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. 

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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.

 

There is always good

  Bad things happen. Painful things that set out to try and sabotage us. On our journey through this life, we all are met with some damned, hard challenges and crushing experiences. It would be easy to spend ones time being held hostage over the negatives, the struggles; The financial burdens, the relationship cracks, health worries, loss. 

I have felt so very low for a long time about my sweet son facing battle with a terminal disease, which we now know to be Alexander’s disease, a leukodystrophy. That pain will unlikely fade. I shall carry it always. 

However, having felt such despair, I am now in a place, which allows me to see and feel intensely, every single bit of good that comes to me. And it is amplified. It is alight. 

Our family meal, eaten together (even when in front of the tv). I look around at my husband, precious daughter and my wonderful son, and I fall into seeing them just as they are in that moment. 

Listening to Lily read, or to think out loud her sums and stories – I feel such sunshine illuminating from her. 

Hearing the goings on from her day at school and gym class – the whispers in the back seat of the car between her and her friends. Oh, how it all goes on… The ups and the downs of it! Her ability to figure it all out. That is so satisfying to me. 

Hearing Corry say a new word. The sense of overwhelming joy and amazement fills up inside of me. Every single time. 

When the morning allows enough dryness that I can take my cup of tea out in the garden and breathe for just 2 minutes…. Pure blissful glee! 

The first daff coming up from its sleep. 

Laughing at the cats chasing leaves in the wind. 

Making the school run without being touched by a drop of rain. Making the school run having being absolutely obliterated by the rain – it feels wonderful – it is life! I value every little piece of it. 

I have spent all amounts of free time I have had this last week wrapped up in a dressingown, sprawled across the sofa, crafting, with tissue surrounding me and living off of eucalyptus sugar sweets. The cold itself sucks….. But boy, I am so at ease here, just being… being free to get lost in thought, about the good… And the bad. How they are so closely aligned. How they keep me going.

To be able to experience such rich and vibrant colour, has been made possible by the darkness surrounding us. And I suppose that in itself is something good. Not the cruelness of what Corry is having to face. Not the prospect of losing him. But the ability that I now have, being made to face that, in which I am able to cherish each and every little thing that this disease has held in its grasp. 

Time is so very precious and so very fragile. But time is good, as can life be, despite the bad. It’s not hard to find. 

Good is always there. 

Grieving without religion

  

Grief does not just surround death. 

I grieve for the things that Corry has had to, and will continue to miss out on. I grieve for the life I once imagined for him. I grieve whist I watch his peers meeting milestones. When I see them running and playing like Corry should be. I grieve when the deterioration we are told he can expect, actually presents itself.  

It’s painful. 

It hurts. 

I sometimes go for days having limited contact with anyone, for fear I won’t stop myself breaking down in front of them. It is hard to know what to do with such feelings. Where to put them. How to work with them. 

I am not religious. I never have been. I was christened as an infant and attended church occasionally on a Sunday. I never really thought much of it or took in the verse and story. I never truly sang a hymn and felt it’s meaning. The more life went on, the less I thought about it, the less I attended. I haven’t placed any value in religion or had a reason as to why it should have a place in my world. Of course I respect those who do. We each are fully entitled to our beliefs and values. 

Recently, I am myself questioning why people find religion and hold on to it so tightly? Why  do they chose to worship something/someone that they have no proof of? What makes a person hold such a strong faith? What reason would someone have to believe so strongly? 

Could it be that it allows a person a coping strategy? That when life gets tough, religion is something to fall into? So that when our lives are ripping at the seams, we can patch up the damage with prayer? When death is at ones door, faith can abide deep grief but also enable a means to come back from it? That it gives a different life to somebody you have lost; A different form, being or spirit? A way in which they can stay with you? Does it make right what science and research still can not? Knowing something is out of your hands but in the hands of a god… Can it put one at ease? I am envious of people that have this. Such a strong faith it could pull you through the toughest time.

