Dates in time

I’ve been very aware this last couple of months that time is getting away from me. Dates and numbers playing on my mind.

Dates that I don’t want to contemplate or have to reach. Dates that are also some of the most relevant, meaningful points in my life’s worth and dates that I have to face to be able to heal, even a little.. or at the very least be able to just survive the coming of them year upon year.

This time last year we had fought long and hard to get Corry out of hospital and into the warmth of our home, knowing that he would die and that we desperately did not want for that to happen in hospital. We pleaded for his right to die with love and his comforts around him, not knowing how or when that might be. Knowing full well that we would be taking on a whole load more risk and responsibility over him and his very fragile health. And that we did. We came home and spent 2 very challenging, love filled, very emotional months at home in his beautiful presence, and that I am grateful for – but Inevitably, this time will always be hard.

It was the time that we had to watch as our son slowly faded away before our eyes. It was a time we had to be in our home together, looking at ourselves and our belongings, things we had made and shared together and have to realise that our time together was almost up. Our lives as we knew them were over.

I could never explain to another the hurt at having to let go of the battle for your child; the time we fought, having then to admit to yourself that the specialists were right, that your child will die, no more fighting for them, no more pushing for treatments.
It’s was not a release. It felt like giving up, and that’s something I never, ever wanted to do where he was concerned. I never, ever wanted to let him go, not even when I had to.

Over the next two weeks most children will be going, or have gone back to school. I will be packing up a lunch box and laying out school clothes for lily, knowing that this year I should have been doing that for Corry, too. He should have had a brand new blue and grey uniform with his school emblem proudly on him, heading off to be with his peers, learning to read, write and be able to play. I should have been trying to snap pictures of him in an oversized jumper whilst he walked into the playground looking way too tiny to be leaving me already.

He was too tiny to leave me.

He was just 4. 4 years old, and at the end of this month, he should have been turning 5. We should have had a 5 year old boy on the 28th of September, excited about ripping into the mound of presents awaiting him and doing his goofy arm dance that we used to love, whilst we sang to him a happy birthday and wished him another year of happiness and love.

Instead we will feel even more so the empty space he has left, on the day he was given to us, as we also rapidly approach the upcoming whole year that he will not have been here.

A whole year that I have somehow managed to continue without him. Our humorous, cheeky, loving, friendly, warm, bright and skilled Corry.

 

 

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Memory day

 

Their is not a day that goes by, in which I don’t think of you. Rare is the hour, in which you have not held my mind.
Today I remembered you, from the place in which we lost you. The place that we stayed with you whilst you found your peace.

I remembered the day you were born to us. Hearing ‘Its a boy!’ And feeling like I had no idea what I’d do with one of those.

I remember taking you home and not wanting to let you go, because from the minute I held you in my arms I had never experienced a love like it. In hindsight, I feel that maybe I instinctively knew that one day I may have to.

I remembered how we could communicate very early on using little word. You would use your pointy finger to your advantage and get exactly what you desired. Every Wednesday without fail, patiently waiting for the other kids to finish their dinner before pointing that finger over to a select cupboard, where you knew the chocolate buttons would be waiting for you. You’d be carried over by grandad, open that door and hand the goodies out willingly. Your chore for the week, knowing the treat at the end.

I remembered you ‘helping’ dad with his projects- passing the tools to him, sticking screwdrivers wherever the hell they’d go. You had hands and fingers that were made to tinker…. and tinker you did!

I remembered how you would wake early each morning, drop yourself off the edge of our bed and proceed over to my make up box, where you would spend a good bit of time decorating yourself, the carpet, the wall and all else, knowing that I was too tired to worry about lipstick stains at that unruly hour! I never did move that make up box. It became a ritual I’d become accustomed to waking up to; Seeing the mischief you had created! Just as all childhood, suddenly gone with no idea when or why exactly it stopped.

I remembered all of your soft toys. You adored those toys. Your big bear, over double your size. Your fluffy cow that you would cackle at as I charged it at you. The noisy ‘yo jo jo’ with its heavy weighted head and your seagull Charles, that stayed up with you and nurse playing silly buggers all night, instead of sleeping. You had a hundred and more, but they would all have a place on your bed. They could get away with it, because you’d never sleep in your own. I liked it that way.

