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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

Friday, June 20, 2014

Trisomy 18 news article and a gravestone fundraiser

The lilies in Lilly's garden are looking spectacular!  I love the burst of color I see each time I look out the window:


Some of the lilies are so tall that they are bending under the weight of the flowers.  But they're all still beautiful.

Faith is a 5 year old girl with Trisomy 18 and Monosomy 21.  I read on her blog this week, that her dad, Brad Smith, published an article on entitled "We Thought Doctors Were Helping Our Daughter With Trisomy 18, But They Were Slowly Killing Her."  Brad wrote about how when Faith was younger, he had a chance to ask Rick Santorum for advice about children with Trisomy 18.  (Rick's own daughter with Trisomy 18, Bella, recently turned 6.)  What Rick shared completely changed the way the Smith family cared for Faith.  In that journey they also learned about something scary called "Slow Code."  What is "Slow Code?"  Brad writes "it is not care, but lethal neglect or intentional death."  Click here to read Brad's entire article.  This information is SO important if you have a child that doctors consider "incompatible with life."  Here is a picture of Faith and her family with Rick Santorum:

The Smith family and Rick Santorum
Last night, I read about the need of a family of a Trisomy 18 angel.  Nalah lived 26 months with full Trisomy 18.  She died December 2010.  To date, her family still has not been able to afford a gravestone for Nalah.  They are now fundraising for one, hoping to have it before what would have been Nalah's 6th birthday.  You can read more about Nalah and donate (any amount) here:
Here is a picture of Nalah:

Here's another sweet picture of Nalah that I found on her mom's Facebook page:

Nalah and her doll
This request really touched my heart.  I love that Lilly's gravesite is marked.  I designed her gravestone before she was even born.  How blessed we were that she lived 17 months before we ever had to request that stone.  I can't believe Lilly will have her 4th birthday very soon.  We'll be visiting her grave to take her a little gift and send some balloons up to her.  :(  I've suddenly been feeling like crying whenever I think about it, the past few days.  I guess it's because it's a significant anniversary. People say the anniversaries are always the hardest.  It's true.  For me it's Lilly's July 4th birthday and December 15th angel day.

Here is a picture of Lilly's grave I took last March:

I look forward to going back and seeing the green grass and changing out her spring tree for a 4th of July decoration.

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