On March 21 we celebrate World Down Syndrome Day. We celebrate uniqueness and joy and individuality. We strive for acceptance and respect for a group of people who are far too often demeaned, underestimated, and marginalized. Today I also celebrate Kaitlyn, whose far too brief time on this earth left a light that still shines brightly.
Kaitlyn passed away in December, 2013 after a brief battle with illness. She had Moyamoya disease, a little-known condition that can affect individuals with Down Syndrome. Her loved ones were stunned with grief, and it sent a shockwave through the local community. It seemed inconceivable that her life was taken so early. She was only 15 years old.
Kaitlyn had a lot to teach us about living and loving. She lived enthusiastically and joyfully. She loved unconditionally and freely without expectations or conditions.
Among her favorite things were the color pink, Disney movies, music, dancing, and her family. She showed those around her that true beauty lies in being, as her mother so eloquently put it, “Perfectly imperfect.”
This is Kaitlyn with her cousin Parker. His mother writes, “We would not change them for the world but we would change the world for them!”
World Down Syndrome Day is a bittersweet observance. We celebrate Kaitlyn’s life, her legacy, and the many lessons she taught all of us. We are richer for having met her, and poorer for having lost her. Her family shares, “As painful as the memories can seem sometimes, they are all beautiful, and we will always be THANKFUL for every single one of them. They are precious and priceless. And as the sadness of missing her tries to creep in… we will remember her crooked smile and be thankful for the time we had, and do our best to crack a ‘crooked smile’ because that’s what she would want.” Today, and every day, they remember her and the far too brief time they spent together.
On World Down Syndrome Day we also strive for acceptance of all individuals with Down Syndrome. As inconceivable as it is to Kaitlyn’s loved ones, and as much as she is missed, there are those in the world who would place less value upon her life because of her extra chromosome. In some countries it is still considered shameful and a dishonor to give birth to, and especially to raise, a child with Down Syndrome. In those countries mothers are routinely pressured to give their children up to be placed into institutionalized care.
All over the world mothers face pressure, sometimes subtle and sometimes not so subtle, to abort unborn children when Down Syndrome is detected. If they decide to keep and raise their child they are often shamed for allowing a life to come into the world that will be viewed by some as simply a burden to society.
I would ask those people to visit Kaitlyn’s memorial page on Facebook. It is filled with memories, pictures, and this adorable video. How can you watch her smile and listen to that sweet voice and simply view her as a burden?
The world can be cruel to those who are different. People with Down Syndrome are routinely mocked and ridiculed and viewed as somehow lesser members of society.
Kaitlyn’s brief time on this Earth urges us instead to redefine the world’s standards of value and perfection to embrace a life well-lived and well-loved. She was truly beautiful, and she is truly missed.
Kaitlyn’s mother, Tracy, has this to say~
On World Down Syndrome Day, I remember…
On November 18, 1998 I gave birth to one of the greatest gifts of my life, weighing in at 7lbs 4 1/2 oz, & 18″ long. We found out at 6 months pregnant that our baby girl would have Down Syndrome. The words leaving the Dr’s mouth that evening, made me go deaf temporarily. We were scared, and the battle for faith commenced. For 3 more months we waited, we fought off the perinatologists best efforts to convince us she should not be here. Hydrocephalus they said, major heart defect they said, vegetable that would never leave the hospital they said, think about the quality of life they said, you’re young and can have another baby they said. Another baby??? But THIS was our baby…she had grown inside of me, I had felt her every move. I watched the screen as she’d move and bring her hands to her face. She was mine, right from the beginning, and as mothers aren’t we to protect our young? Isn’t that our purpose as moms? You would never dream of having a baby and the Dr saying, “by the way this one’s defective we’re just going to end its life” The moment came, and it was clear…put our faith in God and he will take care of it.
Kaitlyn Dee Laramore was born. Her first cry brought a rush of relief over my soul. There was no breathing assistance needed, no NICU needed, no extended hospital stay. She came home with us 2 days later. I can remember standing over her cradle in amazement at all the things she was, and none of the things that they told us she would be. She had heart surgery at 6 months and we never looked back. For 15 years and 8 days shy of 1 month, she BLESSED our everyday life. She was a ballerina that loved to dance, reading anything she could get her hands on, Katy Perry, Doc McStuffins, Mary Poppins, Disney World, and to be anywhere her family was. She wanted to be a princess when she grew up. Always a smile, a hug and a how was your day, especially when it had been a rough day for one of us. Always so considerate and kind, and full of love and a smile. The unconditional love we learned and received was the greatest lesson of my life. People that are faced with this “decision” after receiving a prenatal diagnosis of Downs…I BEG you, quiet your mind and open your heart. Trust, and have faith. It won’t always be easy, but it is without a doubt the greatest pleasure of my life to have been her mommy. The hardest part of having my daughter who just so happened to have Down Syndrome, was the day God said he needed her back. December 10, 2013. The world lost one of its brightest lights that day. Her race was run, and her purpose fulfilled. The greatest teacher of my life. Wouldn’t change a thing, except keeping her with me forever.
One last question…..Would you turn down a piece of heaven if it was offered to you? They are as close as we can get to it in this unkind world we live in. The world NEEDS them. Let them teach us. We have so much to learn! Happy World Down Syndrome Day.
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