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Experiencing Anticipatory Grief for My Child

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Nothing can prepare you for the loss of your child.

I’m positive this is true. I’ve heard these words from many parents who have lost their children. Even though I haven’t experienced this loss personally, I know it must be 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, I went through all the stages of grief even though my son was still with me.


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 parents like me can experience when we 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 pass away, I read everything people share about losing their children. I read their words because I feel heartbroken for their loss and I want to be supportive. I also read the words of grieving parents because I know one day this will be my reality, too.

I can’t count 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 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. 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 I struggle with on a daily basis.

I have been raising a child with a life-limiting illness for over 19 years. I know a lot about 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.


My son almost lost his battle with Canavan disease this winter. I watched him turn blue and stop breathing on half a dozen occasions. I begged him to fight, to stay with Mommy. 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 every single day. This can’t be healthy, but I can’t escape this feeling of anticipatory grief.

I got much too close to death during that illness. 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. I’ve been gifted with more time. I know 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.

I’m not sure if I’m supposed to talk about these things, these feelings. But I do know 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 I might not be the only person who feels like this.

I will love my son with every fiber of my being, for every second I have him with me. The time I have left with my son is a gift and I continue to memorize every detail of how he feels in my arms. I know I need to store up these memories because this glimpse into the future is a reminder to me our time on this earth is fleeting and we need to make it count.

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Thinkstock image by: max-kegfire

Originally published: May 5, 2017
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