Category Archives: Information

Quality of Life | Down Syndrome

In our kitchen hangs a plaque given to me by my husband that says, “Life is not measured by the number of breaths we take but by the moments that take our breath away”. – Hilary Cooper
I think that most people would read that, smile and agree.  This leads me to ask what are the moments that take our breath away?   I’m sure for many people these are similar, yet different things.  I asked friends and colleagues and got the following responses: the birth of a child; viewing sunsets from a boat; road trips in your youth when it seemed there was no limit to where you could drive;  saying goodbye to a loved one; a beloved pet; your wedding; an unexpected diagnosis; a glass of wine and toast with friends; seeing love for you reflected in a loved one’s eyes; an amazing vacation; the moment you realize you made the right decision on something you’d struggled with.  Whatever your answer may be, it is those moments that people place the most significance on and attribute to what makes a good life.  A quality life.
When you hear of people struggling as to whether or not to bring a child with complications into the world you often hear them speak about compromising the quality of life for the child. I can tell you that people with Down Syndrome enjoy life, they contribute to society, many go to college, are gainfully employed, have friends and go about their day in the same manner as you and I do.  So what part of  “quality” is missing that make people question bringing this child into the world?   Is it the possible restriction as to the level of “success” they may achieve?  Doesn’t our society need a wide variety of people to function, from grocery clerks to heart surgeons?   If it’s the reduced odds of a high paying job, then again I ask does this really have anything to do with “quality” of life?  This isn’t to discount a high paying job, being successful or an education.   A good education is important and a good job provides the necessities in life.  I work in the sales field in what I find to be a fun and rewarding job.   I love the feeling of elation when I close a big deal and the anticipation of the check that will soon follow.   Those are good times!  But I also know that my favorite moments in life (the ones I imagine will be swirling through my head someday as I fade off to the next world) will be the moments filled with hugs, smiles, and laughs… moments with family and friends.
So I ask the question again.  What makes your quality of life better or worse?  Is it the moments filled with meaning whether it’s love, sorrow, joy, surprise, the day-to-day normalcy or both? I would say, for me, it’s both with the majority falling into those moments that take my breath away. Given the opportunity I believe most people with Down Syndrome will succeed and contribute to society financially, emotionally, and as living examples of overcoming challenges.   So if people with Down Syndrome can be a part of both the day-to-day and enjoy the breathtaking moments then why the question their quality of life?   For me many of my breathtaking moments directly relate to Kelsi.  From the devastation I felt when I heard the words “Down Syndrome” to the moment I KNEW in my heart I made the right decision to watching her enjoy the beach in one of her own breathtaking moments.  If life is about the moments that take our breath away then aren’t those moments found when we truly live life?  Moments that cannot be bought, only lived?
“It is said that for money you can have everything, but you cannot. You can buy food, but not appetite; medicine, but not health; knowledge, but not wisdom; a bed but not sleep; glitter, but not beauty; companions, but not friends; servants, but not faithfulness; leisure, but not peace; flattery, but not respect; fun but not joy.” -Arne Garborg
Now isn’t this what life is all about…

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Life is a Gamble | Down Syndrome

If you’re anything like me the following is a relatively common scenario…

You pull up to the drive-thru of a fast food restaurant and order a double cheeseburger combo meal with a diet coke.  You pay at one window, grab your order at the next and pull away.  You open the bag later only to discover a chicken sandwich and take a sip of your diet coke to be greeted with the unwelcome taste of what in some moments you recognize as Dr. Pepper.  You are so annoyed!  You ordered what you wanted, the screen reflected what you wanted, you paid what you owed for what you wanted, and you still did not get what you wanted!  So you’re mad and you’re cursing the worker who handed you the wrong meal and everyone else. In today’s day and age this is unacceptable.  While not getting the right meal at a fast food joint may not be more than a minor annoyance and blip in the day, our obsession with getting what we want when we want it underlies most things and when it carries over into our expectations with our children… well that just isn’t fair.

Wouldn’t it be great if you could order one cute typically developed child with blond hair and dimples and hold the temper tantrums and visible birth marks?   And we all have high hopes for our kids once they are born.  Some have really high hopes!  Maybe they will have a genius, professional athlete or even an Olympian.  Just maybe even the future President of the United States!  Here are the odds….

Odds of winning an Olympic medal: 662,000 to 1
Odds of finding out your child is a genius: 250 to 1
Odds of becoming a pro athlete: 22,000 to 1
Odds of becoming president: 10,000,000 to 1

I wonder why this obsession with perfection and from where did it come?  Humans by nature are imperfect and there is beauty in imperfection.  As I look around at the wide range of people around me I’d like to know what is “perfect” anyway?  Maybe you are saying,  “But that’s not me!  I don’t want a “perfect” child/genius/pro-athlete/President!  I just want him or her to be healthy!”   I understand as I said the same things.  Yet when faced with the prospect and then the reality of actually having a child with Down syndrome I felt so many of my dreams for my little girl plummet.  Why?  Down syndrome tends to be easy to label as imperfect and because it’s something that can be diagnosed prenatally there is a high abortion rate.  But what about all the things we can’t account for after our children are born?   A child born seemingly healthy is still at risk to the odds of life.  All the testing in the world cannot change the odds post birth and nothing can guarantee what your child will be like.  Yes, Down syndrome occurs in one out of every 691 live births.  Did you also know that one in 110 children have autism, 3000 babies die of SIDS each year and an estimated 1,340 cancer deaths are expected to occur among children aged 0-14 per year?  Our chance of dying from choking on food are 1 in 370,035 and of being killed sometime in the next year in any sort of transportation accident are 77 to 1.  The statistics are scary and if looked at too closely make you wonder how we ever get through one day unscathed.  Every time you order a cheeseburger, every time you leave your house, and every time you have a baby you are taking a chance.  You are playing the odds hoping you get what you’re looking for and you just may not get what you thought you wanted.  When it comes to statistics, here is one my doctor told me that I will never forget…
As I agonized over what the odds were that I would have a daughter with Down syndrome he said to me that the odds don’t matter.  She either will have Down syndrome or she won’t but that he was 100% certain that I was having a little girl and that I would love her.  And I can now say with 100% conviction that he was 100% right.

This quote by Joseph Addison is one I hold close to my heart: “It is only imperfection that complains of what is imperfect. The more perfect we are the more gentle and quiet we become towards the defects of others.”

Life really is a gamble, just ask Maddox Lucille, one little girl who is beating the odds…

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