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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

Monday, February 14, 2011

Laundry with Lilly

Weight check = 8 lbs. 5 oz.

Sadly our "great experiment" has failed. Lilly didn't even gain an ounce in the last 5 days of having no formula added to her breastmilk. The thought of starting formula again is very disappointing. Without it Lilly's digestive system has been working so much better and she has been tummy ache free.

On Saturday Lilly helped with laundry. You can see by this last picture that it wore her out!

Saturday morning my oldest daughter and I went to local rest home. Her Keepers at Home group was having a Valentines Party for the residents. The girls made cards and we had desserts. The girls took turns playing the piano or doing recitations or singing. As the girls were performing, I stood and looked at the residents. Some seemed happy as they smiled and either sang along or nodded their heads to the music. But some looked so defeated. Vacant stares, unhappiness, vast disappointment for some because they had to have sugar-free cookies instead of the "pretty cupcakes." At least one resident was wheeled in and just slept.

As I watched I was suddenly struck with the thought that a long life isn't necessarily a "reward." It is not something that should even be desired. Instead we should strive to live each day joyfully. As I thought more about this off and on this past weekend, I suddenly began to feel so much less fearful of Lilly dying. I'm not saying I don't want her with me for a long time. I do. But if it were up to me to choose, I want much more for her days to be joyful than long in number. I don't want her to ever get to that "empty, deflated" state. I'd rather the Lord take her home first.

"Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus." - 1 Thessalonians 5:16-18


  1. I wish you could have come to the rest home, Lilly!


  2. I am thankfully for every moment i can share with you and with Lilly. I think you are a very brave woman (and family) and God has shosen well to put Lilly in your hands because he knows you give her the best she can ever get, always. When its her time to go into the light you will not loose her. She will always have that special place in your heart (as in mine for i am very lucky that i got the change to get to know her) and she will be waiting happily for when youre time is there you will meet again. Love, Anja

  3. very good post. gave me a lot to think about. LOVEc

  4. I rarely write. I think I have written once, but I keep up with this blog. Lilly is so cute. I'm glad she's doing more or less OK. My mother is almost 94 and so, so tired of living. Mentally she's pretty much OK but physically she is so very frail. Regrettably (?) genetically her side of the family lives a long time. Her mother died at 102 and was still making her own dresses at age 94, and was still pretty lucid on her deathbed! I'm almost 67 and don't want to live so long. I am high partial legally blind and also have a moderate hearing loss. I do keep you all in my prayers. Netagene in Birmingham and at and