Motivation

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.