Communities of Grieving

Not one person, not even anyone in my son Maxie’s family, had any idea he was nearing the end of his life. I really thought he’d live to be 25, 26, or older. I was still working towards a third gene therapy treatment for him if the risk-to-benefit ratio was close to nothing. And my work continues for all the other families and children with Canavan Disease, but now it’s in Max’s memory.

Whenever someone healthy dies, even if they live with a life-limiting illness, it’s still a shocking and devastating loss. I’ve seen this happen many times. It was a fear I confronted daily, especially when I was getting Maxie ready for bed with our nightly routine and goodnight kisses. I made him promise each night that I would see him in the morning. He kept this promise until I felt his heart beat for the very last time beneath my hand.

A Death Within a Community

For over 22 years, each time a child in our Canavan community has passed away I would cry for days, read everything the family wrote about their child, honor their memory by sharing anything they posted, and sharing pictures on my page and non-profit pages with their approval. I know these things were just drops of water in the vast oceans of grief that they’d be going through for the rest of their lives, but I didn’t know what else to do.

I know that Maxie’s death has had a profound effect on a lot of families in the Canavan community. I understand that other families in a similar situation are grieving with me and trying to process this loss because I’ve been in their position too many times to count.

I really do appreciate every single thing my community of affected families has been doing to mourn with us and honor Maxie’s memory. It’s extremely comforting to know that Maxie touched so many lives, but I also want to address the grief that my fellow Canavan families are feeling. I wrote an article after Maxie survived his only life-threatening illness and I am sharing this link because I think it might resonate with other families. Almost losing Maxie was a wake up call. I paid even more attention to details, I took more pictures, and made even more sure that he felt happy and loved every moment of his existence.

I know that Maxie’s death has been extremely upsetting and devastating for a lot of people. I know that you’re grieving with me and trying to make sense of this unexpected loss. And I know that you’re scared about who will be next. Those are all normal feelings and I have had those same thoughts hundreds of times during Maxie’s life. There are no words to ease your pain, but I wanted to let you know that I understand because I have gone through this countless times too. We’ll all be here for each other and heal as a community while we continue to search for the cure.

Living in the Face of a Life-Limiting Illness

Just as there are no words to ease my pain, I know there’s nothing I can say to minimize your own pain, fear, and uncertainty for how you feel knowing that one day you’ll be in my position. I do know now with one hundred percent certainty there is no way to prepare for this loss. Just continue giving your child the best life and most love possible while you still have the luxury of their physical presence. That’s all you can do. Please do not let the fear of loss interfere with a moment of your time. Fear and worry might creep in, but push them away so you can enjoy your beautiful children for every possible second you get to feel them in your arms. Give them infinite kisses and cuddles and absorb their wonderful scent while you can. These memories will last, so pay conscious attention to details and memorize them.

The Wednesday night before Maxie started to leave us I was sitting on the couch by his head rubbing my cheek against his. He was perfectly fine, no weird sick breath, not extra tired, not a single clue that anything was going to be wrong soon. I heard a voice in my head while I felt the sweet warmth of his cheek against mine. It was my voice, but very different from typical thoughts that usually run through my head. It was loud, clear, and completely devoid of emotion and it said very calmly, “I’ll miss this feeling when you’re gone.”

This matter of fact statement rattled me at the time because it was not engulfed in fear or worry; it was a message to myself stated in a matter-of-fact tone and sparked no fear or tears. I realize now that it was either mother’s instinct or something else letting me know that we were nearing the end of our time together on this earth. Maxie died in my arms less than 60 hours later.

So when I say pay attention to every small detail this is what I mean. It was a bit strange and unnerving at the time to hear those words, and even if I had known I was in imminent danger of losing my Maxie, there wouldn’t have been anything I could have done to prolong his life because he wasn’t even sick. He outlived his diagnosis and died on his own terms when his body was unable to continue functioning.

Thinking about this voice I heard, acknowledged, and consciously committed to memory gives me an odd sense of comfort because I remember that calmness, and I know one day I’ll get to a place were happy memories begin to replace the absolute soul crushing agony and loss that consumes most of my waking moments now. One day I know that I’ll be able to find peace and happiness in knowing that I gave my child the best life possible and that I didn’t waste a moment of our time together.

Ilyce Randell is the mother of two children, one typically developing 16-year-old boy named Alex, and one 21-year-old boy named Max who was born with Canavan disease. She has been working to help families affected by Canavan disease for over 19 years by advocating for patient rights, raising money for medical research, and increasing awareness about Canavan disease. Ilyce has recently launched the world’s first international Patient Insight Network (PIN) for Canavan disease through a partnership between AltaVoice, (formerly PatientCrossroads) and Canavan Research Illinois. This tool is critical for advancing research and networking patients worldwide. Ilyce is also the President, Director of Patient Advocacy, and Cofounder of Canavan Research Illinois and Canavan Disease Research. You can read her blog War Stories from Holland.