I remember carrying you every single day. Right through until your last months. You’d be on my hip. Everywhere. You’d reel off statement words of everything we passed; people and things. I’d plonk you down into your car seat after whizzing about and I’d puff so hard. My arms feel empty here now, heavily weighted but empty.

I can never stop relaying your life in my mind. Replaying your voice. Remembering every little thing about you.
Sometimes it hits me so hard. The sudden shock that you are not here. An urge to wake up from this. I am stuck in between time. Time moving too far away from when I last kissed you, spoke to you. A time frame unknown ahead. A knowing that I must be, and a wanting not to.

I love you Corry. I miss you so.
So so very much.

Sad book

I bought this book back in the summer for me and for lily. It’s been stuffed in amongst her masses of books since. It was her choice of bedtime reads a couple of nights ago. We snuggled up, she read it, we looked at the pictures and questioned them. It’s about a man who feels sad. It’s about how sadness can make him act. It’s about the other feelings that can come alongside sadness and the ways he tries to help himself through it.

I asked her if she felt at all like the author suggests he does. She responded without actually answering, and instead expressed that she thinks I do.

She is right. I have an understanding of it. That’s neither a good or bad thing in my mind, but it does send me into thought about how she can relate to ‘michael’ being me.

It makes me worry that I show it too much. It makes me wonder if she feels she cannot be sad because I am. It makes me doubt the way I handle, or don’t handle, my emotions. Maybe she feels she needs to be strong for me? Maybe she feels that she doesn’t want to be sad like me? Maybe she just doesn’t feel sad and can’t understand why I am?

Part of me knows I should make more time to prompt her to talk about how she feels. Instead of waiting for her to come to me. Another warns me to just let it lie, particularly while she seems to be getting on. Do I dare disrupt that? Or does she want me to? Does she need for me to make that move?

I hope she feels she could come to me. I hope that she feels she could turn to someone. Because loneliness can play a part in how sadness might control us.
I don’t like the thought of her feeling like michael does in this book, because sometimes it feels absolutely dreadful.  We don’t want that for our children, do we? Maybe, that’s why I don’t question her so much. The fear of that. But, if she did I would want her to know that it’s okay to. And I’d want her to know that I was there if she needed.

I suppose sadness is considered to be something negative. Something that hurts us. Something that could potentially eat us whole. But I also see it as a way of letting go. A means of facing the harshness of life and then getting back to it. And that, I hope I am portraying to her. Just by being. I cannot turn it off. It lifts when it is ready; when I am ready. It comes back without me asking it to and quite often when I don’t want it to. But it lifts.

It would be worse not to show it at all. It would be worse not to talk about it at all.

I love this picture. The light that he looks towards. The darkness behind him. Always there, lurking. Always hovering around you. Both working together, feeding from one another, at times one more powerful than the other. The sun breaking through the cloud, the fire sizzling out.

Still a family

‘Appreciate what you have, before time makes you realise what you had.’

I am telling myself this everyday. Because in part, I am already experiencing the later.
Doing so is proving hard. I don’t want to do this without him. But, we are still a family.
We are not the family that we were. We have lost and we are lesser for it, but I have a husband and a Lily for who I love and who are everything and more. I must continue to enjoy, and see happiness and fun and laughter in everything my girl does. And more so, I should try to be part of that happiness and fun and laughter, just as I was when we were whole.

Lily should never feel that she isn’t enough. She must not go to sleep thinking that I will always need more than her. It is not the case.
I have lost a big part of myself; something very precious that cannot be replaced, but she still holds my heart as much as she always did. And what’s more is that she is enough to glue that cracked heart of mine back together. The break will always be there, but it won’t always be seen. When you glance at it from afar it may appear as if it was just as it once was.

I fear for Lily to forget her brother, I do not want for her to move on entirely.
I feel such loss for myself, but largely for her too. She had a sibling. Now she does not. Life is very different. Play time is different. Growing up will be different. So far from how I planned it to be for her, as for I.

I have no guilt in showing her my tears. I am sad, and I am somewhat lost. That is what I am. This is who I am now.
I will talk about him openly to her and anybody else. I will be a reminder of all he was, a sign that he once was here. After all, he has impacted who she is… he is part of what we have become and what we were. He held so much of us in his 4 sweet years. That will never not be.
But I also do not want her to dwell on what has been, or to feel the constant weight about what we have lost.
I mustn’t let it become that we are swallowed whole by what could have been’s; how things should have been different in our lives; How life has been unfair to us.

