A sad and hard day

One of our students died yesterday, she had ongoing health issues but none that should have caused her death.

Today was hard and exhausting, and my life experiences made me deal with it well enough, as well as anyone could expect.

I've got a pounding headache now and I think I'll get an early night.
I came home and saw my lovely little family cooking together, they were making lasagne and when I held them both close, they stood with me, holding me while I finally cried. I'd been holding it in all day, being there  for others, trying to make sure we were doing the right things as a school.

In amongst all this we had several other horrible situations, calls to the police and social services and student kicking off. They day went by so quickly, so sadly.

'Be the Verse' Philip Larkin

http://allpoetry.com/This-Be-The-Verse

This poem was introduced to me by my big brother. I thought him so important and clever even before he read this to me. My big brother was my hero for a time. I didn't see the many layers of relevance in this poem at the time but agreed with the sentiment and was, of course, simply impressed that an old man who was a librarian, could use the f word and have it published.

Not long ago I sent the link to a friend I was becoming very close to, I pointed out that as parents it is inevitable that we are going to fuck our little ones up, we should embrace it and just try to love them as much as we can, give them the resilience to cope with it, regardless.

The layers of this poem go into my genes of course, my dad fucked me up, his mum him, who knows if she was the first... and despite not passing the literal gene onto my daughter, she still has to live with the effects.

A couple of weeks ago her school began to worry about her and suggested a form of therapeutic play, we, my logical and non-worrying husband and I discussed it.We talked about the idea of making too much of it all. She been seeking out comfort, been crying, getting worried about my brain. Worried that my whole brain would get frozen, that I had wanted to spend a special day with her because I was going to die, because...
At home she seems very content and happy, she doesn't seem to worry. But her little life has been packed full of hospital visits, knowledge of test results, disability and just recently I think the fact that her best friends aunty died, showed her the pain of grief in a way she just can't articulate.

And she must sense my tension, my worry, my own fear because as much as I try to hide it from her, as much as I try to be 'normal' I'm not. and sometimes I'm not very good at that anyway.

So I've fucked her up already.

If you ever read this baby girl, know I love you and your parents fucking you up is inevitable and you'll do the same for your children one day (if you have them) and just as my mum is very proud of me despite my many faults, mistakes and fuck ups, I too will always be looking for the things I can feel proud of, the things I will love about you because while we have the potential to do so many ruinous things in our lives, actually when you are a normal parent, a good parent, that's what you do. Love unconditionally.

Am I strong?

"You're so strong"
"You're one of the strongest people I know"
"I don't know how you do it."
and less complimentary versions
"Heart of stone"
"Ice queen"
"psychopath"

And yet when I cry, when I look weak, they don't like it. By 'they' I mean those that think they are close to me but find the truth of it all very uncomfortable. I suspect I remind them of their own weakness and mortality. They like it when I cope, when I am strong because it eases their own fear.

I don't feel strong, I haven't felt physically strong for quite some time. I really don't like it. But emotionally I carry on. But I am not strong, I'm just good at looking like I am. Perhaps that's the same thing.

Still waiting

Ah, it burns.
So much waiting, this is also part of the curse of VHL. There are so many things that VHL takes from us and our families. It takes my body away from me, it takes my peace of mind, it takes my ability to plan, it takes little pieces of my relationships too. It took my brother completely and is stealing most of my father. And now? It's nearly taken me.

I wonder if anyone can ever really know what it feels like. The fear and the pain, the frustration and anguish. All words that don't sum it up, don't come close. I had some almost blissful years, where I didn't worry, well not much and not as much as now.

I don't know what to do for the best, I don't remember how it felt, except that it was different to how I feel now.

I've led an interesting life, always have a story to tell, to always have a trump card on most stories. I feared being boring and now I hold my tongue, sometimes. And now I do this, get it out of me here.