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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, July 4, 2015

Happy 5th birthday, Lilly!

Lilly - 1 year old
 Dear Lilly,

In honor of your 5th birthday, here are 5 things I miss about you:

1) your kisses, smiles, laughter, and snuggles
    1a. the way your crazy stick up hair tickled my neck and chin when I held you close

2) your love for your family - how you would watch your siblings and parents and smile at them

3) your enjoyment of experiencing new things and sense of wonder

4) watching you work/play hard - you worked so hard in your therapy sessions and in your own playtime

5) nighttime - laying you on the bed and seeing you look up and smile at the ceiling fan and begin your nightly chat with it.  Then seeing your happiness at being put in your little co-sleeper next to my bed.  My falling asleep watching you sleep.

Wait a minute, only 5 things?  I know, I know, I said 5 because of your 5th birthday.  But Lilly there's so many other things - like you playing your sock trick (yes you Miss Sneaky Lilly), or you grabbing onto the frog on your bouncy seat and playing music, or me getting to dress you for the day, letting you play in the bath, taking you for walks, dancing around with you, etc etc etc.  Maybe I could get it all in if it were your 500th birthday?

I will always love you, my little firecracker.  I miss you so much but am comforted knowing you are in a perfect place.  I can't wait to see you again one day!

Love always,

Lillian Eva


  1. I miss her crooked grin, her big trusting eyes, and her upbeat spirit. always a trooper and example of being content whatever her circumstances. Bet granny baked her signature sour cream cake today for Lilly's birthday!

  2. Who knows what wonders we would have been talking about today along with gaspacks and thermostats!
    Ours is not to wonder why, but I do. I miss you Lilly Firecracker.

  3. Happy Birthday, Lilly. I know J would love to see you someday. :)

  4. Happy Birthday, Lilly! There will be an amazing reunion one day in heaven!

  5. She is so lovely:) Praying for your peace and comfort this week!

  6. She is so cute! I hope you’ll meet her again. You know dear my niece also turned 5 on the same day. My brother hosted the party at the kid’s party city locations NY and invited her kindergarten friends to this party. It was an enjoyable day!