I spent part of my Friday at a local hospital with parents facing the most awful choice imaginable: letting go of a beloved child. Same situation my kids’ father and I found ourselves in nearly 20 years ago, when our daughter was not going to recover and we had to decide whether or not to grant permission for her to be an organ donor.

As it happens, a friend of a friend was one of the nurses caring for this dear boy. When the prognosis was confirmed for the family and the parents began facing their newest reality with all its choices, including organ and tissue donation, they were torn and undecided whether or not to move forward. They met with the professionals in the matter, talked to their physicians and religious advisers, and were still torn about what to do and how they felt about it. From personal experience I know it’s far too much information to have to absorb when the world as you knew it is metaphorically going up in flames. They expressed a wish to talk to someone else who had been through this process, preferably with a child. While I did not know the present day organ and tissue representatives, the nurse friend of a friend knew me and our story and suggested they look me up in their system; he knew of my work speaking to nurses and doctors and felt I would be an exceptional candidate for this situation as well. If the information was out of date (it was, but I have had the same cell phone number for a very long time) he could get in touch with me by contacting our mutual friend. Whatever the back story that got me there, the connection was made. Once the situation was explained, I literally dropped what I was doing and cleared my schedule to meet with these grieving parents.

This couple are quite active in their community and church, so there were a lot of family members and supportive friends holding vigil with them. I felt the apprehension and suspicion as I walked up with the donor service coordinator, because I believe the perception was that I was being brought in to help close the sale, so to speak. Nothing could be further from the truth. From the moment of the phone call, I was just another grieving mother meeting with others who have joined this somewhat exclusive club bound together by tragedy.

We sat together in a small conference room. The donor service coordinator, the parents, their religious advisers, and me. From the start, I assured them I was not there to try and convince, pressure, or persuade them of anything. My sole purpose was to offer them whatever comfort and support they required, and they could ask me to stop talking or even to leave without hurting my feelings. They could also ask me anything they wanted to know or felt was important for them to know about me and my life and our choices when in the exact same situation. This was all about them, period.

I told them the story of my daughter, start to finish. I told them how she had collapsed at school, the questions about drugs (she was only 12, and how naive I still was believing children that young could not have substance abuse problems), the race to figure out what was wrong, the horror of the diagnosis and from the first conversation the caution of how dire her situation and to “prepare” ourselves. Within 2 hours after that phone call from school, I had brain specialist doctors telling me that my healthy, beautiful, newly minted 12 year old (her birthday had been 5 days prior) might not survive this challenge.

I recounted the overnight vigil at her bedside, watching the brain pressure monitor creep upward, my heart breaking over and over with each and every alarm that sounded. In the morning we got the bad news – she had no brain function, there was nothing more they could do for her, and she would not recover. At my question of what happened after she was declared legally dead, I was told about organ donation and that it would be presented as an option for us. I knew immediately before even talking to the service coordinators that it was a right choice for us. It is a decision I have never regretted.

There is no way for me to tell that story without tears. Even now, nearly 20 years later, I was talking with tears streaming down my face and alternatively blowing my nose, wiping away tears, and continuing the story.

Looking back, I would have done just about anything to take away the pain. Giving to others at that moment seemed like the right thing to do, because perhaps there would not be another parent or sibling or spouse suffering as we did right then. It seemed so normal to me to want to hang onto her, to not let her go. Yet when faced with the reality that her eyes were never going to open again on their own, that I would never hear her voice or her laughter, that I would never feel her arms wrap me up in a hug, I knew I had to let her go. Never once did the thought that she lived on through organ donation enter my mind; she lives on because I and so many others remember her as she was in life and continue to love her and miss her every single day. I also remember how she looked lying in that bed with tubes in her arms and monitors blinking and beeping, holding her still-warm hand as she was wheeled off into surgery, kissing her goodbye that final time. I remember all of it.

But in the last 20 years I have not had even one second of regret for our choice to let her become an organ donor. In that moment we lost someone so unique and priceless to us, and whatever was left could be shared with others. My girl was gone from that body – her spirit, her soul, whatever it is that animated that flesh and made it what I love – and she was a generous child and would want others to have what she no longer needed.

I was there for nearly 2 hours, talking and grieving with those parents. In the end, the choice to go forward with organ donation was their own, and I am hopeful that in time it brings them similar comfort and peace.

The funeral will be next week, and M and I will attend. We will slip in quietly and sit near the door; we will be an unobtrusive as possible so as not to intrude on this family and their grief. Because this is not about us. This is about life and how the unfortunate specter of death touches us all.

M was torn about whether or not it was right for me to go when called; he knows how upsetting it such events always are for me. But how could I not go? How could I step back and not be with people who sought answers from someone who has been in and come out of the very darkest moments they face? For each of us the journey through life is unique. But I could not turn my back on these or anyone else in this particular situation. I do not desire or deserve any form of praise or positive comments for being a decent human being, and I write about it in hopes that next time – and I wish there was never a “next time” in that I wish no other parent ever has to suffer such a loss – it will not be so hard to be brave and do the right thing.

Our lives have continued after such a devastating life. It’s not a better life, or a worse life; it is simply our life. There is a unique color and flavor to its richness because we were blessed with a brilliant and beautiful soul that dazzled and mesmerized us for too few years. While I have always believe children are a gift on loan to us, it is almost impossibly hard to have to let go when it’s so damn final.

I miss her; every single day I think about her and miss her presence. I shed tears a few times a year, because the loss and the grief have never faded away completely. Yet while 12 years and 5 days is far too short, I have a grateful heart full of memories. I still hear her her final words to me – I love you, mommy – in my dreams. And it makes my life sweet and very much worth living.

Rest in peace, Sugarbear. We love you always and miss you forever.

13 thoughts on “When being decent requires courage

  1. You are such a kind and brave person. This more then being a decent human being. No one would ever think you weren’t a decent human being if you weren’t able to share your story again. A willingness to endure that much pain is help others is very special. Take care of yourself.
    *Still reading along but not able to comment much these days.

    1. Thanks, SAK. It’s just one of those things you just DO and worry about consequences later. I’m glad you’re still reading and hope you’re doing okay. My emil is always open if you ever want/need to chat.

  2. Janelle you do a good thing when you expose the rawness of your memories in facilitating the bridge of decisions that others have to go through

  3. As i read this I was reminded of II Corinthinans 3:4 which states: “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.”

    You were able to share your experience and pain with another family and offer them comfort in doing so. Thank you for doing so

    1. Thanks, A. I am still living and therefore part of a community at large. To be part of this smaller faction is not something I ever wished for, but it’s my reality and I cannot NOT participate when needed. It is just so sad.

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