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!|
|huggable little girl in red|
|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
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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.