I still can’t believe after 13 years, my mother is not here.  Taken away from us in her sleep from a heart attack, a moment in time that will always remain fresh as though it was yesterday.  While my mother was over-weight, had high blood pressure and had a family history, it still came as a terrible shock because she had gone to her doctor seeking help since she wasn’t feeling well. Unfortunately, that doctor told her she had a virus and did not bother to run critical tests that would have signaled the impending heart attack that ended her life at 52.  In one of our lasts conversations, she told me the doctor and nurse ran over to her as she got up from an EKG because she had gone so pale they thought she was going to pass out. Hindsight tells us this was because her blood was not circulating due to her clogged arteries. They did another EKG but the results of that test never surfaced in court documents.  My mother asked her doctor if she should go to the emergency room but regrettably she explained to me that he told her, “if you want them to tell you that you have a virus then go”.  She felt silly and trusted him so she went home to have Jello and Gatorade as he suggested, which was what I found next to her bed when I arrived after learning she was dead.  It is hard to ignore the obvious medical issues that led to this horrific event, but it was the gorilla in the room that seemed less obvious…Canavan disease.  I remember lying in bed after Jacob’s diagnosis…to weak and broken hearted to stand.  My mother was next to me and I told her I worried deeply for her.  She looked at me dumbfounded.  She wondered how I could feel any worse for her than for myself, and as I explained, it was because the pain would be double for her.  She would ache for her fatally ill grandchild and for her only daughter broken hearted by such a terrible diagnosis for her only child.  I often wondered if it would be too much for her to bare, and in the end it was.  When she called to tell me she was the Canavan carrier and had passed it to us, she was inconsolable.  I lightened the moment by telling her “Thank God”!  She immediately stopped crying and asked, “why”?  Having grown up with parents who had a miserable marriage, had my father been the carrier, it would have been one more thing she would have despised him for.  My mother quickly agreed with my logic and moved on to another conversation.  For that moment, it seemed to patch her wound, but I believe the wound was far too deep.  My mother also had the burden of knowing she played a crucial role in steering my life at a most critical time.  I had been seriously dating my current husband at the age of 21 when she took a strong stance against the relationship; she wanted me to marry someone of my own faith -Jewish.  Being Catholic and from the “other” side of town, my current husband did not fit the bill.  Unbeknownst to me, my husband confronted my mother at that time and told her, “no one is going to love your daughter like I do and life is hard enough so why not just let our relationship run its course”? My mother in the way she only knew how was unrelenting and told him “fine, but I am not going to have anything to do with it”.  My husband knew that was the kiss of death; my mother was my world and her approval meant everything to me.  He asked her: “so she will just end up marrying a rich Jewish asshole from the right side of town”?  My mother replied, “why shouldn’t she”?

Three years later I did and one year later Jacob was born.  Turns out there was a 1 in 10,000 chance that I would marry a carrier and I don’t know what the statistics are for marrying a rich Jewish asshole but that is another story.   While we never spoke about it, I can only imagine the guilt and responsibility she must have felt and as it turned out it was something she could not live with.  Her absence remains at times unbearable but something I have had no choice but to learn to live with.  I am reminded of her every day in my strength to battle Canavan and have moved mountains because of the fierceness I inherited from her to protect and stop at nothing for my children.  And in her death, she taught me a most valuable lesson; to only want happiness for my children regardless of what I think that is or whoever that may be.

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