This post is long overdue. April is National Organ Donation Month, and I want to spend some time telling you a little about Kyle's heart donor and encouraging everyone to sign up to be an organ donor.
It has now been 16 months since Kyle received his new heart. Our lives are back to what I guess you could call normal. Kyle is in the best health he has ever been in. Taking medication and the extra precautions to keep him healthy have now become part of our daily routine. He has adjusted so well and is thriving. I still think back to those days in St. Louis and I am sure the memories will never leave me. I don't like to think about it but still sometimes when it is quiet I reflect back on those times. Kyle's question, " am I going to die?" still haunts me. But thanks to a stranger's unselfish act of kindness in their moments of deep sorrow, Kyle was given a second chance. I will forever be grateful.
I wrote Kyle's donor family back in December when his one year anniversary approached. The next month I heard back from them. Writing to them was hard, receiving their letter was just as hard. We now had a story and pictures of Kyle's donor. It truly made it real. They have asked us to keep in touch with them and I have made a goal to get a letter sent back to them this month, in honor of National Organ Donation Month.
I will not show Kyle's donor's picture or go into great details as I have not asked her family's consent but I do want to tell you some about the young woman who saved Kyle's life.
She was 24 years old. We do not know where she was from but I have a good idea. Her mother wrote the letter to us telling us about their daughter. Kyle's donor had been born with an illness
she had from birth. Like Kyle she had frequent doctor visits, surgeries etc. throughout her life.
She was required constant care by her parents.
Coincidentally about the time we went to St. Louis to get Kyle evaluated in October 2008 and found out he needed a heart transplant, their daughter's health began to deteriorate and she was back in the hospital. According to her mother she was declared brain dead on Dec. 3rd. It was that night that the mother and father talked and even before anyone came to ask them, they asked if their daughter could be an organ donor. This amazed me that they thought to do this. The mother went on to tell me the amount of testing that her daughter's body went through the next day, while at the same time Kyle was in the hospital in St. Louis going through preparation and testing. It must have been so hard for them.
From the family's letter it was apparent that she was a very special girl and they loved her very much. She brought them so much joy and despite her illness was very strong willed. I can not imagine their pain and how much they must miss her. I will never take lightly the wonderful gift they gave.
It has given me some peace in that it was their choice to donate their daughter's organs, even before anyone asked, and I know they knew what a difference they could make in another person's life. They knew the suffering from frequent hospital stays, watching your child suffer, the countless doctor's visits, blood draws, horrible hospital food and sleepless nights in hard back chairs watching over your child. They knew they could save another child and family from those horrible things. Kyle's donor was someone you would have never expected to be an organ donor. Yet her parents helped her become a hero. Her heart was a good one. Her mother told me that she knew that it was. At Kyle's last cardiac cath the doctor told me "it really looks like he has the heart of an athlete". That doctor knew nothing about Kyle's donor.
Do not think that you can not be a donor because you have "this or that" ailment. Yes, many times certain diseases will limit what organs or tissue can be donated. But if Kyle's donor's parents had thought that because of her illness she couldn't be a donor, Kyle might not be here today. Talk about organ donation with your family and loved ones, sign your driver's license or become a registered donor. So many lives can be saved.
He is three weeks old today.
