Earlier this year I was doing some research for my book, Normal Broken (available for pre-order now!), and came across the work of Stephen Jenkinson. An absolutely fascinating man who has a degree in theology from Harvard and a masters in social work, who used to work in palliative care or what he calls the “death trade”, and now travels the world performing a spoken word concert with the multi-instrumental Gregory Hoskins called “Nights of Grief and Mystery”. Naturally, I bought tickets to his New York City show… and then promptly forgot that I had done so until days before the show.

Thank goodness for my cousin, Maryclaire (AKA MC), who is always up for an interesting and unconventional evening, and also would walk with me to the ends of the Earth to support whatever it is I’m currently working on or going through.

            “Should I bring a box of Kleenex?” She texted me.

            “I don’t think so.” I answered back but packed a travel pack of tissues just in case.

As we took our seats in the Symphony Space theater on 95th and Broadway, I admitted I had no idea what to expect from the evening. Shortly after, Stephen and Gregory walked onto a mostly bare stage that had been preset with a stool, a chair, several microphones, a music stand, and a number of instruments including a guitar, trumpet, small keyboard and one of those audio looping machines that is controlled by the artist’s foot.

The performance began with a beautiful song about someone who is dying and how they wish their loved one could come with them but, of course, they can’t. I was immediately grateful that I had packed the tissues, though not nearly as grateful as when maybe 20 minutes into the performance Stephen pivoted to talking about the death of children. I was not prepared for this. MC squeezed my hand and didn’t let go until the section was over.

Typically, even people who talk about death and grief steer clear of childhood death as it is deemed taboo and entirely too uncomfortable. Stephen actually addressed this by acknowledging that our culture says that children aren’t supposed to die. That they shouldn’t die. The problem, of course, is that they do. This thing that is not supposed to happen happens and then what? Who is to blame? Cue parental survivor guilt.

The thing is, we are all going to die. Every last one of us. Age is not factored into the circle of life. There is no should, supposed to, or fairness about it. It is a truth of our world whether we want to acknowledge it or not.  Stephen then shared the story of a family he had visited while he worked in hospice care. Their little girl was dying from leukemia and the family was understandably distraught. For the loss of their child, but also because she had not gotten to live a full life.

I squeezed MC’s hand back a little extra hard and tried to stifle the sob closing in on my throat. What in the actual hell had I been thinking buying tickets to this show? But I was enraptured, stuck to my seat, I couldn’t get up and I didn’t want to.

As Stephen’s story progresses, far more poetic and melodic than what I am about to recant here, he speaks to the dying girl and explains that her family is upset because she won’t get to live a full life. To which the little girl scoffs as only little girls can and replies with a few of the amazing, yet everyday experiences she has had. I will refrain from sharing the full story here so as to not totally exploit the magic of Stephen and Gregory’s show, but you get the gist.

OF COURSE, this was something I could relate to. How in the world could I believe that Adelaide had gotten to live a full life when it had been so compromised by illness and pain. When it had, to my perception, been cut so tragically short. But then I imagined what a similar conversation with Adelaide would look like.

“Hey, baby girl. I miss you. So, I saw this guy talking the other day about living a full life and I wondered if you feel like you got to live a full life.”

“Mommy, what are you talking about? What about when I got to ride horses in therapy, or put my feet in the ocean? What about my morning cuddles with Chacho or my evening cuddles with you before bed? What about my afternoon walks with Nurse A where I could feel the wind on my cheeks and hear the birds in the trees? What about all the people I got to meet, who held my hand and spoke to me? What about how much my family loves me?”

And she would be right. Because who determines what qualifies as a full life? I suppose it’s the same people that decided that children shouldn’t die. Because I just don’t think that the fullness of a life is determined by the number of days, distances traveled, experiences had, or achievements reached. I’m not sure I know enough about enough to say for sure what qualifies – but my guess is that it has something to do with knowing and feeling loved. And if that’s the case, then my little ladybug lived a life fuller than anyone could wish for.

Image description: Adelaide and Jackson laying down next to eachother on the couch. Jackson has his arm over her and is wearing a black t-shirt and grey shorts. Adelaide’s eyes are peeking open and she looks content, she is wearing a navy blue dress with flowers and ladybugs on it. She has a nasal cannula taped to her face and you can see a feeding tube coming out from under dress.