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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 12, 2011

Guest post: Living with Lilly



My 9 year old daughter wrote this a few days ago about Lilly. It really touched me so I got her permission to post it on the blog. Enjoy!


Living with Lilly By T. (Lilly's big sister)

Every morning when I wake up I think, "Thank you God for another day with dear little Lilly!"

But then the day after Lilly was born, I decided that all our lives are fragile as her life is. God is so merciful and kind to spare us. Another thing the day after Lilly was born was that I would sit perfectly still holding her for hours thinking, "If God is going to take her home today, I will want to have spent plenty of time with her."

But then I realized that God could do what He wanted with her, taking her any time He pleased, and, of course, for His own glory! Now I rest my hope fully on Him. The day she had problems (a few days after her birth) and turned blue, Mamma and I dressed her in different lacy dresses, and, Mamma made a little gift tag that said, "On loan from God" and took pictures of her in the different clothes. We thought it would be our last pictures of our dear little Lilly.

But she is truly our little survivor! She also survived a recent attack of massive heart failure! She is true to her nickname,"Little Firecracker".

She is now very happy little girl, and loves to interact with anyone who will take time to talk and play with her! She also has become very good at smiling and cooing! She is getting a tooth - her first one!

My favorite time is early in the morning at 6:30 when I take Lilly from Mamma and play with her until breakfast! I learned how to feed her through a dropper!

God has spared little Lilly this far, and He will to the end.

11 comments:

  1. Have you read it, Lilly?

    Tabby

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  2. What a sweet big sister Lilly has! -from Annabel and Ava

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  3. Blessed with 2 special daughters.
    What a beautiful blog and a beautiful picture of Lilly. You sure can't tell she was so recently ill.
    Praise the Lord!

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  4. Very sweet post - thank you for sharing. :)

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  5. Shew! that put tears in my eyes! Thanks for sharing!

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  6. What a tender-hearted girl... and such a big helper! I've got tears in my eyes over the sweet sentiment of that post!

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  7. I kept waiting for your daugher's post, it sounded so grown up. Then I realized that it was actually your daughter who wrote this. You have a treasure and a future author in your midst. What an incredible spirit! Praise Jesus!

    CWH

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  8. tabitha,

    you are a treasure! please read your post to lilly.

    love,
    mah mah

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  9. Lilly has truly touch T and that will last her for the rest of her life. My experience has been that when you have this kind of relationship with a child of special needs, that you bring that beauty and caring to other children of special needs for the remainder of your life. I've done some informal personal research and have seen this from special doctors who seem to truly understand special needs children (they somewhere in their lives had a relationship with a special needs child) as well as have seen it with my daughter who is a counselor at the YMCA in the summer. She's been recognized as one of the counselor's that work's especially well with a child with autism.

    Bravo T!

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  10. Big kiss to T. What a beautiful letter and what a wonderfull sister Lilly has:-)

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  11. Little Lilly... you are so blessed to have such a caring Big sister! I think she is your ''earth angel"!
    T. you did a beautiful job writing your thoughts about Lilly. You keep writing and keep [in your own words]...''rest my hope fully on Him''!

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