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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

Wednesday, February 29, 2012

A valuable life and more memorial ideas

My daughter T. reminded me about these cute pictures of Lilly from August 2011, so I thought I'd post them. In the first Lilly is with Hank the caterpillar and Jo Jo the dog. (Hank was from Uncle Hank and Jo Jo was from her cousin Josiah. Lilly was buried with Hank and big brother H. now takes care of Jo Jo.) I love the sweet grin in picture #2! And check out that chubby hand and arm in picture #3! We call that "hard earned chub!" (If there is one thing I could change about how we cared for Lilly it would have been to get her feeding help much more quickly. She could drink from a bottle, but wasn't strong enough - because of her damaged heart - to drink long enough at a time. We did our best but just really didn't know what to do at first. When she was 2 months old she got a NG feeding tube and wow - what a difference that made!) We miss you and your chub Lilly!!

My husband shared with me an article yesterday by conservative commentator Cal Thomas. It was dated January 6, 2012 and Cal had written about his brother Marshall, who has just passed away the day before. Marshall had Down syndrome. Cal titled his article "My Brother's Valuable Life." Just as we felt Lilly's life was precious and "valuable", the Thomas family believed that about their son Marshall's life.

Cal wrote that when Marshall was born (1950) and diagnosed, the doctors told the parents that "he would never amount to anything and [they] advised them to place him in an institution." Apparently this advice was commonly taken in the 1950s.

Cal noted that if you measure life to be a success by fame, wealth, possession, or by making a major contribution through things like medicine, sports, politics, or the arts - then his brother was a failure. Cal writes "If, however, your standard for a successful life is how that life positively touched others, then my brother's life was a resounding success."

That is exactly how we feel about Lilly's life. The general population would think Lilly's life worthless - she couldn't care for any of her basic needs herself, she never said any "real words", and she was expensive to care for. BUT ... she impacted so very many lives. It is amazing how God will often choose the one of the very weakest people to show His glory and power!

In his article, Cal also mentioned that when he was about 8 or 9, he bought a popular book for his parents called Angel Unaware. It was by Dale Evans. I did not realize before reading this article that Dale and Roy Rogers had a little girl named Robin that lived for two years with Down Syndrome. Dale took the title of her book from Hebrews 13:2: "Do not neglect to show hospitality to strangers, for thereby some have entertained angels unawares."

In our current time, people don't think of hiding their "embarrassing" Down Syndrome children in institutions anymore. Instead they receive good medical care and are accepted by doctors. Lord willing, there will come a time when children with Trisomy 18 are treated the same way. How wonderful that time will be when we parents, who are already trying so hard to care for our children, don't have to also fight doctors to get help for them. For a time when we no longer hear our children are "incompatible with life" and therefore not worth it because of "ethical" reasons. I praise God that the majority of Lilly's doctors really did grow to love her and helped her the best they could. But there were some that refused to help.

Finally I wanted to share a link to good list of memory making / healing ideas. Click here for that. There are separate lists for activities for children and for parents. If you've read this blog much lately you know how important I feel these activities are! Right now my daughter T. and I are working to make ornaments for Lilly's memorial tree for March. :)


  1. Thanks be to God for the manifold ways He has used Lilly's life and your family's love of this deal little girl. I know my ears are attuned to anyone even mentioning Trisomy 18 and that is due in large measure, to Lilly and you. Your blog is so worthwhile!

    Love in Christ,


  2. Jesi wants you to put a caption on the photo of Lilly's fist...Power to the People! In regard to Down Syndrome, I think our society has gotten worse. People who have Down Syndrome children don't hide them anymore, but 90% of people simply abort their Down Syndrome children. This is frightening. I remember knowing all kinds of Down Syndrome children and we even had a school for them, but you don't see them anymore. ONLY 10% of parents are willing to give birth to their Down Syndrome child? Yikes.

  3. 3 1/2 years ago my nieces OB Dr advised my niece to terminate her pregnancy because the dr suspected the twins both had down syndrome. My niece ignored his suggestion and chose to carry the twins to term and switched OB Dr. My great nieces were born 8 weeks premature and are healthy, happy girls. They are a little delayed. I cant imagine a Dr encouraging my niece to cause their deaths. Each life is precious and a gift. Society doesnt warehouse or hide disabled kids anymore but the abortion rate for Trisomy babies is too high.