Be Aware or Beware! | DOWN SYNDROME AWARENESS MONTH

October is Down syndrome Awareness Month.  So what should you be aware of?  I often think it’s not what you should be aware of as much as of what you should BEWARE.  Beware of the stereotypes, beware of the myths, beware of the inaccurate information out there in the world regarding Down syndrome.
To promote Down syndrome awareness I could discuss trisomy 21 and the extra chromosome or give you the medical definition or I could quote you statistics on the number of people born with Down syndrome.  But that will give you about as much insight into Down syndrome as telling you I was born with BEY2 (aka, brown eyes).  So as a mother of a 3 year old with Down syndrome, instead of telling you what Down syndrome is, I’d rather address a few of the myths and I’d like to tell you from my perspective what Down syndrome is NOT.
A Down syndrome diagnosis isn’t the end.  It is not the death sentence that most people, including myself, imagine when they hear those words uttered by the doctor.  Rather, it’s the beginning… the beginning of a story of another child, another gift, another life.  Down syndrome does not define an individual any more than my brown eyes define me.  It is a part of who that person is- first and foremost a human being.


A person with Down syndrome is not disabled.  Rather they are a person who is able with a different set of abilities.   In our pursuit for perfection in this cut- throat society it is so easy to put labels on people rather than just seeing them as people with different circumstances.  For those of us living outside of society’s definition of “normal” and not just with Down syndrome- the fact that some people wear their challenges outwardly does not make them disabled.  That society often can only see and label these things as “disabilities” shows our disability as the human race.   Because in fact aren’t we all challenged and inadequate in some way whether it be emotionally, socially, intellectually, athletically, etc?  Oscar Pistorius, a South African paralympic athlete said, “ My mother said to us one morning, ‘Carl, you put on your shoes, and Oscar, you put on your prosthetic legs.’ And that was the last we heard of it. I didn’t grow up thinking I had a disability,” he said, “I grew up thinking I had different shoes.”

A child with Down syndrome is not a burden!  Do not feel sorry for me!  When you see a family with a child with Down syndrome or hear of a friend who received that diagnosis it is not something you need to say or think “I’m sorry” in response to. This is not to deny the confusing emotions that originally come with such a diagnosis or dismiss the pain and sorrow many women feel during this time.  Of course it’s shocking and of course we all hope for the very best health for all children but pity is not a warranted emotion.  Many women have asked me how to tell their friends or family because of this; because they don’t want the pity, they don’t want the whispers and the “I’m so glad it’s not me” to be said behind their backs.  For those of you facing this situation, it’s okay to feel the grief  and to mourn the loss of the child you thought you were going to have but hold your head high!  Because when the despair fades and when reality sets in, your child will be the light of your life and bring joy and inspiration to all of those around you.  So please don’t feel sorry for me, for Kelsi, for people with Down syndrome.  I’m happy, Kelsi is happy and we are ALL blessed!

Lastly I often hear this- parents of children with special needs have a higher divorce rate.  The reality is a child with Down syndrome does not lead to increased divorce rates.  In fact, divorce rates among families of children with Down syndrome were actually found to be lower than in families without a child with Down syndrome.  When you are forced to change your own outlook on what’s important in life you are often left feeling enlightened, happy and content.  I’ve heard many parents say the same thing and I echo their sentiments in my own life…Kelsi is the child I never knew I always wanted!
So this October-Down syndrome awareness month- please help spread the word!  Help people be aware by making a personal effort to beware of the myths and by spreading the truth about Down syndrome!

Love,

Dana

p.s. If you like this post, PLEASE show your support and help to spread the word by “Liking” Kelsi’s Corner on facebook and also consider sharing with your friends.  A little “like” will go a long way.  🙂

*Photos courtesy of Tyler Plank Photography*

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8 thoughts on “Be Aware or Beware! | DOWN SYNDROME AWARENESS MONTH

  1. Sally baker says:

    Hi, my son is 6 months old now, he was born 2 and a half months early and has downs syndrome, it was tough at first as Toby had a real fight in front of him but he was and is strong a fighter and I agree with everything you have said, Toby being diagnosed with downs syndrome has opened my eyes to what’s important in life and although I wished for him to be healthy I wouldn’t change anything about him, he is perfect, so far so good with his health except hirschsprung disease which he has a colostomy bag till his bowel can be fixed in 2 weeks, he has some hearing loss but above all that he is happy and loved, some people don’t know what downs syndrome means, I was the same but I’m finding out and learning more everyday and reading what you write helps me alot. Thank you for sharing your thoughts and information, it really does help some of us that are new to this. Sally x

  2. Rachel says:

    I really enjoyed reading you’re blog, you’re daughter is amazingly beautiful ! This will help so many people !

  3. Cynthia Lambert says:

    Hi my name is Cynthia I recently just had a baby with Down Syndrome I am 23 years old married with three other children. When I found out that my baby had down syndrome I felt scared, sad everything you can feel. But I over came al those feelings when I had her she was so beautiful in my eyes I just cried they were tears of joy and happiness . I never thought by me being so young this would never happen to me. But I am glad it did cause it changed my life and world I love you Journie .

  4. Laura Melone says:

    Love the picture of you and Kelsi, Dana! And stupid question, but where is that dark gray dress/shirt from?? It’s ADORABLE on her!!! Love reading this.

  5. Kari says:

    I have said some of the exact same things you said in this story and have felt so many of the same feelings, but you explained things so clearly and I can’t wait to share this so that more people can understand those feelings. I have a little girl just over 2 who has Down syndrome and has been such an amazing blessing to our entire family!

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