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.