A True Test of Acceptance

I heard an absolutely fascinating story today of a mother and a baby and Down syndrome.  It was NOT one of those “a friend of a friend of a friend” kind of things.  The story-teller relayed this story to me about her family member because I’m the Mom of 2 boys with Down syndrome.  And, honestly, this story has rocked me to the very core and changed my concept of true acceptance and advocacy.

*     *     *

A  23-year-old woman gave birth to her first child.  Shortly after birth, her newborn baby was diagnosed with Down syndrome.  Questioning the doctors about whether this might happen again, she was told that the occurrence of Down syndrome is merely an accident.  A mistake in the over replication of the 21st chromosome.  She and her husband were advised that their risk for having another child with Down syndrome was no greater than for anyone else and, because of her young age, they should not worry about the unlikely recurrence.  Shortly thereafter, they conceived their second child. 

Sadly, the second pregnancy ended in a miscarriage.  After examination, it was determined that the unborn fetus also had Down syndrome.  The mother was referred to a geneticist where it was discovered that all of the cells in her womb — ovaries, uterus, fallopian tubes, eggs etc.  — carried 47 chromosomes instead of the usual 46.  At the age of 25, this mother was diagnosed with Mosaic Down syndrome.

Did I hear a collective gasp…  Or was that just me?  AMAZING story, right?  Extending it’s meaning: where there is one, there are others.  How many of us might be walking around with a little extra chromosomal material here and there?

The impact of mosaic DS on her development was obviously minor.  After the diagnosis, several of what she thought of as just her quirky little characteristics suddenly made sense.  She has the space between her big toe and the next.  She has small ears and narrow ear canals.  She has the simian crease in one hand.  These are all things that are relatively common in the DS population — but they can also occur in the non-DS population  so no one thought anything of it.  Otherwise, her development, her education and her life were  completely “typical”. 

Can you imagine finding out at whatever age you are now, that YOU have Down syndrome?  How would you react?  Would you hide it from people?  Or, would you tell the world?  Would you embrace the information and make it part of you?  Or, would you mourn the loss of your typical self?  How do you think your spouse would react to your new diagnosis?  How do you think your boss might react? Would this news change the way you see yourself? Would it change the way you see others with Down syndrome?   Would it change the way others see you?  Would these mind-shifts be for the better or for the worse?

Is  this one of those faulty “it’s fine if it happens to you but not if it happens to me” thought processes?  Is it OK for your child to have Down syndrome but not OK for you to have it? 

I have been pondering this happenstance all day.  What an amazing thing to discover.  What an opportunity to change the way the world sees people with Down syndrome!  What an incredible epiphany for me, to imagine that I, my spouse, my mother, boss or neighbor might have Down syndrome and we just don’t know it.  To contemplate that absolutely any one of us could be carrying a little extra something in our genes without knowing it just levels the playing field for me! As an advocate for my children and for all people with Down syndrome, I not only accept whole-heartedly but I embrace the fact that my children have  Down syndrome.   I also believe that I’d be OK with finding out that I have Down syndrome.   As a matter of fact, I’d likely rush the podium and scream it out for the whole world to hear, “YES, I have Down syndrome and, TRULY, we are all more alike than different.”

Think about it…  I mean really give this some thought.  Could you accept a diagnosis of Down syndrome for yourself?

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About Maggie

I'm a stay-at-home mother of 3 children including a 15-year-old daughter, the Old Soul, and 11-year-old identical twin boys who've been blessed with an extra 21st chromosome (aka: Down Syndrome). I happily spend my time doing all that I can do -- breaking the proverbial box wide open -- to foster my children's development and then sharing what I learn with you through this blog.
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7 Responses to A True Test of Acceptance

  1. maggie says:

    yes, i mean, i’m 32 and i’ve lived all those years of my life so far as the person i was born to be. if all of a sudden someone told me i had down syndrome, i would be like that is weird, but it wouldn’t change who i am or how others view me. maybe if i’m functioning like a “typical person” the diagnosis wouldn’t make a difference because it hasn’t had an impact on my life. or if i’m having trouble learning and have always been behind, maybe i would be happy to finally have a reason for all the issues.

    • Maggie says:

      I have an uncle who was just diagnosed with ADHD. It was like someone turned the light on his life. He said it explained many of the struggles he’d had with school and other things over the course of his life. Like you said, an answer finally!

  2. Tanya Holland says:

    As a mother of a son with Downs and also another son with autism, I’m with you…I would shout it from the housetops!!!

    • Maggie says:

      I’ll climb up on the housetops with you. It’ll be me you and Santa in this cold. You know, the same goes for DS as for Autism… we are all more alike than different. And the little differences can be found in those with and without DS, with and without autism. It’s a level playing field as far as I’m concerned!

  3. Casey Morton says:

    This made me happy on so many different levels. Thank you for posting this A, and B, I infact was born with Mosaic Down Syndrome. And, have a son of my own. I can fully empathize.

    • Maggie says:

      My hats off to you Casey! That is awesome. You are the best of both worlds and the future of both! Truly… we are all more alike than different. Why folks focus on the small differences versus the sweeping similarities blows my mind. Thanks for taking the time to reply.

  4. dusty says:

    it really makes me think about today, tomorrow, the future and the possibilities. I also just finished reading Hope Edleman’s book The Possibility of Everything

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