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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

Sunday, December 15, 2013

Day 17 - Remembering Lilly - December 2011

This is my last post in a 17 post series summarizing each of Lilly's 17 months of life.  To learn more details about Lilly's daily life, just click the appropriate month and year of my Blog Archive on the right side.

December 4, 2011 - December 15, 2011

Though Lilly didn't make it to Christmas day, in her 17th and last month, she was with us during much of the season's preparations.

We got to take her to the Christmas Tree farm to cut a tree with us for the second year in a row.  She LOVED a decorated tree - I think she liked the lights best.

at Jordan Lake Christmas Tree Farm

Lilly was my most patient child with getting her pictures made.  Of course she had lots of practice!  Because I never knew when her last day would be, I took a picture of her almost every day of her life.

Lilly's new angel tree ornament
love those lights!
sweet girl
huggable little girl in red

Lilly continued to get physically stronger as the days past, recovering from her heart surgery the month before.  However, she began to get that pesky extra congestion again.  Out came her arch enemy - the nebulizer.  That turtle mask made her so mad at times!

that little hand is trying to push the mask off!
Then one day her breathing had that "weirdness" to it that scared me.  It wasn't awful but it wasn't right.  So I whisked her off to the emergency room and asked for a chest x-ray.  It revealed some "white fluffiness" in her chest.  The doctors were ready to do whatever I wanted.  They asked if I would like to check her into the hospital for observation.

Looking at her in the ER, she was smiling and acting happy.  I knew how much she HATED being in the hospital.  (Some people don't think T-18 children can communicate what they feel about things.  Oh my, are they wrong!)  I decided to take her back home and monitor her closely.  I also contacted her cardiologist.  We had an appointment with a pulmonologist the next day and the "fluffiness" had not grown.  Lilly was still acting well.  This doctor had grown to love Lilly and asked me to check her in since she knew that Lilly could take a dive so quickly.  I promised to if she seemed any worse.

She never did seem worse.  In fact she seemed to be getting better.  On her last day though, she did have a "barking" kind of cough that scared me - but ... she only coughed 2 or 3 times that day so I figured I shouldn't worry too much.  Pulse ox numbers were good.  Lilly had physical therapy and enjoyed it.  In fact, her therapist said that was the best Lilly had done since coming back from surgery!  Lilly happily played in her bouncy seat wacking at the animals hanging there.  She was chatting away at them.  I took a short video and posted it on this blog.  She gave me so many smiles that day - any time I was near her and talked to her or looked her way.

The day proceeded normally except that Frank came home earlier than usual that afternoon from work, because he had had a dentist appointment.  He played with her a little and then I had him lay her down for her afternoon nap on her play mat.  (She liked to have tummy time with her mirror and things and then would fall asleep after a bit.) 

I let Lilly nap a bit longer than usual that evening.  But when I went to wake her, she was dead.  The nightmare that I often had and replayed in my head had finally happened.  God had called her home.

"Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be." - Psalm 139:16

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *  * *

Today we went to Lilly's grave and took her her Lilly colored Christmas tree.  LillyBear came with us too.

I know this:

"He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end." - Ecclesiastes 3:11

I am glad today is about over though.  My heart just plain hurts.


  1. "Right now all I can taste are bitter tears
    And right now all I can see are clouds of sorrow
    But from the other side of all this pain
    Is that you I hear, laughing loud and calling out to me?

    Saying "See, it's everything you said that it would be,
    And even better than you would believe.
    And I'm counting down the days until you're here with me,
    And finally, you'll see."

    But right now, all I can say is "Lord, how long
    Before you come and take away this aching?"
    This night of weeping seems to have no end.
    But when the morning light breaks through,
    We'll open up our eyes and we will see

    It's everything that He said that it would be
    And even better than we would believe
    And he's counting down the days 'til He says "Come with me."
    And finally he'll wipe every tear from our eyes
    And make everything new, just like he promised
    Wait and see, just wait and see, wait and see

    And I'm counting down the days until I see
    It's everything He said that it would be
    And even better than we would believe
    And I'm counting down the days 'til He says, "Come with me."
    And finally, we'll see. We will see.

    Oh taste and see that the Lord is good, the Lord is good
    The Lord is good. Oh taste and see that the Lord is good
    The Lord is good." ("See" by Steven Curtis Chapman). Praying you will feel God's loving Hand in your sorrow.

    1. THank you for sharing those lyrics!

    2. :-) I hope they helped somewhat! You had (still have) such a sweet, beautiful little daughter.
      I love that song (that whole album really) by Steven Curtis Chapman.

  2. Yes, I am the same person that posted the lyrics. I am using my Google account for my profile now.:-)

  3. Wow that was an emotional walk through Lily's last day. I can not imagine the pain you felt in that moment. You are such a good mommy to all your children and do a beautiful job of keeping Lily's legacy alive!

  4. It must have been a very hard and bittersweet time revisiting the events from two years ago. We all miss Lilly. Sending you a hug. :-)

    1. Thank you for your words Kimmie!