Saturday, 9 April 2016

A difficult day.

Me and mum 1979

When I was younger I thought that I really didn’t want to have children.

I worried about the responsibility, which stemmed from my sister’s chronic and often life threatening asthma. I worried about losing my child, which stemmed from my brother dying in 1978 when he was 17 and I worried about being a bad parent, which stemmed from my father’s violence.

I’ve never written about the last on the list before because it’s taken me a long time to step away from the shadow of secrecy and silence that domestic abuse engenders and because of the lingering fear that remained, until his death in December, made it impossible to detail.

All in all I was afraid that I wouldn’t be as good a mother as my mother had been or that I wasn’t capable to carry the sheer weight of responsibility.

However, when I discovered that Phil and I were going to have Lizzy I knew the decision was already made. I felt exactly the same, with Emily, three years later.

They were very happy accidents and as both of them arrived via the same accident, there is no issue in stating this as the fact that it is. It means that neither of our girls can perceive themselves to be less than the other, in terms of “strategic planning”.

I was the accident that my parents had and it didn’t make me feel insecure, but we’re all different.

Me about to get on a float and be a blackbird (aged 4)

I like to believe myself intelligent enough to have understood the process and chemical and anatomical chain reactions and combination of sex and babies.  Certain forms of contraception are demonstrably not 100% foolproof, except sterilisation and Phil and I, are total buffoons in many respects.

Anyway my point is that for me becoming a mother had never been my life’s dream and irrespective of quite a vocal group who believe it’s every “womb’s destiny” to house a foetus, I think this is for want of a better word, horseshit.

Every woman has bodily autonomy. No matter the male religious leaders, politicians and legislators encroaching every onwards on the march over women’s rights, my belief system is different. A choice is voluntary.

I’ll climb down from my soapbox now but I wanted to make that clear because from a cathartic standpoint, I need to detail why today is for me one of my most difficult.

Today is Emily’s birthday and we can’t be with her. This is the first birthday that this has ever happened and so since I’ve been awake since 5.30 this morning mulling over this fact, I needed to mind vomit my feelings onto the virtual page.

The reasons we can’t see her are very simple. Emily is going through a very difficult time at the moment.

The changes at school have set her already high anxiety to maximum and as she comes home on a Monday every week, an unexpected visit home today would cause her to want to come home every Saturday. This isn’t unreasonable in the case of other people but we are not in the position of being other people.

I had to accept that in 2012, when Emily’s needs and challenging behaviour meant she had to leave home to go to residential school. Caring for our girl requires much more than two people can do. No matter how much we love her we had no choice.

It’s no easier to accept now that it was then and it’s a truth that is imbued with other painful facts.

Emily wants to have a sleep over and she can’t. Emily wants to go on holiday with us and she can’t and Emily wants to come back home and she can’t.

She can’t and we can’t because Emily needs the support of fulltime carers 24 hours a day and will do for the rest of her life.

To offer a temporary overnight visit with no hope of a permanent return would be something that she wouldn’t understand. To offer it once and never again would be devastating to her.

Emily (aged 16)

She falls into the category of a small percentage of learning disabled people with her complex range of difficulties. Her behaviours that challenge can manifest quickly, sometimes with unforeseen origin and can be lengthy in duration often causing her to injure herself and others.

So for her to come home today would be impossible to do as a one off.

If it happens today it would have to happen every week. If it happened twice every week, Emily would understandably believe that it could transfer into everyday and from there into every night.

If we were to visit Emily she would think we were gong to take her home today and this would cause her great distress when we said it couldn’t.

Emily doesn’t know it’s her birthday. If she knew it was I would have found someway to see her. I would have built a gradual change into the visits and dealt with it in advance, but she doesn’t. She thinks it’s on Monday.

But I know.

This is the first time it’s happened.

In the past Emily has refused to celebrate her birthday, because the change was too overwhelming for her. I’d lead up to it with charts and indicators and there would be parties which Emily, like a female Jay Gatsby, would monitor from the safety of her room and participate in briefly, if at all.
The amazing "ABBA Again"

Last year for her 18th Birthday we had a party on her birthday with "ABBA Again" tribute act at the school.

This year Emily wants to return to a happier time in her life and have a party like she did when she was little; at home with the friends who she never sees anymore and she wants them to attend as the children they no longer are.

This is extraordinarily difficult to explain. There are some things that no one can mitigate or facilitate for Emily and it’s not her fault she can’t understand it..

There are many aspects of being Emily’s parents that are difficult, many facets of her life, which will forever be painful for her to experience and heartbreaking for us to witness. This is as nothing compared to the pain and torment she experiences.

My default setting of fear for my lovely girl will always be at maximum.

Today is another day when we can’t be with her. I can intellectualise it but it doesn’t cancel out the pain.

Phil and I can’t take the pain away from each other either, all we can do is distract ourselves and be together.

I couldn’t vocalise this to him because it was too big to talk about. My catharsis lies in being able to articulate it through writing it here.  So I did and he asked me to read it to him.

There is no one else in the world who can understand what we’re feeling and experiencing, other than the two of us because we’re her parents.

I offer this as with every blog that details our lives, in the hope that it may help others who are experiencing a pain like ours.

And to offer a window through which those, who don’t know, may choose to see.