Monthly Archives: June 2012

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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