I don’t enjoy giving death a thought, but having a terminally ill son, it is hard not to let my mind see where we are headed at times. Believe me I am trying to be positive and focus on ‘HOPE’. But hope can be a hard thing to grasp if you don’t have a faith, can’t it? I’m finding it difficult, and not just for the obvious reason – facing losing him, but because I don’t know how I will ever cope with it. I don’t know how I will ever cope with him gradually getting weaker, losing any abilities he has, struggling to function. I don’t know if I can cope with not being able to make this right for him, not being capable of stopping this, to take his pain away. I am frightened that I won’t find a way out. I worry that I won’t be able to be a strong enough mother for lily or wife to Darren. That I will fall into the black and there I will remain. How will I find the light again? Who will guide me?

I have always thought that when you go, you are gone. There is nothing else. That is it. The end. But, how can I possibly think that of my child? My boy. I want him to be alive in me for ever more. I want to close my eyes and see his happy, beautiful face smiling back at me. I want to feel his presence in the nature around me and know that he is always with me. To speak to him and believe he is listening. How does one do this without faith, without religion?

Instead of throwing myself into praise, I will throw myself into our memories. And I will hold them so tightly, always. Instead of falling into the abyss, I will fall into the arms of my my family and friends, and know that they will keep me from reaching a depth from which I cannot return. I can see Corry in my husband and in myself. I can feel happiness at that. I will watch him and lily making mischief and remember all of the cheeky games they play together. I will know he is with me always, because he was made by me, he is a part of who I am. By living and breathing he will be too. 

But, for now we will just be….. We will make those memories, we will love one another. I want no more burdens to carry, no more sorrow of what is to come.  

Just to be, for now, here. Together. 

To be the other child

  
I started this blog to raise awareness mostly, about Alexander’s disease, about what it is doing to Corry. What he must go through daily. But it is also so important to recognise the impact life limiting conditions can have on other family members. My blog page is a place for my very strong feelings. This particular piece is to recognise that so often ‘the other child’ or children from families similar to ours can be overlooked and undervalued. They don’t get the credit they deserve. 

The guilt I carry for my daughter is ever present. She holds so much on those little shoulders of hers. She has no choice but to weather this storm.
The cards we have been dealt have seen Lily take on a lot more than she should have to. She can appear to be a happy child, a sociable child, full of energy, full of life. A typical 6 year old girl, and yet she is worn. Tired. 

I have many days where I crack. I have never been an emotionally easy person. I am especially fragile of late. When functioning on little sleep, an empty stomach and behind cloudy eyes, the smallest of difficulty can feel intense… Overwhelming. I can damn well blow it all out of proportion. 
There have been times, too many times, that I have been a person I don’t want to be. 

Amidst my fear and anger at having to watch my son in pain, being violently sick, unable to hold himself up, frightened at what is happening to him. At the sight of his ng tube coming out just as we’ve arrived home from the trip to hospital to have it put back down already. At the state of the house while I’m just sat around staring at it all, not an ounce of energy to do anything about it. During these times, I have said some absolutely unnecessary things to Lily. I have acted selfishly. I can resort to becoming a spoilt brat at the unfairness of it all. 

She once gave me this responce to my outburst – 

‘It’s okay mum. You feel sad about all of this. I love you.’ 

She cuddled me while I cried. 

I cried out of exhaustion. For release. 

I cried for the overwhelming guilt I had; that she felt I should be excused for speaking to her that way. That she was coping with her emotion in a far better way than I. Mostly, I cried because I couldn’t quite believe how absolutely amazing she is. How proud I was… I am of her. That she could see my weakness and run with it. That she could make sense of my actions, allow me to feel shit and not take it personally. 

I feel sad that she has had to become so emotionally ready, so young, but also blessed that she has been able to do so, and found the strength within herself to take this on. 

Lily is a sibling to Corry and a daughter to me, but she is also a carer, and a truly amazing friend. A person who sees me at my worst and still shows me love. A little, but very grown up 6 year old girl, who I hear get out of bed in the morning and whisper to her little brother, ‘come and play trains with me, so mum and dad can have 5 more minutes sleep’. A sister, who so often has to take second stance to her brothers needs but adores him none the less. 

