Living with Cerebral Palsy 🍋🍋

Wednesday, 13 January 2016

Hi you lovely blog readers. What's new with us this week? Hmmm. It feels like a bit of a 'wrong' week. Staring with the good news, we had a gorgeous weekend with visiting family (baby Gruff!! And his Mummy and Daddy of course) . Gruffy is a cherub and Elin loves having him around. Since he can now speak a bit (clever boy!) he spent a lot of time saying 'El-in' very precisely. He also remembered she likes having her nose beeped, stroked her, brought her toys, kissed her about a billion times and enjoyed the odd game of poking her in the eye. She loved every second. So, so cute. The stage in toddlers before they have a clue that there is anything wrong with Elin is pure magic to me. Toddlers are the only beings on earth that can see Elin in the most pure, uncomplicated, unquizzical way and it's just wonderful to see that wide eyed innocence. To them Elin is like very other being they ever encounter. I love that, though older children bring their own magic in the way they interact with her in spite of realising she is different of course. We're all missing him already. 

But it's gone a bit downhill.  Something changed....and I don't like change. It started with Elin's first seizure since August on Sunday boo! Scary and sad. It ended an incredibly good run for Elin which we are blessed and thankful for but somehow the reversion to dystonia, seizure and her not 'firing on all cylinders' as we say is all the harder following a good spell. Like having your taste of honey and then having to return to normality.  Then the week has continued with a few other little's hard to explain but everything just sort of feels WRONG this week. This is all underpinned by the fact that just lately I have been thinking a lot (too much, probably, as is my wont) about what Elin's condition has done to her physically, and it's not really very cheery reading (sorry!). I've been meaning to blog about it for a while. As she has grown older, there have been very gradual deteriorations in Elin's physicality, especially her hands, feet and teeth. For example what I affectionately refer to as Elin's Jeremy Beadle hand has definitely become quite a lot worse quite quickly (more bent). It genuinely never fails to shock me what her brain damage does to her lovely little body. That sounds daft because we learn at school during our Biology classes just how the brain literally controls absolutely every movement we make from the pupils of our eyes to our little toes. But either I wasn't listening carefully enough during those lessons (quite likely!) or it just is impossible to comprehend until you see the impact a damaged and not-fully functioning brain has on the body.  Elin has contracted muscles due to lack of use, gradually wasting arms and legs due to no muscle build up and curvature of the spine slowly beginning because she can't be upright long enough, her feet have slowly bent too much to properly fit in shoes. Her once beautiful teeth and gums are losing shape also due to lack of use through no chewing and swallowing. It's starting to get tricky to prize her little hands open long enough to fit into her mittens properly. I don't mean to suggest that I tear my heart out about aesthetic issues but all these things have connotations for her health and quality of life/ how comfortable she is in general. Also, I'm not going to lie it does hurt when you have to watch any kind of deterioration in Elin. It also hurts when things affect her beautiful appearance because she simply doesn't deserve to be anything but the Princess she really is. The reason Dentists brace teenagers teeth (like mine!) is because nobody wants to become an adult with teeth sticking out at all angles. Why would we want Elin be any different? Yet for a myriad of reasons she is and will be different. It's out of our control. It makes feelings of anger and frustration about the whole condition and what she has to go through re-surface. That's never fun. But, like everything we just have to become used to it and do what we can to counter act these small changes. There is really no choice. Who would have thought that Elin's brain damage could have not only affected her so profoundly from that fateful birth, but continue to do so throughout her life, simply making life more difficult for her? It absolutely slays me. I always try to be honest in my blog posts and I have been honest here though reading back through it I hope I haven't given the wrong impression. You see, despite how hard it is to see these things happen to her body, Elin is easily still the most beautiful being I have ever laid eyes on and she always will be.Both inside and out. 
 you Elin xxxx
"Pretty soon you're gonna get older
Time may change me
But I can't trace time
I said that time may change me
But I can't trace time"

PS We do try not to dwell on these things! Normal positivity shall resume in Drake towers very soon, probably on Sunday when the dank, depressing not to mention flipping freezing week is officially OVER. Then we can get back to behaving like this:
Lots of love

Friday, 1 January 2016

Ring out the old....

Ring in the new.....and in this case the 'new' is a Christmas with Elin in the BEST health we could possibly have wished for!!! Yaaaaaaayyy!!!!!! We literally could not have asked for more from her and without a shadow of a doubt we've had the best Christmas we can remember. We are over the moon. Elin has been in great health, sleeping well and sitting in her chair. She has enjoyed lots of presents and visits and when family came to stay from London she was even able to sit in a chair long enough to join us all on a day trip to Llyn Brenig Resvoir country park and also have a ride on the Llangollen Steam Railway. She had fun with her little buddies Arthur, Tabitha and beautiful new addition to the family baby Ivy !!! She missed fluffy head Gruff a bit, but he is coming to stay next weekend, as his Daddy was working over christmas , so more cuddles to look forward to next week. Yippee!
Elin even managed to go shopping to Chester today and visit the Disney shop! It was very rainy and there was an icy wind in her face, which is her least favourite thing in the world, so she did amazingly well. We are two very proud and happy parents this holiday.
Happy New Year and here's hoping that the way 2015 ended for us augers well for a bright and healthy 2016 for our girl. I'll leave you with a few photo's to enjoy until next time......

Blogger Template Created by pipdig