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I am deaf and my daughter has Down syndrome, so disability is a thread in our lives. I am also a third culture kid, as is my husband (which is just a...
 
 
 
 

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Top 5 Things That I Like About Having a Kid With Down Syndrome

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A million years ago (fine, more like 8), a colleague was telling me of his family's birth stories. As it so often happens, his wife finally got pregnant -- after they had given up. She was in her early 40's.

"Oh!", I gasped, "but weren't you scared?" "Scared of what?" he asked. "Of having a kid with Down syndrome," I responded, wondering a little why I even needed to mention that. I mean, she was in her early 40's -- what else was there to be scared of? "Oh, no," he replied, adding something to the effect that he likes kids and having a kid-for-life would be all right with him.

I also like kids. I used to be an elementary school teacher and I'd pinch myself some days, that I was actually getting paid to play with these small,  most amazing people. I love kids.

And while I knew -- and know -- nothing about the kid-for-life thing, I know that I love kids.

I held this tight to me through my pregnancy with Moxie. It was the only thing that I could find to bring me a measure of relief in the whole horrible, anxiety-racking business of growing me moxie. The internet was full of things about 'angels', about loving Christian goodness. About 'choosing life' about 'special-ness' about a whole lot of things that frankly, brought me no comfort. I am simply not that kind of person.

So I wanted to write a little list for the people like me that might be out there, might be reading this. The little list is the Top 5 Things That I Like About Having a Kid With Down Syndrome. Without further ado, I present:

The Top 5 Things That I Like About Having a Kid With Down Syndrome

1. She's my kid. This might seem glaringly obvious, but when you are pregnant with a child with Trisomy 21, your imagination makes the most wild leaps. Suddenly, you see that guy over there on the street who has Down syndrome and think your kid is going to look like him. And would you do that for your typically-developing child? Would you point out some random guy on the street (who might even be a different race) and get all wanked out, thinking that -- GASP! -- my little darling is going to look like HIM! 

 Nope. I think not.

So why do we do it for our kids with Down syndrome?

Our kids are ours. She's got my mother's blue eyes. She's got Mikey's mother's will power and awesome eyelashes. She's got Mikey's family's lips. She's got my fair skin (poor child, I'm so sorry) as well as my "strawberry blonde" hair that has a Vietnamese page as it's straight, not wavy or curly like the hair that my family has. She is my kid. 

2. Our kids are our own, and yet not. Like Gibran says,


Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you, yet they belong not to you.
You may give them your love but not your thoughts.
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams.
You may strive to be like them, but seek not to make them like you.
For life goes not backward nor tarries with yesterday. 

Moxie is mine and yet is not. She has placed a lens of a different type of experience over my eyes, filtering the world through her unique vision. That may or may not have anything to do with an extra chromosome. 

3. Speaking of eyes. Eyes. Almond eyes are gorgeous. There is something so... magical about them. You might not ever 'get' it until you 'get' it, but trust me. Once you 'get' it, you've 'gotten' it. Got it?

4. When you have a kid with Down syndrome, you are automatically released from all expectation. The BabyCenter milestones emails? Chuck 'em. They mean nothing. Your kid will develop as s/he will and nothing or noone is going to change that. This, my friend, is freedom. It's the most liberating thing

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Ashleigh Burroughs 6 pts

Attitude! it's all attitude! And I bet that when people ask you "how you do it" (as they do to me) you smile and say "what's the alternative?" You are the exemplar for "go with the flow" and I love it!

a/b

fuchsiaglow 6 pts

Hey, that really is some inspiring collection of thoughts & words on your little lovey.

Our daughter has other challenges & 6 years of fighting, the system, others,medical staff & wrestling to motivate myself to get enthused, to push for the nesxt thing on the list.

Well, your words afforded me a timely reflection on what is important.

Thanks a whole big bunch for that. My wee one will be wondering why things are less hurry& rush tomorrow. Let's get back to going at her pace.

Michele Berman 6 pts

Thanks for sharing this Doozee. As a pediatrician, it always "surprised" me that although a child with Down's Syndrome looked similar to all the others with the syndrome, you could still tell that the child belonged to that particular family- that he/she looked like other family members- dad's mouth or mom's eyebrows.

You have a beautiful daughter and a wonderful view of life. Best wishes to you all.

pleemiller 5 pts

There have been several individuals with Down's who have touched my life. Most I met through the church I attend. I hope to hear more about Moxie..she will teach you and the world about the important things in life..........thanks for sharing...she's fabulous.

etowndz 5 pts

I love this post. My 6-month-old has... well... some sort of genetic *something* that is not identified (even after 10 weeks in the hospital and every test known to man). But whatever it is, it does seem to have some characteristics in common with Down's Syndrome kids. I am already starting to feel that release on the developmental milestone thing. I mean, yes, I still notice. I try not to compare my low-tone girl to my friend's baby, six weeks younger and sitting already, and I don't always succeed. But yes, it definitely lets me sit back and just be really happy when she does something new on her own timeline.

doozee 5 pts

I think it seems especially challenging when you don't have a diagnosis or a name for what "it" is, isn't it? etowndz

Forever 17 20 pts

Your daughter is beautiful! you are truly blessed. Great Post :)

doozee 5 pts

thank you so much! I am indeed blessed

Forever 17

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CarrieWChildren
CarrieWChildren

janenation Super cool! I love it! Thanks for sharing!

JaneNation
JaneNation

carriewchildren No problem!

laurapope_
laurapope_

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