Choosing to Live Even as a Child is Dying

Until her last breath, I never believed my daughter Madison was going to die.  Three years after she took that last breath I considered that maybe she wouldn’t be coming back.  Denial is a huge part of parental grief, a necessary part; it’s what helps us to get up in the morning.

Denial was exactly what enabled me to mother my child all the way through her transition.  I understood that she might die,  and we made all the necessary calls to get friends and family to our home when Maddy’s breathing changed.  We didn’t put her through extraneous testing or painful treatments.  It was important to us that Maddy be able to live with the best health possible and that we soak up every minute of every day.

I lost a day during my daughter’s life  “dealing” with her impending death.  “Anticipatory grief” is what our therapist called it.   She wanted me to be able to accept Madison’s departure and to know that I would be able to function afterwards; several clinicians echoed her recommendation.  ‘Why,’ I thought to myself, when we had so much life to live? Did it mean we should stop teaching our toddler how to use the potty, or not show her how to put her  chubby board books back on the shelf, or not celebrate when she put her little purple Mary Jane’s on the correct feet?

We already let her over-water the plants, let her spill half the birdseed onto the ground instead of into the feeder; if she didn’t have the prognosis, we probably wouldn’t have laughed and encouraged her as much as we did, probably wouldn’t have spent hours harvesting grapes off our trellis that we knew she would never eat. I know we wouldn’t have bundled her up and taken her to the park after dark because she wanted to swing, or stayed in our pajamas all day, or thrown on clothes from the hamper when we had to go out to the store.

Our house would have been a lot cleaner and more organized; but then we wouldn’t have had time for the beach or an impromptu celebration for no reason at all.  Should we have stopped parenting, stopped having fun, stopped teaching her the things she needed to know to live, because they said she was going to die?  Should we have put what little life she may have had left on hold so we could process our grief?

Convinced by the professionals that I was helping my family by taking “a day to deal with my feelings” about Maddy’s impending death, I left my daughter with her six-month death sentence and her other mother (my partner, Nancy), forcing myself to commune with nature and get in touch with my feelings.

Who was I anymore? I still was Maddy’s mom, but for how much longer.  I drove around in circles until my massage appointment. I heard myself tell Maddy’s story. “My baby has cancer, she went through treatment and relapsed at the end of her year long battle.” I witnessed for the first time a stranger being at a loss for words; were there any words for that kind of confession?

Something inside knew it wouldn’t be the last time people would hear my story and be shocked. It wouldn’t be until six years later that I allowed myself to tell that part of Maddy’s story. The massage didn’t open my denial chakra; maybe the Jacuzzi could be the tonic to finding the acceptance people talked about. For the next hour, I sat in the warm water expressing breast milk into the water. Streams of milk poured out of me. I watched myself, felt sorry for the woman in the tub, judgmental that this woman was taking time away from her child. How could she be so selfish, and look, all this good milk wasted!

I tried crying some more; it felt forced so I stopped. Still, acceptance never came.

My child wasn’t dead. She was probably at the park, her little fingers pushing the sand, talking about birds, trees and butterflies.

In my heart, I knew that thinking, believing, knowing and possibly even accepting my child’s death was probably going to take me my lifetime to sort out; it certainly wasn’t going to happen in a day.  I took a quick shower, rinsed milky water off my skin and felt more sorry for the next person to use the dirty Jacuzzi than I did for myself. My world would be changed soon enough; I was chose to go on about the business of living.

I am glad I did.

Lisa Buell

More Articles Written by Lisa

Lisa Buell is a writer, activist, mother of three and parent of two. She works with Children’s Hospice and Palliative Care Coalition, Partnership for Parents www.childrenshospice.org , as a parent advocate bringing a parent’s perspective to the development of palliative care programs and policies. A published author, Lisa is writing her first book, entitled “Call Button,” a collection of essays about the continuation of life in the face of treatment, navigating the waters of grief, celebrating communities and the clinicians who care. To contact Lisa email her at [email protected]

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