Dear Superman's Mom: a letter of thanks & comfort to the mother of an organ donor


Dear Superman's Mom:

I truly don't know the actual identity of who I'm writing to, but as a mother, I address my letter to the mother of my hero--my son's organ donor.  In my mind I think of your child as Superman, because they saved my son's life this fall by giving him their liver. But I also think of you and your family as Super, for in the midst of unimaginable pain watching your loved one die, you chose to help my son to live. Thank you, thank you, thank you for your unselfish desire to see something good arise through tragedy.

 My son graduated from high school last May, as the valedictorian of his small town high school. Looking back, we now realize he had the early symptoms of rising bilirubin--unexplained itching and insomnia. Since he hadn't been sick and is a young, healthy farm kid, we never suspected liver failure or an autoimmune disease! As the summer went on, the symptoms worsened. We visited the doctor many times, to be given new creams or steroids to control the itching. Nothing worked, until one day in July, I noticed his eyes were slightly yellow! That sent us to the KU Medical Center to the excellent team of Hepatologists. Even then, we thought he had slight liver damage due to an acne medicine he had been taking. Unfortunately, he continued to get worse and we found ourselves back in Kansas City with him undergoing tests we had never heard of. He was diagnosed with Primary Sclerosing Cholangitis (PSC) and although it usually takes years to ruin your bile ducts, he found himself on the transplant list within weeks.


It was quite the shock to see my once very healthy and active son virtually bedridden, barely able to eat or drink. He lost 35 pounds in 3 weeks and when he was unable to eat at all, the doctors admitted him to the hospital to await the transplant. To be frank, he nearly died due to liver failure. His bilirubin was off-the-charts high and he was weak and miserable. He lost muscle as well as body fat as his body, starved for protein, used his muscle for sustenance. I sat bedside, unable to help him or even comfort him as he grew weaker and quieter.

During the first week of classes at Kansas State University, his identical twin and siblings all went to school, hoping to get the phone call to bring them to Kansas City for a surgery that we all knew would save his life. But we also knew that call meant that someone else would be grieving over a lost loved one. So when the call finally came, at 7:18 pm on August 27, 2014, we couldn't rejoice, but instead prayed with my son for comfort and peace for you and your family.

He received your loved one's liver on the night of August 28--a day that will forever be burned in my memory--and yours, I'm sure. The first days after surgery were rough. He had been so very sick, that he had a lot of recovery ahead. But he gained strength every day and finally also gained weight. Today he is a freshman at K-State, following his intended path--if just a semester later. He is healthy, active and doing what he loves!

"Thank you" seems so insignificant--but it is all I can think to say. I give thanks for your child, for you and for your generosity. I pray that knowing that my son is alive and healthy because of your child's gift will give you comfort and peace. I am so grateful that you chose to allow your special person to become my hero. I cannot imagine the pain of losing your child, but I came very close. You are in my thoughts every day, and I want you to know that my boy is doing his best to live a good life to honor your child. I continue to pray for you and look forward to the day I can thank you in person and learn about the person you raised who became my hero--my Superman!

Very sincerely,
A mom who owes her son's life to you


The previous letter is the first I will send to the organ donor's family who donated a liver to my son. We are not allowed to know anything about this family for a time, as they need time to heal from their loss and my son needs time to recuperate. After a certain amount of time, if they are willing and we are willing, we may meet them in person. I look forward to that day, although it scares the hell out of me, as well.  I refer to the donor as their "loved one" or their "child" not knowing the age or sex of the donor. All we know is their family made a very difficult decision at a time when they were hurting the most. 

Please consider registering now to be an organ donor, so if the time should ever come, your family won't have to make that decision. Go to OrganDonor.gov and register today.


19 comments:

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    1. Thank you, Jennie. I hope it helps the family heal. It definitely helped me!

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  2. Mrs. Debbie, This is so wonderfully written. I cannot imagine what the family of the donor went through, but what a wonderful way to let the person's legacy live on than saving someone else's life.

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    1. I agree about a legacy living on. I feel that way, and so does my son. He is very honored to have this gift and he will take good care of it!

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  3. Thank you for sharing this very personal letter. I am sure that family will be appreciative to know how well Tyler is doing and that their generosity saved his life. My best to all of you and to them!

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    1. Thank you, Kim. This was a tough one to write--I don't want to get it wrong! But the support is overwhelming. I have mailed it today and hope to hear that they received it soon!

