Living with Cerebral Palsy 🍋🍋

Wednesday, 9 November 2016

My daughter knows no hate..

So today we woke up to the news that the USA has a new president, Donald J. Trump. When Elin woke me in the night I checked my phone and it seemed like he would win, though I couldn't believe it would actually happen. As I drifted back to sleep once she was settled I had a nightmare about the election. When I woke up I discovered my nightmare had ACTUALLY come true. Like so many people today I have many questions about this could happen.  It feels like a joke. I'm not Clintons biggest fan, but even her concession speech this afternoon was more presidential than anything Donald Trump could ever dream of uttering.  America no longer feels like the land of the free and the home of the brave, after the most vitriolic campaigning in its History. I cried through Hilary's speech about equality, because, hot on the heels of Brexit of course, I cannot understand why there are so many people out there who would vote for the attitude to the world that Trump has conveyed in the past surreal 18 months. Don't even get me started on the viral video of him mocking a disabled journalist. And yes, I was looking forward to a female president, albeit an imperfect one. A good friend is pregnant. I think of her baby coming into the world, if it's a girl, and how she would deserve to know that anything is possible for her.  In her speech, which finally drew my tears after an angry day, Hilary said " To all the little girls who are watching this, never doubt that you are valuable, powerful and deserving of every chance and opportunity int he world to pursue and achieve your own dreams". Trump's views on women expressed so sickeningly in 'those tapes' from a few years ago could not be more of a contrast. What do we tell our daughters???
I don't, of course, have to tell my daughter anything.
Elin knows nothing of world politics, she never will. Elin has no glass ceiling to try and smash in her lifetime. Today I am glad, that my daughter knows no hate.
She knows no racism, no sexism, no misogyny, no lies, no hurt, no anxiety. She knows no betrayals, no inequality, no sadness, no despair, no war. She knows no conflict, no poverty, no death, no destruction, no darkness.
She only knows love.
She knows cuddles, laughter, support, safety. She knows warmth, humanity, fun, smiles. She knows trust, contact, music and light. She will never have to negotiate the world in the same way as she would have done in her parallel lifetime, that lifetime which slipped away from her the day she was born.
She knows no hate and never will.
We have always said this was something we could hold onto, that her life, to her is a wonderful one. Maybe we were just trying to convince ourselves a little, to make things seem ok. But today, as we went to Elin's annual school review (which was so wonderful and positive) and got to see her in her classroom playing with a parachute and the amazing staff at her school, it didn't feel like I was trying to convince myself of anything. It felt real. It felt like she was operating on a higher level of consciousness than the rest of us mortals and that she was better off of it. I felt grateful, I felt glad.
My daughter is special, a miracle. She knows no hate.
And she never, ever will.
And I thank God, at least, for that.

Sunday, 6 November 2016

A brighter day

You may have gathered my mood was not a light one when I wrote my last post. It's not like me to dwell on the negative, but sometimes you can't help yourself. Sometimes the weight of this whole journey gets a little heavy. Then, if you have bad news- that may be even unrelated completely to Elin- it can tip your balance. The knife edge of emotion that you regularly find yourself walking along as a parent of a severely disabled child becomes impossible to negotiate effectively. So you fall off the edge a bit. Only a bit- you're used to this after all. But still, it's hard sometimes. I'm not trying to apologise for these times, it would be disingenuous and lets face it, slightly weird if I wrote a blog like this and pretended everything was all sunshine and lollipops. It's not. But today I can say thank you to the Universe again. Thank you that these times of darkness are so much fewer and further between than they once were. I can recognise this, how our lives have taken 8 years to feel normal, but that, thankfully, normal is exactly what we feel. For the majority of the time anyway. The shadows only seep through the cracks in the light that Elin brings to us occasionally now. And I am thankful for that, every day.
Elin herself has been wonderful, for so long. Like every other Mum of a severely disabled child I am almost afraid to say this. But we have to celebrate the good times without being frightened of any repercussions fate might decide to deal us! She really has been amazing. We are so happy and proud of her. School report continual improvements in how alert she is and in her abilities (such as using switches). Just wonderful. We got through the dreaded month of October with out any problems (first ever) even though a little cough reared its ugly head- it didn't develop. Thank you, thank you, thank you.
Oh- and Caitlin is having the best time ever at Drama School in London. Having visited her cute little bohemian flat that she shares with two fellow acting students a few weeks ago I can confirm she is 'living the dream'!! I wanted to stay and be a student again!! It's hard work (hours are 9am-6pm daily) but since when did anyone achieve a dream without hard work?? It's such a wonderful and exciting time for her. She loves it.
On Friday Caitlin came home for the first time since she left for London on September 8th. " I was SO glad to wake up this morning and see a field!!" :-) It's been two long months without her beloved big sister for Elin. We were anxious to see how she would respond. At first, Elin was a little confused. You can't blame her! Two months is an age for her. As she tried to get her bearings it was clear she was desperately trying to work out what was going on. Then she slowly seemed to understand that the prodigal sister had returned and was delighted. I'll let the photograph do the rest of the talking...
We do have so much to be thankful for. And we are.
Until next time folks...

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