We all share in pain

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. 

  Only love. 


Being medically labelled 

As parents, we are in receipt of an expectation; An expectation for our children to gain new skills, to develop accordingly, in a given timescale and preferably in an orderly form. They should be able to meet milestones.
Of course, that doesn’t always happen. It seldom does as we are informed it should. Some children will be later in communicating through word. Others will not find their feet before they begin preschool.

Corry was titled with, ’global developmental delay,’ by the age of 18 months. He could sit, crawl, play, laugh. Oh, how he would laugh. The sound of his rib tickling chuckle still makes me melt. I knew he could understand everything being said to him, he could feel our emotions, and in return express all the necessary reactions to get what he required. He could hold a pen just as a child much older would be expected to, and he would use it to make intricate marks on paper. He could build, fit shapes and puzzles, make sounds through a recorder and clap along to rhymes. Yet, here was a piece of paper, with that term stated about him.

• Global developmental delay – A term describing a child that has not reached two or more milestones in areas of development.

Physically, Corry was having difficulty pulling himself to stand, and was experiencing unsteadiness in his core strength. In terms of communication, Corry was not forming verbal language. He was expressive and bright, but reserved in how and who he would be so with. He was also low on energy and refused to feed himself.

All of those wonderful things he had achieved, how he would manipulate so confidently with his hands, how he would cuddle and babble to his toys, how he learnt to use makaton sign and grasped the use of a walker. But in knowing his physical challenges, in siting his lack of language, his disregard for food, a document was produced stating that he had global development delay.

I didn’t, and I still don’t like the term. It highlights struggles and difficulties. It doesn’t take in any of the progress, any of the many, many strengths and wonderful features a child has. I can fully comprehend the need to note a difficulty or a health concern. It is relevant and important to be able to help and support somebody who has a need. But those words sit very uncomfortably with me.

What upsets me most is the likelihood of Corry struggling more and more with all of those brilliant achievements he made. He is now so fatigued. I see, slight changes taking place in him. I notice every so often that an ability Corry once so confidently practiced, suddenly seems to challenge him. And for that reason, he will highly likely never escape that label. A label that I never really found fair or just.

Another he received before his first year was up:

• Failure to thrive – a term, indicating insufficient weight gain or an inappropriate amount of weight loss.

Now that one came at me like a bull to the red. Because it was true. It was accurate. There was no exaggeration. What sort of parent cannot ensure that their child is well nourished? Why could I not meet his needs? I had an inability to provide for him the nutrition he required; The fuel he needed to see him grow and flourish. I felt it deep, still do, and I once was under the impression that everybody viewed me as a neglectful mother. I let anxiety build in me whilst in hospital. It was not only Corry being monitored, but myself. We were sent home. Corry, ever so slowly picked up. He ate a little more, he wasn’t so sick. We began to see light; the turning point we needed.

It didn’t last. Here we are again, ‘failure to thrive,’ in black and white, as clear as day. We know now, it isn’t something any of us have done wrong. It was never in our control to begin with. It is the devastating work of Alexanders disease. The first of many things that Corry will be affected by. But still, the term sits uncomfortably with me. I see him struggling to chew, to swallow. I feel his body wretching in a painful reflux.

For Corry, to feed is to be hurt. To Corry, it seems it is less harmful not to feed at all, and that is what he continues to learn. It is heartbreaking. I am his mother. I should be able to feed him, one way or another. It is not Corry who is failing. It is I. It is science. It is the lack of research. It is the disease. It is all but him.

Meeting milestones can be hugely proud moments, for a child, for a parent. They are an achievment and deserve the recognition we seek to give. But they aren’t the definition of a child. They are not all a child can be. And the same goes for these ‘labels’ that we must carry for medical purpose. Corry doesn’t have to meet a milestone to make me see that he is a truly fantastic person with so much to give, and so much to teach others. I disregard what ever term he is known by to the specialists. When they read on that piece of paper that he is failing and that he is lacking, I will know this not to be the case. I will know just what he is made of.

To quote Buddha ,’In the end only three things are important: how much you are loved, how gently you lived and how gracefully you let go of things not meant for you.’ And at that, he has already succeeded.