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  4. Hi Debbie,
    My name is Tammy Rock and I am friends with Jennifer Becker and Ann Sankey. We recently left the Wichita area to be in KC with our son who just had his 2nd liver transplant Oct 13,2014 at KU. First one was in Omaha. Conor also had PSC. Started out with Ulcerative Colitis at the age of 9 and got PSC at 12. Made it almost 10 , LONG years before 1st transplant. We tried living donation at Omaha from a very dear friend but too many complications. Received cadaver liver last fall. I won't babble too much but would love to visit with you sometime. I am new to FB but maybe we could private message and share emails or phone #'s if you would like. Glad all is going well for your family. From one grateful mom to another! Nice to meet you!

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    1. Tammy, I would love to catch up with you someday. Thank you so much for sharing your story with me. I hope your son is doing well with his recent transplant...we are actually on our way the end of the month for Tyler's 6-month check up at KU Med. I can't believe it has been 6 months since I nearly lost my boy. He is doing great today--taking his meds, gaining weight back, and being a healthy, active college student. I will send you a private message and we will connect, somehow!! Thanks again!

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  5. My daughter Chloë died when she was 14 and a half (a year ago last November). The nature of her injuries allowed her to donate her heart, lungs, liver, kidneys and countless tissues. Your letter is touching and as Chloë's mom, I found it to be meaningful. I hope the heart and the lung recipients choose to write me soon but I have heard from the recipients of each of her kidneys. Good luck to you and your family.

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    1. Bless you beautiful heart! I hope you receive many, many letters of thanks and support! It truly is a hard letter to write--not only because we don't know who we are writing to, but also because we know they are grieving. But I just knew I had to send this letter at this time. I hope it brings comfort to our donor's family. Thank you so much for your comment, Jamayca!!

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  6. Debbie - What a wonderful letter. We donated Ross's organs after his accident, and I know my mom treasures each letter she gets from a recipients family.

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    1. Alison, I was thrilled to be able to give your mom a big hug last week! She also shared with me that Ross was a donor. Bless you all and you are in my prayers!

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  7. Absolutely beautiful, thank you for sharing. As a former peds surgery nurse who cared for many many many pediatric liver transplant patients, this brings back lots of memories and I pray that it will reach out to many people to be donors.

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    1. Thank you Sarah. I think you must be a very special person--to have taken care of those kids and done what they needed! Our nurses were angels to us--and they made the wait tolerable, and the recovery powerful. Thank you for all you have done! I love nurses!!!

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  8. I'm also the mom of a child who received a liver transplant. Almost the same story. Healthy 21 year old, never sick....had 3 days of nausea and abdominal pain and then woke up in acute liver failure. We never did get a diagnosis. I took him to the ER on August 10th, 2008 and he got his transplant in October. Unfortunately for my son, when his liver failed it also caused his bone marrow to stop producing red and white cells and platelets. Eighteen months after his transplant he died in my arms on August 9th, 2010 of sepsis and leukemia related to the immunosuppressive medications meant to keep him alive. I'm so glad your son is a survivor. I know my son inspired many people here in the Los Angeles area and across the nation to sign up to be organ donors and that will be his legacy. Shirley - mother of Dimitri 7/13/87 to 8/9/10

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  9. Oh, Shirley, your comment gave me chills! I'm so sorry to hear you have lost your son but I am so impressed with his legacy of encouraging organ donation! Dimitri will live on in your heart and in the lives of so many because of his encouragement. So many people are afraid to even discuss organ donation because it means someone dies (although there are living donors, too, of course) but if we can talk about it when we are healthy and happy, IF a tragedy ever happens that we are faced with the decision, we can make it with confidence and hopefully comfort. Bless you and your son. A mother should not have to watch their child die. You are in my prayers.

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  10. Debbie, what a beautiful tribute to a family who gave you so much. Many see the side of transplant where the person thrives and you are recognizing the side of someone who lost the battle, and through tragedy, did something incredible. Good for you for being so gracious.

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    1. We are blessed to be able to enjoy the side that is thriving, as well. My son is one year and days past transplant and is doing sooooo well! But that anniversary was difficult as we know it is also the anniversary of one family's loss. I hope that Tyler's success may help this family heal. Thanks for stopping by! I am encouraged by your energy and encouragement on your blog as well! Keep up the positive spirit!!

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