“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 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 heathy 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 and it 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 can not 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 it’s own defense mechanisms to 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 it won’t make it go away. So I try to take the mystery away, it has 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.

About Ilyce Randell

lyce Randell is the mother of two children, one typically developing 14-year-old boy named Alex and one 19-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.

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