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 annoyances..it'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"
xxx
<3<3<3
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