I am asked sometimes how are you?, a simple term often used as a greeting to strangers as common as hello or good morning. Often this question is rhetorical, no reply required, wanted or expected and often an “ok, how are you?” is the standard reply. What if I am not ok?, do you really want to hear that and if I do say this will you care?, maybe you will just pass me my cigarettes and move to the next customer, “How are you today?”, “Good thanks, how are you?”
Sometimes I am not ok, sometimes I am far from it (hence buying a packet of cigarettes which I gave up last Friday, again). How could you understand this, what could you possibly say that would make me feel better?, nothing. Because of this I stick to the standard meet and greet procedure, answer your question with the same question, give me my cigarettes have a nice day.
I will then light up a ciggy, draw deep to ensure the nicotine reaches the ever dwindling parts of my lungs that work properly and have a five minute break. In this five minutes I will try and find some peace, a moment of calm and re gather myself. I am aware that as soon as I finish the smoke I will get back in my car and drive back home to the carnage that is my life.
Often I will hear my daughter screaming as I pull up the driveway to our home, this means she is still having a bad day. I will enter the house and my partner will be doing something, anything to stop her screaming, standing her up, laying her down, turning on the tv, turning off the tv, giving her something to eat, singing, not singing ANYTHING, what is the formula that will make her stop today?.
There is no hi honey I am home, no hug and kiss no how was your day (Ok, how was yours), there is no time for such intimaces in our home when my daughter is having a bad day. My daughter cannot help it, I am sure she would rather be normal and not be screaming, I am sure it is harder for her than it is for us. She has Cerebal Palsy and for the last two and a half years I have been the parent to a child with special needs, I am “that” father, yip the thing that only happens to other people happened to my family, we are the other people.
Am I ok?, probably not even close, I am far from ok but not being ok is my new ok, this is just a new normal for me and my family. Am I dealing with it?, of course because I have to I have two choices stay or go and I would never leave my family. Do I think about sneaking out in the middle of the night never to return, yes I have thought that and how I could leave it all behind me. These thoughts are fleeting and I feel such guilt for thinking (wanting) to do it, I will hug my daughter and forget I ever had the thought.
Raising a child with a special need is awful, lets drop the PC crap and be honest. Yes there are of course wonderful moments but often these are few and very far between. Would I change things if I could?, in a heartbeat. I say I would change these things for her so she was not different and was a “normal” little girl but part of the reason is for my my arrogance and self pity would change her so my life was normal and not so bloody hard. Yes she has taught me so much, given me new perspectives and made my life better, this is what children do but I would prefer to not have learnt what she has taught me and just had a “normal” kid.
Al parents with a child with special needs has a broken heart, a heart that breaks over and over until the pieces are like grains of sand.