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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

Tuesday, January 4, 2011

Happy 6 month birthday Lilly!

Praise the Lord Lilly turned 6 months old today! This is a huge milestone for a Trisomy 18 baby. I remember my first goal for Lilly was to just be able to bring her home from the hospital. Then I wanted to get her to 1 month. Then I prayed for 6 months. And here we are! My next prayer is 1 year. Once she makes that she'll be one of only 10% of Trisomy 18 babies that have survived their first year.

I love when God does things that surpass my expectations. :) I love what God says in Jeremiah 33:3: "‘Call to Me, and I will answer you, and show you great and mighty things, which you do not know.’"

Check out Lilly's little double chin in today's second picture!

In the last picture, Lilly has just fallen asleep after having "tummy time" on the floor. I try to get down on the floor with her for a little while every day so she can have the opportunity to lift her head and strengthen her muscles.

It's sort of strange seeing normal babies and what they're doing by 6 months. Lilly can only smile, stretch, roll onto her side (sometimes), and lift her head off my shoulder on occasion. Sometimes I start to feel sad for her, and all of us, when I think about that. But that doesn't last long because I'm just so incredibly thankful that she is still alive!

"The LORD is my strength and song, And He has become my salvation. The voice of rejoicing and salvation Is in the tents of the righteous; The right hand of the LORD does valiantly. The right hand of the LORD is exalted; The right hand of the LORD does valiantly. I shall not die, but live, And declare the works of the LORD. . . . I will praise You, For You have answered me, And have become my salvation." - Psalm 118:14-17, 21


  1. Those are the most gorgeous pictures I've ever seen. Totally!

  2. she is so beautiful I love seeing the updates of the little one she is such and angel here on earth.

  3. So good to see God's blessing having her 6th mo b'day
    for she is God's blessing to us
    love mj

  4. Yes, indeed, Odd ball. She definitely IS God's blessing to many, many ways.

    Those pictures make me smile and give praise.

  5. Lilly, you light up my life!

  6. little granddaughter,

    your light is shining very brightly!

    and what does tabby rose have to say?

    mah mah

  7. Lilly,

    HAPPY BIRTHDAY!!!!!!!!


  8. Happy 6 month birthday little princes Lilly!!! You are the most amazing beautifull little princes i know because you always brighten my day with the stories your mother tells us about you. Thank you for sharing every moment of your life and keep on shining little star. We love you:-))

  9. Mazel Tov (Hebrew for Congratulations). What a great milestone!

  10. Beautiful photos of a beautiful little girl! Happy 6 month birthday, Lilly!!

  11. I think it's great that Lilly can do all of those things, because they are all accomplishments, considering the statistics say she isn't supposed to be here at all. Just wait and see what she'll be able to do in the future! We see progress with our Lily every day, but it takes a lot of work on both our part and hers. If Lilly hasn't received physical therapy yet, I highly recommend it. It's been such a blessing for our Lily. Please give your little one a kiss and a hug from us. Six months! What an accomplishment!

  12. I have been following Baby Lilly since Jo Williams posted the prayer request for her. She is a beautiful little girl and how lucky she is to have someone like you so dedicated to her! I do not know you but you are truly a gift from God with a gift from God. Happy 6 month Birthday, Lilly and here's to the next six months!...Brenda Rose

  13. I'm also a WW friend of Jo Williams, and have been praying for Lilly since before her birth. Thank you for sharing her with all of us. She is a beautiful gift from God,and always will be. Give her a kiss from a Grandma in Ohio.Happy Birthday sweet angel.

  14. Yeah don't feel sad. I see this from 15 months ago ago & I haven't read any further, so I don't know the whole story, journey or direct outcome.

    But I read you felt sad for her sometimes & you shouldn't have. Considering SMILE is one of the few things she could do well at 6 months, and it's obvious from those photos that she was happy, well cared for, greatly loved and that is all that matters to her. She didn't know she was any different, and she knew you loved her. That is the greatest gift and most wonderful thing you could ever do for a baby. (or anybody I guess)

    My stepson had down syndrome, and he passed at age 18 of a heart attack; and then I had my own son; he was perfectly healthy and beautiful, well loved, kind and good boy, but made the decision to take his own life when he was 15.

    You never can know what is going to happen in this life. All you can do is show the people you love them.

    Your blog is a testament to a mother's love and also, I am praying, will possibly help another pregnant woman being offered the choice of abortion or delivery of her baby because that baby has a trisomy condition, make the decision to allow her baby to live in this world even if it's for a very short time.

    I know many trisomy 18 babies just survive a few weeks, or less, but it seems even in that short time they could experience a mothers love, being held, rocked, sung to, touched, kissed, and maybe make it to that first smile. Why, that little baby then would have had a wonderful life.

    Bless you and your family and I hope you are doing all right. I see the word 'mourn' at the top, so I'll definitely keep you in my prayers. You should feel not only blessed, but you should feel good inside your heart because you did a truly wonderful thing. You are a wonderful person with a good and loving heart, and that's probably the rarest thing on earth.