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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, March 18, 2015

Smile! Today is Trisomy 18 Awareness Day


This is Trisomy Awareness Month.  Trisomy means "three" and March is the third month of the year.  Today is extra special to me because it is the 18th.  That means today is Trisomy 18 Awareness Day.  Trisomy 18 means that there are three copies of the 18th chromosome instead of the usual two.

Sometimes I feel weird/wrong for continuing this blog because it started as Lilly's blog.  The place where I could update friends, family, and other interested people with what was going on with her.  We simply couldn't keep up with all the inquiries!  But then it also became a sounding board for me to share with the world about Lilly's life and to show that about 10% of babies with Trisomy 18 can live to see their first birthday.  (And I know a number of other children that have T-18 that have lived way past their 1st birthday!)

Not only did I want to let people know what our specific prayer requests for Lilly were, but I wanted to document her life both for our family, and as a help for other families coming into the Trisomy 18 world.  Another thing that I wanted to share was that special needs children are not a burden to their families, but that we enjoyed them and they enjoyed us.

Over the past 4 years, I have gotten a number of emails from mothers who were pregnant with babies
that had been labeled with Trisomy 18.  Several of these mothers were struggling with whether or not to abort their babies.   Interestingly, these mothers all wanted to keep their babies, hoping ultrasound was wrong.  But they all had people in their lives who were pressuring them to abort their babies.  It was sometimes their husband, but usually it seemed to be outside family members.  In one woman's case, it was the physical therapist of one of her children!  (Why anyone feels they have the right to tell someone else their opinion about something like this is beyond me.)

All of the abortion pushers expressed concerns about what the Trisomy 18 baby would do to the family.  (If anyone was concerned about the baby itself, the moms writing me did not express that.)  So the moms wanted to know things like:  Did Lilly tear apart our family?  Were my other children damaged because of Lilly's life?  Did we resent Lilly?  Was it a relief when she died?  Would I make the same choice to have her?  Did she just take up too much of our time?  Etc.

I responded to these emails the same way that I hoped I came across in my blog posts.  We ALL LOVED Lilly!  No one in our family resented her.  Tabby and Hunter adored her and never complained about her.  She bonded us all together as we fought for her life.  We were proud of her.  No one resented the extra time she took.  We all loved to help her.  Lilly's life blessed us in many, often surprising! ways, and still continues to bless us.  We are all better people because of Lilly and we still thank God for her!

I could go on and on but I think I made my point.  These special children are not a burden - they are a blessing.  No matter how long or short their life is, it will change you.  Bless you.  They are worth the heartbreak when you lose them.

 Oh - and in spite of what many people out there seem to believe - these little "retarded" babies really do have feelings and can express love and delight.  Lilly could smile and laugh.  She responded to our voices.  She loved watching what everyone was doing.  She was curious about things.  She liked routine.  She loved her physical and occupational therapy sessions and working hard.  And she had very strong opinions about how much she hated being in hospitals.  :)

 I could go on and on about this topic, but I will spare you.  ;)  So today, for Trisomy 18 Awareness Day, I just want everyone to know - YES, THESE CHILDREN ARE WORTH IT!


  1. Tears, love this post:) Lilys life is beautiful

  2. Oh my gosh, I think I'm going to cry! Your baby Lilly was so beautiful, and those pictures are amazing. I am so so sorry about your loss. No parent should have to lose a child that way. But Lilly's life, no matter how short, was undoubtedly great with a family like yours. You must be a strong family to emerge from such a tragedy as this together. Lilly was a beautiful little girl, and she is still smiling at you from above♥♥♥

    1. Thank you so much for your kind words, Cindy. It means a lot!

  3. Are you trying to be ironic? Fuck you. I don't know what I did to deserve a child with a trisomy, but I was sure hoping for a healthy one.

    1. No I'm not trying to be ironic. You'll find many parents of children with Trisomy feel the same way as I do. (I'm not the one that created that meme.) But we all wish we had had a healthy child. I get it. I also understand your hurt/pain/anger. It's really really hard. When you get past that, try and see the blessings/positives. That will really help heal your heart.