The Continuing Bond of Cooking With Austin

Written by Dianne Gray for the Association of Death Education Counselors (ADEC) Forum

Although I was well aware of the importance of healthy eating during pregnancy, I was not aware of how the simple act of being so fastidious in my choices would create the beginnings of a bond between my son and my- self. At the age of 28, I gave birth to a baby boy, Austin. Like most mothers I was consumed with all of the rituals and mundane issues having to do with feeding my firstborn child. How much? How often? Is he getting enough? The amount of thought I put into the matter is mind boggling. Many people engage in this endless dialogue that goes along with the care of their loved ones...young and old alike.

What I did not know, was that Austin was born with a rare, incur- able disease, Neurodegenerative Brain Iron Accumulation Brain Disorders ( He seemed to be a completely normal healthy blonde haired, green-eyed little boy until he was seventeen months old. At that point, he began falling down over and over all day, and at three was diagnosed with Retinitis Pigmentosa. At almost five years old, he was also diagnosed with NBIA Disorders, a rare recessive genetic disorder that would one day take his life. This “death sentence” meant that we had to live life well, breathing it all in, enjoying every moment we had together. So to endure the days and weeks ahead, I fell back onto what I had been taught by my own grandmother and aunt— that the kitchen was a place for sharing, laughing, loving and healing. That time shared in the process helped us to deal with the unspeakable brokenness that we were all experiencing.

So, we set off creating havoc in our kitchen, my kids standing on chairs at the counter, flour flying, measuring cups everywhere, sugar being dropped on the floor, our hands in the bowl. When six-year-old Austin could no longer stand, his little sister and I simply started mov- ing the bowls to his wheelchair, next to the counter. The “how” of it be- came as important to us as the “what” of it. The memories created and the joy shared during that time can never be taken away.

It was during his later elementary school years that life for Austin and for us changed the most. He stopped feeding himself, he needed a feeding tube, and his speech slowed. Looking back, those years seemed to revolve around our connection to food, even as Austin’s method of eating changed. One rainy afternoon sitting with Austin in the kitchen, I realized that his ability to speak was nearing an end and I could feel the clock ticking with a sense of impending doom. I needed to ask him now what he wanted to see, to do, because tomorrow he might not be able to tell me!

From the complexities of my adult mind, I had prepared a mental list of what Austin might say he wanted to see or do: go to Disney World or meet Buzz Light Year? All I knew was that whatever he said, I was prepared to make it happen. And in one of the most extraordinary moments in my life, Austin said in his sweet voice with slowed speech, “I want to see inside the refrigerator.” In that singular moment, I learned a lesson that will stay with me for the rest of my life: That the hours spent in the kitchen, creating, laughing, sharing, were all stored in his heart. His body was no longer able to cooperate, but in his heart, Austin was still searching for that connection with us, seeking fun, joy, and shared moments, doing what we had done time and again with such happiness.

That day, I learned a little bit about myself, as well. First, I was shocked with myself. I felt that I had been audacious in thinking so grandly and forgetting that when all is taken away, what is most true in one’s heart, can often times be the most simple. It was not clearly spoken, but it was absolutely understood, that this bond that had been created between us, and started two generations in the past, had left its mark on him...that in the kitchen cooking and baking together we found our happiness and our joy.

As Austin’s health deteriorated over the years, our relationship with food changed and again, it created opportunity for new joy. We piled into bed together to watch TV with popcorn, rubbing it instead on his tongue. We found that we could share chocolate ice cream by rubbing the back of an ice cream coated spoon on his tongue. It was not the same as eating, but Austin showed his delight with a luminous smile.

Unfortunately, Austin passed away February 25, 2005, 18 days after I made a gut-wrenching medical ethical decision, with the guidance and help of hospice...which again involved adaptation and food. Placed in the most difficult dilemma of my life, hospice and I decided that Aus- tin’s food intake needed to stop: he would never get better, the pain was unmanageable, and it was determined that the dying process had begun. We were simply at the end.

As stated by Klass (1996, p. 202), “parents often establish a connection with the dead child through a linking object (Volkan, 1981) that will transmute over time, but will be long lasting.” In my case, I have found I have been mourning not only his loss, but our connection to those moments we once shared in simply cooking, baking, eating, while sharing laughter and smiles.

Klass, D. (1996). The deceased child in the psychic and social worlds of bereaved parents during the resolution of grief. In D. Klass, P.R. Silverman, & S.L. Nickman (Eds.), Continuing bonds. New understandings of grief (pp. 199-215). Washington, DC: Taylor & Francis.