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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

Thursday, July 4, 2024

Happy 14th Birthday, Lilly!

Happy Independence Day/4th of July and Happy Birthday, Lilly!  She would have turned 14 years old today if she were still alive.  I'm so curious what she would have looked like and acted like at 14.  I miss her.  💕😇

I still make a cake in memory of Lilly's birthday every year:


I recently planted fresh flowers in Lilly's memorial garden, so everything is bright and cheerful.  My Mom gave me the patriotic butterflies:

My Dad and Stepmom sent lilies.  They're still slowly opening:


💖🤍💙

Monday, March 18, 2024

It's Trisomy 18 Awareness Day

Today, March 18, is Trisomy 18 Awareness Day.  What is Trisomy 18? It means there are 3 of the 18th chromosomes in the body, instead of the usual 2.  That naturally causes real problems for the body.  Early help can give these babies a chance to live longer.  Lilly lived 17 months and I was grateful for every minute of her precious life. 💙👼



Friday, March 8, 2024

March is Trisomy Awareness month

SOFT (Support Organization For Trisomy) (soft.org) is a group that has been educating and helping families with children diagnosed with Trisomy 18, 13 and related chromosomal disorders for over 40 years.  I found them so helpful during Lilly's life and I still get cards from them every year, remembering her.  The month of March is "Trisomy Awareness Month."  See soft.org for plenty of resources.

For the entire month of March, I will be donating, to SOFT, 90% of any royalties I earn for my book LillyBear Goes to Chincoteague.  


My book is available on Amazon.com.  It is a print-on-demand book and can be ordered from whatever country you live in.  


Of course feel free to just make a contribution to SOFT directly! 😉