Living with Cerebral Palsy 🍋🍋

Monday, 29 July 2013

Feeling breezy....

Just a little photo for a certain someone who I know will be checking this blog wondering if Elin is having a good Summer :-). Today we picnicked at Ty Mawr with friends and Elin decided she loved roundabouts :-) This is one of my favourite photo's ever because she was laughing like mad when it was taken, loving the wind in her hair. We will have to put a roundabout on her Christmas list. Happy Hols everyone!

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Friday, 19 July 2013

Five years ago on Monday......

We simply had no idea if Elin would live. Each 24 hours was precious and miraculous.  You know what? Each 24 hours is still precious and miraculous.  I could not look at these photo's for the longest time, because I remember what I was thinking when they were taken and I could not go back there, in my head. But now they give me joy because on Monday Elin turns 5 and when we took these photo's we had no idea if the day would come. 5 was the 'age' they gave us. She may not make the next 48 hours, even if she does she may be so poorly she might not live to see her 5th birthday. Well, she did.  And she did it in style. So, so much to celebrate. Thank god for you, Elin. We love you with all our hearts. Happy Birthday.
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Sunday, 14 July 2013

We already had our miracle...

I suppose you have to remember that things were different 50 years ago. Elin would not have survived. It's only medical advances in about the last 15-20 years that have meant she is still with us today. 50 plus years ago, even 30 years ago, there simply would not have been the technology or advances in medicine to save her initially when she was born and then keep her alive. There were, consequently, a lot less severely disabled children around. If any children similar to Elin did make it through, parents were actively encouraged to 'give them up' or place them in homes where they could be cared for by medical staff. So all things considered you have to realise lots of elderly people simply aren't used to dealing with children like Elin. It's just not in their realms of comprehension. Not all elderly people are like this of course, just some. They love Elin, of course they do, dote on her in fact. But they constantly ask the same questions, hoping for a different answer. Will she ever eat orally? Will she speak do you think? Can't you take her abroad to get her 'fixed'? No. My answers are always the same, but they take no discouragement, especially if they have seen something on the news or in the paper about a miracle story (inevitably a child with a completely different condition or prognosis to Elin, but this seems not to matter) . How can they realise how these questions pain me, not in themselves but in there continual repetition? My answers will never change. There is no 'cure'. The person in the village who had a car crash and was told they would never walk again and is now absolutely fine with no issues bares no resemblance to our story. It cannot happen for Elin. The miracle has already happened, because she is still here and she is still breathing, that was our miracle and I'm pretty sure we won't get dealt another one. It's not like I don't want to be hopeful, there's plenty to be hopeful about, but within the realms of what we know to be possible. I can even learn to stretch the boundaries of what might be possible but I cannot spend my life wishing for the impossible. Not only is there simply nothing worse than false hope, but it feels like a betrayal. It's hard to explain. I suppose ultimately I want everyone to just finally accept Elin for who she is, and that the prognosis cannot change, but the way we view it can. It's a hard but necessary lesson to learn. It's to continually wish things were different, or hope a doctor in America somewhere can wave his magic wand over her that feels like the betrayal, it's like saying you want her to change. Of course I wish things had been different at the start. Of course I wish she had the life she was meant to have and that she deserves, but until someone invents the Tardis for real or can turn the clock back five years and change what happened the day she was born I will stick with counting my lucky stars every single day for what we have got, not what we haven't. “We must let go of the life we had planned so as to have the life that is waiting for us”-Joseph Campbell
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Elin listens for Daddy coming in....

video
I love this! You can clearly see Elin listening for, then looking for, Daddy when he get's home from work :-)
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