There is No Greater Gift - Cincinnati Children's Blog

There is No Greater Gift

September is a big month in our home for a few reasons. September is Childhood Cancer Awareness Month.  As a childhood cancer family, we try to spread the word as much as possible.  We wear gold.  We paint fingernails gold.  We plaster ribbons on our vehicles.  We write letters to papers and encourage support of families with children who have cancer.

September is also the month Willamina was born.  This year she turns six! Parents, I know you can relate when I ask, “Where does the time go?!?!?” My baby is no longer my baby!

Finally ten days after Willamina’s birthday, we will celebrate her “liver birthday”, the day that she received her donor liver.

Looking back to September 2008, the whole idea that Willamina had a liver transplant seems completely surreal.   We had been told that the only chance we had of ridding Willamina of her liver cancer was a liver transplant.  We were scared.  We were worried. We knew that we had no choice but to keep moving forward and hope for the best.

When your child needs a life-saving transplant, you are faced with a dilemma.  You want to pray and hope for that organ that you need, but you have immense amounts of guilt because you know that for your child to get a chance, someone else loses a child.  I have spoken with dozens of transplant families and we all have the same feelings as we think about the loss of another family’s child.  We mourn as well.

I struggled with knowing that the call for us and the relief we would experience at that moment meant that somewhere another family was in pain and dealing with loss.

I came to the conclusion that the only thing I could truly hope for and ask for was that a family would make the decision to donate.  Twenty days after being placed on the transplant list, we got the call.  It was around eight in the evening.  My husband was on his way home from work.  He had stopped at our local pharmacy and while checking out, his phone rang.  It was time.  He called me and we went into panic/fear/hope mode.

It has been almost five years since that call.  Never far from my mind is that family whose decision gave us hope.  Somewhere there is a family to whom we are connected.  Because organ donation is an anonymous process, we do not know anything about Willamina’s donor.  We are not discouraged from writing letters as long as we do not provide any identifying information past first names. I did write our family several years ago.  At that time, we were dealing with Willamina’s relapses.  We were still unsure as to her future.  While I had secretly hoped for a response, we did not receive one.  I suppose it was selfish on my part to hope for connection with our donor family when I had (and still have) no idea the circumstances of their loss.  I would never want our joy in still having our daughter to bring another family pain.

As Willamina has gotten older, we have explained more about her transplant.  She knows that her old liver was sick.  She knows that she needed a new one.  Recently I explained how she received her liver.  How her liver was a gift from a family.  It was an interesting conversation to embark upon.  Let’s face it, there are no guidebooks on how to talk to your child about where their liver came from.  I did make the discussion child-friendly.  She understood much of what I told her.  When we were done, she didn’t ask any questions, she just looked up with her sober blue eyes and said, “That is a sad story, Mama. . . “

I do not know if I will ever get the chance to speak to Willamina’s donor family. The words, “thank you” will never be enough.  I am completely humbled by this unknown family’s gift of grace.

I think that I can speak for most recipient parents whose children have had transplants, when I say that every day is sweeter.  We hug a little more.  We love a little more.  We think about the families who have given our sons and daughters the chance at life.  We feel connected to our donor families.  We hold your child as dear to our hearts as our own.

Yes, my dear Willamina. . . You are right. Part of the story is a sad story but part of the story is hopeful and wonderful and sobering.  You are here.  You are turning six.  We have had you in our lives so much longer than we once thought we would.  One day, when you are older, I hope that you will truly understand the selflessness that one family demonstrated toward us .  .  .

Thank you to all who want to donate. Thank you to those who have made the difficult decision to donate. You save lives. There is no greater gift.

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Katie Clayton

About the Author: Katie Clayton

Katie is mama to three girls, married to Will, a speech pathologist and a cancer mama who knows the power of sharing her story. Katie blogged every day of her daughter Willamina's cancer on CaringBridge and had over half a million visits on the site during her most serious cancer battles. Willamina is now cancer-free and the Clayton's are enjoying their farm and menagerie of animals, but Katie's commitment to connecting with others about hepatoblastoma remains. She's now reaching out to families with children diagnosed with the rare cancer to offer support and advice.

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