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black holeThis is a very personal story, one I don’t even share with my best friends. It’s a subject matter that is really difficult for me because to me, it means I am faulty, imperfect and not my truest self. This is something I attempt to achieve everyday in my life and though I know I am not perfect and I am my biggest critic.  I am always trying to better myself from the person I was the day before. As a matter of fact, few people even discuss this because it brings shame. It brings so much shame there has been international campaigns last month to ensure we bring it out in the open, to enable conversation and recognize it is nothing to be shameful of.

This journey that I begun almost 20 years ago has brought me to dark places at times. So dark, I have rarely ever shared them. There are moments the acceptance of how Troy is, paralyzes me with grief. No first girlfriend, no graduation dance, no wedding, no travelling to cool places, no friends he can just sit down and chat with, no drunken nights with his friends, no true love that will break his heart. It creeps up on me and creates a huge hole in my heart and the tears begin. They stream down my face and I begin to hyper-ventilate. I can’t control it. I become anxious and my sadness is so overwhelming, my husband and sons aren’t sure what to do. There have been moments where they think they should call an ambulance. I try desperately to bury it deep, but like anything with enormous pressure pushing down upon it, it eventually seeps out and then spews and finally explodes.

I hate pills. I am so adverse to them. The reason: my mother had rows of pills for depression, anxiety, panic attacks, anger management. I can still see them clearly in a neat row along her dresser and the doilie covered in dusting powder. I would sometimes lift the doilie, to see the patterns the powder would make on her dresser, all the time eyeing those pill bottles. It appears there is a pattern in the female side of my family that is generational and that bothers me even more. At some point in the early years of Troy’s life, I had to accept I needed help. That was a monumental hurdle I had to overcome because from basically 16 I was taking care of myself and making my own decisions. I owned my life mistakes and would move forward, but this one, this one with Troy, I took complete and total responsiblity for why he was the way he was and because of that, the pain was astronomical in my heart. Since then, I have been on and off medication, but the last several years I have had to accept it is what it is and take one every day. I still despise that I cannot control this piece of me and need a little pill to get me through life. Every so often, I will ‘forget’ taking them, only to realize a few days later the reason I am feeling the way I do, is because my frequency has changed and my anxiety is creeping back in.

The other day I had to get a refill to my prescription and this is what my doctor said because he knows I hate having to accept taking this pill. He said, “Anne think of this. A person buys himself a pick-up truck. It’s perfect for everything he wants to do and then one day he decided he is going to purchase a trailer home for him and his wife to travel in. The pick-up truck was perfect for running every day errands, but now that same engine is expected to haul an enormous amount of weight behind it, up and down mountains and valleys and unfortunately, it just wasn’t made to do that. So instead, he has to rethink how he can manage this.” Well I got it. All these years of analogies on justifying why I have to take a little pill to make the day a little easier, hit me. I could accept this.

We mothers (and fathers) try to navigate the world of a disabled child. For many of us, there was little support and very little information out there. For me, I don’t even have an official diagnosis for my son to even ensure I am getting the proper support for him. When Troy was born almost 20 years ago, Autism, ASD, ADD/ADHD, PDD-NOS, etc were pretty foreign words. I had no family support where I lived and as a matter of fact even from a distance, offered little. I had no true friends at the time I was told something was wrong with Troy. I had a career whereby bosses weren’t interested in your personal life. I had a young son under 2 that I was still trying to figure out how to just be a mother to. I had a husband who was dealing with the shock of what just happened and dealing with it in his own way. I had so much guilt, I was literally drowning in it.

We are all born with the same coping mechanisms. Some of us have to deal with more than others.  I certainly have had more than my fair share, but then I think of those in other countries and wonder who am I to think I have it worse.  I met up with a new friend the other day.  I somewhat pushed myself upon her because I knew she wouldn’t ask anyone but I knew she needed someone. She has a verbal child with Austim, as well as two other children. Her husband spends most of his life on the road – long haul truck driving. On top of trying to do all that she does, she for the past two years has had to deal with a tumour, chemo, stem-cell replacement, excruciating pain to her knee, a botched knee replacement and a 2nd knee replacement surgery and pain that I don’t think the English language has words to describe. During all of this she has negotiated two children through adolescence and has her daughter now entering it. I can’t even fathom how she does all this; in pain and on crutches. When visiting her the other day because I knew she was having a rough week, she had 3 one minute breakdowns. See that is all we truly allow ourselves to the public. We are supposed to be strong, carry the world on our shoulders like Atlas, and like the famous British War Statement “Be Calm and Carry On”.  Sometimes, life just hands some of us far too much and we need the kindness of other people.  And for others, like myself, well we need the ‘umpfff’ a tiny pill can give us to get us through some of the bumps!

But there are times, when it is all far too much. When the walls of life are closing in around us and our lungs cannot pull in the oxygen that we require for strength to move forward. When a vortex of emotions swallow us into the ‘black hole’ and it is impossible to escape. We need our family, we need our friends, we need support from the moment our children are diagnosed disabled and for many moments throughout their lives.

As Troy approaches 20, I have been looking at day programs to fill his days since he cannot truly hold a job and for a residence that someday (which is now sooner than later) he will have to move into, so that I too can live my life again. Each and every time I think of these, I begin to cry and I wallow in my sadness. So thank goodness for my little pill because if I didn’t have it, I know I truly could not cope with what life has thrown me.