Life's a Beach

The Easter holiday's are approaching, Elin is in very good spirits and we are all looking forward to a break! We have a big Drake family holiday booked for a little Welsh town by the sea and can't wait. Last time we went on a big family holiday, Elin was nine months old. She was very small and more importantly she was easily transportable. It was only when a friend asked me recently, on hearing about our holiday plans, if I was looking forward to a nice walk on the beach that I was struck by something rather obvious. As a family, how do we go for a walk on the beach? Buggy's do not exactly lend themselves to sand. Not an issue for most family's with babies or young children- they get carried and by the time they are too big to carry, they are walking. But for us, it's almost impossible to carry over two stone of child further than a few hundred yards, particularly a child who has no muscle control/tone and no ability to grip with hands or legs. Certainly wont be able to push a buggy over the dunes! I got to thinking Elin and I would just have to miss out on any beach-walking activity. But then a friend posted a link to something on Facebook and we have a possible solution. A toddler carrier/back sling. Crucially, it's not the same as the walking rucksacks you see a lot of people with. We tried one of those and since they rely on the child being able to assume a 'sitting' position and maintain it with their muscle tone, it didn't work for Elin. She simply bounced around in it, her head dangerously lolling back and two between the metal frame (no matter how much stuffing with towels we did). She couldn't 'hang on' and it was desperately unsafe. Plus, she hated it. The toddler back-sling seems like it could work, as it will keep Elin resting on our backs, hopefully encouraging the 'safe' feeling she enjoys so much from body-to-body contact, keep her hips wide apart to discourage leg tension and 'dangling' and has a mesh hood that is supposed to be used if the toddler wants to go to sleep but for us should act as a nice soft head support. I am very excited about it arriving, could it be the answer to the problem of walking on the beach? Time will tell, photo's will follow :-)

Life is like a box of chocolates..

Every day when I'm waiting for Elin's bus I get reminded of the scene from the end of Forest Gump where he is just sitting on the wall waiting for his son to get home. It's kind of how I feel, most of my day is just different ways to fill the waiting space, until I can cuddle her in my arms again. Work, housework, seeing friends, supermarket, phone calls, gym..whatever. It can be very enjoyable, my time without her. Let's be honest every Mum likes a break. But mostly it's just a waiting game. Because nothing is quite right when she's not with me. Until, with ten minutes until the bus arrives, the waiting becomes almost unbearable. Elin hates travelling and is undoubtedly distressed beyond measure on the tired and lengthy bus journey home. My wait morphs into a kind of pacey, walk-the-floor wait more fitting to a hospital corridor. Difficult to focus, I just want her to arrive so I can hold her and read her school diary and hope she had a good day. That's my ten minutes a day when I turn into Forest Gump. Of course Forest sat on that wall all day waiting, and what with me not starring in my own emotionally over wrought hollywood movie, I have to actually go out and do stuff during the day when Elin isn't with me...like work! But to Elin, who leaves my arms at 8:00 am and returns neatly back to my arms at 3:30 pm, having no comprehension of what happens in my world in-between, perhaps her Mummy is just like Forest Gump. Waiting on a wall all day until she gets home.

Our home is our castle

Paul asked me ages ago what I wanted to do today 9Mothers Day). I had to answer, nothing. I don't want to make plans or book a meal out. You see, pretty often our plans have to change depending on how Elin is that day and on special occasions this can serve to send me into a spiral of feeling sorry for myself (something I abhor) . It seemed easier to plan nothing and then there could be no room for disappointment, though I hate that this also serves to make me look like I'm giving in to the condition. Turns out, I was right. Totally justified in not going anywhere to celebrate Mother's day, Elin would almost deifintely not have been up for it. Saturday brought a very distressed and upset little girl, needing rescue medication before bed. Unsure what is bothering her. I prayed that Sunday would bring a better day for her, and it did, but I still wouldn't have fancied our chances keeping her peaceful while we lugged her around in the bitter cold and snow flurries. Yay me. I was right. We had aromatherapy at home and painted our nails and baked a cake, and that was my Mother's Day. Didn't have to watch her undergoing violent shakes and muscle spasms in the buggy. Didn't have to listen to her screaming in the car seat. Didn't have to struggle to eat a meal in a restaurant with her twisting on my knee because she is unable to sit in a chair. Didn't have to see the other Mummy's and their toddlers chatting away happily to them and wonder sub consciously for the millionth time what happened to my baby and who chose this path for us(and maybe this is the biggest reason of all why I didn't want to go out today. Not proud to admit it, but no point in writing a blog unless it is an honest one!) Our home is our castle, me and my girl. Sometimes, it's just all you need. Four familiar walls and zero stress. Perfick. Happy Mother's Day to all those SEN Mum's out there struggling with more than you can ever realise, enjoying more than you can ever know.

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.