Slideshow of Kelsi | Down Syndrome Support

Photographs and slideshow courtesy of Tyler Plank Photography

For more videos of Kelsi, and other great Down syndrome awareness videos, please visit the Kelsi’s Corner YouTube channel:

Kelsi’s Corner- Down syndrome awareness on YouTube

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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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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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A Friend’s Perspective | Down Syndrome

My Best Friend’s Journey

     My story with Dana began some 17 years ago (wow, was college really THAT long ago?!)and over the years we have been on many journeys and adventures together.  We have been side by side from our days at U of I, to moving to the city and starting our careers, to meeting our husbands and starting our families.  Dana is one of the people in my life with whom I’m closest and that is a gift for which I am truly grateful.  We’ve had many life stories together in those 17 years, but nothing prepared any of us for what we learned back at the end of 2008.

     When Dana and Tony first shared with us that the doctors found a heart defect during the 20 week ultra-sound I remember feeling shocked and an immediate pit in my stomach.  What does this mean?  Can it be fixed?  How will it affect their unborn daughter?  What can I do to help?  There were so many questions.  The days between the ultras-sound and when they had the amniocentesis seemed like years.  I remember Tony calling me from the car to tell me that, “Yes, our daughter has Down Syndrome.”  I was speechless.  I felt helpless, I was at a loss for words; the pit grew and all I could wonder was “WHY?”  The “bubble” that we lived in throughout the better part of our lives seemed to have been burst open.  I remember crying and my heart aching and hurting so badly for my friend, her husband and her baby.

     I quickly realized that my best friend, who I’ve always known as a rock; strong, faithful and optimistic; needed us to be that for her more than ever.  Our tight group of friends rallied around Dana and Tony and as forcefully as the diagnosis hit me, it hit me that this unborn little girl and her family have so much love and support around them; they would not be on this journey alone.  It also hit me that perhaps the reason I was so stunned and “smacked upside the head” by everything was because I probably didn’t know as much as I thought I did about what this diagnosis was all about.  “Probably didn’t know” soon turned into “I didn’t know.”  After reading and educating myself more about Down syndrome, I realized all of the stereotypes I had allowed myself to think were not reality.  It was those stereotypes that lead to such fear and angst.

     When Kelsi was born she immediately took up a special spot in my heart.  Watching Kelsi grow over the last 3 years has been, and continues to be, a great privilege.   She has a way, an aura, about her and a shine in her eyes that immediately draws you in.  She’s filled with love and compassion and that is evident so early on in her life.  I see that love come out so authentically when I watch her interact with my own 2 kids and her older sister.  From such a young age you can really see empathy in her when she knows another child is hurt or sad.  She will also defend and stick up for herself in the sea of toddlers that is our circle of friends!  From Kelsi’s soft side also comes one tough cookie.  Her first year was not an easy road and her strength is inspiring.  This week she started preschool and I couldn’t be more proud!  This is a big step for her and I look forward to watching her grow, learn, progress and thrive in her education.   She is no doubt going to make such an impact on this world and I’m so happy to help share and spread her story.

     Kelsi’s strength and determination have been a source of hope for her parents, friends and family as well.  Thank you both Dana and Tony for you strength, bravery and wonderful friendship.  Thank you for taking the initiative to start and create Kelsi’s Corner.  She is very blessed to have such courageous parents who can help share her story; the ups and the downs, the truths, the milestones, and everything in between.  I too feel very blessed to have you all as part of my life as well… an extended family if you will!

     Kelsi has already profoundly impacted our lives, and we can’t wait to see how many other lives she touches.  She has already taught me more than I can imagine, and I so look forward to everything else we will learn throughout our lives together.  Thank you for having me as a contributor to Kelsi’s Corner.  I’m so grateful to be able to share a little portion of my own point of view.  You can always count on me to be and advocate, a cheerleader, a friend, an “auntie” and whatever you else I can be for you all and for Miss Kelsi.  My love to you all!!

-Amanda

Thank you, Amanda,  for sharing your heart and candid feelings.  I know has been an emotional journey for all of us- one filled with many ups and downs.  I could not have gotten through it without you and the support from my friends.

Kelsi loves you, Auntie Amanda!

