WORLD DOWN SYNDROME DAY
One of the typical identifying features of DS is a single palmar crease. Maddox has this marker on her left hand only.
The twenty first day of the third month of the year.....
Prior to Maddox’s birthday I had no idea this day existed.
Somewhere, someone thought it would be great to dedicate a day to those who have three chromosome 21s. Thus became World Down Syndrome Day on 3/21.
What do I think about this day? Well, I can start by telling you last year when Maddox three months old I thought this day was repulsive, degrading, and chose to ignore it. I would read stories of people celebrating this day with balloons, cake, and the party works. Seriously? All I wanted was for my baby to be normal, not stand out from anyone else, and now people are taking a day to celebrate three copies of the 21st chromosome? I can tell you last year, I was definitely not celebrating this horrific chromosomal error.
But today, 365 days later, I can face World Down Syndrome Day with a slightly better attitude. While I am not quite to the celebration mode, I can breathe at least. I still don’t think the extra chromosome is beautiful but I can say say that my daughter does has 46 beautiful chromosomes and there are days where it is a struggle to even remember that.
I continue to have mixed feelings about today. I do know that before Maddox was born, I thought I knew everything about how to live life without regrets. What I have come to realize is that I knew about the ‘without regrets’ part, but I had no idea how to really ‘live life.‘
Not knowing that first night, just how long Maddox was going to survive, I promised her in the NICU not a day would go by that she wouldn’t get the opportunity to live.
That is why, every chance we get, we are taking risks, going on adventures, jet skiing, taking naps everywhere but the crib, getting puppy kisses, painting faces, snuggling with doggies, dressing up as princesses, swimming in lakes, making snow angles in the freezing rain, feeding horses, getting our ears pierced, going to the spa, swinging in apple trees, baking cookies, eating ice cream cones, staying up late to watch fireworks, camping in the rain, painting toenails, eating three birthday cakes, sitting in hot tubs, dancing in the streets, hiding in toy displays, eating suckers, drinking from wine glasses, carving (and eating) pumpkins, taking baths outside, creating crazy photo shoots, taking edible bubble baths, petting dirty animals, getting lipstick kisses, putting bows in our hair, and of course eating chocolate cake after bedtime.
Each day is a gift, unwrap carefully, savor every moment.
Without further ado, on this day, I have chosen not to celebrate Down Syndrome, but HAVE chosen to honor Maddox for teaching me how to ‘live life.’
Below is a snapshot of the year’s adventures.
Prior to Maddox’s birthday I had no idea this day existed.
Somewhere, someone thought it would be great to dedicate a day to those who have three chromosome 21s. Thus became World Down Syndrome Day on 3/21.
What do I think about this day? Well, I can start by telling you last year when Maddox three months old I thought this day was repulsive, degrading, and chose to ignore it. I would read stories of people celebrating this day with balloons, cake, and the party works. Seriously? All I wanted was for my baby to be normal, not stand out from anyone else, and now people are taking a day to celebrate three copies of the 21st chromosome? I can tell you last year, I was definitely not celebrating this horrific chromosomal error.
But today, 365 days later, I can face World Down Syndrome Day with a slightly better attitude. While I am not quite to the celebration mode, I can breathe at least. I still don’t think the extra chromosome is beautiful but I can say say that my daughter does has 46 beautiful chromosomes and there are days where it is a struggle to even remember that.
I continue to have mixed feelings about today. I do know that before Maddox was born, I thought I knew everything about how to live life without regrets. What I have come to realize is that I knew about the ‘without regrets’ part, but I had no idea how to really ‘live life.‘
Not knowing that first night, just how long Maddox was going to survive, I promised her in the NICU not a day would go by that she wouldn’t get the opportunity to live.
That is why, every chance we get, we are taking risks, going on adventures, jet skiing, taking naps everywhere but the crib, getting puppy kisses, painting faces, snuggling with doggies, dressing up as princesses, swimming in lakes, making snow angles in the freezing rain, feeding horses, getting our ears pierced, going to the spa, swinging in apple trees, baking cookies, eating ice cream cones, staying up late to watch fireworks, camping in the rain, painting toenails, eating three birthday cakes, sitting in hot tubs, dancing in the streets, hiding in toy displays, eating suckers, drinking from wine glasses, carving (and eating) pumpkins, taking baths outside, creating crazy photo shoots, taking edible bubble baths, petting dirty animals, getting lipstick kisses, putting bows in our hair, and of course eating chocolate cake after bedtime.
Each day is a gift, unwrap carefully, savor every moment.
Without further ado, on this day, I have chosen not to celebrate Down Syndrome, but HAVE chosen to honor Maddox for teaching me how to ‘live life.’
Below is a snapshot of the year’s adventures.
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Yes, while our journey this year has not been all sunshines and roses, it has been filled more adventure, spontaneity, and love than I could have ever imagined.
That’s what today recognizes.......
Not only how far we have come, but how far we have yet to go.
Check back in another 356 days to see what year three brings. I’m hoping, third times the charm!
Click here to read York News Times article on World Down Syndrome Day by Greg Awtry
Comments:
RAE N TIM
Maddie thank you for letting us be a part of your life!! Tim and I love you and your family so very much. We are honored to know you.
OOXOXOXO
MONDAY, MARCH 21, 2011 - 09:46 PM
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