Tu BiShvat bounty
One of my mother poems in the Jewish Journal

Eulogy for a child with Canavan's

I don't usually share eulogies here. They are personal, and this blog is public. But this is an unusual situation, and I think the eulogy might be helpful to others, so I've removed identifying material in order to share the essence of what I offered at a funeral a few days ago. If these words are useful to you, you are welcome to adapt them.

If you got here by googling Canavan's Disease, please know that there are informational links at the bottom of this post.

When a child is born, we rejoice. We imagine possibilities. Our minds run away with us, providing us with dreams and imaginings of wonders we hope the child's life will hold.

When this child was born, no one imagined that his life, and his parents' lives, would be circumscribed by a neurodegenerative disorder... nor that he would come to be such a ineffable presence in the lives of those who knew him, cared for him, and loved him.

Because of the dangers of Canavan's, this boy was never alone. His parents, and later his nurses, took constant shifts in caring for him. He communicated with his eyes and, for a time, with sounds. When he was in his parents' arms or enjoying therapy his smiles and laughter brightened the room.

His was not the life his parents might have dreamed before he was born, but it was his own, and he lived it wholly. He experienced love in the touch of caring hands and the attention diligently paid to the apparatus of his care.

His parents, and his caregivers, experienced a deep connection with him. And they knew that connection was reciprocated, and they knew that connection was real. Every time he fought his way back from another illness, another hospitalization, they knew that -- in his mother's words -- "he still wanted to be here."

His parents knew him without words. They teach us that we can know each other beyond words, and listen deeply past the words we do hear, to something deeper, more ineffable and more lasting.

The same was true of his nurses, his caregivers, physical therapists, music therapists, those who lovingly massaged his body to help preserve his muscle tone, the teachers who came to offer him a window into the wider world. When he lay on his bed in the sun, his parents called it "his beach." Once his health became too poor for him to risk the trip to these hills, his parents preserved his room here intact, a place for their son in this town they called "the home of their hearts."

I was blessed to spend an afternoon with this young man and his family last month. I sang him the lullabies I sing to my own son, and his eyes stayed on mine. I experienced his quiet presence in the room, and the sweetness of his neshama -- his soul -- was clear without any words at all.

I am humbled by this child's life, and by the boundless well of love and compassion which his parents and his caregivers expressed every day through a million acts of caring and nurturing.

He  lived, and struggled, and was loved. He experienced the world from his own unique vantage. In the wake of his death, there is grief. Nothing we can offer will soothe the empty place where he used to be.

May his soul soar free, no longer fettered by limitations or by suffering. And may those who loved him find comfort in the knowledge that his suffering has ended, and that in caring for him so lovingly, they epitomized some of the best of what humanity can be.


For more information:

About Canavan Disease

National Tay-Sachs and Allied Diseases

Center for Jewish Genetics: Canavan's Disease

Jewish Genetic Disorders

Support for Families With Canavan's