Achy breaky heart

My head aches. My back aches. My brain aches. My eyes ache (with tears). My heart aches. Sometimes, that's what living with cerebral palsy is like. Achy.

My Elin forever

Sometimes it hits you, when you least expect it and you are blindsided. Not by what has happened but by what will never happen. How mostly, Elin will remain a constant from now until forever. Largely unchanging, at least to the outside eye. Bigger, of course. More aware, certainly. Slightly more able even. But mostly just the same, just Elin as she is, year after year. Happy, beautiful, funny, loving, joyful. But the same. Forever. As her Mummy there is unbearable heartache in this. But also, conversely, great and immense comfort.

A message of hope....

So, I received a message the other day that I would like to share. I have excluded one or two lines in order for the sender to remain anonymous. However, this message was very important to me and it's so beautiful I thought it needed sharing. You see, it came just out of the blue, from someone I have not seen in a long time. Someone who was not a friend back then as such, more of a fond, yet passing acquaintance. Someone who has had troubles of their own in the past and has been kind enough to attribute Elin's story to playing a small part in helping them overcome these problems. This touched me deeply. One of the things I hope for- and part of the reason I started this blog when she was a tiny baby- is that Elin's story may touch people, to maybe make them feel ever so slightly different about the world. I don't mean to make people 'grateful for what they have' or anything as worthy as that, but rather to see that life can be lived in it's most simple form and happily, too, because it contains love. So much love. And in turn this love that is given and shared can bring great joy to everyone around. This message made me feel that Elin's story is achieving this and thus I would like to share: "Hi Ruth I haven't communicated with you for a long time but I saw a picture of you on Facebook that made me want to write to you. I was a picture I'd seen before- one of Elin and her jellybean monkey when she was just born. I like monkeys. I didn't notice the pipes and wires and pieces of tape, or didn't get what they meant or thought they were just what newborns get. I hadn't read the stories and didn't get what was going on. I just liked that there were were two more cute little monkeys in the world. I've followed your blog and Facebook ever since. I've never known what to say, or if anything I could ever do or say would help in the slightest, or might make things worse by being such a powerless attempt. But I read that one thing that helps is to know that people aren't looking away. We're not ignoring you. When you talk we listen and care, we really do. Reading about Elin has made me think better and differently about personhood and what makes human life valuable and important. I think anybody who had been touched by Elin's story loves her and wants the best for her. You and Paul probably get told a lot that you are strong and good. I imagine there are times when you hate being told that because it seems like that can't possibly relate to how you've felt at times. So I'll try to avoid those terms. It's evident to me that you and paul, in all you do for Elin and others, make more love and beauty in the world.If there's anything, ever I can do for you or your causes, please let me know" So that was my message of hope on a rainy, cold winter's Saturday... and sender, I thank you for it from the bottom of my heart :-) xx

Gratitude

How do you give appropriate levels of gratitude, for people treating your daughter with such immense kindness, understanding, love and generosity that it almost takes your breath away, without sounding dramatic, or worse, dis-ingenuous? I'm not sure you can. You see, one of the most amazing things I have discovered about having a severely disabled child is that it turns out-shock- the human race IS, contrary to a lot of things we read daily and nightmare situations we hear about, capable of huge and amazing kindness. It never ceases to amaze me. I don't mean to sound patronising to anyone that has helped us in this journey or cared about us or done something for us, but I often find myself wondering, would I care this much? If I hadn't had Elin, if it had been one of my friends, would I care this much? I hope the answer is yes. Today, after a stressful and tiring week due to Elin being hospitalised on Monday co-inciding with the first week back to work, I arrived home to find an envelope on the mat. I opened it to discover a wad of cash. My second cousin (who I have not seen for probably 15 years) had done 'Movember' and chosen to donate his sponsor money to Elin. His note said 'I have spoken to my friends and we think you should do something nice with your family with this money. I only wish it was more' I cannot tell you how much this touched me. He wishes it was more? If it had been a five pound note it would still have meant the world, because he thought of us, and he wanted to help. That is priceless to me and more valuable than anything anyone could give us. The thing is, my cousin is not alone. Since we had Elin so many people have been the same. They get it, what has happened to our family, they want to find out more. They root for us. They love Elin beyond words. It's just so incredible, the support we get. Not just from friends. When Elin was hospitalised on Monday, staff from her school were visiting her within 24 hours. Teachers, from school, visiting, as they have done in the past when she's been in hospital. Now, I know the staff at this particular special (in all senses of the word) school would do the same for all of the amazing children who attend. But really, can you imagine ordinary teachers in an ordinary school doing that? I can't, and I'm one of them!! I think it's because amongst other reasons these children like Elin touch people so deeply and in a way nothing else can. They just transcend everyone's idea of 'normal' in the most positive way and what's important in life. To think, when we received her diagnosis back in the early days I was worried people might say unkind things to/about Elin. Nothing could be further from the truth. And so back to my orginial question, how do you show your gratitude to the staff at Elin's school, your friends, your family, the people on facebook you have never met but who have kids the same and ask after her every day, the escorts on her transport and the bus drivers who greet her every morning, as if she understands, with a hearty 'Hello Elin, ready for school?', your colleagues who cover for you when you have to take time off, the amazing nurses and doctors on the children's ward who treat Elin like a celebrity, the professionals involved with Elin who text personaly to ask how she is, the strangers who raise money for you, the staff in the pharmacy who try that little bit extra hard to make sure you get her meds on time, the boss who tells you 'take the time you need' when they could be fed up of another appointment or day off. How on earth, REALLY, can you ever pay all those people back, all those people and more who make everything in your topsy-turvy world just that little bit easier? In truth I probably can't, but I hope this blog post goes someway to doing just that. THANK YOU ALL.

