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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, October 10, 2010

On the Lord's Day

As I dressed Lilly for worship service today I thought once again, that there is a real need for "super-super-slim sizes." I wanted to put a newborn size baby dress that I once wore on her, but even though the length was good, it was just too wide. So she's sticking with her "old faithful" dress. A preemie size long smocked dress. We call it her "angel dress."

Though not as often as I used to, I still sometimes wonder why God created Lilly to have trisomy 18. This scripture I read today reminded me why:

"Now as Jesus passed by, He saw a man who was blind from birth. And His disciples asked Him, saying, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “Neither this man nor his parents sinned, but that the works of God should be revealed in him. I must work the works of Him who sent Me while it is day; the night is coming when no one can work. As long as I am in the world, I am the light of the world."
John 9:1-5

We know God answers "the big prayers" - He has been so faithful answering so many of our prayers for Lilly. Last night I was reminded that God cares about the "little things" in our lives too and blesses us in unexpected ways. Yesterday afternoon I was putting things away in our pantry and it crossed my mind that a small shelf to hang on the wall would be useful. Then last night as we went for a walk, we found that someone had thrown out a bunch of things by the road. Amazingly I found a small shelf like I had in mind in a box. And not only that - I found a wonderful apothecary jar just like I've wanted for a long time, but never wanted to spend the money on. Now these are just "little things" in the whole scheme of things, but I do believe they were "just because" blessings from God. He is so good and faithful in ALL things! :)

7 comments:

  1. Love the picture. She looks so NON-SICK! And is that her little tongue I see??? :)

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  2. We've been keeping up with Lilly's progress and thank God that she is doing so well! So much of her success is because of your "can-do" attitude! You are an inspiration to all of us who are privileged to read your blog! Thank you for posting her wonderful story and for sharing your emotional journey with us! We try to check the blog every day and remember you all in our prayers! :) My girls, ages 10 and 6 are in love with Lilly! They send their best wishes for her and big cyber-hugs!

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  3. Greetings from Alabama! I always see things that are posted on Brethren-on-line about Lilly, and a few days ago, decided to look it all up. I went back to the beginning, and read every single post that you've done! I love her eyes! I don't think you've written any more about her cooing though. Is she? Prayers to you and your family, Netagene at http://blindedbyinsight.blogspot.com (I became legally blind 7 years ago at age 59, but thanks to God and good doctors, again have a good bit of usable sight.)

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  4. You are right! We have to remember all the little blessings too. I am so thankful that you all are doing well at home. Lilly looks fantastic. And, I think her dress is absolutely beautiful. She looks like an angel so it's appropriately named :o) By the way, I have some preemie things of Mallorie's packed up. If you need a Christmas dress, I have a really pretty long preemie white one that has a Christmas tree smocked at the top and a matching bib. Mallorie wore it last Christmas and I'm sure she'd be honored if Lilly wanted to wear it this Christmas:o)

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  5. If you are interested we also have some preemie clothes that we would love to send your way! We had the same problem finding clothes that fit our little Annabel. Please email us if you are interested! Lilly is just beautiful!
    http://www.sweet-annabel-leigh.blogspot.com/

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