Living with Cerebral Palsy 🍋🍋

Friday, 11 January 2013


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.
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