Last but definitely not least… no blog post is complete without a photo!  So proud…

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Welcome to Kelsi’s Corner | Having a child with Down Syndrome

My beautiful daughter Kelsi turns 3 this week and I can hardly believe it.  I am overwhelmed with my love for her and the daily joy that she provides to our family.   Kelsi’s Corner is a gift to her as a thank you for transforming me into a better mother and a better human being.  She is the light of my life- a light at the end of a dark tunnel that I never thought I’d see.  This is a story of my transformation from despair to life and hope.  The truth is Kelsi has Down syndrome and I wouldn’t take it away.  But the other truth is that I didn’t start out feeling this way.  In fact the emotions I just described are almost opposite of the way I felt days, weeks and even months after receiving the diagnosis.  The truth hurts and sometimes so much that it’s hard to say aloud, especially when it goes it against everything you “thought “ you believed in.  So here is my truth.

During my 20 week ultrasound, when I found out I was having another girl when I was delighted!  When I then found she had a heart defect I was distraught.  When I found out she had Down syndrome I was devastated.  I am pro-life, or at least that’s what I’d told myself for the last 30 years.  All life is valuable.   Trust in God.   Everything happens for a reason.  All such inspiring truths until you are personally facing struggles you had never imagined.   When I heard the words Down syndrome I immediately thought my life is over.  I will have an adult child in my home until I die.  I will never go on vacations again.   My first-born daughter will be stuck caring for her forever infantile sister.  And those are only a few of the hopeless thoughts that went through my head.   My heart hurt more than it ever had.    I was in shock, it scared me, and it was more than I could handle.  I couldn’t talk to anyone, I couldn’t go to work,  I just cried and tried to figure out how to wrap my head, my arms, and my heart around my situation.  Here I was in a position where I believed I knew exactly what I was supposed to do and I did not want to do it.  I did not want to have a baby with Down syndrome.  This in itself altered me forever.  To be faced with a decision that shakes the core of who you think you are has a monumental impact on the person you become- whichever road you choose to take.  As you already know I chose to sustain the pregnancy but my agony did not end there.  Over the next few months of my pregnancy I lived in fear and disgust.  Disgust with myself for the way I felt about my baby girl that was growing inside of me.  The excitement, joy, and anticipation I felt with my first child was replaced by fear, anxiety, and sorrow.  There is a lot in the middle as the transition from despair to happiness did not occur overnight.  I had to educate myself, break down my own mental stereotypes, and consider the fact that I really knew nothing about this “awful” diagnosis I had been given.  Looking back I realize now my feelings weren’t wrong but I  also realize they were formed due to my ignorance on Down syndrome and the stereotypes imparted onto me by society.

In the 3 short years that Kelsi’s been here, I’ve learned the truth- what is my new truth.  Down syndrome is a part of Kelsi but it doesn’t define Kelsi.   Kelsi is fun, determined, charming and stubborn- a typical toddler in most ways.  She loves Elmo, following her older sister around, and is a daredevil when it comes to new challenges.   I always hoped my second child would be more loving, as my first is not the most affectionate child.  I laugh now at how God works in mysterious ways as Kelsi showers our family and friends with hugs and flirts with strangers when we are in public.   At only 3 years old she strives for independence and I am fully confident she will leave the home just like my older daughter.  She’s been to Colorado, Niagara Falls, Seabrook, Disney World, Washington DC, and on a few other vacations.   Not bad for only 3!  The truth is I was wrong.  Not wrong in my emotions but ignorant in my perception of what Down syndrome is.  Emily Perl Kingley’s poem describes it best for me.  It may not be Italy where you had always planned to go but Holland is beautiful as well!
For those of you women who are pregnant and currently trying to decide if you should terminate your pregnancy, stop and take a moment.  If you landed here then I’m assuming you feel as lost as I did.  Before you travel down the path most traveled and join the 90+% of women who choose to terminate, please educate yourself on the realities of Down syndrome and don’t just believe the common misconceptions.  Most importantly, please educate yourself not from a doctor’s medical point of view but from a mother’s point of view.  Regardless of your decision, every child deserves to have someone in their corner even in the bleakest of circumstances.  I’m an open book and I’m here to help woman facing this diagnosis.  Post, email me, or call me.  But before you make the decision  to take the road the majority of women choose to take, at least consider taking the road less traveled.

I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I,

I took the one less traveled by,

And that has made all the difference.
-Robert Frost

Happy Birthday Kelsi!  Thank you for making me a better person- I’m so proud to be your Mommy!

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Down Syndrome Awareness- Maddox Lucille

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