I’d never given much thought to the issues of guilt associated with having a serious illness. Prior to my diagnosis I would have brushed off the idea that someone who is ill would feel guilt about it. But I now know better.
Guilt is a significant part of my emotional life post diagnosis. Guilt about oh so many things.
I feel guilty that my husband’s happy life has been derailed and that he does more than his share of baby care. I feel guilty that he has a tired sick wife a lot of the time and doesn’t get the attention or care he deserves from me.
I feel guilty that I won’t be contributing financially to our family for the foreseeable future.
I feel guilty that my diagnosis looms over my parents’ lives, at a time when they should be enjoying their grandchild, their own good health and the fruits of years of hard work.
I feel guilty that at the age of 35 I need financial help from my parents.
But I feel the most guilt about my baby. I know that one day my death will cause her the most terrible pain. I hope desperately that she is an adult when this happens. But I fear she won’t be.
Sometimes when she is crying and I am comforting her or even when she is smiling with her pure baby joy at me, I feel overwhelmed with a sense of guilt and shame that I’m leading her down the garden path. That I’m creating promises of love and comfort that I won’t be able to keep. And it’s heartbreaking – literally a physical pain to know that you will be the cause of terrible sadness for your child, for whom you should be their safest place.
I used to love the line from a children’s story about a mother and son:
“I’ll love you forever,
I’ll like you for always,
As long as I’m living
my baby you’ll be.”
I hate it now. I hate it for its inadequacy. Violet will always be my baby, even if I’m not here anymore.
All I can do now is to love her fiercely, take up every treatment option I can and do my best to be here as long as possible.