Monday, March 21, 2011

21/31

What is Down syndrome? It depends on who you ask. If you ask a doctor, he or she may tell you it is the number 1 genetic disorder that people are born with.  Some people might tell you they were once pregnant with a child with Down syndrome because 90% of them are aborted before they even take their first breath. But, if you asked someone who has Down syndrome what do you think they would say?  My daughter has Mosaic Down syndrome.  She is almost 7 years old and I think if she had the words in her vocabulary she would say, "My life is no different than yours.  I am no different than you. I just happened to have an extra chromosome on the 21st chromosome."

If you were to ask me I would describe Down syndrome as this.

My child moves
at her own pace
She sees the real people
She has learned
to overcome many
obstacles
Her life has been
on display
as doctors
therapists
teachers
all tell her
what to
do to
learn
But her life
is FULL
Her love is
IMMENSE
You are missing
out if you don't
know her--
LOVE her--
She is special
but not
because of
an extra
chromosome
She is special
because
she's
EMMA.

3 comments:

  1. That is beautiful. She is so very lucky to have you as her mom. Each child is unique and brings so much to the lives that surround them. Emma sounds like a very special girl.

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  2. What a lovely poem about your daughter. I have friends with a two year old Down Syndrome child; I will share this with them. I especially like the thought that your daughter is not special because of the extra chromosome, but because she's Emma.

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  3. Yes, as fewer and fewer Down syndrome children are born - because of fear - we will need to maintain the vision of who these people with something extra are especially because I worry that our world is going to become less and less able to remember how to be a place for the grown up your daughter will become.

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