Life without a raft

I’m a very friendly person who has never really mastered the art of making friends.

Gail Hanrahan has often written in her blogs about her shared “life raft”- her name for a group of close friends who all met when their various children attended the same school together. One of those “life raft” friends is Sara Ryan, mother of Connor Sparrowhawk (justiceforLB) and there is no doubt that through the years they have all had cause and need to cling to that raft and haul each other back inside when someone’s come very close to falling overboard.

Reading Gail’s recent blogs got me thinking again about the concept of the “life raft”, the purpose that it serves and what life is like without a raft.

In 2002 we left London and moved to Oxfordshire. We moved specifically so that we would be close to where Nico’s residential school. Until then we had driven up and down the motorway for years, a journey of an hour and a half each way (and closer to 3 hours on a Friday evening) twice a week and moving meant that we were just over 15 minutes away. The effect on the whole family was tremendous and completely worthwhile from everyone’s point of view.

But doing this meant that I left behind my London life – my friends, my work, my social life, my community – in fact everything and everyone who was familiar to me. But I did not leave behind a life raft.

All the years of living in London with Nico we never met anyone else who had a disabled child.   We knew no-one else in London who knew anyone who was disabled or had any kind of understanding of disability issues. Our circle of friends dwindled away after Nico was born, not because people are inherently heartless, but more I think because our lives became so different to theirs and it became more difficult to find the common ground that once bound us together.

Other parents of disabled children, like Gail and like Sara, often find their “life raft”; their circle of supportive friendship at the school gates, but when your child attends a specialist residential school there’s no immediate social connection with the other parents. The children there are drawn from every corner of the country and as you don’t live close to each other, you may not even arrived to collect and drop them off at the same time or even on the same day, there’s no shared chat at the school gates, get-together coffees and jolly glasses of wine.

Actually the school tried their very best to make up for this and one of the most outstanding (amongst a long, long catalogue of outstanding) things they did were the amount of social occasions they organised throughout the year. The whole point of these was to unite all parents, students and staff so these were always on either a Friday afternoon or Sunday afternoon when the school knew all the parents would be coming to collect or bring back the children. There was May pole dancing, Easter lunches, summer fete, fundraising teas, prize giving’s, Christmas pantos etc. We went to all of them and soon started seeing the same parents over and over again.

Parents of other children that Nico was particularly friendly with we always tried our best to talk to. But no matter how hard we tried we still only saw these parents three or four times a year at most and we weren’t there to chat, we were there for the Maypole dancing or the panto so often those chats would be no more than a rushed 20 minutes.

So we were never able to make real friends with other parents, never able to form any type of relationship – let alone a life raft and I’m very well aware that there are many, many other parents in our position.

There’s a kind of assumption that when you give birth to a disabled child, or when your child becomes disabled that you will automatically be handed a membership card for some invisible club. In the same way that people outside our world somehow imagine that on the day when you’re given your child’s diagnosis, you’re also handed a card listing exactly who is now going to help you and how you’re going to access that help (I wish)!

We made one attempt in the early years to access this kind of support when we attended a tea arranged by the “special need children’s parent group of West London” (well, they were called something like that – I forget the exact name). It was, in a word, dire. So dire that we actually sat next to each other on the sofa, with Nico between us and whispered to each other “how soon do you think we can go?” Everyone there seemed to be quite a bit older than us (although there are years between my children I was still in my 20s when I had Nico) and almost everyone dressed as if they had put on whatever fell out of their wardrobe when they opened the door. They literally came in, sat down and moaned. Moaned about their lives, their children (in front of them, which I found horrifying), their benefits, their hospital visits, their lack of sleep…….etc, etc. All of which I suppose I could have joined in with – or at least have added something to the list, but it simply didn’t occur to us in those days to bemoan our sad lot.

Maybe we were naïve, but we actually thought that we were lucky. We thought we had a lovely little boy and okay, so he didn’t sleep much (sleep deprivation might need a whole blog to itself in the future), he was as floppy as a rag doll and he didn’t seem to take much interest in the world around him – but hey, no way were we interested in spending the afternoon moaning about our awful lives. We left after an hour or so and no-one seemed to care. As we walked up the road we knew we’d never go there again.

So the years went by.

We never made any friends who had disabled children. But we did find friends, both in London and now in Oxfordshire. We just had to accept the compromise that they wanted to be friends with us but not necessarily with us as parents. There were and still are people with whom we can have a good time, even a great laugh, but we don’t talk much about Nico and if we do there’s often an unspoken awkwardness that follows. Friendships still founder. The list of people we remember fondly and still talk of is still growing today. A couple of staff from Nico’s old school still keep in touch, supporting us by their unfailing love for Nico. A lovely and caring work colleague who hardly knew Nico still remembers to mention him. A tiny number of people from our London days keep in touch, even if we only hear from some of them once a year.

In the end we have no life raft; no tight circle of close and supportive friends. Having no-one to invite saves a fortune on dinner parties. But what we do have is each other. The Media Naranja and me, still together after more than 32 years. Our precious daughter, Nico’s beloved sister and our daughter from another mother, Nico’s other sister. Together we stand strong for each other every day. We stand strong in our memories and in our shared love. We support each other in the bad times and remember the good times. Perhaps, after all, that is what a life raft is.

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Footprint

A very narrow foot

Long and thin,

Soft through lack of walking

A pinkie foot with dainty toes

 

I can feel it still

Weight in my hand

The stubborn little heel

Soft under my kiss

Tickly till the kick

Kick and laugh

Hold on tight

Laugh and kick

 

Out of your shoe

Long and thin

We placed your foot onto the sand

A foot print on the beach

 

The sand between your toes

You didn’t like

It made you squirm

We waited for the water

Kick and laugh

We watched the tide come in

 

Deleted your sand

Your barefoot footprint

Long and thin

Washed it away

Washed to the sea

 

Barefoot boy

I loved your foot

Your imprint

Is still here

It cannot be washed away