MAKING HARD CHOICES

I was in the middle of a body pump (a weight training class) class. In between weight tracks, one of the instructors who was also taking this class, turned to me and said that I had to come to her class on Friday. She was going to turn her class into a Valentine's party! She was referring to the music she was going to use for her class. I said that I was sorry, but that I wouldn't make it. She is a hard core instructor, so no excuse is good enough to miss class. "So, why can't you come", she asked. I said that I had a conference I had to attend. "What is the conference about?" was her next question. "It is an ethics conference at Children's Hospital", I answered honestly. "Ethics Conference???" "Yes, it is about end-of-life decisions for sick children", I said. "Oh, so you're a nurse?", she said. "No, my son lives with a chronic disease", I said. I could see on her face that this was the least she had expected to hear by simply trying to get me to her class. It was time to pick up our weights again, which made a natural break in our exchange. For the rest of the class, we were focusing on our weight training, and I honestly felt that I had told her a little bit too much about my life. Maybe a little bit more than she was ready to hear at the gym.

Friday came around, and it was time for the Ethics Conference at Children's Hospital. The title of the Conference was "Making Hard Choices". I had been asked to open the conference. By now, I am ok to tell our story. Our story of taking Jacob home from the hospital after 50 days of attempting to stop seizures, a metabolic crash that got everybody to think that this was Jacob's way of saying that his body couldn't do it any longer, and two subsequent pneumonias is not new to me. The importance of the story is that end-of-life decisions should preferably not be made in the middle of an emergency. We're in a way the lucky ones who started down this path three years ago, and have had plenty of time to figure out how we want Jacob's life to look like at the end, and what that also means for the rest of our family. And when I write this, I also have to acknowledge that there are so many feelings and emotions that go into this decision-making process. How can you make the best decision for your child and take yourself out of the equation, so the decision is truly the best for your child, not necessarily for you? What the audience didn't know is that I had woken up this Friday morning with food poisoning. I started to feel sick to my stomach overnight. I knew that my opening couldn't really be told by anyone else. You simply can't tell somebody else's story when it comes to these topics, so I was determined to make it to Children's this morning - upset stomach or not.

Before lunch, it was time for me to participate in a panel discussion. On the panel, we were two parents, one GI doctor, and one doctor from the Special Care Clinic. We were presented with a case of a 4-year old girl who lived with an unknown chronic disease. In the last year, she had overall digressed and had drastically lost weight. The doctor felt that a feeding evaluation for a feeding tube was the next natural step. The doctor also knew that oral eating for this girl was very important and was equal to "quality of life". We two parents have taken different courses on our journeys. For Jacob, we have taken many interventions including a feeding tube to help our boy to live and thrive. As Jacob's disease has progressed, we have also said no to certain interventions that we didn't think were right for Jacob. The feeding tube wasn't one of them. The other dad and his family took another approach. They knew their daughter would die, and as the feeding tube came up, they decided against it. They had read and heard from other families with the same diagnosis that when you're dying, food is the least on your mind. They didn't want to interfere with the natural path of dying. The conclusion we all had, doctors and parents, is that when it comes to decisions, and hard choices, there are no right or wrong answers. You have to create your own path with your child.

The highlight of the day was my friend Heather. My dear friend Heather (http://samsmom-heathers.blogspot.com/) has lost her daughter Samantha to mitochondrial disease. This was the first time she publicly told her story about the last hours of her daughter's life and her death on a sunny Sunday morning. She told her story, and what happens when you don't have a CPR directive in place for your chronically ill child. She didn't leave out many details, she told us the beautiful and the ugly parts of a child dying in the home without a legal document. It was powerful to see Dr. E. respond to Heather's story. She told the audience that she was deeply sorry for what Heather and her family had to experience around Samantha's death. She also said that since that happened to Heather and her family, she had changed her practice. She will never leave the end-of-life discussion for a chronically ill child to a later time. She will proactively bring it up, since noone can predict the future. Heather's story is powerful by itself, but for Samantha's doctor to also take part of it, and admit that she would never ever again like to see a family have to go through what Heather had to do, was simply beautiful. I know that exchange between Heather and Dr. E. will make fundamental changes for both parents and medical staff working with chronically ill children.

When the day was over, I was content. Despite the hard topic, it had been excellent presentations, and very rewarding exchanges between parents and physicians and nurses. I felt that the conference for many was the beginning of making hard decisions. As I was driving home, still with an upset stomach from the previous night's Mongolian BBQ, I started to relax. Despite Joakim and I having been down this path of hard decisions and end-of-life care for the last three years, it is hard. It brings up a lot of emotions. It brings up a lot of feelings. By the evening, I finally started to feel better from my food poisoning, but I was exhausted and very tired.

The following morning I ran into the body pump instructor. She stopped me in my tracks, and said "hey, how was your conference?". I told her it had been really good. She was happy to hear that. That little confirmation meant a lot to me. It made me realize that most people can take much more than you think. It made me realize that she cared. It made me realize that I am never alone on this journey, even when the going gets really tough.

Love,
Maria.