You are everything to me lovely Lily. I hope that you know. I am here for you, as you are for me. When I have to be away from you, for appointments and hospital stays, when I miss your school events and your activities. When you can’t have your friends over to play. When we are not together for your birthday. When you have to go to stay with other family members. When Corry has slept all day, and therefore stays up later into the evening, whilst you stick to your routine. How he gets to choose exactly what he wants to eat, even if it is chocolate all day long because anything for him is better than nothing. 
  
I know it must seem unfair. That at times you will feel hurt and pushed out. That you must feel sad and fed up with all of it. I will feel it to. It is never my intention for you to feel bad. This was never part of my plan for you or for Corry. It was not the plan for me or for dad. But we must roll with it. Through these tough times we will be connected like no other. Together we can see through the deepest darkness. I love you so.

I am thankful

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We are holding out for a quiet, Christmas. A happy one, spent with those that mean so very much to us. We learn so often in this life that we should make the most of every single moment we get. That doesn’t necessarily mean we need to be taking part in extreme sport, travelling around the world, or going on wild, lavish holidays, although of course, these can be wonderful, fulfilling things to do.
To me, it is ever more apparent that cherishing each moment and living it to the full is as simple as just being with those you love, doing the things that are so easily overlooked and undervalued. Snuggled in pjs, reading a book with your children, or going on a crisp winter walk and crunching the leaves underfoot. Cuddling, play fighting, dancing around in your crackers if the mood takes you. Just being at one with yourself and with those around you, appreciating how absolutely lucky you are to have them, to be you.
The last couple of months have been particularly draining for us. Not just the emotional pain of living with Alexander’s disease, knowing it is consuming every morsel of our lives, that the worst is yet to come. But, also the constant pressure of attempting to keep a balance between peace and joy for Corry, also for us as a whole, alongside my desperation at trying to keep him here with us. The physicality of having to meet all the appointment times, the check ups and therapy sessions, whilst making sure that the rest of our needs are still being met is at times impossible and we have therefor gone without. Be it each other’s comfort, a nighttime cuddle, clubs that we enjoy, time out with friends. It is very easy to be dragged down by it all. To feel alone. To want to give up.
But, in these last two dark and difficult months, our family and our friends, other people who I had no idea that cared, some whom we have never even met, have shone from out of nowhere to support us. To show us that love and hope is here. They have offered so much kindness and comfort. We have received help with daily errands, offers to fundraise. People wanting to give and do things for our children to attempt to make this a little more bearable for them, to help build furniture for us to aid Corry in being mobile. To give us words to ease our sadness and to make me see how much I have to be thankful for.
For all of you, I am so thankful.
It is truely heartwarming to know that we are not alone in this. I have a new found strength within me and a will to fight this with every ounce I have. I am not fighting it by myself. I have a force behind me. Thank You.
Enjoy this festive period, all. Enjoy each other. Be at ease with what you already have. Notice the goodness in those around you, and in yourself. Be happy.

The diagnosis

An MRI scan picked up abnormalities in Corry’s brain just shy of his 2nd birthday. I knew then that whatever this was, it would not be good. I was given a year to contemplate, a year to think things through, a year to come to terms with what could be, but a year later, recieving his diagnosis of Alexander’s disease, I broke and have been broken ever since.
It’s easy to get sucked into a diagnosis. We spent the first 3 years of Corry’s life searching for answers, a name to work with, to enable us to understand, something to fix. But it didn’t work out that way for us. The answers we thought we would find cannot be found. So little is understood about Axd, research is limited and other than therapeutic support, we don’t have much else to work with.
I have been with my boy through his daily struggle to gain the basic abilities we all take for granted, to now face watching them be stripped away from him in the cruelest of ways.
I am frightened of what is to come, of what it will do to him, to me and to our family. But, despite this, I have hope. I hope he stays happy. I hope he remains strong. I hope he continues to find joy in each day and see the beauty around him. I hope he feels how much I love him, and can understand how much happiness he gives me. I hope he doesn’t see how painful I really feel. I hope for a cure. My lovely, beautiful, sweet boy.