As Abby’s Illness Progresses, My Coping Mechanisms Change

Many parents will agree that our child’s diagnosis with a terminal illness was the worst news we could ever receive. I have been living this reality now for a little over two years. My daughter Abby has Sanfilippo syndrome, a rare, genetic, terminal disease that is similar to Alzheimer’s. Over time, it is taking her away from me, and there is nothing I can do about it.

I have written before about the emotional roller coaster that comes with this diagnosis, and how everyone’s ride is different. Each person deals with tragic news in their own way. My initial reaction was grief and sadness. Those emotions are still in me, but I force them into the background so I can function and work. However, I have come to realize that my way of coping has changed.

I find myself somewhat avoiding Abby lately. I realize this sounds so harsh, but it is honest. Maybe it is a way to distance myself from her to avoid the pain when she is gone. Could it be a way to fast-forward and try to adjust to a new normal without her, even before she is gone? That is the only explanation I can think of.

I am supposed to relish every moment with her and savor the time we have left together, but I am having trouble doing that. She has lost almost all of her intelligible words now, and she does not appear to be interested in anything except children’s movies, television, and music. I realize this sounds so selfish, but bonding with her is so much harder than it used to be.

I truly wonder if others feel this way. Do loved ones or caregivers of those with terminal illnesses create distance between themselves and the ones they care for? Is this a coping mechanism for some people? Is it a form of denial? Is it an unhealthy practice, or is it me protecting myself from falling into depression?

Grieving my child’s death is going to be the hardest thing I will ever do in this lifetime. Knowing her fate makes the time I have left with her hard, too. I do not wish to have any regrets, so I must face it and spend time with her, even if it is hard.

Abby deserves to feel loved every day, and she is deeply loved by her whole family. I know parents who have lost their children to this horrible disease would give anything to have another day with their child.

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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.