Loneliness, the hardest part of being a parent to a child that is a different type of perfect. Loneliness is a terrible thing and so common in families like mine, families that have a child with a special need. I am lonely, a different type of lonely but lonely none the less. In a room full of people I am lonely, at home with my family I am lonely and even when I do go out I am lonely.
This is a different type of lonely and as I write I am already thinking is lonely the best word to describe what I am feeling?. Other words spring to mind like lost, floating and maybe lost in a strange thick fog all of which describe my feeling in one way or another, maybe all of the above is the best description. I am almost four years into this journey of being a parent to a child with special needs, the things that were so alien in the beginning are now the normal, a different type of normal raising a kid that is a different type of perfect. May that is the word I need, different? I am different?.
There is no doubt I am different than I once was, that guy the “before” guy was different in so many ways. Perhaps my loneliness is a side effect of the changes I have seen happen to me, I say seen as none of these changes were made consciously I did not make an effort to become “this guy”. I seldom reflect on who I was, that is a million years ago now and that guy is just a character in a photo album, like a twin I have not seen for many years. Every person changes especially when they become a parent but they can still hold on to a little piece of who they once were. Eventually the baby grows, the parents can go out and enjoy the lives they once had and be the people they once were. Eventually they become almost the entire person they once were, this is a luxury that I do not have. I cannot step back into the “before” days, I cannot hold on to a piece of the past and I cannot recognise the twin me in the photos. This is the centre of my loneliness, this is what the psychologists will dig for this is the reason I am lonely, this is why so many of us parents to child with special needs feel this way.
My phone seldom rings anymore. If it does it is from people I have met after my daughters birth, my new friends the people who are like me, we are the “others”. The ones who cannot go out, the ones who spend to much time in hospitals, the ones who bury their children or the ones who are lucky enough to have their children with them but facing hurdles only us “others” can comprehend or understand. It is the “others” who call me, message me or ask how it is going, the “before” friends seldom call anymore, loneliness?. I get why people do not call, what is the point in asking me to go out when the answer is 99% of the time I cant, what is the point in visiting when I am too busy looking after my daughter to sit in the sun and drink beers with you, why would anyone want to hang out with me when they also know I am not that guy anymore, the “before” guy is gone and that is who they want to visit. Sorry but my twin is not home, can I make you a coffee?
The “before” guy was great, I miss him as well. He would always be at the bar or concert and no doubt keen as to come to your BBQ, he was funny and people seemed to like him. My home was always full of people, I lived at that house where there was always something going on, people would turn up with cases of beer, bottles of red wine and stay all day and all night. The house was full of laughter and friends, I was happy and I was not aware that I was only going to be the “before” guy for a little while. Now as I write this I do so as the “after” guy.
Being lonely is almost a self imposed exile from the “normal” world. I have nothing in common with most people now, I do not know what to say and seem to have lost my ability to socialize I feel it is all a front. I feel like a bad actor playing the role of “before” me, I feel like I have to be that guy. Sometimes look at myself like an out of body experience and think wow, what a dick. I am trying so hard to fit in where I just don’t anymore. The reality is I am lonely, this is perhaps because my “before” me was always surrounded by friends and laughter and now this is all changed. My life is now full of screams from my child, visits from therapists, talking to others like me and trying to get through one more F**king day.
Being this guy is difficult, the only people who understand these words and these feelings are the “others” facing similar journeys. This is a unique life we all lead and trying to explain the depths of our struggles can never be expressed in mere words. Others can see into our lives for brief moments, they can see the struggles but they then also get to say good bye and as soon as the door closes behind them they can venture into their “normal” lives. They will soon forget the sounds of the screams, the smell of the hospitals and the look of frustration in our eyes. Even when for that moment they are in my world with me I feel alone, I know they will soon be gone and I will face this by myself.
I am not the “before” guy, I am the “after” guy and I am lonely, lost in a fog and floating from one moment to the next.
Kelly “Boy ” Dugan