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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, August 16, 2010

First Stoller Ride

Yesterday we bought a double stroller off CraigsList. When we got home, of course we had to try it out. Lilly and her big brother Hunter (who will be 2 next month) got to ride in it together. (Hunter did get out and run part of the way.) She seemed to enjoy the ride and had her eyes open the whole ride.
Speaking of Hunter, I've been working on some catechism questions with him. He's got the first two down:
(me) Who made you?
(H) God!
(me) What else did God make?
(me) And?
(H) All things.
I recently finished two books on Trisomy 18, written for families. A lot of good information and very encouraging. I was quite shocked to find that there were/are several T-18 children that lived into their 20s and even 30s. Since reading that I find myself imagining what that would be like. Sometimes it's easy but other times difficult.
You see, for me having a T-18 baby, is like having a dark shadow constantly lurking in the corner. Or like being near a bomb that I don't know when is going to explode. Whenever Lilly coughs too hard, or cries too much, or sleeps too long - I think "Is this it? Is her time up?" I try not to do this often, but it can be hard.


  1. Lisa, although I am not her mother and am not there with you, we all feel that dark shadow in our corners especially KNOWING you must be feeling it.

    We must find a way to turn it into a shining light.

    Love you, Shisshy

  2. Hurray for Hunter. He's such a pleasure!
    Tell him his Shisshy is proud of him.