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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, April 22, 2013


"As [Jesus] went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him. As long as it is day, we must do the works of him who sent me. Night is coming, when no one can work. While I am in the world, I am the light of the world.”  - John 9:1-5

I almost always think of Lilly now when I read the above passage from the Bible.  In the past, before I believed that God was sovereign in all things, I would have wondered what had I done wrong to cause Lilly to be born with Trisomy 18.  (OK - I admit it wasn't just the past. I did have that thought a number of times!)  I love Jesus's response to the disciples' compassion-less question:  "this happened so that the works of God might be displayed in him."  

Why did Lilly have Trisomy 18?  A genetic disorder that most of the world sees as a horrible thing?  "So that the works of God might be displayed in [her.]"  I can tell you that I have never seen how a little girl, who only lived 17 months, could bless and change so many people.  And she is still doing it even though she is no longer on earth!  Wow - that is God's power!

In the latest issue of Compassion magazine, the president, Wess Stafford, used the above verses as he wrote about children of special needs and how they are even more vulnerable when born into poverty. (pages 2-3)  Stafford paraphrased Jesus's response to his disciples question as:  "Get your mind off blame and get it on how God will work in the life of someone He loves!"  

Jesus doesn't leave that man blind.  The scripture passage continues:
"After saying this, he spit on the ground, made some mud with the saliva, and put it on the man’s eyes. “Go,” he told him, “wash in the Pool of Siloam” (this word means “Sent”). So the man went and washed, and came home seeing."  - John 9:6-7

Stafford pulls these lessons out of those verses:

"Intervening for those with special needs is gritty work.  Like mud, it can be messy and unconventional.
 Intervening is also personal.  Jesus could have simply said the word and everybody would have witnessed a healing.  But he applied His own saliva, His own effort and His own touch.  He personally committed Himself to a special need.
Intervening takes faith, too.  Even with Jesus' unconventional actions, the man had to take a literal walk of "blind faith" to wash off the mud.  Healing came at the end of the path, not the beginning.
And finally, intervening means seeking out and providing a place.  The rest of the story [John 9:8-41] tells us that the healed man is case out of the community by the religious authorities. But Jesus seeks him out - tracks him down, really - to confirm the work of God in his life.  What an amazing affirmation when the once-blind man heard 'the Son of Man ... is the one speaking with you.' The man found a home in Jesus."

I have learned much of this from Lilly.  How rewarding it was to see her smiling responses to us.  Or to hear her laughter!

How I miss kissing Lilly's soft little neck!  I missed her dreadfully this weekend.  

If you are wondering what Compassion magazine is, it is the quarterly magazine of Compassion International.  This is a wonderful (and honest!) group who's mission statement is:  "In response to the Great Commission, Compassion International exists as an advocate for children, to release them from their spiritual, economic, social and physical poverty and enable them to become responsible and fulfilled Christian adults." 

I have sponsored a child through Compassion for about 9 years now and it has been very rewarding.  Here our girl, Selene.  She lives in Mexico:

Every week, Selene goes to the "Compassion project" which is held at a local church and she is given nutritious meals, taught about God, and does different activities.  The leaders at the project also make sure she is healthy and check up on her family.  Selene writes us letters and draws us pictures several times during the year.  (I can only read a little Spanish, so am thankful there is always a translation included with her letters.)  We send money for her birthday and Christmas, and the project always sends pictures of her with the gifts that they purchase for her.  

To my shame, I have not written her as often as I would like to in the past few years.  I have let my own overwhelmed feelings of life get in the way of me taking 10 minutes of writing a letter which I know that she delights in.  So, I am recommitting myself in this.  I am going to write Selene once a month from now on.  No more sporadic patterns!  If you read any of the stories on Compassion's website, you can see what a difference this can make for a child. 

Compassion has a number of different programs, and I am so grateful for their work.


  1. That verse has brought me great comfort also! Lily is a special little girl that has and will continue to touch many! I love how you always find the good in what others would see as bad your post are so encouraging.

  2. I love the picture of you kissing Lilly! :) H