Understanding the Jealousy That Comes With Grief and Loss
It's difficult for this parent of a Sanfilippo child to see photos of other families
As I write this, October has come to an end, and children are fully back in the swing of school. Social media is filled with photos of Halloween costumes and fun. While it’s been a joyous time for most, seeing all of the pictures of happy families actually makes me jealous.
It sounds ridiculous, I know.
In the past, these feelings of jealousy stirred such insecurity in me when I was younger and our daughter Abby, 27, who has Sanfilippo syndrome, was a toddler, and then an adolescent. I never felt that I was parenting her correctly or adequately, as at the time, she hadn’t been diagnosed yet. Other families seemed to have it all together and were able to go places without the drama of raising a child with an unknown illness.
Back then, I used to compare my family with other families and often ended up feeling like a failure. I had no idea there was a reason for her hyperactivity and defiant behavior. I always blamed myself and my approach to her. Now I know differently.
Children with Sanfilippo syndrome often have extreme hyperactivity, inattentiveness, and defiant behavior. Abby certainly exhibited all of these. Had I known it was due to Sanfilippo syndrome, I would’ve felt less incompetent.
Today, Abby’s cognitive abilities are even less than they were when she was as a toddler, so comparing her with other people her age is absurd. In actuality, the jealousy I feel is rooted in sadness.
As time passes
I’ve written before about grieving the loss of who Abby used to be, and the grief is obviously still lingering. I’m sad that she can’t express herself anymore. I’m sad that she’s lost so much independence. And I’m sad that our connection to her is weakening as time passes.
But Abby will only continue to worsen with time. She will never marry or have children like her former childhood friends. I think this is another element that evokes jealousy when I see other families every day — the normal things of family life, such as eating out, going on vacation, attending church together. All of these are monumental tasks with Abby.
My husband and I are at the age when we should be “empty nesters.” We should be able to go to restaurants, to the movies, or out with friends on a whim. This is obviously more difficult for us since we must account for Abby and make sure someone can watch her.
I’m not sharing all of this to disparage other families or invoke guilt in others. I’d never wish for that to be the outcome. Rather, I hope that those who read this will come away with a sense of gratitude for their own families. In spite of my occasional feelings, I, too, am grateful for the family I have.
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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