This is a story about my son, Sam, who at seventeen became a donor hero saving others through the gift of life. I’m opening myself up to share some of the experiences I had before and after Sam’s death. Just like all stories, there must be a starting point so I chose to begin this one on the weekend he went into the hospital. I will share how I learned to navigate the pain of my grief journey after experiencing the loss, leading to healing and the celebration of him and the life he lived.
On the Sunday morning of the first weekend of his senior year in high school, Sam went into respiratory distress and was taken by ambulance to the hospital, where he was later stabilized. After contacting Sam’s neurologist, he was transferred to the hospital where that doctor worked so he could better care for him. It wasn’t uncommon for Sam to be in and out of the hospital along with visits to special doctors due to him having Duchenne Muscular Dystrophy. We thought it would be a normal experience like some of the others, a short stay in the hospital and then sent home. That night, they continued monitoring and running tests. On Monday morning, I was making my way back to the hospital when I got a call and was told that they didn’t see the brain activity that they had hoped for, and he was not going to survive. I was devastated. There is nothing in this world that can prepare you for news like that.
By the time I had made it back to the hospital and was on the way to his room I was approached and asked about the possibility of him becoming an organ donor. At that time, it felt kind of strange because in the spring of that year Sam had asked me if I thought he could be an organ donor. I remember telling him that I didn't know because of the disease he had. I wasn't sure where he had heard about organ donation. I thought it must have been something that they had talked about in school and I told him that we would have to check into it, which I never got an opportunity to do. Because of that conversation we had, it was easy for me to make the decision to say yes knowing it was something he would have wanted. The call came at 2:45am Tuesday morning, notifying me of his death and I remember thinking to myself it’s done. I soon came to realize that things were far from being done. I was about to start an unfathomable journey like no other that I have experienced before. Sam's gifts were able to save the lives of two people who received his kidneys, he helped restore sight to people with his corneas and his liver cells were used for research, where they could still be helping people to this day.
In the days that followed, I felt lost with no direction to go. There was a heavy weight on my shoulders and I was in slow motion while the world still moved at its normal speed. I was a caretaker and he wasn’t there to be taken care of. I had funeral arrangements to make, there were people asking questions that I didn’t know how to answer and it was very overwhelming. Some close family and friends understood what I was going through and they were the ones I really leaned on. Soon I settled into what I would later find out to be the new normal. While starting to put my life back together I began to process my grief dealing with the pain and anguish of the loss. As I mourned, I learned to navigate the pain and reconcile the loss. After all, this was not a race to be won, it was going to be a long and tedious journey with no end, just ways to heal and move along at a chosen speed. I soon became to realize that the person who I was before Sam’s death was gone and I was being transformed into someone new. I was able to see things in a new positive way and started experiencing joy again, becoming more in touch with my emotions. It didn’t mean that the grief had gone away, it just didn’t control my life anymore but became part of my life. An example that I can give for this is grief bursts. I kind of look forward to them, as strange as that may sound because of the pain associated with them, and I cherish the memories that brought them on. I had come out of the dark and into the light. I could suddenly see and had a new direction giving me the ability to celebrate Sam in a new way. I had always honored and celebrated him by sharing his interests in music and star gazing, as well as the stories of his mischievous doings, like the heart stopping things he did in his wheelchair but now it was different, like the memories had more meaning. The two hardest days of the year are the anniversary of his death and his birthday. On those days I tend to slow things down and honor his memory by doing something he liked or having a favorite food, which usually had something to do with cheese. While I was working through my grief, I became an advocate with my local donor organization which opened me up to a whole new source to continue healing. While promoting organ and tissue donation, I get to share my story with a new group of people. I meet recipients and other donor families, who share similar experiences of loss. My hope is that I can be an inspiration to them as they travel their journeys. This seems to be one of the main places my journey has taken me, being there to help others in need. So with that thought, I see this as a good place to close because I don’t want to find myself dragging on in mundane way. It is commonly known that stories should have an ending, you will find this one does not. I live out this story every day with the ups and downs. I now have more joy than pain and I’m in control of the speed as I continue this journey knowing that I have the tools needed to handle whatever comes next.
