In the 1994 film Forrest Gump (one of my favorite movies of all time, no less), during his inexplicable back and forth run across the United States, a bumper sticker salesman running alongside him points out to Forrest that he has just stepped in a pile of dog feces. When Forrest replies, “It happens”, the man replies, “What, shit?”, to which Forrest replies, “Sometimes”. I saw this movie in the theather in the summer of 1994, and while a whole lot of crazy stuff had already happened in my life, mostly due to my sense of adventure and spontaneity, I would soon find out what it really meant to experience some very serious stuff, none of which I was expecting, nor was I at all responsible for.
Yes Forrest, you’re absolutely right. $#*! Happens! Just a few months later, my first baby was stillborn at full term, and 18 months after that, my son Nicky was born with EB. For years I wollowed in self-pity, doing what I could do to keep going, move forward, do what I had to do. Sometimes I remember the years that followed as being on auto-pilot, I was too concerned to somehow try to keep my child alive, trying to find out how I was going to pay for bandages, pay the mounting co-pays, and til this day I still wonder how I did it without falling into the usual traps of finding comfort in food, alcohol or drugs.
Life goes on however, and the thing I credit the most to keep me sane is to always find the silver lining from any situation, no matter how impossible. Over the years I learned that the more I complained the more I would lose friends. Let’s face it, when you’re dealing with a situation that is extremely rare, the majority of people are at a loss of what to say and do, and while as soon as my Alex was stillborn the support was overflowing, it dissipated quickly, and people I noticed didn’t want to talk about it, think about it and even avoided the subject like the plague. Only other angel moms ‘know’ what I am talking about here as they know how the pain of losing a child is something you *never* get over but mainly something you learn to live with. It’s also the same where Nicky is concerned, the more I complained the more people were turned off, so I started complaining less and less, not only for that reason, but also because I was tired of feeling low. My life was not over, and I needed to have fun. A happy mom is a better mom, isn’t it? I cannot change the fact that Nicky has EB no matter how much I wish it, so might as well live it as it’s normal, and putting a smile on my child’s face it’s probably the best gift I could ever bestow him.
Does this mean I don’t have my bad days? My pity party days? Oh yes, I do. I have too many still, but they are getting fewer and fewer as I strive to live positively and to be as grateful for every possible little thing I can think of. However, when I have one of these bad days, please don’t tell me I am ‘lucky’ about anything. Just recently a great friend who suffers greatly from a horrible degenerative disorder, tweeted from the hospital about feeling sorry for herself, she was clearly having a bad day. She is not one to complain much at all, and as I was eager to offer comforting words one of her ‘friends’ tweeted back how she should go visit the homeless so she can feel ‘lucky’ to have a pool in her backyard. I was dumbfounded. She had every right to be having a bad day, life had handed her a horrible ordeal and I am certain she would gladly give everything that she owned to get her health back. Rule of thumb, if you want to be supportive, offer hugs, thoughts and prayers, only she knows how great she is hurting, only she knows the sacrifices she is making and only she knows the suffering she endures. She does not feel lucky one tiny little bit, I assure you, and as you offer kind words she will feel lucky to have YOU as a friend. That much is certain.
Being positive and being happy is something I strive for and I promise to keep my complaining to an absolute minimum. In the meantime, if I slip, I hope I can count on kind words to lift me up. Thank You!
