Living with Cerebral Palsy 🍋🍋

Saturday, 25 January 2014

Another great article…..

Another great article that certainly resonated with me and will do with other Mum's of profoundly disabled children. Very well written

Friday, 24 January 2014

Throw back Friday

This week's throw-back is from April 2012 when we finally met one of our online friends Mags and her gorgeous little boy Zak. Until Elin started school, I knew one other person with a child like her. I needn't point out how lonely this can sometimes make you feel. Think about it, with ordinary babies/toddlers/children there are a billion people around you at any one time who can lend a sympathetic ear, give advice and tell you they have been there. It's a bit different when you have an extra-ordinary child like Elin. Nobody knows what to say (at least at first) none of your friends and family know about your child, other than what they have kindly looked up on Wikipedia in order to understand. Therefore, the online community of mum's was and still is massively important to me. The internet gave us access to other families like ours at the click of a button, whenever we needed it. Instant messaging, advice, tips, pointers, empathy (not sympathy)- it actually kept me sane a few times. Knowing we weren't alone, that someone had been there before us. Absolutely invaluable. The above picture was taken in Alder Hey when me and Mags, one of the first 'online' mum's I ever met, gleefully realised that Elin and Zak had an appointment on the same day. After three years of messaging we finally met up and got our little fighters together. it was so good to meet Mags, her husband and Zak in the flesh after they had been so supportive to us through the medium of cyberspace. I understand why people get snotty about social media and online forums- used incorrectly they can be a nightmare, especially when there is a current trend of 'oversharing', it can feel like nobody has any privacy any longer. So easy to get lost into the electronic world. But for us,in this respect, the internet gave us an outlet for feelings, questions, emotions and confusion. It helped immensely particularly when Elin was a baby to see older kids with the same condition smiling their beautiful smiles and thriving. Maybe someone is reading this now and feeling the same way. I hope so and if you are I want to say you are not alone and if you want to 'talk' just open your computer and click away on those buttons, because there is, I have discovered so many times, no substitute for communicating with someone who has been there and got the T-Shirt :-)


Sunday, 19 January 2014

10 things never to say to me....

Sadly I can't take the credit for this fab post, written by a Father living in America with two disabled daughters. Great sentiment though.

10 Things I Wish People Would Never Say to a Parent with a Disabled Child


No, it's not a mistake. All ten items are blank. It's not that I don't find things offensive when people make comments about my disabled daughter. I just happen to believe my daughter is more important than that. My hurt feelings will heal. My daughter won't.

When it comes to those outside our immediate family, the most important thing I can do for my daughter is to educate; educate people about her, educate people about her condition, educate people about the awesome purpose and value of the disabled. Unfortunately, I can't do that if I'm shutting them out because I'm offended at whatever they said.

I'm surprised they even say anything to us at all. One parent gets offended because they referred to their child as handicapped instead of disabled. Another gets offended because they referred to their child as disabled instead of handicapped. Heaven forbid they should come from a generation that knows no other term for the condition they call retarded!

Wow, I just said it, the R-word so go ahead and let the hate mail begin and, while you're spewing hate, I'll smile as if it doesn't hurt when anyone refers to my child as retarded. Why? Because befriending those in ignorance is a better cure for their ignorance than humiliating them. It opens the door to them being receptive instead of defensive when I share with them a better term.

Getting offended makes it all about me while pretending it's about my child. That's not parenting. Parenting means putting my child's needs ahead of my feelings. As long as their purpose is not to mock or harm my child I will welcome anything they say because that opens the door for the most important thing I mentioned above, educate, educate, educate.

When people are afraid of innocently saying the wrong thing they will simply say nothing and that, my friends, spells e-x-c-l-u-s-i-o-n, the very thing we are trying to prevent. It's time we in the disability community stop making things worse and start sharing some of the tolerance and compassion we demand from others.