Imagine.

Imagine what life could be. Imagine that I am a Mummy, not a Nurse, too. Imagine that I can hear your voice. Imagine that you reach for my hand and that you hug me when you see me. Imagine that you run and dance and play. Imagine that a simple trip out to the shop is not a test of strength. Imagine going abroad to swim in the sunshine. Imagine that the chemist/docs/hospital was not our second home. Imagine a picnic in the park. Imagine a pair of school shoes. Imagine day dreaming about being old and what my grandchildren might be like. Imagine you can sing like your sister. Imagine exams and university Imagine that Daddy and I could go out together instead of in shifts. Imagine I dont have to watch fits wrack your tiny body. Imagine I'm not terrified all of the time. Imagine a world without worry. Imagine a world without you. I can't. I love you, Elin.

Yikes!

Yikes last post was a little depressing! Really wish I updated this thing more often but good to read a post from so long ago and be able to look back and realise what I had feared didn't happen in fact, and instead we had the best summer hold ever! Elin has had an amazing time, going on holiday, visiting friends, attending a wedding, sitting in the garden (when the weather allowed) watching the Olympics (or was that just Mum and Dad??)generally being calm and relaxed and *deep breath* only having ONE seizure and NO hospital stays! Massive improvements on last year then, and that's all we can ask! So at the moment we are very happy Drake's. It's just.....(yeah you knew it was coming).....as Carrie Bradshaw would say.."I couldn't help but wonder"... ....whether certain people in my life treat Elin differently to how they might have done if she was able-bodied, if she was 'ordinary'? Don't get me wrong. We are incredibly lucky. 99% of our friends and family lavish attention on her and seem as besotted with her as we are. Obviously, things are different because they have to be. My friends and family cannot delight in the latest funny thing Elin said, they cannot take her to the park, or dance with her or do a jigsaw or interact in any 'usual' way, really. But like us, they chose to ignore this fact and they treat Elin as Elin. They love her for what she is..herself. This 99% will never know how much their attention means to me. BUT there is a tiny minority and they think that because Elin is Elin that they don't have to try as hard. That they can go from one week to another without seeing her, without calling. Are you telling me if she was an 'ordinary' four year old girl,(as oposed to extraordinary, which she is) that they would not call to hear her voice? They would not be talking to her down the phone? Would not be coming round for a hug, to play with her, to ask her what she is doing in school, what she's been up to? I know none of that can be done. I know it's shit. How do you think I feel? How many things do you think I want to do with Elin that I can't? But how is it ever ok to give in, how is it ok to stay away, to not bother? You will tell yourself it doesn't matter because Elin doesn't know any different. I disagree with that anyway, but even so. I know. I know the difference between carrying on and giving in. I know which of my friends and family carried on and I know who's given in. And I won't ever forget it either. But ultimately, if you cut yourself off from Elin there's only one person missing out. And it's not Elin.

The Abyss

So a long time since I updated my blog once again! I guess the positive is that when things are going well with Elin I don't feel the need to blog as much, so you can divulge from this that things have been going pretty well for our little Princess lately. For a while now she has only had sporadic seizures, has been doing very well in school (still struggling to sit in anything mind you!) and has generally been a smily, happy superstar. Just lately we had a scare, two seizures in two days. This in itself is not scary, we have seen it too many times for it to be scary. What scares me is the constant worry that it might signal something, like a spiral downwards for her..like last Summer/Autumn. That we might have to go back to bouncing in and out of hospital and wondering if things are taking a dreaded turn for the worst. After months of inactivity on that front you get a little complacent. You forget the constant gnawing feeling in the pit of your stomach and what it's like to live off your nerves. You forget what it's like for certain songs on the radio to reduce you to a heap, to jump a mile every time a phone rings when Elin is not with you. You forget the fear, the fear that this time things will not work out ok. You start to forget it all. Then she has two seizures and you're back there again. What do they mean? Will she have another one tomorrow? And the day after? Or are they one off's? What if she has outgrown her medication, can it be sorted this time/ How quickly? Can we plan anything, can we go on holiday, will she be ok? That's all it takes. Two little seizures remind you of how quickly things can change with Elin. That's what's scary. And hard. Luckily this time, it seems whatever was troubling her at the weekend has passed. I hope it has passed for another few months,I think we are due a nice family Summer break after last year. Life with Elin is sometimes an exercise in holding your nerve. Don't panic! Pray the status quo is maintained. The status quo being ordinary life, as ordinary as it can be, with no hospital dashes, no seizure and no illness to wreak havoc with my nervous system. That's all we need! The status quo of course in itself is not easy. There are still moments of finding yourself in a heap, still heart stopping ringtones, still nervous tummy's and still a great deal of fear, sadness and despair. But it's manageable. It's a manageable level of upset and sadness and hopelessness, because the fact is when Elin smiles at me none of that really matters. The times that are unmanageable, the times I feel like my ability to cope is ebbing away are when the smile does not come, when she is poorly, when she is sad. Not only unmanageable, but unbearable. For now we have avoided the abyss of fear, Elin is right as rain again. Let's hope we don't have to fall into it anytime soon. Let's pray for the status quo.