A few years back I found our wedding album had gotten stuck in a box that had been sitting under a slowly dripping pipe. I pulled it out and found that the pages had curled, some had mould on them, some photos had the colours running. Most of it was un-salvageable. All that remained intact was the legal document that proclaimed our union. I took it out and put it in a safe place.
The significance of that discovery was not lost on me at the time. Not a believer in randomness, I knew damn well that, indeed, the only thing left of the marriage was its legal hold on us.
That was sad enough, and, I played my part in allowing that slow drip of years to rot away the foundations of our relationship. For that, I am truly sorry. But what has happened in the last little while since our daughter's fateful destiny with disability, I cannot take responsibility for. Something is very, very wrong.
It dawns on me now that I watched your father do the same thing to your mother. As she became more and more disabled, he took more and more control over her life, never at any time empowering her to live as fully as possible. It was suffocation, pure and simple. The two became a co-dependent mess of a couple, resentful one of the other, both believing it was their "love" that kept them together, rather than their complete inability to function as independent human beings. The good son is following in Daddy's foot steps.
You expect now that two people must always be present at our daughter's bedside claiming that is it not possible for one person to handle her. The two most always being me and the hired caregiver. If the second is not around, you hover within the space, your frustration at being "trapped" evident, your tension spilling over into the very air we breathe. You panic at every episode and seizure. You take every "bad day" as a personal assault on your freedom, claiming ever that you hate to watch our kid "suffer". You haven't worked in 10 years, refuse to allow me to do so, and wonder what will happen when we run out of money. You claim that it is her disability that keeps you here. It has become your convenient excuse.
I have had a few successes and opportunities arise from the blog...you chaff at it and you refused to support me for a conference trip, a once in a lifetime opportunity. Indeed, you hate that I have discovered that people actually live full, albeit alternate lives, in spite of their children's disabilities. You prefer to surround yourself with Facebook "friends", none of whom know anything of disability, who stroke you with their pity and praise you for your seemingly super human effort and sacrifice in dealing with our child. We aren't the only ones, you know, and you hate that. You have pushed away any real relationships, you resent anyone else's freedom. You even complain, behind my back, when I take my daily half hour walk. You seek out conflict at every turn. Once you overcome one by being "right", you move on and find another.
You are not a bad man. You truly love your daughter. You are, I know, scared to death of having to deal with this child on your own. Upon observing my sudden weight loss your only concern was for yourself: "Don't die and leave me to do this on my own", were your very words. You have said other things that I cannot repeat here, lest some overzealous soul call in some authorities to haul you away. You keep waiting for a miracle or some stability before you can do anything, you claim. Yet, she has been the same, up and down, for 10 years. It's bad enough that you keep us all in lockdown 24/7, but you won't even let the child go to school anymore, claiming her uber-fragility and the impossibility of proper care being extended in a school environment. She is bored and deeply lonely, like her mother. She is slipping away into her anxieties, feeding her with your own every minute of every day. It is beyond sad and into the pathetic.
I take the blame only for having allowed this all to happen, to develop and entrench itself so deeply. Admitedly, it took me completely by surprise. It's almost like I woke up one morning and found that all your rationalizations had finally turned the key in the lock. I was living in a prison...and I didn't know it until it was too late to walk out the door. No amount of talking, no reality check of any sort has been able to get you to see what is going on. I have checked with others, some professional, to make sure I wasn't the one off kilter...but they all agree with me. The situation is untenable.
This time next year, I and your daughter, will be long gone. We will be living in a different world...the operative word being "living". I'm sorry for it, but it is my only recourse. What you don't understand is that I won't be alone in doing this job. I will make friends, I will reconnect with family, I will use all the mandated supports available to us from the government. I want nothing from you. You will be a welcome visitor, her father, after all. I wish you well...though I don't know how you will survive, stripped of your excuse for hiding from life and living in fear and anger. Good luck, anyway...I release you to your lessons.