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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

Wednesday, February 2, 2011

A prayer and a challenge

I wanted to share a prayer that K.F., a brother in Christ, e-mailed to me. I was so touched by this prayer. And challenged. K. poses some of the same questions that I have been wrestling with since Saturday.

"It is my personal prayer for Lilly and the whole family that our loving Father will heal that beautiful little soul. May His wonderful love and peace rain down on all of you. I thank Him for her because she reminds us believers of that question we should CONSTANTLY ask ourselves: what REALLY matters? Lilly is a gift from God to all us believers if we stop long enough to pay attention. Why? Because she is telling us the answer to that most important question with her life. Love God. Love neighbor. Love in a cross-shaped Jesus-centered way. This is the law and the prophets. What else matters?"

Lilly is having a good morning. Her temperature is normal. She had a big "blow-out" and needed a birdbath to get her cleaned up properly. The best part was she cried and fussed during it. Finally! She had the strength to let her fussing be heard. I held her for awhile to calm her and she fell back asleep. They are continuing to cut her oxygen back. Lilly will have another echo later this morning. I can't wait to find out what that shows.


  1. So happy she is improving!

  2. Beautiful thoughts and a beautiful prayer! Maybe Lilly will kicking socks or a blanket off soon!!

  3. I think of so many things to say to you but it all is sort of striving after the wind and boils down to 'Thank Jehovah God' for he is everlasting

  4. It is so abundantly clear that you love your baby. As I have reflected on your journey, I find myself praising the Lord for Him giving you this beautiful gift.

    I lead a Teen Community Bible Study and each week I ask the girls to write their prayer request. One of my girls who also attends CCS, specifically wrote for us to pray for Lilly. Hope that blesses you!

    In Christ,

    the W-H's

  5. Thank you for sharing the awesome prayer. We are all praying for your Lilly!

  6. Cry out loud Lilly! I like to hear you anytime:-)

  7. May I add one more thing to this prayer......
    (this is what keeps playing across my mind and heart)


    James 5:16
    Confess your faults one to another, and pray one for another, that you may be healed. The effectual fervent prayer of a righteous man avails much.

  8. What a beautiful prayer from your friend! I know many heartfelt prayers for Lilly and your family have been lifted up to our Lord- and He has heard them All! How awesome to know so many Christians are embracing you all in prayer! - When Christians Unite God's glory shines bright!
    So glad Lilly is improving and her 'fire-cracker' spirit is showing again!
    Love you all!

  9. Thanks for the updates - keep on fighting, little Lilly!!