Do I wish he was still here? So much so. Do I wish that he had never had to endure such a disease. Of course I do.
But he did. Would he have been the same boy had he not? that same boy who I wouldn’t have changed for the world? Likely not. It somewhat made him who he was. The boy that we loved so, very much. The sweetest, most precious, gentle, soft and loving boy that I just about didn’t deserve in the first place.

So we begin again, a different path, albeit not a path we had wanted to walk, but a path none the less. An option, none the less. An option to go on. To try and go on without him. Of allowing us to do so; of enabling Lily to live her life fully; happily, while still holding him in her heart where he belongs. appreciating her for everything she has been, everything she has endured, everything that she is because of this. Every wonderful bit of her. And we will do it. For Corry, for Lily. For us as a family.

A year from diagnosis

I write from Corry’s hospital bedside, where I shed many tears while I watch him sleep off the sedation, keeping his body calm and peaceful.

My pain for him does not subside. It lingers with a dull ache. It weeps even the brightest day. It grows with a desperate longing – a pleading, it grows.
For with the ticking of time I realise the probability of our days being spent together becoming less likely. And with just a passing day it dawns on me that part of him has been stolen away.
Like the sweet, comforting sound of his ‘I love you’ before bed. I will always long to hear him say that another time. I would capture it and never let it fade. The beauty and light of his smile, once a permanent fixture, has now become very tiring, a huge effort, much less seen.

I return to photographs and remind myself of how utterly happy he was. How everything was wonderful in his eyes. My memories serve as a ‘pick me up’ and for a while they bring peace to my heart. But from them also comes the stark reminder of all that has been lost…. In the short space of a year.

A diagnosis of Alexander disease is, to me, nothing short of a curse. The ‘knowing’ what could, what likely will be, has always consumed me until it becomes a reality, and the next stage of fear commences. All lead to an eventuality I longed we would never reach – I still long we will never reach.

I harbour an inconsolable guilt, a grief and a deep sadness which pair with hope, a fierce love and a will to fight every specialist who confirms this reality. To each and every one who tries to take the light from my hands. The intensity and consistency of my feeling is at times too much to bare.

September 28th will mark his 4th year. At this point in time it seems frightfully far away. I would be lying if I said I wasn’t fearful of the road to making it there. It would be a front for me to pretend I don’t question the likelihood of it.
That doesn’t mean I’ve given up on him. That will never be the case. I know that if he can be here today, then he can be here tomorrow and we will continue for as many tomorrow’s as he can push and endure.

I expect no more from him than to do what he can in comfort. I want not for him to struggle on in pain. For now, I just long to be with him, making him as happy and as comfortable as I possibly can. Doing the things he enjoys, with the people we love. Seeing and feeling the wonders around us. A year from diagnosis, this is my intent.

Flesh and bones

  
I’m not doing very well lately. With anything. A low time, struggling to cope with how unhappy and unwell Corry has become of late. I want him back so badly and it’s hurting ever so. I’ve been trying to write, trying to occupy and give myself some clarity. I want to be able to get to something that is right and good. I can’t just now. 
I listen to one of Keaton Henson’s songs and it sits with me. I’m holding its words very closely, because I can’t express myself like I need to. 

“Flesh And Bone” Keaton Henson

And I am alone, so don’t speak

I find war, and I find peace

I find no heat, no love in me

And I am low and unwell

This is love, this is hell

This sweet plague that follows me

And I see war on the screen,

And it is cruel and unclean,

But I still worry more about you

And I am rude and unkind

Have no thought, and have no time

Have no eyes, so no point of view

And I am more than this frame,

I feel hurt and I feel shame

I just wish you would feel the same

And I am more than these bones

I feel love, I feel alone

I just wish you would come home 

My body’s weak

I feel my heart giving up on me

I’m worried it might just be

My body’s weak

Feel my lungs giving up on me

I’m worried it might just be

Something my soul needs

Behind the smile

Wherever the day takes us, I am never short of people remarking about how happy Corry is, that every time they see him he is smiling, how he always seems so cheerful.

It’s true.

