Disability? What Disability….the life of a child with Down Syndrome!


October is Down Syndrome Awareness Month!  Just like April is Autism Awareness Month, the parents of children with Downs want the world to know that their children are just as special and as typical well as typical children.  I have a friend that I met on facebook with a beautiful little girl with Down Syndrome.  This is her story as told by her mom.  She’s a cheerleader, she’s a student……..she laughs and cries…..she gets sick and bounces back just like all those neurotypical chromosomal regular children out there……show her your support by wishing her a Happy Halloween and trying to imagine your life as a parent of a child with Down Syndrome or even as a person with Down Syndrome.  All they want is love…..can you give them that?

Mila’s Story

When Alena first asked me to write on her blog this month for Down Syndrome Awareness Month, I thought, “oh, cool!” But then I kept getting stuck thinking, “what do I write about?” There are so many things I could write about Down Syndrome and I didn’t know which angle to take. So after procrastinating for pretty much the entire month, I decided to write what I know most about Down Syndrome; my daughter Mila.

Imagine for a minute, being born seven weeks early with a heart condition and a chromosomal condition that your parents knew nothing about and were completely terrified. Then imagine at a whopping 4 pounds, you had to undergo two emergency bowel surgeries and ended up with an ostomy bag for four months. And then imagine going through another bowel surgery to reverse that ostomy, recovering, and then turning around a month later to have open heart surgery with serious complications.

How do you think your life would be? And then try and think about seeing specialist after specialist every month or so, having ear tubes and eye tubes surgically implanted on a regular basis, having blood drawn every three months and all of this before you could even speak? Assuming you handled all that well, try doing all of that while submitting to endless therapy sessions, feeding sessions and school. And then just when everything seems to be clicking along; bam! You now have to have a spinal fusion and be in a body cast for a year. You have just imagined what has in reality been my little Mila’s life. And I don’t know about you, but if it were me, I would be an incredibly miserable person. But Mila is amazing.

Mila is an energetic, silly, busy ten year old who happens to have Down Syndrome. And she is the coolest person I’ve ever met. She is full of life, adores her family, her pets, rides horses, cheers on a competition cheer team, takes hip hop lessons and piano lessons and loves to read and do homework. And does all of this (well, MOST of it) with a smile on her face and a limitless amount of energy. Mila is full of empathy for others and like most people with DS, hates to see other people hurting or crying. She will approach any person and tell them that she loves their outfit or their shoes or will nonchalantly and without trepidation talk to a person in a wheelchair or someone who looks very different than most people. She has taught me more about life and love, acceptance, compassion and strength than any other person I’ve ever met. Don’t get me wrong; Mila is not perfect. She is a typical ten year old, complete with attitude and the occasional eye roll. She also has her tantrums and is very stubborn but that stubborn streak is most likely why she is still with us today. So now imagine your heart being so full of love and pride, you feel like it could burst.

And imagine how every little milestone is a precious gift. You have just imagined my life

~Deanne

WOW I dunno about you, but to me Mila sounds wonderful.  You see regardless of the “differing ability” or the “disability” as the public calls it, our children are just like yours!

Check back tomorrow with a photographic collage of Mila to see!!!!!!   Let’s also see how she did with Trick or Treating!

Why did Deanne attract me as a friend? Because she lives her life without reservations!  She lives her life to the fullest.  Tomorrow I’m going to tell you how the Down Syndrome Community helped the Autism Community and EVERY SINGLE CHILD EVER to enter into the public school system!

 

HAPPY HALLOWEEN…………..Enjoy tonight as if you were the child!

 

~LenaJeanne

 

PS>….we will be back in by 9pm so I can watch my Supernatural…MAN I love that show! 😉

 

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2 thoughts on “Disability? What Disability….the life of a child with Down Syndrome!

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