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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

Sunday, March 18, 2012

Trisomy 18 Awareness Day - March 18

The month of March is "Trisomy Awareness Month." The different trisomies then have their different days. Today is March 18 so it is Trisomy 18 awareness day.

I don't know who assigns different things the different colors of ribbon which we see so much of now. But whoever did, choose blue for Trisomy 18. My daughter and I wore blue ribbons on our clothes today. I also put a little blue ribbon on our "Lilly bear." (I found this bear in a thrift shop and it just called to me. You know - it's so fun that Lilly was born on July 4 - but I have to be careful not to get sucked into buying every red, white, & blue thing I see!)

There is a section of this blog that only I can see called "Stats." It tells me several things about the blog including how many people view it each day and what the most popular posts are. On September 9, 2010, I did a post describing Lilly's Trisomy 18 features. That has remained the post I get the most hits on. You can read it here. Be warned! The Lilly you see there is super skinny! (She had dropped from her 5 lbs. 4 oz. birth weight to just under 5 lbs.) After you look at those pictures, be sure to scroll to the top of the blog and remind yourself of how far she came in her 17 months! (13 lbs., fat rolls, smiling, and interactive!)

The day after Lilly died, another little girl named Julia, that had Trisomy 18, suddenly died. I've since gotten to know her mama. I love to see pictures of Julia - she reminds me a lot of Lilly. And interestingly, Julia's family lives where I grew up. Her mama did a good post today called "18 Things You Should Know About Trisomy 18." You can read that list here. Julia's mama liked our idea of doing a memory tree and you can see the one they did for Julia here. The tree style is completely different from Lilly's tree and very pretty. Julia's mama sweetly sent us an ornament like one she hung on Julia's tree - it has a butterfly and says "Hope." It will be perfect for May and maybe June too when we put some butterflies on the tree.

"Hope" is a wonderful thing. There is so much negativity about having a child with a trisomy. Even though they do not have "normal" lives, I can tell you, these children are an enormous blessing. They will change your life and make you a better person. They will touch people all around you. Or even all over the world! (I am still amazed at how many readers this Lilly blog has of people from other countries.) If you find yourself pregnant and are told your baby has a trisomy - don't give up and think the worst. Have HOPE.

"Rejoice in hope, be patient in tribulation, be constant in prayer." - Romans 12:12

1 comment:

  1. Thanks for sharing! I had a sick little boy at home today but we made it to the cemetery to add new flowers and a T18 bracelet to Julia's stone. Hope you and the family had a good day today. Hugs!