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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

Thursday, August 26, 2010

To hold or not to hold "too much" ... that is the question

In the past two weeks, I have heard about three trisomy 18 babies that have died. One lived about 6 months, another 2 months, and the third less than 1 month. Each one touched me. The one that lived less than a month was born after Lilly, and has aleady died. The one that lived about 6 months had already had the heart surgery. Yet she died anyway. I find myself pulling for these little ones, cheering them on every day they live, and hate when I hear they've died.

I'm conflicted in how I feel about T-18. From a human standpoint - I see it as a horrible, hopeless curse. From a spiritual standpoint it's a blessing. Who wouldn't want to skip the many trials of this life and go to be with the Father asap?

When I read about these T-18 babies that die, it makes me want to hold Lilly constantly and not put her down. But of course, practically speaking, how could I do that and take care of my other children and responsibilities too? (And Lilly would miss her Moses basket. She loves sleeping in it!) What is the right balance?

When I get through all my jumbled thinking (which thankfully only flares up at times) I get my mind back to thinking positive. God is on the throne so I have HOPE! I go about my day, but try and express my love for all my children more often than I used to. Lilly has taught me so much in her short life. And from comments I've had from others, she's even taught them too.

Now for a new prayer request: that Lilly would have an easy time eating. It seems for the past few days, and almost always in the evening, she maybe takes her milk in the wrong way. Then she fusses and her body goes stiff until she finally spits up. Last night she spit up so hard it shot all over and even came out her nose. Now I know that some babies do that frequently. But because of all her problems, I just feel more concerned.


  1. Hi, I'm a friend of your Aunt Pam (at least I think that's the relation). My friend Will is the father of little Albert. When I read this post, I thought, "Moby wrap!" It would let you hold Lilly & tend to the others. If mine weren't loaned out I'd pop it in the mail!

  2. It is amazing the effect Lilly has had on so many people that you are not even aware of. I have friends that have been touched deeply by this tiny gift. They express it to me frequently.