News flash...I have two kids with Down syndrome. Count them...TWO. Most people look at me like I'm bonkers, one stranger not so graciously asked "are they BOTH yours?" You could see her brain short circuiting: TWO. AT. ONCE. SO MANY CHROMOSOMES. CANNOT. COMPUTE. But then one woman, a Chinese-American mother of a seven year old with Down syndrome stopped me short with her question. It was honest, and raw and from a deep place within her: "But...why?"
I truly was not offended, but my heart did ached for her. I could feel her pain when she saw our two Asian babies next to each other. She was still grieving the 'loss' of her 'normal' child; and not only was I celebrating my 'less than normal' child...I sought out a second one. She didn't yet see the joy, hope & promise set before her in the child and all her chromosomes playing at her feet.
Is my life different than the average family's? Yup. My kids have struggles in life that other kids don't, but they also excel in areas that many typical children struggle with. We emote well and joy comes easily; we give deep hugs and blow kisses to strangers in the parking lot. Depression and fear is not a part of our lives--sadly, both becoming more and more frequent in neuro-typical children. In this fast paced society, those extra chromosomes have forced my family life to be thoughtful and evenly paced. It is indeed a gift. We celebrate EVERY victory--from remembering to say 'excuse me' (or "beep-beep", in Isaac's case) after burping to reading a sight words at school or successfully getting on an escalator without getting eaten alive. We take nothing for granted, because for generations and generations before us no aspect of our current life was expected: "He'll never have any quality of life. It's better if you just put him in an institution and move on with your life. You can always have another baby." was standard medical recommendation.
Is it more work? Maybe. Some days it's a hard YES, but most days it's just maybe. Because here is how I look at it: Michael Phelps is an incredible athlete. There is no questioning it. Swim records and awards as long as my arm...as HIS arms! Simone Biles is also a stellar athlete. She continues to crush long standing gymnastic records with power and style. Both are matchless Olympians and have trained for hours upon hours upon hours to hone their natural skills with such quality. However...Michael Phelps has a TERRIBLE floor routine and probably couldn't cross the balance beam with his giant feet-flippers if it were on the floor. And I suspect Simone Biles's 100 meter fly will NEVER even make the community pool leader board. The point is you can't compare these two amazing athletes. Their bodies are different, their styles are different, their training is different. My kids are Michael Phelps in a Simone Biles world. What comes naturally because of that little extra chromosome is, in many ways, exactly the 'wrong sport' for our world. So yes, it is a lot of work to figure out how to get educators and health care providers to speak Backstroke to me when they are professional experts in Back Hand Springs. Close but no cigar. That's why I'm the mom cheering on the 200 meter butterfly in the middle of a vaulting competition! We always stand out *just* a little. The trick is making sure that my kids don't loose who they are--they don't have their natural inborn swimming skills squashed--while they are learning to also work the high bars and pommel horse with some measure of grace that comes so easily to everyone else around them. (Truly, a more accurate Olympic analogy would be traditional gymnastics vs rhythmic gymnastics...'cuz it would totally be my kids in the corner twirling their ribbons on a trampoline!)
So the question remains "but...why?" from the hurting momma who doesn't understand why I chose this life. Because somewhere in our earthly history Satan planted the lie that lives that hold that little extra chromosome weren't worthy to exist. One little chromosome. Something so small our brains have no unit of measurement to compare it to. That one little minuscule speck is the only thing that separated my children from a life of value and honor that is afforded every other human on this earth by virtue of their birth. Because we are ALL created in the image of our Heavenly Father and that has nothing to do with how our bodies look or brains function. The Spirit that breathed life into me breathed life into that little extra chromosome. Because the Love that died for me, died for my children and the millions of chromosomally enhanced people like them. Who am I to say 'no' to something as beautiful as Down syndrome?
So on this day, 3/21, we celebrate the little bit of extra that makes my Michael Phelps family stand out in this Simone Biles-Bart Connors-Mary Lou Renton world. Come jump in the 'pool' with us!
Is my life different than the average family's? Yup. My kids have struggles in life that other kids don't, but they also excel in areas that many typical children struggle with. We emote well and joy comes easily; we give deep hugs and blow kisses to strangers in the parking lot. Depression and fear is not a part of our lives--sadly, both becoming more and more frequent in neuro-typical children. In this fast paced society, those extra chromosomes have forced my family life to be thoughtful and evenly paced. It is indeed a gift. We celebrate EVERY victory--from remembering to say 'excuse me' (or "beep-beep", in Isaac's case) after burping to reading a sight words at school or successfully getting on an escalator without getting eaten alive. We take nothing for granted, because for generations and generations before us no aspect of our current life was expected: "He'll never have any quality of life. It's better if you just put him in an institution and move on with your life. You can always have another baby." was standard medical recommendation.
Is it more work? Maybe. Some days it's a hard YES, but most days it's just maybe. Because here is how I look at it: Michael Phelps is an incredible athlete. There is no questioning it. Swim records and awards as long as my arm...as HIS arms! Simone Biles is also a stellar athlete. She continues to crush long standing gymnastic records with power and style. Both are matchless Olympians and have trained for hours upon hours upon hours to hone their natural skills with such quality. However...Michael Phelps has a TERRIBLE floor routine and probably couldn't cross the balance beam with his giant feet-flippers if it were on the floor. And I suspect Simone Biles's 100 meter fly will NEVER even make the community pool leader board. The point is you can't compare these two amazing athletes. Their bodies are different, their styles are different, their training is different. My kids are Michael Phelps in a Simone Biles world. What comes naturally because of that little extra chromosome is, in many ways, exactly the 'wrong sport' for our world. So yes, it is a lot of work to figure out how to get educators and health care providers to speak Backstroke to me when they are professional experts in Back Hand Springs. Close but no cigar. That's why I'm the mom cheering on the 200 meter butterfly in the middle of a vaulting competition! We always stand out *just* a little. The trick is making sure that my kids don't loose who they are--they don't have their natural inborn swimming skills squashed--while they are learning to also work the high bars and pommel horse with some measure of grace that comes so easily to everyone else around them. (Truly, a more accurate Olympic analogy would be traditional gymnastics vs rhythmic gymnastics...'cuz it would totally be my kids in the corner twirling their ribbons on a trampoline!)
So the question remains "but...why?" from the hurting momma who doesn't understand why I chose this life. Because somewhere in our earthly history Satan planted the lie that lives that hold that little extra chromosome weren't worthy to exist. One little chromosome. Something so small our brains have no unit of measurement to compare it to. That one little minuscule speck is the only thing that separated my children from a life of value and honor that is afforded every other human on this earth by virtue of their birth. Because we are ALL created in the image of our Heavenly Father and that has nothing to do with how our bodies look or brains function. The Spirit that breathed life into me breathed life into that little extra chromosome. Because the Love that died for me, died for my children and the millions of chromosomally enhanced people like them. Who am I to say 'no' to something as beautiful as Down syndrome?
So on this day, 3/21, we celebrate the little bit of extra that makes my Michael Phelps family stand out in this Simone Biles-Bart Connors-Mary Lou Renton world. Come jump in the 'pool' with us!
No comments:
Post a Comment