Wednesday, 25 June 2014

you can't take the sky from me

I feel really weird about the fact that a friend's just-one-year-old has started walking this week. I loved the little video clip my friend posted on facebook of her tottering around, completely determined to make it across the carpet. But I am also having a small but perfectly formed pity party on the behalf of N, because she never even managed to walk like that, back before all of this became a three ring circus.

I don't want my friends to stop including me in those sort of moments of joy in their own lives and feel they have to self-censor, because that would be crap quite frankly, for both them and for me. I think it's probably a perfectly normal response and I don't want to blow it out of proportion. But it's still there.

I think that I have been more than usually introspective about it because this afternoon I spent a while talking to a chap called John Vorhaus, a philosopher from the Institute of Education, who is working on ideas around disability. He found my 'Welcome to fucking Holland' piece whilst researching the original 'Welcome to Holland' by Emily Perl Kingsley.

I was surprised because he seemed to think that I was voicing a very edgy and radical thing that I might get flack for. Essentially, his premise was that social constructs around disability mean that the first thing people say when asked how they are coping is 'I'm doing fine' and that carers are very reluctant to say that they are having an utterly, utterly crap time, are totally exhausted and are almost at cracking point.

My experience, though, is that there is an Inner and an Outer world.

The 'Inner World' is one of the people who understand how you are living. It is composed of people with similar lives that you meet at the hospice or the disabled parent support group; in the Consultant's waiting room or at the Wheelchair Skills Training Course. Even, as happened with us last weekend, riding a pony past where we were picnicking up on Exmoor. You may also have a few close friends that are also in your 'inner world', who you can vent to, who get it.

Your child's professionals may or may not get it, it depends on their experience, their empathy and how closely you work with them.

And then, there is everyone else. They are in the 'Outer World'. They are the people who you keep a smile in your pocket for*. When they ask how you are doing, you don't tell them that you were awake four times turning N in the night and then spent twenty minutes scrubbing feed off the carpet and had to bath and change her before you went out because she tried to help you hold the bolus and her co-ordination was so poor this morning that it went everywhere, so you were late taking L to school again and he was unsettled and didn't want to go and you were late getting back to pick N up to take her to her short-notice Orthotics appointment you got because her splints are so painful that she can't walk in them - and therefore at all - and so you didn't have time to park at the hospital and you fumbled getting N from the car seat to the wheelchair and ricked your back and she was grumpy and wouldn't let the Orthoticist look at her feet without you holding her whilst she screamed and ... so on.

You just get the smile out, paste it on and say 'Oh, we're fine! How about you?' Because you know that if you do start talking, you'll start crying with exhaustion; and they aren't close enough to you to have to deal with that.

I have to trust you a very great deal to let you in to my inner world  in real life; and I suspect that most other parent-carers are the same. On the one hand we are desperate for practical help. And on the other hand, we have that creeping fear that so many 'ordinary' parents have that we are not good enough for our children and that if we tell people how truly desperate we are feeling and how close to the edge we sometimes are, then our children will be taken away as a worst case; and that as a best case, people will think we are weak.

B and I are lucky. We are an effective tag-team. In fact, B is currently trying to get N to go to sleep; I have just done a forty minute shift, which included the usual giraffe-kissing. But on top of that I had to remove three flies from the room. She is terrified of flies and bees and becomes hysterical when they are in her bedroom. B is on shift two. I don't think there are any left in there; but she's in such a state now that that doesn't matter. If I was a single parent, as so many parents of disabled children are, I'd be hitting the gin by this point.

This life, this twilight zone that we are inhabiting, is dim and difficult for people outside to view. I think that that is part of the reason that our relationship with B's parents broke down so comprehensively. They simply didn't get it. Family quite often don't, as far as I can see. They have all their historical preconceptions about you to get over as well not inhabiting the Inner World themselves.

So I say, to you 'Outer World' people who may read my piece that actually, parents-carers of disabled children do talk about this sense of desperation, of grief, of mourning even, for the child and family that we could have had. We do talk about our sense of failure, of our exhaustion, of the sheer frustration of having to ring the County Council for the umpteenth time to chase up something that should have been so simple and so someone else's job. We talk about the anger and the desperation.

We just don't talk about it with you.

And it's not because we are deliberately excluding you - at least, that's not my reason**. It's just that it's such a huge thing to explain that it's simpler to paste on the smile and talk about other stuff - to smile at your baby's first steps along with you and share the joy of the simple ordinary thing that we didn't have ourselves. And in actual fact, I consider the friend who I am talking about - and who I hope is reading this - one of my Inner World. I feel privileged to be able to share that sort of stuff with her and I feel safe enough to open up in real life, rather than through the relative anonymity of the web.

Looking back at 'Welcome to fucking Holland' now, I can see that I was in a very dark place when I wrote it - I was at rock bottom. And since then, we have had a lot more support put in place, we have a routine visit to the hospice every eight weeks, we have respite care about to kick in fortnightly, school transport has finally got itself sorted out and N's new school is working out brilliantly for both children. I still feel like that occasionally; but I am in a much better place about it now. Retrospectively, I feel that it was a position I had to go through in order to come to terms with what is happening to us all.

If serenity is my aim, then Reinhold Niebuhr's prayer speaks for me:
God, grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference.
Reinhold Niebuhr (1892–1971)

My friend Emily's phrase, not mine.
**I think it's really important to state that this blog is my life, viewed through my rose-tinted spectacles. I can only speak for myself and voice my own experiences and feelings. YMMV, not every disabled family is the same, not every child is the same, not all friends are the same. Etc etc etc..


  1. well said.

    I had a friend who had a baby exactly a year after me. That baby started walking before mine - in fact mine didnt start until he was nearly 3. The friend didn't tell me.. when I noticed.. well I would, they pulled guilty faces and gently told me, yes, he started to walk. It was the beginning of the end of our friendship - not because my boy was disabled, but because she created that distance. Because she didn't know I would be pleased for her.
    I'm glad your friend knows you well enough to share the joy with you. And yes you are allowed to still find it hard, because you are mourning Italy always.

  2. Beautifully, poignantly written piece.

  3. This comment has been removed by the author.

  4. Honey, if you didn't have these mixed emotions you wouldn't be normal. We all have them about all sorts of situations, except for the majority of folk it's silly little things such as being pleased someone is having a couple of weeks off their very stressful job and managed to book a last minute flight to a beach but wishing you could just do the same and knowing you can't.

    BUT it's entirely understandable that you and B as well as F and P plus the many other families with children who have severe disabilities or terminal illnesses will have these moments when you just think why can't it be my child doing these things, reaching these milestones except your child has different milestones.

    I grew up in a household where due to long term chronic illness of both my parents, I had to grow up fast and make some very different life choices compared to my peers, those choices still affect my life now. I don't love my parents any less but sometimes I look back and wish things could have been different.

    The poem you posted always hits home as I struggle every day with it.

    If you need to go out into the black, we are all here to help xxxxxxx

  5. I generally think honesty is the best policy, however difficult and painful it can be, at least you know what you're dealing with. I Love that poem and agree it's certainly a fitting piece. Lastly and most of all thank you for honoring me by allowing me in to your *inner* circle. See you later