To Everyone in the Canavan and Rare Disease Community

I know that Maxie’s death has had a profound effect on a lot of families in the Canavan and rare disease community. I have had countless families reach out to me.

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.

Not one person, not even anyone in 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, 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.

For over 22 years each time a child in our 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 share pictures on my page and the CRI 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 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 and rare disease families are feeling.

I wrote an article after Maxie survived his only life threatening illness and I am sharing it below 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, and wondering 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 cures.

Just as there are no words to ease my pain, I know there’s nothing I can say to minimize your pain, fear, and uncertainty about 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. And take a million pictures and videos of absolutely everything.

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 calm and it said "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 imimant 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 the consume 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.

Now when I’m scrolling through pictures and videos looking at Maxie’s smiling face or listening to his voice I discover something new, something that I forgot about. There are countless moments in time that I don’t even remember taking pictures of, but now they’re treasured memories for me to look back on. I was always randomly taking pictures, videos and selfies with Maxie. I am eternally grateful that those beautiful memories were captured forever because now those memories are all I have to look at.

The following article is what I wrote about anticipatory grief a few years ago.

• Anticipatory Grief

Nothing can prepare you for the loss of your child.
I’m positive that this is true. I’ve heard these words from so many parents who have lost their children. Even though I haven’t experienced this loss personally, I know with everything that it is true. There is absolutely nothing in this world that can prepare you for the loss of your child.

There are many different ways people grieve, and for many different reasons. Grief doesn’t always follow losing someone we love. When my son was diagnosed with a fatal disease called Canavan disease, I realized in hindsight that I went through all the stages of grief. I had suffered a profound loss. Even though my son was still with me, I was grieving the loss of the healthy child I could never get back.

After coming to terms with the diagnosis, this feeling of grief eventually faded away. But grief comes in many forms. There is something called anticipatory grief, which can affect parents like me who have seen so many others in the same situation lose their children. We mourn with these other families and silently wonder if we’ll be next.
Even though I know there is no way to mentally prepare for losing my son, I still can’t help but try. There are endless poems and blogs dedicated to child loss. And as my son grows older and I watch more children lose their battles, I always read everything people share about losing their children. I read their words because I feel terrible for their loss and I want give them the chance to be heard. I also read the words of grieving parents because I know that one day this will be my reality as well.

I can’t even estimate how many times I’ve read something about someone else losing a child and had to stop because I couldn’t finish it without breaking down in tears. The agony and sense of loss is palpable. These parents are in so much pain, and they are so articulate that I can actually feel every word they have written deep inside my heart. This is empathy, a typical thing to feel when you read something so emotional that it moves you and you can feel something very similar to what the author is describing. This is very different from anticipatory grief.

Anticipatory grief is the experience of grief before an impending loss. This is a different form of grief that can become crippling. How can we possibly go on day-to-day caring for a child we know we are eventually going to lose and not be affected emotionally? I have absolutely no idea; this is something that I struggle with on a daily basis.
I have been raising a child with a life-limiting illness for over nineteen years. I know a lot about so many things that we as parents of medically involved children become experts on, but not this. I cannot seem to escape this feeling of dread. There are times when I can actually feel the aching emptiness of not having my child.

My son almost lost his battle with Canavan disease this winter. This was the first time he’s been really sick. I watched him turn blue and stop breathing on half a dozen occasions. I begged him to fight, to stay with mommy. I verbally rescinded his permission to leave me when his earthly struggle became too much for his little body to bear. I told him he was not to go with any children that were there as angels to guide him to heaven. I told him to run from the angels, to run as fast as he could the other way. I begged him not to leave me.

When the time came to let him go I couldn’t do it. I’m wondering if I’ll ever be able to. I think about this now every single day. I have to stop what I’m doing at least once a day to cry and mourn someone who is still alive. This can’t be healthy, but I can’t escape this feeling of anticipatory grief.
I feel like the grim reaper is following my child around. I got much too close to death during that illness; I felt him in the room with us. I will never be able to unsee my child teetering on the thin line between life and death. Some things change who we are fundamentally, and there is no going back to who we were before.

I don’t really know how or why my son survived this illness, but he did. Everyone agreed that this was a true miracle. But how many miracles can we expect? I’ve been gifted with more time. I know that I should make every moment count, but that is easier said than done. I already know I should be focusing more on the time we have left, living in the moment and all that. But sometimes I get consumed with this grief and instead of trying to escape it, I welcome it in.
Why would I do this? I think to try and prepare, even though I know that is impossible. Our mind has its own defense mechanisms that try and prepare us for something emotionally devastating. I think that feeling anticipatory grief is part of something to prepare me for the day I will eventually bury my precious child.
I’m not sure if I’m supposed to talk about these things, these horrible feelings. But I do know that ignoring them won’t make them go away. So I try to take the mystery away by giving it a name—anticipatory grief. It’s a real thing and I know that I can’t be the only person who feels like this.
Each day gets a little bit easier. More time and distance between the hospital stay does seem to help. And I do know that every single second with my son is a gift not to be taken for granted. So, feeling anticipatory grief has been relegated to the times when my child is not at home. I get all the feelings out of the way so I can focus solely on him when he’s by my side. This is a new learning curve for me, and I am still finding ways to cope with this feeling, a feeling that can be destructive if I let it.
But I won’t do that. I will love my son with every fiber of my being for every second I have him with me, and continue to memorize every detail of how he feels in my arms. I know that I need to store up these memories because this glimpse into the future is a reminder to me that our time on this earth is fleeting and we need to make it count.

Rereading this less than three weeks after I lost my precious Maxie has made me even more grateful for every single moment, every picture, every video, every kiss and cuddle. I moved past the paralyzing fear and truly lived and loved my Maxie with everything I had for those extra three and a half years. It still wasn’t enough, but I have no regrets about how we spent our borrowed time.

With warmth and love,

Ilyce

Link to the Randell family’s memorial fund

https://www.gofundme.com/f/Maxies-Miracle?utm_source=facebook