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    Posted January 27, 2014 by
    skattouf
    Location
    Troy, Idaho
    Assignment
    Assignment
    This iReport is part of an assignment:
    Living with a rare disease?

    The Shades of the Spectrum

     
    There are many shades of light in the world. They seem to change with the moods of the day, constantly in flux as we experience joy and pain intermittently. There are days when the world seems to glow around us, bright and vivacious in its wonder and joy. Days when yellow looks gold and pink seems red, bright blue eyes sparkle like clear water and your heart knots itself up in the beauty of the newborn infant in your arms.

    This was the day I imagined when I took a pregnancy test, and found out we were expecting our second.

    My first pregnancy was so easy, and from it I was given the precious gift of an infant boy who was in perfect health. I was happy with my life, and what I had been given. The thought of a second was a thrill for my husband and I. We eagerly went to the doctor’s office for our first sonogram, jittery with anticipation and happy thoughts.

    After finding out we were having a boy and being so excited to meet the little one, we decided to go for the 3D sonogram. Images of our dear Colton were not just black and white fuzzy outlines, but we could actually see the distinguishing marks of his features. His face, the shapes of his eyes, the line of his mouth. My precious child, we were meeting him already and falling in love!

    But the light spectrum spans more than dazzlingly bright. There are times when it diminishes, and the world slips into grey-scale. There are times when it goes out entirely, and you are left in darkness.

    Before a light bulb goes there is a quick zeroing out, a flash too quick to recognize in most instances. But if you happen to be paying attention you can catch the final moment. When the power dies and every light in the house winks out all at once however, there is no warning, and we are left to fumble about in the dark. All you get is the whining of electronics dying down in the aftermath.

    This is a suitable comparison for some of the events of life. Sometimes we are given warnings, cues that creep up and only make sense in our conscious mind after we have been dealt a blow and we think ‘I should have seen that coming!’ But then, there are times when we are so blindsided by the events of life that it simply leaves us speechless, grasping to maintain a hold on a life we thought we knew.

    The day of my emergency C-Section is a blur in my memory. I heard him cry as he was brought into the world, and I watched as they cleaned him up, swaddled him and handed him to his proud father as I lay on the operating table.

    Colton was born on September 12th, 2012.

    He weighed nine pounds, thirteen ounces.

    He has brown hair and brown eyes.

    He has Down syndrome.

    My mind was a whirlwind of fear and depression. I was confused and there was no help for me in between the hospital walls. I received only cold, ruthless papers that had information that could not possibly apply to my sweet, sweet child.

    Those days were dark; very, very dark, but like most things, eventually you must pick yourself up and sew yourself back together after the blow has been struck.

    I am hardly a china doll, I will have the strength and courage to raise my child because he is a precious boy who is deserving of this. Just because he was born differently does not mean he should have to pay for the genetic chance that caused this turmoil.

    It is one, tiny, sub-atomic fleck of DNA. How much strife and pain would I allow this to cause me?

    Around week seven I distinctly remember looking at Colton and having an epiphany. I no longer asked ‘why me?’, but instead ‘why not me?’

    In the months that followed, the last thing I would do is accept the bleak outlook that he had been so innocently born into. I rejected the medical literature that prepared me for a lifetime of endless suffering and heartache, and I searched high and low for the testimonials; the happy endings; and the inspiring true stories of other parents who had been down this same road.

    I founded the community platform known as Special Miracles. I made a resolution to myself and to Colton; that I would become his strongest advocate, and his devoted ally. I found a flood of dark and unsympathetic statistics and misconstrued information, but very little in the way of positive approaches and the reassurance that life with Down syndrome can be just as joyful as without it. So I made a website doing just that; and it grew; and grew; and today Special Miracles has over one hundred thousand members and growing daily.

    My family and I went through a tumultuous time, but we have banded together and overcome the pitfalls that life has brought us. Today, Colton is a happy, healthy child and an irreplaceable part of our family. He has given me drive and a higher purpose to which I aspire to every day in raising my children, as well as leading Special Miracles into a wider audience.

    It is for this reason that I hope to bring our story out into the greater world with the hope of educating anyone who might read this, and simultaneously easing a new parent’s fears or misgivings of their own.

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