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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, February 11, 2012

Lilly's sock monkey is ready to box

This crazy looking sock monkey in the picture was Lilly's. (I now keep it in Lilly's bed.) My aunt got the sock monkey special made for Lilly for her 1st birthday from an Etsy shop called hoffeeandanuffin. It was perfect for Lilly - red, white, and blue - those July 4th colors. The monkey has detachable hair bows on the top of its head. Unfortunately Lilly never had enough hair for them.

A few weeks ago, I picked up Lilly's blue hand splints from my nightstand. Then I found myself picking up sock monkey and putting the splints on the sock monkey's hands. It felt good to put them on! I miss Lilly's bedtime routine so much and putting on those splints were part of it. Every night after I put them on Lilly, I would hold her hands and she would box her daddy with her "boxing gloves" on. She found that amusing and would even box daddy all by herself. After I put the splints on sock monkey, I had it box my husband. It wasn't the same as Lilly doing it of course, but it brought back fun memories.

A few days ago, we received our quarterly issue of The SOFT Times. This is a support organization for Trisomy 18, 13, and related disorders. There was over a page dedicated to Lilly. It was so sweet seeing the pictures and text I submitted of her in print, knowing that others would read her story.

On the opposite page of Lilly's story, was a story about Lakaia. Lakaia was a little girl with Trisomy 18 that lived to be 8 months old. Her family lives in a town near us and I met her mother at one of Lilly's hospitalizations last May. It was special seeing both girls on pages by each other. I wish our girls had gotten to meet each other on earth, but it never worked out. But I'm sure they're friends in heaven now.

In my last blog post I mentioned a little girl named Emily, who has Trisomy 18 and is 6 years old. Yesterday, I received in the mail a package from Emily's two older sisters. Inside were beaded felt hearts that the girls made for Lilly's memorial tree. (February's theme is hearts.) I was so touched and after taking a picture, hung them on the tree. Thank you girls!

"How precious is Your loving kindness, O God!Therefore the children of men put their trust under the shadow of Your wings." - Psalm 36:7

1 comment:

  1. I think of Lilly and your family often and am glad to be able to continue to follow along with Lilly's story. Thank you for your willingness to share these very personal moments and memories on your blog. Red, white, and blue sock monkeys will forever remind me of Lilly. I'm glad to have been a part of her precious life.

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