Living with Cerebral Palsy 🍋🍋

Tuesday, 26 July 2016

24 hour party people :-)

Hi Elin fans! As promised here is a quick update on the big birthday weekend..
Elin had a fab party and there were roughly a million people in our garden enjoying the fun! (This may be a slight exaggeration, but only slight). There was no rain, plenty of sunshine, a bouncy castle, a massive paddling pool that looked more like a water park (thanks Amy!),loads of balloons, an incredible amount of gifts and money for sensory toys, not quite enough food (doh!), too much drink, a beautiful birthday cake and smiles all round. Nobody could quite believe she was 8. It was humbling that so many people came (from all over the country!!) to celebrate with us. It goes to show how much she means to everyone and that is so wonderful for us to see. Elin's birthday isn't just an ordinary party, it's a celebration of a miracle and an acknowledgement of how special it is that the girl who almost didn't live for even eight short minutes has been bringing everyone joy for eight long years. She had a great day and followed it up with a birthday outing to see the BFG at the Cinema (which was fantastic and made me cry twice). Now, I'm off to choose her some new switch/sensory toys with her incredible amount of birthday money (which could frankly keep BHS afloat for another 12 months) Have a great day folks, keep smiling, enjoy the pics of our girl :-)


Friday, 22 July 2016

Isn't she lovely :-)

The moment we met you we thought we had lost you. But you clung to life and the minutes turned into days and weeks then months and now eight amazing years. Happy Birthday Elin, our miracle girl. We are so very lucky to have you.
 Big party tomorrow. Updates will follow :-) 


Sunday, 10 July 2016

I hate you so much right now...

Some days you just have to dig deep. Today is one of those days. I'm lying here watching Wimbledon, detached completely from it,  with Elin lying on me and I'm digging deep. I got Kelis circling in my brain because her voice in its screaming anger echoes exactly how I feel. Elin is continually writhing and very stiff today, not comfortable in her own skin, not comfortable on me, or anywhere. The dystonia has her little body in its jaws today and isn't letting go and I have to stand by and watch the monster. We tried to take her out before, the guilt of keeping her inside on a weekend predictably eating away at us, but the guilt of taking her out and thus upsetting her dystonia further predictably crushed us in the end anyway . It's a lose-lose situation. It poured down without warning and she thrashed and grunted in her chair whilst we couldn't lift her out because, you know, we were all getting soaked. There were shelters but no seats and how do you stand carrying a chunky eight year old for very long? You don't. Fighting with her chair in and out of the car restraints, fighting against the dystonia rendering her practically impossible to hold. Fighting against the rain, fighting against the urge to scream and the lump in your throat because you just wanted a nice afternoon out of the same four walls. For her. For us. I'm sick of fighting. When trying to do the simplest of things involves a struggle at every turn it drains you. My left hip is screwed from holding her, it constantly aches and clicks and wakes me up and I'm too scared to go the doctors because, really, what am I supposed to do about it? So I fight that too.  I got up seven hours ago and I want to go back to bed. It's exhausting. Maybe the real fight is the emotional, not the physical. It takes me back in time to a place I don't want to visit. You know -the 'why us?' place where reason and happiness go to die. I hate you so much right now, Cerebral Palsy. Dystonia. Fate. Destiny. The Universe. Whatever it is . I hate you. The whole world is planning their Summer hols and we're just hoping Elin gets at least a good few dystonia free days this year to enable us to actually get her out and about without it being massively traumatic for her, and us . If those days also coincide with some sunshine well then we will feel like we've won the lottery. Woo fecking hoo. I wish with every fibre of my being that someone could find a cure for dystonia, since the arching and the writhing and the constant stiffness is what affects Elins  quality of life so badly, never the fact that she is disabled. We are so fortunate to live in a country where being disabled actually hardly stops you doing anything anymore. But the dystonia will, oh god yes. And did I ever think there was a time I would be sat here wishing my daughter was 'only' disabled? That I find myself wishing to God-knows-who yet again that I f we could cure the dystonia I would happily take the disability, honestly I would, I promise guv. What a sad little wish that is.  It makes my heart pound and my stomach twist with the unfairness of it, the frustration. So I'm digging deep, like I've taught myself how, and I'm riding it out and biting my lip and trying to care enough to root for Murray and attempting to remember the hopeless feeling will ebb away, as it always does. But though tomorrow is and always will be another day, rest assured Cerebral Palsy, I really really hate you so much right now. For everything you stole from all of us. I hate you. 

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