What Down Syndrome Looks Like

Welcome to June! That means it's time for a new guest post. Today and tomorrow's  posts comes from my cousin Russ. Russ works at Wilson Lumber Company in Huntsville, Alabama. He and and his lovely wife Stacy have been married for nine years. They are the proud parents of Atticus, Eli and Eleanor. Eleanor was born in 2009 with Down Syndrome.

So...Here's Russ! 

Paula asked me to write a blog about Down Syndrome.  That's like asking someone to write a blog about kids, or travel, or love, or friendship. There is no starting point. There is no stopping point.  Each person with Downs is just that, a person.  You can’t sum it up in 350 words or less.  
Here are my own personal feelings about Down Syndrome, live and uncut.  Feel free to judge, as long as you do so in my presence.

This is Baby E, or Eleanor.  She is three and she is a handful.  She is a ton of fun and she is such a girl. 

What did I think about DS before we had Baby E? 

When I was a kid I didn’t think about it. There was a kid in my grade that had it but we hardly ever saw him.  I felt sorry for him, but didn’t think about him very much.

In middle school I associated DS with Corky from the television show Life Goes On.  I admired him.  He was doing so much “given his situation.”

In high school and college I made fun of people when they did or said something stupid by talking like Corky.  It was okay though because I “didn’t mean it that 
way.”

After school and once I was married and had kids of my own (two rambunctious boys) I thought about what a tragedy it would be to have a child “like that.”

After Eleanor, well, I think about it a lot.  I can’t put my feelings about Down Syndrome into a one or two sentence explanation.  DS is a chromosomal disorder.  The people who have it should not be defined by it.  They are as different from each other as they are from me and you.

Retarded, they are NOT.  I don’t care what Mirriam-Webster says, I don’t give a crap what google or Wikipedia says.  My daughter has DS and she is not retarded.  And by the way, I don’t think it’s funny when you say something is “retarded.”  Yes, I realize that you don’t “mean it that way” but I still don’t like it.

If you can’t “tell that there is even anything wrong with her”, it’s because there isn’t.  If you “just feel bad for her”, you shouldn’t.  She can pretty much take care of herself and she’s only 3.  What she can’t do, she’ll get you to do for her.  She doesn’t miss much.  If she doesn’t like you or what you’re doing, she’ll let you know about it.  I love that about her.

During the pregnancy we did not know that Baby E would have Down Syndrome. When Eleanor was born and the nurse handed her to me, my first thought was “Surely you wouldn't do this to me God. She just looks funny because she just came out and her face is all smushed.  I won’t say anything, I’ll just hand her to Stacey and it will all be good”.

The first step in becoming okay with the situation was about two minutes later.  Stacey held Eleanor in her lap and just rubbed her face and her eyes and stared at her.  Then she looked up at me and said “Does she look Downs?”  Why was this the first step?  Because Stacey asked that question like she was asking “do we have milk” or “what time is it?”  In other words, there was no judgement in her voice.  There was no disappointment.  It was simply a question.  What an incredible woman.

Of course, I answered her question like she was a crazy woman.  Our families confirmed what I was telling her.  She didn’t look Downs, she was just all smushed up from the birth.

We would all later fess up and say that yes, we thought it right away.  Unfortunately, none of the nurses, nor the OB wanted anything to do with the question and ran from it, and us, for the longest.

After our families left the room, I said a prayer for our daughter.  It may be the only prayer that I have said out loud just to my wife. I’m just weird that way I guess.

After that, they moved us to another room for the remainder of the stay.  I did not sleep a wink that night.  I prayed the entire time.   

Not sure about the order of events for the rest of the stay but there were a few things that stand out. When the pediatrician came she finally said what no one else would. Eleanor did display some of the tell tale signs associated with DS.  

She had a Simean Crease (google it), a broad neck, almond shaped eyes, and smaller ears.

The second and final step to being cool with Eleanor having Downs came about twenty hours later when my parents brought our boys (whom we affectionately refer to as “the turds”) to see her.  

They were four and three at the time.  When I saw them looking at her and kissing on her and just being happy to have a little sister (at least for the first 3 minutes) I knew we were fine.  I balled the entire time the turds were there.  I guess I just felt comforted knowing that she had older brothers that will kick people's asses if they pick on her.  Sorry for the language, but that is just truly how I felt.

By the way, when I tell you that my daughter was born with DS, please don’t respond with “I’m sorry.”  I wouldn’t have her any other way.

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Tune in tomorrow for Part Two. 

Other sites you might like:

The blog of Sarah Hely - A 24 year old blogger with DS who makes quilts for Reese's Rainbow in her spare time.

Bringing Up Down Syndrome