Tonight's picture was taken on January 12, 2009. Mattie was invited to his friend Abbie's birthday party. Honestly parties were difficult for us, as I was on hyper alert about Mattie's mood, how others would treat him, and of course given his physical limitations, I worried about his safety. Sometimes Mattie could keep it together while out in public, but then when we got home, Mattie would lash out at us. It was overwhelming and heartbreaking at the same time.
Quote of the day: There is no greater sorrow than to recall in misery the time when we were happy. ~ Dante Alighieri
I think Dante's quote is quite poignant. Of course I would say that life before Mattie was diagnosed with cancer were happy times. Sure we may have had the typical ups and downs of everyday life, but nothing as traumatic as making 24/7 life and death decisions about your child. My life has two parts to it, pre-cancer and post-cancer. Mattie's diagnosis and death have transformed our lives, how we view the world, and our future.
I was talking today to someone who has had multiple miscarriages. These multiple losses are not something this couple had factored into their future. As this young couple started out very much in love and with their life ahead of them. Yet with each loss they experienced, it transformed their relationship and how they felt about one another. So much so that the couple is now separating.
Can I understand this? Absolutely! I think Peter and I could write a chapter on loss and how it impacts a relationship. In fact, Peter mentioned this exact topic at the Social Security workshop that we attended last week, and you could see people in the audience were uneasy and unsure of how to react to this raw but true information.
The fact is our society views the natural progression of a relationship in a certain way, with no regard for the unexpected. Many assume that a woman and man in love will get married, have a house, have children and the family will grow and mature together. What happens when this doesn't happen? It isn't only sad but it can tear families apart and truly the world around us has absolutely no idea how to help. Some don't even want to, as you serve as a constant reminder of pain. After Mattie died, I remember many people I knew who would walk the other way if they saw me at a store fore example. They avoided me at all costs as I am sure they did not know how to deal with me, perhaps did not want me to feel worse, or frankly they didn't want to face the reality of my pain. As my reality could be ANYONE's really, especially when you think that 46 children a day are diagnosed with cancer in the USA.
What interests me about today's conversation was that we had similar ways of thinking. We both see the world in terms of a trauma. Meaning, that when I see people talking about marriage and about eventually starting a family, I feel no joy in hearing this, nor do I feel happy for the couple. Because in my mind, the question that pops into my mind is..... what makes you think you will have healthy children? Of course the majority of the world has typically developing children, yet for those of us who have a child with an illness or disability, we know that life isn't always fair and the natural progression of things is NOT a given. Clearly not a conversation I can have with everyone, yet when I find someone who speaks my own "emotional" language, it makes me see that I am not alone!
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