Monthly Archives: May 2012

Watching Kelsi Grow: From Behind My Lens and Beyond | Down Syndrome

My name is Tyler and I’ve known sweet Kelsi all of her life.  Her mom and I have been best friends since college.  I first had the pleasure of blogging about Kelsi’s Corner on my own photography blog and am so honored to now be posting directly to Kelsi’s Corner blog.   This post will be a little bit different than the previous ones on this blog as I am not one for words.   I see the world, people and relationships as a series of moments to freeze to remember.  Whether I am doing it in my mind or with my camera, it is something ingrained in me.

We recently returned from our annual best friends vacation in Seabrook, SC.  This vacation is very special to all of us.  It is a time we are free from the daily grind and are able to just focus on our group friendship that is a blessing to us all.  I of course capture moments each time with my camera.  As I was looking over the photos from this last trip, the ones of Kelsi especially stood out to me.  This little girl we were hesitant and afraid to get to know in the beginning for fear of losing her has blossomed into this completely beautiful little girl that we all love so much.  And here again I find myself at a loss for words where I feel photographs will tell a more accurate story.  Below are a series of “then and now” photos of Kelsi from over the years taken on our annual Seabrook vacations. This time the photographic story is told from Kelsi’s point of view…

As you can see, Kelsi is of course surrounded by tons of love.  I am so proud of all that she has accomplished in the first 3 years of life, the most significant being surviving heart surgery.   I would say her name describes her perfectly:

Kelsi \k(e)lsi, kelsi\ as a girl’s name is a variant of Kelsey (Old English), and the meaning of Kelsi is “victorious ship”.

I love you, Kelsi, and I look forward to freezing many more of your moments to be enjoyed and celebrated for years to come.  You truly are victorious.

And I do hope do hope the rest of you will stay tuned to see… if you don’t I guarantee you will be missing out! 😉

 

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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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