Tuesday, July 11, 2017

And People Think Having a Kid with Down Syndrome is Hard...

The other night, we were having an informal cook out with the neighbors.  Merryn was running in and out of the house, filling up a dozen cups of water, dripping it everywhere, failing to shut the door 90% of the time, welcoming every fly in a 5 mile radius to come on in and enjoy the amenities like unlimited air conditioning...Lydia had cast her plate aside, chunks of hot dog painstakingly cut into choking-hazard-proof bites all over the driveway, and she was sprawled atop the yellow roof of a red Little Tikes car, having an epic threenager tantrum because our neighbors' son had the audacity to take a turn driving it and she was NOT having it.  Josie was calmly perched in a kid-sized lawn chair, politely using her utensils to happily eat the meal that had been placed before her - vegetables and all.  I looked over at my neighbor, gesturing to the little blond beacon of calm amidst the storm of chaos and joked, "And people think having a kid with Down syndrome is hard..."
I actually make this joke quite frequently as Josie's mellow temperament and leisurely pace are a stark contrast to the noisy, high-energy, demanding pace of her sisters.  
 My mom always said that Leanne was so easy to please.  As a child, she had a select handful of items that kept her happy and entertained for hours - namely, Little People and the corresponding school bus.  Likewise, Josie is content with a few simple favorites - she likes singing animals, music, and bubbles.  She never seems to get tired of any of those things.  In a world of constant consumption and instant gratification (ever read "Berenstain Bears Get The Gimmies"?) it is refreshing to raise a child who isn't as easily sucked into that culture.  Simple things make her happy.  Leanne is that way to this day.
So IS parenting a child with Down syndrome hard?  Let me level with you: parenting in general is hard.  So, so hard.  I can't tell you how many moments I've felt like I was not cut out for this job; numerous instances when I'm convinced that I'm failing miserably.  There have been scenarios when I know I have not been the image of the mother that I want my kids to remember, but rather a story that they'll share with their therapist in 20 years.  And I'm only 7 years into this journey!  I'm sure a more seasoned mother would tell me that I haven't seen anything yet!
The thing about raising kids is that regardless of chromosome count, they all have different needs.  They all have different strengths and weaknesses.  And as a parent, you don't tally all of the different ways you adapt to support each individual child throughout the day; it just happens naturally.

Sure, if I look back on it, raising a kid with Down syndrome has had many unique hardships, primarily because Josie has had many different health issues that I felt ill equipped to deal with.  But she was my child and I assumed the role of honorary medical professional; it was never a title I aspired to, but I learned because that's what was required to provide the care that Josie needed.  But all kids with Down syndrome are different.  Not every child with Down syndrome went through the buffet of health issues and took a little helping of everything.  Some kiddos with Down syndrome are born perfectly healthy.  And guess what: some typically developing kids are born with health issues.  Typically developing children can have heart defects and respiratory problems, too.  

I recently had a good friend look at Lydia endearingly and say "I miss that age."  I spewed my beverage across the counter and sputtered "You can have her."  Of course I was joking, but I've come to realize that toddlers are not my strength.  Before Merryn matured into "Mother Hen," we affectionately called her "Hurricane Merryn".  She was on a mission to destroy everything in her path, including my sanity.  Of course we managed to somehow survive, and by age four, I decided I would keep Merryn and I haven't looked back.  Of course we thought Merryn was a challenging 3 year-old...until we met Lydia.  
When Lydia tries my patience, I remind myself that I just have to make it through the year.  Age four will be better (I hope...for the sake of my liver).  
But Josie didn't experience ages three and four in the same defiant, destructive, tantrum-throwing, patience-testing manner.  Of course she didn't - everyone knows that kids with Down syndrome are perpetually happy.  Just kidding!  That's a myth.  Josie never cried much (now whining - that's another story).  Josie didn't seek out trouble; in fact her gross motor aversion ensures that she stays safely planted on her rear end for most of the day.  Balance and stability are not strengths for Josie so climbing was never an issue.  But that's just Josie.  Some kids with Down syndrome love to run, climb, and explore.
All kids with Down syndrome are different.  All kids are different! 

Isn't it funny how siblings can be raised in the same household, by the same people, with the same values and rules, and still turn out to be very distinctive and individuals - sometimes total opposites?  It's because we're all born with our own personalities - a Down syndrome diagnosis doesn't change that.  Josie is our most laid-back and mellow kid.  That's just the way it worked out.  

Kids don't come with instruction manuals.  When you enter the vocation of parenthood, you truly have no idea what is about to come your way.  But with a heart full of unconditional love and a little patience, you've got the tools you need.  (But keep a bottle of wine on hand - just in case).


  1. So much truth in this post. Beth's our oldest, but she's not the big sister in our family. A phenomenon you've experienced I'm sure. She's mellow, very content and doesn't like change. I've sometimes wondered if she'd be that way if she didn't have Down Syndrome. I expect she would have dated first, driven her sisters around town, moved out of the house first... but what about her personality? Would she be quiet and content? Would she be caught up in the world of excess? Would she have been a typical first born? Questions that will never be answered. But 32 years in, I'm okay with that.

  2. I just love this.�� And you.��

  3. Three little cuties