The choice is yours. You can fill in those 10 blanks with whatever offends you the most and, in the process, feel hurt and angry, or you can fill them in with loving ways to respond when people say things that hurt.
Roy L. Ellis

Thursday, 16 January 2014


12 months ago today, we took Elin to Alder Hey for an emergency EEG. Her body was in constant and fairly violent spasm. Absolutely terrifying. We feared she may be in 'status epilepticus'  (a constant seizure). Thankfully this was not the case, but were relief prevailed on discovery that her poor brain had not been seizing for an elongated time, so fear raised it's ugly head in learning about a new diagnosis, 'Dystonia'. We hadn't really heard about this before and incredibly, as luck would have it (for us, not for them) there was another Mummy on the ward alongside us with an eight year old boy with the very same diagnosis. I thank my lucky stars for that Mummy and the sanity she brought me with her reassurances in those first couple of days on the ward, as Elin writhed and struggled against herself. It was one of the worst things we have ever encountered and I hope never to see her in that state again. I learned to function in a constant state of terror, something I hadn't known since those first few horrendous weeks after Elin's birth. I didn't know if I would ever see Elin smile again. The 'expert' consultant was not positive and actually told us this could be 'it' for her now. We were heartbroken. Thankfully as you know the story ended well as Elin responded amazingly to the new medication and in 48 hours the spasming had ceased and she was smiling again. I have never felt relief like it. However, a new diagnosis took quite a while to get my head around. I honestly thought we had no more nasty surprises in store, that out medical journey of discovery was over with Elin following the diagnosis of Epilepsy some three years before. This was not to be though, and we researched and joined online forums and learned as much as we could about this confusing and frustrating new condition, (as well as trying to balance her meds over the coming months to reach a state of equilibrium).  Not the start to the new year we were hoping for. 2013 never really took off for me after that. Nothing like the shock of seeing your child like that to give you a firm slap around the face (and believe me you can still feel the sting six months later.) Definitely not my favourite year.
2014 is looking more promising already what with getting to January 16th with no hospital emergencies! I will take this as a good sign that 2014 will be a better year in general. Elin is still herself, still smiling, still gorgeous- something I would have cut my right arm off for this time last year. So once again I'm counting my lucky stars that fate is still shining favourably on our girl. She's a fighter alright.

Friday, 10 January 2014

Throw-back Friday

This week TBF is taking you back in time to 1974!! Meet Elin's Nanny and Grampy aka my Mum and Dad eight years before me and my twin sis were born. I love old photo's- apparently back then it was all about the Ben Sherman shirts!! Included this because I think Elin is the image of my Mum (always have done) and this photo is a good example of that- I don't think I'm the only one who can see it???


Wednesday, 8 January 2014

Double edged dream..

Paul had 'The Dream' . He's not had it before, though I have... and several friends have admitted they have had The Dream too. It's a lovely dream, until you wake up. Then it hurts, for a split second, so so badly.  Part of you wants to close your eyes and go back to The Dream, but part of you doesn't anyway, because of the hurt of waking up. The Dream is when Elin speaks. To Paul, last night, she said 'Daddy, I'm tired' so he put her on his shoulders to carry her. Even in his dream he says he knew what a momentous occasion it was. As though his psyche had allowed him to forget the impossibility of this, but not to forget WHY it was impossible and that it must be a miracle. In his dream he called me, again and again desperate to tell me that she spoke. That a door had opened, the possibilities of communication were now endless, she can speak..she can speak! He says he liked to hear her voice in his dream. He didn't seem as rattled by The Dream as I had been. He told Elin all about it.  I find myself admiring his resilience (is this a man/woman thing I wonder?) the ability to not ponder TOO deeply, to not get TOO maudlin, not to let The Dream get under your skin too much. But, as the day draws to a close I can hear him still, as he carries out Elin's bedtime routine with her, repeating 'Are you tired, Elin?' 'Are you trying to tell Daddy you're tired?' 'Say it Elle, go on Im tired Daddy!' he laughs and she laughs because he is laughing. But he keeps asking her. As if somehow he subconsciously believes his dream was a prophecy and a miracle could occur. Maybe The Dream did get him, after all, the juxtaposition of the elation and the heartache. How could it not. The stark truth, fleetingly realised in the seconds between asleep and wakefulness that the only time you will ever hear your daughter's voice, is in your dreams. Something hard to admit, even harder to live- but not something either of us want to stop dreaming about in reality, because we would take the heartache of waking every time. Just to be able to say, and feel 'She can speak..she can speak!'. Just to hear her voice.
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