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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

Saturday, October 5, 2013

Capture Your Grief - Days 4 & 5

Day 4: Legacy.
Your child's legacy.

Lilly's legacy is both "earned and learned."  Above are some of her things that Tabby and Hunter picked out to keep and cherish.  Tabby choose Lilly's little quilt she died on, her stuffed bunny, her  doll Sunny, and small caterpillar.  Hunter choose her dog Jo-Jo and big caterpillar Argyle.  I will allow Solomon to choose something when he is older.

But these are just things.  Things that Lilly never even played with like a "normal" child.

The biggest legacy she left us was that my family and I now truly see all special needs children as a GIFT.  Not broken or defective.  Not children that we need to be uncomfortable or squeamish around.  Not children we try not to stare at.  No, we look at these children with a big smile now and think how blessed their families are.

How we would love to see our little girl's big beautiful smile once more.

Day 5.  Memory.
What is the first memory of your child that comes to your mind?

It is a jumble.  It depends on the day.  The minute.  The hour.  I can clearly see how Lilly looked when I found her dead.  I remember watching her 3 distinct times when she almost died - wondering if that little soul would leave her body then.  I can't shake the bad memories.

But I don't have one good memory that comes to mind.  That is not just one.  I've been pondering this question for awhile.  I have so many Lilly memories.  Days, smells, landmarks, sounds - these all trigger Lilly memories.  Most are good.  For the most part Lilly was always near me.  In my arms or lap.  Strapped to me in a baby carrier.  In her bouncy seat by me in the kitchen.  On her mat next to me on the floor.  At night I always snuggled and played with her before laying her in her co-sleeper next to me.

Her hair.  Her soft hair that stuck up wildly in sections.  I can almost feel her hair gently tickling my neck and chin as I remember holding her.  I loved that feeling.  The very last time I held her, I picked her up out of her wee white coffin and held her against me and felt her soft hair.  The rest of her body was heavy - it did not feel like Lilly anymore as it was prepared for burial.  But her hair - that was still Lilly.

One of our very best family pictures is of us all by Lilly's coffin with me holding her body.  Why did that have to be one of our best?  I am sitting here tempted to post it.  But I may have depressed you enough.  Instead:

I mentioned in my last post about Laura Ingalls Wilder having a baby boy that died young and how she never mentioned it to people.  A reader reminded me that Laura had also had a baby brother that lived a very short life.  I remembered reading that when I was young.  But when I also re-read it as an adult, post Lilly.  Thinking about Ma Ingalls and what she must have felt losing that little boy feels a lot different to me now than it did when I was younger.  I think of how they buried their little baby in a lonely place and moved far away.  How that must have broke Ma's heart further to leave!  And how sad she did not even have a photo of her boy to remember him by.

How very grateful I am for all my Lilly pictures and video - in full color.  What a precious blessing, one which I continually praise the Lord for.


  1. Oh I love the sweet picture of you and Lily! I love reading about her and you and your family's experience. You are a beautiful testimony and I am so glad that you choose to share her with the world. I am so grateful also for the pictures of Jonathan I cherish them and enjoy them everyday!

    1. Thanks Tesha! The pictures I've seen of you with Jonathan are some of the most touching pictures I have ever seen.