Wednesday, June 19, 2013

Wednesday, June 19, 2013

Tonight's picture was taken in June of 2006. Mattie along with Peter, Mattie's friend Zachary, and Zachary's dad went to a "Day out with Thomas." Mattie loved Thomas the Tank Engine and the entire Thomas train series. Mattie and Zachary could pretend play with Thomas and the other trains from the series for hours! In essence, Mattie loved all things Thomas!!! While at the event, they rode on a train that was a Thomas replica, and as you can see Mattie was quite happy and checking on things outside his window!


Quote of the day: In the Book of Life, The answers aren't in the back. ~ Charles M. Schulz

This afternoon, I was doing laundry, and when I came back upstairs I found a surprise awaiting me on our deck. The surprise was these glorious sunflowers and a book about loss and grief, which was signed by the book's author. However, there was no card with the gift, so I had no idea who they were from. I am good at deducing reasoning, and by the process of elimination, I figured it out. Getting into our complex is challenging, therefore, I knew the flowers and book wasn't from a friend of mine who lives outside of our complex. It had to be from someone who has access to our common doors. So then I thought about our neighbors and given the nature of the book, I realized the gift came from our new neighbors above us. We met these neighbors in our parking garage this weekend. They innocently asked about Mattie's sandbox, since they can see this green frog from their window. They wanted to know if we had children. Peter usually answers this question more diplomatically than I do. Peter usually says "that's a long story." Whereas, I usually state the fact, "we had a son, but he died from cancer at age 7." Neither answer is right or wrong, but my answer can catch people off guard and in this case I could visually see that I upset our neighbors in our parking garage this weekend. After I put our laundry away, we then received a knock at our door and low and behold it was our new neighbor who I figured left us the gift. She handed me the card that slipped out of the flowers when she delivered them. Needless to say, our neighbors have been introduced to Mattie through our blog and clearly his story touched people who never even knew him.

Sunflowers are actually very special to me. They were given to me by Mattie's care community when he was battling cancer. I can't remember how many beautiful bouquets of sunflowers I received during those 15 months that Mattie was in treatment. Receiving these flowers today reminded me of Mattie and it also reminded me of Mattie's care team who supported us daily for over a year. It is funny how the sight of a flower can trigger a whole host of memories.

Last week I reported on the blog about Sarah Murnaghan, the 10 year old girl who was in desperate need of a lung transplant due to her battle with Cystic Fibrosis. I saw this follow up article today and it intrigued me. The "under 12 rule" is explained a bit more here but to me it still seems like an arbitrary cut off, a cut off that really is designed to keep the adult lung transplant organs available to people 12 years old and older. Keep in mind that since 1987, ONLY 11 children in this Country have received an adult lung transplant. In many ways, the demand for organs exceeds the supply, and therefore the controversy unfolds when it is perceived that by giving Sarah a lung, this is taking away another person's chance of survival. I understand that wholeheartedly, but that to me is the general problem with organ donations, not just with the "under 12 rule." Whether the organ went to an adult or a child, the point is someone is getting the organ, while another person isn't! It is really that plain and simple. Of course ethicists have an issue with the fact that the Murnaghan's advocated for their daughter and brought this to the media's attention. They would prefer if the family relied on the system that was in place (to avoid the advocate with the largest voice getting the organ). Frankly if parents relied on the system that is in place, with such scarce organ resources, their child would most likely die. There are currently 30 other children like Sarah in this Country awaiting a lung transplant. What happens to them? 

The article goes on to talk about how the annual organ donations are falling far behind demand, and they suggest the need to give people an incentive to donate organs. Such incentives suggested would include donating organs at death in exchange for a burial benefit or a contribution to the person's estate when the time came. As the article stated, "Compensating donors could spare us the heartbreak of rationing. Saving one person should not mean death for another." This topic could be debated every which way but Sunday, however what it comes down to is when your loved one needs an organ transplant, you are going to do whatever it takes to make sure he/she gets to the top of the list. Relying on standards set by the government and other organizations will most likely mean nothing to you, especially if your child's doctors are saying that an adult organ is the only chance your child has for surviving! This is the message Sarah's parents received, which is why they did whatever was in their power to overturn (even temporarily) this "under 12 rule."

How to Fix the Organ Transplant Shortage
http://www.slate.com/articles/health_and_science/medical_examiner/2013/06/sarah_murnaghan_s_lung_transplant_organ_donors_should_be_compensated.html