Wednesday, October 1, 2014

Fear, Love, and Acceptance: Down Syndrome Awareness Month





October is Down Syndrome Awareness Month.  This is our 5 year of celebrating all of those rock that extra 21st chromosome.  I am not going to write about all sorts of facts and statistics.  I have done all of that in the years past. This year, I will share photos of our day to day lives.  To show that Ellie is more alike other children, than different.




I am here to tell you that it is all going to be okay.

I know that shock, guilt, and fear that you felt when your child was first diagnosed with Down syndrome.  Whether in utero or shortly after birth, like with our Ellie.



It is okay to feel joyous at the birth of your child, yet scared and unsure of what your life will be like.  How it is much it different than the one you envisioned.  It is okay to mourn for that child you thought that you would have, the child that never was.




It is okay that you harbor guilt over those first feelings.  It will pass. It may take days.  It may take months.  Or like me, even years.  Yet, it will pass and you will learn to forgive yourself.


Trouble!
There is a reason that there are so few blogs about older children, teens, and adults with Down syndrome.  It is because life is happening.  Life just like any other child, with or without and extra chromosome.  The rawness of it all wears off.  We become immersed with family outs, play dates, after school activities, and yes therapies and the occasional doctors appointments.



Loving school!


There will be days when you cry.  Nights where you lay awake worrying.  There will be times where you witness something seemingly innocuous and it will send you into tears.  Times where you scream “why does it have to be so hard for her?!”

Hold on.


Making friends.


For there will be times of great joy and celebration.  That moment when your child sits up and walks after months of therapy & hard work.  There are the times when your child learns to color between the lines.  She learns to read. Her first play date.  Her first sleep over.  Her first team sport.  Her first job. Her first love.  Those triumphs are that much sweeter as you know how hard she has worked and persevered.  

Ever the fashionista. 

This is a month for Down syndrome awareness.  A time for us to celebrate our loved ones who have that extra 21st chromosome.  A time for us to educate others about the wonders that extra chromosome brings to our children, grandchilden, siblings, nieces, and nephews.  I wish that there was more comprehensive, positive information out there when my Aunt Peggy was born.  I wish there was more support for my grandparents, the trail blazers.  We have come a long way since 1958, but still have a ways to go.






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8 comments:

  1. Love. Love you, this post, & that girl of yours!

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  2. Most excellent.......great photos too!

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    1. I love your post too! I am going to steal your idea of posting a daily pic showing our every day life rather than write every day

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  3. Love this post friend! Ellie is beautiful and smart and just amazing. Love getting to keep up with your family from afar. One day we will have to get together and play. :)

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  4. This post made me giggle! I love her cute little trouble making ways. I was at the airport, and i pointed out a little boy, a baby, to my little girl. That was it, I said, "Look, a baby". I then noticed that the boy had an extra chromosome, but he was so cute! It was not the reason for singling him out, only because he was another baby for my baby crazed toddler to see. I have worked with a lovely boy who also sported the extra chromosome, he was a beautiful little soul and on his 5th birthday I went to see him and he could say my name! That was a joyous occasion! We are all born with differences. My daughter is epileptic and takes medicine every single day. It doesn't matter because her interests and personalities are who she is. You are a wonderful, inspirational parent for anyone out there dealing with this! I salute you!

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    1. Niki, did you cry the happy tears when your little buddy said your name? I cannot wait until Ellie can say her own name :-P Does your little girl get into as much trouble as my Ellie? I bet she is spunky :-) You are right as all people are unique in their own ways. We need to embrace that! Thank you for your kind words, Niki

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