He has the most gorgeous nature. A sociable, very cheeky and loving smile, with just a hint of naughty. A dimple for added wow. Big, dark dashing eyes, like his dad, and a look of real joy at being greeted by you, whether it is a first time meet or a millionth. He is a people person, a social being. He longs to be in company. He doesn’t expect anything more of you than to be there with him. And when you move on, he will retire into relax mode. He shall allow himself a breather until you meet again and in that moment his smile will light you up another time. It won’t have faded. I’m lucky to experience it more than most. I merely leave the room and re-enter. (This applies to you doctors and nurses also, unless of course you come wielding a needle, tube, or medical instrument, in which case he will merely pull the covers over his head and pretend to be a rock.)

From what I can tell, without want to stereotype, most children who have had there share of hardship, a real run of the mill, tough old time, seem to have an ability to be content, to simply be happy with everything around them. I can say that for knowing Corry in depth, and by meeting and coming to know other children in these circumstances.

I can’t help but think if my path had been paved differently and I had been dealt such a hand, I should never smile again, I should withdraw and except my fate without fight. I should quite easily never look at another flower and admire it’s beauty or take note of the bitter cold being inhaled in to my lungs, whilst walking under the winter stars, the condensation surrounding me like a mystic fog. And yet I see in Corry how his whole body is alive when he experiences such things. He adores the moon, it’s illuminating quality. He loves to be taken out late into the evening to point out all the stars and the hidden trinkets of light. The sound, the beauty of a raging river; to be near it, he is at ease and he is at peace. He points out the tweets of the chifchaf birds covered by the bushes, wanting to catch a glimpse of them.

I’m glad people see that Corry is happy because he really is. I’m glad they are aware that despite having a life limiting condition, the feeling of joy and peace is never far away if you allow it. I’m glad he can show you that he is more than a title, that it will not consume every morsel of him.

But….

It’s important to me for you to realise that his ability to be so bright to all in his proximity, by no means rules out the fact that he suffers, daily. And he suffers hard! It’s important for me that you know how he hurts so, because otherwise this just becomes something that can be coped with, something that can be allowed to happen. An everyday, get on with it, job. Something that can take people’s lives so viciously, so cruelly going about its business, wreaking havoc as and when it sees fit. I want a cure for this. I want to push so hard for the research, for a treatment, a management even, anything that will make this right. You have to understand that this is downright devastating. For us all.

These god awful diseases knock the shit out of a person. Alexander’s disease leaves Corry weak and fatigued to the point where some days he can’t muster up enough strength to push himself up to a sitting position. He cries out in distress when his arms and his legs just give out on him during what would have been fully contented play, and he gasps in fright when he can’t catch his breath from the violent reflux that consumes his body. It is more often than not that he will feel anxious and tense sometimes an hour before his sickness actually presents. He is hurt and emotionally discomforted at his body forcing him to wake during the night in pain. If not that, he will be thoroughly annoyed with me and his feeding pump waking him all night long because it has an air bubble, a kink, a blockage. How he gets so damn cross with being pushed to do what is felt best for him, be it walking in his frame, keeping out of his comfortable, stabilising ‘W’ legged position, and up until now the constant battle with food which would quite frankly leave him a distraught wreck at the mere ping of a microwave.

The psychological impact that a disease can have on any person, let alone a child is huge. And it can be catastrophic. It can destroy your every fibre. I’ve seen it. I’ve seen him so low and weak that he doesn’t want to get off the sofa, that he is so worn he will sleep the entire day. I’ve seen him cry and shriek for so long that there are no more tears in him to shed. It sucks. These conditions suck.

That’s what I need for you to know.

You can also know that when we wake each morning, I really have to encourage him to let me wash him, to dress him, to get in the car and come to school, that given the chance he probably would choose not to. After a night of pain; a very long night of little sleep and the prospect of a day spent fighting each battle that presents itself to him, who could blame him!? This isn’t a one off night, it’s every night. It is every day.

But yes, he will come, and I will pick him up out of the car seat, and he will once again beam a smile that compares some what to the sun… He will show you his painted, coloured hands in attempt to converse with you, and he will flutter his eyes at every passing being. Because he is wonderful, and he is amazing, and I believe he wants nothing more than to make you feel that way too.

Do keep Corry in your mind. Do keep the many children who are struggling with whatever condition, disease, difficulty they may have to face in your mind. Keep them in your mind as the beautiful, joyous beings they are. You are not wrong. Keep them in your mind as the Warriors they are, fighting each day behind a smile.  Because by heck, they are fighting, always. A Battle like no other, always behind a smile.