Saturday, August 23, 2014

Ice-bucket Challenge response, sort of...

I am not going to lie, I've gotten some pretty good entertainment from watching so many people have ice cold water dumped on them. I think it's great to see awareness for Amyotrophic Lateral Sclerosis spreading so quickly across the world.

My husband, James, graduated from Dupo High School in 2004. As a student he was a member of Air Force Jr. Reserve Officers' Training Corps and was taught by Chief Master Sgt. Donald L. Blanchette. "Chief" served in the U.S. Air Force during the Vietnam War and Desert Storm and retired after twenty-three years of service. After which he went on to teach ROTC at Dupo from 1997 to 2008. I have heard so many good stories about James' time with Chief. And I finally had the privilege to meet him about one year ago at an ROTC reunion I attended with my husband. Although it was neat to go and meet people he went to high school with, the purpose of the reunion was to honor Chief Master Sgt. Blanchette. Chief had recently been diagnosed with ALS and the disease was progressing quickly. By the time I met him, he was already wheelchair bound, unable to walk or move his arms and legs. He was a very friendly man, smiling and talking with his former students. I didn't even know him, but it was so sad to think that this well-accomplished man only had a short time before he would no longer be able to turn his head, talk, and eventually swallow or breathe. It was hard on James to see someone that he had such good experiences with, and learned so much from, to be dying slowly with no way to stop it. Chief passed away May 20, 2014 after his battle with ALS.

I remember meeting a red-head in physical science at Collinsville High School, probably in 2001. Since I never graduated from high school, I'll just tell you that Nikki graduated in 2005. She is one of the sweetest, most enjoyable persons to be around, and quite smart. And even though we haven't been as close since we have each started our families, I still think of her as my best friend. We've known each other through many awkward phases and break-ups from bad boys. Sometimes I wish we could go back to the days of playing broom ball or sand volleyball until midnight. I knew her mom and her aunt. And as the years went on and I started working at a local hospital in 2007, I got to know her dad. Darin was an IT Tech at the hospital and I worked in the lab. He was always happy and would tell lame jokes and was just plain easy to talk to.

In January 2009 I had the honor to be in Nikki's wedding. And Darin was so sweet! It was his only daughters wedding and he selflessly prepared all of the food for the wedding reception! It was my job to make sure he knew when to come up from the church basement to see his beautiful daughter walk down the isle! Four and half months later, Nikki was in in my wedding and Darin was our personal chef. It was wonderful. And everybody loved the food :)

We moved to Carbondale had a baby, and moved back eighteen months later. I started working at the hospital again. Nikki had a baby. I had another one. She had another one. I quit my job when baby #2 came, so I haven't seen Darin since then.

Earlier this year, a friend from the hospital asked me if I knew that Darin had been diagnosed with Multiple System Atrophy. At the time I didn't know exactly what MSA was, but from what I knew, it wasn't good. My heart sank for my dear friend. The relationship that I have with my dad means the world to me and I can't begin to imagine all of the thoughts and feelings she and her family are having. I have been a horrible friend as of late because I haven't brought it up. Even when I know it stares them in the face every day. I haven't asked about him because I don't care. I care a lot. I care so much that when I am at home playing with my boys and I start thinking about it I just start to cry. I hurt for them so bad. I hurt for the loss my friend is experiencing in a slow and painful way. What I need to do is grow a pair and talk. People need people to be real. To experience life with them, to share joy, to help carry the burden.

ALS and MSA are similar, but here is the difference: ALS is a neuromuscular disease that destroys motor neurons whereas MSA is a neurodegenerative disease that destroys motor neurons. ALS is usually more aggressive than MSA, but both diseases are a devastating battle ending in death.

I originally thought I would expound more about why I am choosing to not do the ice bucket challenge, but I'm actually going to leave that part pretty short and sweet. I don't have all of my facts straight yet, but from what I've been reading, the ASLA may support embryonic stem cell research. I think stem cell research is an brilliant discovery and has helped MANY people already. It is truly amazing how God created the human body and how stem cells can, for example, be taken out of a knee and injected into the back of the same person and those cells just go right to work, transforming into the cells needed to promote healing. That's probably one of the reasons God made them! I just cannot, in good conscience, support embryonic stem cell research. I think IVF is awesome because once the embryo is made, it is then implanted into a uterus to CONTINUE its formation into life. But to fertilize an egg to create an embryo and then never implant, but end the process of life that has already begun? I just can't do it. I would love to understand more where the ALSA stands exactly on this topic. Until then, I will find a way to donate to ALS/MSA research without funding embryonic stem cell research. And I continue to pray and ask you to pray for Darin and his family :)

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