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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Wednesday, March 5, 2014

It's Trisomy Awareness Month (2014)

Lilly at 16 months

March is known as "Trisomy Awareness Month."  This is something I never even heard of before I had Lilly, so I hope to do my part to help raise awareness in some way.

First though, to read an excellent summary of Trisomy Awareness, please click over to this post on Jenny's blog:
Jenny is the mama of Julia, a little girl who had Trisomy 18 (like Lilly).  Julia blessed her family for a little over a year, before leaving this earth the day after Lilly did.

March 18 is the day this month that is focused on Trisomy 18.  I have a grand idea in my head of how I would like to spend a part of that day: a giant balloon release (with each balloon representing a child that had Trisomy 18) out on a big field, handing out informational brochures, and have someone from the local news station in attendance and filming.  Of course when that news footage aired, it would only be a 30 second sound bite and maybe brief clip on the news, but that would be OK! 

Now is this idea going to happen?  Sigh.  Not this year.  I just don't have it in me right now.

But I do plan to do a book giveaway on March 18, along with another little goodie or two.  I will do a post about that next week, with the details and how to enter.

I occasionally get e-mails from pregnant women who are struggling with whether or not to abort their baby who has been diagnosed with Trisomy 18.  Sometimes the woman wants to keep the baby but everyone around her is pressuring her to abort it.  Sometimes she just doesn't think she can deal with the baby.  I'm sure you know how I respond. 

No matter how long these children live, THEY ARE WORTH IT!!!  They will bless your life in countless ways.  You will have no regrets. 

Lilly - 4 days old
Lilly - 17 months old

These babies may be "defective" according to the world, but they truly are perfect in their own way.

"For you created my inmost being;
    you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
15 My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be." - Psalm 139: 13-16

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