How Anticipatory Grief Reflects My Daily Reality

Many parents of children with a terminal illness endure anticipatory grief

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by Kelly Wallis |

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Caring for a loved one with a terminal illness is difficult. Not knowing the details or the timing of their passing causes so much anxiety and fear.

My daughter Abby has Sanfilippo syndrome, a rare, terminal disease. I find myself caring for her while she is here but also preparing for her eventual death. It is a complicated, emotionally draining space to occupy.

I belong to a Facebook group for parents who have children with Sanfilippo syndrome. It is a safe and open place for parents to post questions, vent, and genuinely connect with other parents in similar circumstances. I recently saw an Instagram post that someone in the group shared that spoke to me.

It comes from someone who goes by Grief Kid. She is an artist and has a podcast on Spotify, where she talks with guests about grief, especially as it relates to cancer. I recently found out about her, but I plan to listen to the podcast and follow her on Instagram.

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I had never heard the term “anticipatory grief” before. The term and its many features are so fitting for me and many other parents with terminally ill children. It’s that state we live in after our child is diagnosed and until they pass away.

Anticipatory grief entails uncertainty, doubt, fear, and many other emotions. It means we are constantly preparing for an event whose timing is unknown and which involves contradictory feelings. We worry fiercely about our children when we notice anything different in their mannerisms or demeanor, yet we can fall asleep sitting next to them when they are calm. We try to plan ahead for when they’ll need additional support or assistive devices yet do our best to live in the moment and be grateful for another good day.

Are we doing enough?

My worries during this anticipatory grief period are mainly about what Abby is aware of and what she is thinking. Are we doing enough for her? Does she know what is happening? Is she uncomfortable or in pain? Since she no longer communicates verbally, it is a constant guessing game.

There are other plans we have not yet discussed. Planning for her funeral and burial are not something we concern ourselves with today. I know there will be a time when we will have to address it, but not yet. Having to bury your child is an unbearable concept.

One thing I am confident about is that Abby knows she is loved. She is told multiple times a day, every day, by us and our extended family. We demonstrate that she is loved all the time. I am certain that if she could say it, she would tell the world that she is loved.

I’m thankful for Grief Kid for accurately depicting the emotional state in which many people dwell. It provides solace and a starting point for families to share their feelings with one another.

Note: Sanfilippo News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sanfilippo News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.


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