Thursday, 9 October 2014

in need of a SHIELD

Dear Person-who-is-not-really-Phil-Coulson. I realise this is weird and slightly stalky and I do promise that I am not going to turn up in your kitchen with a rabbit in a pot. Or at least, not a pet rabbit in a pot. Maybe a skinned, jointed, lightly sautéed rabbit with some shallots and a few carrots and lardons. But definitely not a pet rabbit. Really. I promise.

I have a lot going on in my life at the moment and I have decided that obsessing about the Avengers and SHIELD is as good-a way as any to practice avoidance. Because, you know. Other people's issues are so much easier to deal with than your own. And large, scary monsters and over-large, competently characterised superheroes are about as far away from my own experience as can be at the moment.

I wish that all our issues could be solved with a robotic suit, or an arrow, or a hammer or a widow's bite. I wish that there could be some sort of logical progression of a story, clearly defined roles, an enormous dust-up and a happy ending. I wish that the professionals who I need to rely on to sort things out for me to get on with my job were all as quietly competent and as quick to find solutions as Coulson.

I wish there was a group of superheroes around me that would bail my arse out of the fire when I need it and who would help me get things straight regardless of the odds.

More than anything, I wish that coming mysteriously back from the dead against all the odds was really possible.

You see, my six year old daughter has a non-specific, progressive, neuromuscular condition. We have no diagnosis. She is fed by tube four times a day. She has calipers and a walking frame and an electric wheelchair. She's prone to respiratory infections. She wakes needing turning between three and six times every night. My husband and I haven't had a full night's sleep for months. We've got a lot of good medical professionals giving us support and helping. But when it boils down to it, B and I are on our own in the middle of the night, listening to her breath and wondering if she's going to keep going or stop.

I spend my days trying to juggle all the normal things that need doing as a parent of a young family, managing a small smallholding and dealing with my daughter's professionals. This week we have had an unsuccessful go-round with social services to try to get overnight respite and I have emails and phone calls coming out of my ears. Last month, I spent time trying to get her orthoses sorted so she could walk – she was off her feet for three months because the order was wrong. The month before, I spent trying to get school transport sorted to take her and her electric wheelchair to school and back.

Sometimes, I want out. I want to live in a tower with a multi-millionaire who can throw money and a brain the size of a planet at my issues and have magical screens that pop up and down with a gesture and know I have invincible people at my back to lean against regardless of what monsters are coming out of the walls.

Sometimes this is all too hard and an imaginary world is so much less painful than the real one.

So, Person-who-is-not-really-Phil-Coulson, I owe you thanks for the space you give me inside my own head when I put that DVD on. That possibility that actually, the people behind the superheroes are real. That the dramatis personae bleed through in to real life and somewhere there is a group of people who do actually have each others backs and give each other support and I can pretend – and I promise, I do known it's pretend – that I could have that too.


3 comments:

  1. To be fair, we do have a few superheroes on the team. It would be unfair to mention names in case I leave anyone out, but we know you know who you are.

    ReplyDelete
  2. Yes, it would be good, that superheroes team! Maybe they exist, but are overworked, and will get to you soon!

    ReplyDelete
  3. Frankly, it is you and B who are the Superheroes in this tale, the rest of us frequently stand in awe, and wish that we could be of some tangible help. xx

    ReplyDelete