempered thoughts.

But I realize now – at nearly a year in – that that’s not what this story is about.  It’s not about overcoming hurdles and struggles.  It’s a love story.  One that started differently than I had expected, but has blossomed into something so much greater.

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Our girl was not what we had expected and, at the time, that felt devastating. But I understand now that no child is ever what you truly expect or without his or her challenges. And truthfully, she’s so much more than I ever could have imagined!

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