Saturday, December 4, 2010


I've been wanting to make this post for a few weeks, but I've been sitting on the topic, trying to give it the eloquence it deserves.

Motivation interests me. Not so much the type that gets people up and moving, but more the motivation that makes people tick. One such topic that I have trouble understanding is when people--especially the medical community--have such a callous attitude towards children with Trisomy 18. I just can't understand how a person who has dedicated his or her life to helping people can turn his head and refuse to treat this child with the dignity he or she deserves.

A few weeks ago, I happened upon a blog written by a medical student. The author of this blog has created a "study guide" that relates certain medical issues with musicians. This blog I read related Trisomy 18 to Eddy Money. He hoped he wasn't going to hell for such a post.

I left a comment to this author and told him that I didn't think he was going to hell--that as a mother of a baby with T-18 I wasn't offended--and that I thought it was great that he could create a mnemonic device for his studies. I briefly told him about Lily and the fact that some of our T-18 babies didn't fit the mold of statistics and asked him to keep that in mind when he became a doctor. Little did I know the impact that comment would have.

A few days later, I received this email from a girl named Laura.

I was visiting my friend's music blog site and I came across your post. After reading through your blog, and watching Lily's videos, I am left without words on how to thank you. She is beautiful. I can only imagine the struggles you must be going through and have gone through. As another student at Jimmy's university I have become all too familiar with the crazy ways we find to remember things. Every disease we learn gets filed away nice and cleanly into our inner-brain disease archives. So many things get shoved in until these diseases become just words. We forget that every disease will be associated with a patient. We all come in with such an intention to do good and help as many people as possible, and then throughout our years in school, with constant reading, tests and lack of human contact something gets crushed a little. Recently I have been so confused about what I am doing all this for. At this moment there really doesn't seem to be any light at the end of the tunnel, because nothing but books alone help people forget love for humanity. Then I read your blog and found that love again.

Lily is amazing and wonderful and already a very powerful woman!
More med-students need to become aware of things in a much more personal way.

Needless to say, I was touched. I always hope that this blog will help others who have a child with T-18, living or in utero. Never did I imagine Lily's blog would have reached out to someone in the medical community.

Laura and I exchanged a few emails. In those emails, I explained to Laura our reason for giving Lily the chance to live and what we dealt with from some in the medical community, among other things. I found two interesting things out (among other things): 1) that Laura's view of abortion has changed, and 2) that Laura and her friend Jimmy (the author of the above-mentioned blog) have been talking to their fellow students about Trisomy 18.

I have been so impressed with this young lady. And I want to say that it's not because she has changed her view on abortion. It's more that she has been willing to open her heart and recognize the need to do so at a time when books and intelligence were shadowing her heart from the true reason she is pursuing the medical profession--her love for humanity. It makes me wonder how many med students this actually happens to.

In Laura's emails, I have gained a bit of compassion that I had perhaps lost in the medical community. I have found a bit of understanding in what "motivates" the thoughts of some of the doctors involved in Lily's care. Some of that makes sense now.

Laura has motivated me as well. There's a program in South Carolina that connects medical students with families of children with disabilities. This program is designed to move medical students from the "textbook definition" of a disability into the reality of life with a disabled child. I had been wanting to get involved with this program but always put it off. Since communicating with Laura, I have contacted the organization, only to find that the program doesn't exist in the Charleston area, but they see a need for it to get set up. Hopefully, I can be a catalyst for our area's program. There's definitely a passion in my heart for it.

And to Laura, thank you for opening my eyes to the life of a medical student. You are a remarkable young woman with such an impressive depth of understanding. And thank you for recognizing the beauty of our little ones with Trisomy 18. You have so much to give to the medical community.


  1. Thank you for that post - it was encouraging! I too get so frustrated with the medical community and trying not to be bitter towards the doctors that refused to help my Lilly, because they didn't believe it was "ethical."

  2. A great post, indeed. I wonder if that program is available in Texas. I will check it out!

  3. As a fellow Trisomy 18 mommy and (attempted) blogger, I want to thank you for helping to enlighten the eyes of the future medical community!! My daughter Joey is also one of the exceptions to the "incompatible with life" rule, and continues to pleasantly surprise all those involved in her care. I take every opportunity I can to educate medical professionals who cross our path in regards to T-18, and hopefully as more of us continue to do so we can get more and better treatments for our children. My greatest hope is to see "incompatible with life" completely removed from medical journals and or texts.

  4. You are meant to be the person that brings awareness and compassion to your community! These people did not stumble upon you by accident, you know! I have encouraged you to write a book and I understand your hesitation BUT so many people will benefit from your knowledge, your passion and your positive outlook. All of these things have made Lily as strong as she is today. I'm sure the doctors have helped, but I believe that you and Dave are more to thank than anyone else! You both amaze me everyday! You will encourage others to stay focused and positive and who knows, if you make enough noise, you may convince that state to re-evaluate the need for Medicaid for the families. Do this Jill! Do it for yourself, your daughter, the doctors that have no idea what the real life situation is like and for the many parents that need you in their life so they can be as strong as you! I love you and am here if you need any help! This is your destiny! Be the T18 voice of Charleston!


  5. Amazing and so grateful to Laura to be so open. Thank you for writing this post and also making a comment that lead to these discussions. One medical student could help many children, even if only one. Also, their opinions could change their fellow workers or classmates.
    While Annabel was hospitalized these last few weeks, it was amazing how many residents, fellows came in and aske were we sure she had full T18. We said yes and their comments were amazing. Textbooks tell you one outcome and that is what they remember. Praying that seeing Annabel will help them to remember a different outcome. Thank you, Jill for being so motivated to follow and resond on his blog and have interactions with Laura.

  6. Jill,
    You are an amazing mother, advocate for our trisomy 18 babies and angels, and woman! I still have tears in my eyes from reading how your efforts have touched another life and shown how a life that may not be considered "normal isn't any less meaningful just different! I work in healthcare and try to share my story so others understand what a tremendous impact a child can have no matter how short their life. You're an inspiration! Thank you for sharing your story!! Sending you all hugs and prayers

  7. Sorry, forgot to sign my last post!
    Merry Christmas