Interlude Chapter: Confessions on my Organ Donor and her Family

I thought a lot about my organ donor after receiving my second kidney transplant at 12-years-old.

I thought about what she looked like at 4-years-old. Did she have baby fine brown hair and bright blue eyes? Or did she maybe have frizzy hair like I did when I was a little girl? Or did she maybe have blonde curls and sweet brown eyes? Did she wear pretty, frilly pink dresses or was she more a tomboy who loved to get dirty in jeans and a T-shirt?

I thought about what she was like. I imagined that maybe she liked to color like when I was a little girl and was in awe over how a picture came alive from the blends of colors. I conjured up images of her reading fairy tales like I once did and getting lost in the whole magic of them. I wondered if she was quiet and pensive or a burst of energy and always laughing and talking.  And, what about what she liked to do in the short 4 years of her life? Would she have rather watched TV shows like “Seseme Street” and “Barney” or was she the one who loved to play with toys and find out all their hidden quirks? Was she in pre-school before she died and, if so, did she mingle with other children or was she the observer of everything and everyone?

My mind was invaded with images of her family. Maybe her mother brushed the knots out of her hair and then wrapped her silken hair in two tight pigtails or plaited braids. Perhaps her Father cocooned her in feather-down blankets and read her stories to fall asleep into a happy and dream-filled land. I wondered if she had any siblings and if they had played games, chased each other around, and fought out of love and hate rolled into one.

As happy and euphoric as I was after the success of my second kidney transplant and when I was freely out of the hospital, another feeling that attacked me full throttle as I began my new life was guilt. I felt guilty to be alive, while she was dead. It was unfair and wrong that I should be alive due to their daughter’s death. I was combined grateful, happy, humble, vulnerable, and sick with shameful guilt when I thought of my organ donor’s parents and entire family that their loss was my gain. I already began to dream of thanking them for this priceless gift, but thank you seemed stupid and small compared to their monumentally selfless decision in their time of tragedy. I would not be alive if it were not for them and their decision, and what made me feel ten times worse and left me breathless was the hardened fact that they had such a short time with their daughter. It gave me a dull and numbing ache that ran throughout my body. How could I ever live my life knowing that someone else had to die? How could I ever thank them for their daughter’s kidneys functioning in my body and allowing me to taste, see, hear, smell, and feel all of the world and life in its beauty when their little girl was not physically there?

In addition to the battled thoughts and feelings that wrestled within me, I eerily felt that my organ donor’s spirit was always with me and in me. The stitches that dissolved with time formed a jagged scar as my proof. I dreamed about her. I saw us coloring together and her showing me vibrant pictures that I held tight and treasured. In my dreams, her hand fell into my hand so easily and perfectly. She looked up at me with wide eyes and an innocent and radiant smile. I never formed a clear image of her in my dreams, but I somehow knew that it was her holding my hand or coloring with me or chasing me in the fields of green with wildflowers. When I woke from my dreams, I knew that she was still living on in me and giving me this strength that there was something more that I could do and was meant to do in this new life.

There is not a breathing, waking, and extraordinary day that goes by that I do not think about my organ donor and her family and reaching out to them.  My hands shake and I break out in a cold sweat when I think about contacting them. What would I say in what I wrote to her family? How would they react? Would they hate me and not even want to receive any word from me? Would they react in a curious way and envelope me in their arms, kiss me, and believe what I believed that heir daughter was living on in me?

I was forever indebted to my organ donor and her family, and they were forever a part of in my life. I contemplated how I could ever make it up to them for their tragic loss. When I experience all the simple and beautiful moments in life that I missed out on and failed to focus on because of one health crisis after another in my childhood, the answer comes simply to me: Live my Life. And, so I made a decision to do just that and more. Only time would tell what this “more” part would be.

Living my life and doing something more with it was my promise to my sweet child organ donor, her selfless and courageous parents, and myself who had just embarked on the greatest journey to life and finding out who I was and what I was capable of with this second kidney transplant.


Jennifer said...

Wow, I don't ever remember you telling me that you had dreams about your donor. Maybe she was communicating with you from beyond to tell you she was looking after you.

Great writing as always, Mare!

Dave said...

You were very lucky to get a kidney transplant. Over half of the 107,000 Americans on the national waiting list will die before they get a transplant. Most of these deaths are needless. Americans bury or cremate about 20,000 transplantable organs every year. Over 9,000 of their neighbors die every year as a result.

There is a simple way to put a big dent in the organ shortage -- give organs first to people who have agreed to donate their own organs when they die.

Giving organs first to organ donors will convince more people to register as organ donors. It will also make the organ allocation system fairer. People who aren't prepared to share the gift of life should go to the back of the transplant waiting list as long as there is a shortage of organs.

Anyone who wants to donate their organs to others who have agreed to donate theirs can join LifeSharers. LifeSharers is a non-profit network of organ donors who agree to offer their organs first to other organ donors when they die. Membership is free at or by calling 1-888-ORGAN88. There is no age limit, parents can enroll their minor children, and no one is excluded due to any pre-existing medical condition.

Alice said...

I will comment in my letter.

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