There are pamphlets and tips for writing a letter like this. A procedure to follow that asks that you leave out any information that would identify yourself or the organ donor in the hopes of ensuring privacy for all involved. I have tried to write that kind of letter - the proper one, I suppose - many times. I just can't do it. So I am resorting to my own method - my online journal where I can write what I need to write. Because you must know - this letter is what I need. It's what I need you to know. It's what I need to write as part of my healing. It's what I need the world to see about the beauty that organ donation brings to a tragic and devastating situation.
Dear You, I want you to know that my hope and prayer is that this reaches you... the one that received my son's kidneys on or about April 15th from a hospital in Delaware. We were only told that you were a man in his 40s who lives "out West." West Coast? MidWest? We don't know.
I also want you to know that I am not looking to invade your privacy in any way. I'm not looking to post information about you on my blog. Although my heart's desire is to just know - somehow, someway - that this reaches you... the real you... I don't want you to feel pressure to reach out to me. I am comfortable with anything YOU are comfortable with.
I really hope that your transplant went well, that you had a textbook recovery and that you're enjoying life in a way that you couldn't before. And I very much hope that these new kidneys ensure that you live many more happy and healthy years.
I can't imagine what it must feel like to be the recipient of an organ from a donor that has died. Especially if you know that your donor was a child. In this case, he was. His name was Gavin David Leong and he was 5 1/2 years old. I tell you this not to make you feel bad - or to make our story more dramatic. I tell you this because our little boy had the body of a 5 1/2 year old - and healthy kidneys - but his soul? His soul was old... and wise.
Gavin had an undiagnosed genetic syndrome that made him a little bit different. He was born with very low tone which made physical things like sitting up, crawling, feeding himself and walking difficult. He also was non-verbal and had developmental delays. We were told he had Cerebral Palsy, but I truly never believed that. Slowly... and in his own time... Gavin defied every prediction put upon him. He hit his own milestones and we were so, so proud of him. Just before last Christmas, 2012, he took his first steps at 5 years old. It was one of the happiest days of my life.
Gavin had his physical and developmental issues, but he really was the healthiest person in our house!! He had an amazing diet of homemade pureed food that I made and we took very good care of him. I'm so glad that his kidneys were healthy enough for you. His good health makes his sudden death that much more shocking for me.
On April 10th, I noticed he was getting warm and then he started to get lethargic. We happened to be right across the street from the emergency room so I brought him right there. I knew I was overreacting, but I brought him anyway figuring they could at least give him comfort measures for his fever. Looking back, my actions were completely guided that day. It was in the emergency room that Gavin had a febrile seizure. That seizure triggered cardiac arrest. After six minutes of CPR, they were able to start his heart again and stabilize him enough to be brought by helicopter to Nemours A.I. DuPont Children's Hospital in Wilmington, Delaware. I was so grateful as this was "his" hospital where he saw many doctors and had several different "minor" surgeries. He was well known there and I knew we'd be well cared for.
It didn't take long for us to realize that Gavin was not going to make it. Sir, I want you to know that one of the early conversations my husband and I had was about organ donation. It was an easy decision for us and I'll tell you why. Our little boy, our first born, never uttered a word. But throughout his short life, he managed to inspire people... heal people's hearts... change people... and help people. And he started with us, his parents. In our hearts we knew - if we kept him from continuing to help and to heal, we would not be honoring his life at all. It became obvious to us that helping and healing had been his mission - his life's purpose. How could we not let that continue in his death?
Four days after his emergency room visit... on my birthday, April 14th... Gavin was pronounced brain dead. That same morning, I woke up next to him in bed with an overwhelming feeling that I was pregnant. At 43... after years of infertility and many pregnancy losses, this seemed ridiculous. We had given up - and given all of our baby things away. Sure enough, that overwhelming feeling turned out to be true. Gavin's little sister, Hope Margaret, will arrive in time for Christmas. Gavin's 4 1/2 year old brother, Brian, can't wait to be a big brother. In my heart, I feel Gavin is sending Hope to us from Heaven.
We stayed overnight with Gavin until they brought him to the operating room for the organ harvest on April 15th. I need you to know that it truly was a privilege for us to wait. We were grateful for the extra time with his sweet body... but we also wanted to escort Gavin as far as they would let us before surgery. We posted a big sign at the foot of his bed that said "Superhero Gavin - Off To Save Lives!"
As he was wheeled towards the O.R., with my husband and I proudly walking behind, the halls were lined with doctors and nurses and other hospital personnel. They were all clapping. Clapping for our son. They knew what we knew - that he died a hero.
Dear you, I need you to know that donating our little boy's organs brought us much comfort during the darkest time in our life. I really need you to know that. I want you to accept his kidneys as your own with no guilt... or worries about his family. We chose organ donation and embraced it fully because we wanted Gavin to continue to help people. And believe me... he may have started with you, but he is helping a lot of people still. I have been writing and talking about his organ donation since that day and am so proud that hundreds of people have written to me to tell me that they registered as donors. And others have told me that they have had the conversation with their spouses about choosing organ donation if, God forbid, something happens to one of their children. As you can imagine, it's a much easier conversation to have with a clear mind.
Gavin's death and his organ donation may have given you health... longer days on this Earth... or maybe it even saved your life. I would be thrilled for any of those scenarios for you. But you should know that his even greater gift to the world has been to inspire people who have followed his story to help others - in big and small ways.
You have very special kidneys now. They come with superhero powers and a piece of our little boy's spirit attached to them. We are happy to share him with you in this special way.
If you do want to contact me, you can email me through this blog. Or you can write to me through the Gift of Life Donor Organization. Either way, I will be able to verify that you are indeed the recipient of Gavin's kidneys through them. If you do want to stay anonymous, they will ensure that!
Dear you, I wish you many, many years of health and happiness.
With every good wish,
Kate, Ed and Brian Leong
(If you are reading this and feeling inspired to become an organ donor - please look into registering online in your state! If you're in Pennsylvania, click HERE to register. You don't have to wait to renew your license! And please write on the wall of my Chasing Rainbows Facebook Page to let me know if you did. Your posts may inspire others to do the same! Let's help Superhero Gavin continue to inspire others to save lives, too!)