Living with Cerebral Palsy 🍋🍋

Wednesday, 23 December 2015

My Christmas Wish...

I dreamt last night I had a baby girl and she was healthy and she cried when she was born and I was delirious with joy because in that second, even though I was fast asleep, my sub conscious saw a million doors open that had always been closed to me. Waking up was hard. I try not to think about the what-if's. But then almost immediately I remembered how I spent so many Christmases wishing for you and finally you came and showed us all what a Angel really looks like. I hate it when people say special children were sent to special parents who God knew could look after them. Because I think it's the other way round. I think you were a special Angel sent to watch over us all, instead. We are so grateful you are here. We love you so much Elin. The best little girl in the world. Merry Christmas.


Sunday, 20 December 2015

Two Christmas Angels

Well in the official start to our Christmas (Elin's school Christingle service) she was the most beautiful Angel we have ever seen! An absolute joy to watch her smiling and laughing her way through the performance . Then, last night on Welsh T.V Elin's sister Caitlin proved again she has the voice of an Angel with a beautiful, original rendition of 'In The Bleak Mid-Winter'. Elin has already watched it several times this morning and absolutely loves it. Hope you do, too. Merry Christmas everyone xxxx


Thursday, 17 December 2015

Diamonds on the soles of her shoes....

Phew! It's been a very hectic week in the life of Elin! She has had two appointments which we have been waiting quite some time for- both of them at ALAC (the artificial limb and appliance service) which basically deals with splints, shoes and wheelchairs (as far as Elin is concerned anyway). To use a topical Star Wars analogy, one appointment was very kick ass Storm Trooper style and the other was as dark as Darth Vader :-(
The new wheelchair assessment went brilliantly. You will remember after her chair breaking we borrowed one from a little friends of Elin's- and we have noticed much more success in terms of sitting since using it. It's called the 'Chunc 45' and I went to the appointment on Monday expecting to have to persuade them to let us have one of our own and perhaps even to fight for it. I needn't have worried. The lovely new O.T agreed Elin looked great in it. It what is traditionally a lengthy appointment, Elin was amazing. She sat beautifully and literally grinned all the way through (see exhibit A). Phew! Our next appointment will be attended by a rep from the Chunc company and we are hoping that it won't be too long before Elin has a brand spanking new are to measure chair :-) Yay!

Exhibit A:


Two days later came the second appointment, this time to pick up some shoes. This should have been a five minute appointment. We have been waiting for the shoes since August. I kid you not. You will remember Elin was measured for some splints back in August, which arrived sometime later, minus any shoes to go over them. Why splints are ver provided without suitable accompanying footwear is beyond me, particularly when the splints are specialist and an extremely funny shape.  Anyway a pair were ordered at my request and in the meantime Elin had to wear a pair of sleep socks over her splints, until we realised her old horrendous Spice Girl style moon boots just about fitted over them. So for weeks on end she's been going to school with feet Buzz Aldrin would be envious of. Anyway finally we got the appointment to go and pick them up at 8:40am the week before Christmas. Guess what. They weren't there. The orthotist was very apologetic, the company had let him down. He had managed to find some makeshift shoes from Rhyl's ALAC bless him, all of which were uglier than a monkeys armpit. As it became clear we were going to leave with a black pair of boots that would have been more at home in the suitcase of a WW2 evacuee boy, instead of the pink, fitted pair I had promised Elin for Christmas, I couldn't stop my tears from falling. Why should Elin have to wait four months for shoes?? Why should she get ugly horrible one's when she deserves so much more? Luckily the orthotist was out of the room at this point (when I say room, I mean a small sweaty cupboard we had been parked in which was less roomy and more sweaty than the Trunchbull's 'Chokey') so I had time to pull myself together. This was difficult however, since the O.T in the next cupboard-sorry, room- who was dealing with an elderly gentlemen repeated the phrase 'D'ya know what I mean?' and 'I'll be honest with ya' to him so loudly and so often during his twenty minute appointment with the poor old chap I wanted to grab Elin's boots and use them as the weapon they had surely originally been intended for and ram them down his patronising, faceless O.T throat.
You have probably deduced I was pretty upset by now. We finally got out of there much later than anticipated and I took Elin hastily back to school. When I got there I had a lip wobble as I showed the staff the evil boots which by the way don't even fit properly (and just in time for her school Christmas party too- grrr!) . I was given a cup of tea and within ten seconds they had me laughing again. Did I ever mention how much I bloody love Elin's school? I think I probably have :-) They promised they would pimp them up with some tinsel or something and I left Elin enjoying a visit from Father Christmas, feeling better.
Well, today Elin came home with a little more than tinsel on her shoes. She came home with this:
More bling than Kim K's wedding to Kanye. Yes, I think this is called 'going the extra mile' which won't surprise long term blog readers who know about Elin's school already. I cried when I saw them and not just because I love them. How do you put into words what it means that the staff in Elin's class not only understood why I was upset about the shoes (and didn't just think I was being hormonal and bonkers) but took the time to do something about it for us?  You can't put it into words. You just have to say thank you.
Thank you for getting that this was about so much more than just shoes. Thank you for getting that shoes are and always have been my achilles heel where Elin is concerned. No girly Lelli Kelly's, no ballet shoes, no old fashioned mary janes, no cute little wellingtons, no cool converse, no comfy slippers, no pretty pumps. I can't even look at girls shoes in shoe shops- seven years on. Who knows why the little things hurt so much but sometimes the little things are the hardest to deal with. I just want my daughter to have a pair of nice shoes and I have zero control over this. She looks so beautiful and then she may as well have a neon sign hanging over her feet saying 'look at my twisted, poorly, disabled feet everyone!!!' It makes me weep, literally. Always has done, regardless of rationality.
So a few sticky diamante's went a long way today and patched up a tiny crack inside my heart. It's the little things.
Thank you.

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