On finding out Corry’s diagnosis, I was immediately plunged into a deep despair.
We didn’t receive an appointment, to be sat in front of a group of specialists, who would gently tell us the results; that despite the odds they would do everything they could to treat this, to make him better.
Instead I picked up the phone when it rang, and a dr gave me a title ‘Alexander’s disease’. And he remarked that from here on, we, as a family would never be without therapeutic support. There was no need to ask questions, or to demand reason. I warbled a ‘Thankyou’. I placed the phone down. I stood still, stunned, lost. I didn’t cry straight away, but it didn’t take me long.
You see, he didn’t give me a lengthy description of what the disease was, or what it would entail, most likely for the reason that he didn’t know himself. He couldn’t say the words I desperately hoped to hear down the line; that he could make this better.
No. I already knew that to be the case. As soon as those crippling words were sent to me, thrown at force down the line, like a ball to a perfectly lined row of beautifully delicate ceramics. It came a’smashing into me, shattering sharp fragments of my heart all over the floor.
Before recieving that call, I had already rehearsed the statistics of axd, along with many other brain diseases. I was on a mission for my son. I hadn’t found much, because there was not much to find, but I knew enough, and I knew that it was not what I wanted to hear.
I had some selfish thoughts – I didn’t understand why my happy, kind and caring little boy had been dealt this shit hand. I’d see other children fighting, speaking nastily, and acting rudely, and I’d shamefully think to myself, ‘It’s not fair. Corry doesn’t act that way. He is full of goodness, And yet he is to suffer this fate.’ I would be eaten up inside listening to Lily having an emotional outburst about her shoe lace being tied incorrectly, or how she’s too tired to make herself a drink, or to get herself dressed. I would fester and boil to myself, because Corry should be doing these things. He should have been granted the chance! People, children, fully abled, the world at there feet, the gift of choice and freedom, complaining about such trivial rubbish. Myself included here. I guess we’re all a little guilty.
It’s hard to admit those thoughts of mine. They make me feel low about myself.
But here’s the thing. There is no reason as to why this happened to Corry. He wasn’t ‘chosen’ and nor were we. It wasn’t because the best always go first, or because we were the ideal candidates to cope with this. Not.. At… All.
It was a sporadic event that happened to Corry. Not something that Darren or I have carried. Not an illness during pregnancy. Just some really crappy luck. Some shit luck that hasn’t just been dealt to us, or to others living with Axd, but to many, many families and individuals.
We all will feel the impact of real, deep pain at some point during our lives, be it for our children, other members of family, friends, ourselves even. Sickness, loss, and struggle are present in all of our lives alike, granted they are varied in the impact they have upon us and the depth in which we feel it. But, none of us should place that hurt higher than another’s. Nor should we assume that we are alone in feeling it.
For that reason, it’s no longer painful for me to see children in the throws of life; Making friends, forming relationships, learning, growing, and succeeding. I have no need to be envious or bitter. You have your child, and I have mine. They both are our worlds. We both hurt when they hurt and feel joy from their presence.
There is no need for comparison.