Joining, un-joining and re-joining the club

I’ve never been much of a “joiner”. I joined yoga for single class, ditto for Zumba.  I was a Guide for 2 weeks and liked the uniform which was paid for the day I left.  I’ve joined several gyms I’ve never been to and clubs I can barely remember and by now you’re getting the idea.  I’m rubbish at joining any kind of club.

But there are some clubs that you join whether you want to or not.  Some of them are clubs that no-one wants to join, but you find you’ve joined them anyway.

When Nico was diagnosed I joined a club I never knew existed.  I joined the club of “parents of disabled children” which is a large, well established club with many, many members.  Depending on the nature of your child’s disability, you could have a lot, or a little in common – but one thing was abundantly clear, you were in the club whether you liked it or not and the club could be incredibly useful in many ways. It was how we found a pre-school specialising in using Peto method, which helped to get Nico off to such a good start.  It was how we found a SEND specialist to help us through the long fight to get Nico into a really good school – in fact it was how we found the really good school.  It also reminded us we were not the only parents of a disabled child and that while our child might have been different to some, there were many others who he was very similar to.

From this new club came ideas about toys he would enjoy, ideas about feeding, sleeping, ideas for shops which catered to his needs and which welcomed us.  Ideas for holidays where not only did we not feel like freaks, we felt welcomed, wanted and most important of all – normal! 

When you become the parent of a child with disabilities in many ways that frames who you are too.  The defining thing about your parenting role is that you are a different sort of parent; you are a disability parent.  What you have to think about, plan for and work around are very different to the parents of non-disabled children.  As your life goes on, this soon becomes your normal and it doesn’t take very long before being the mum to a disabled child and having a disabled child in the family, becomes an essential part of who you are.  All the things you do; the various meetings, SEND battles, hospital visits, the huge amounts of letters, emails and records you keep, the amount of time you spend chasing up answers and following up appointments.  The school your child attends, the school activities, your relationship with the teachers and the other parents all gradually start to frame who you are and to frame the way you see yourself and see your place in the world.

Let’s not kid ourselves.  Bringing up a disabled child isn’t easy.  Often you’re exhausted, frustrated, sleep deprived, longing for a break from having to be so very, very responsible and grown up.  Being able to share those thoughts with others who understand can be helpful.  Sometimes you feel very low.  You need at the very least to share with someone who won’t judge you.  Then there are those little moments with your child, when just for a second you see a glimpse of the child inside them, the child they might have been.  That’s exceptionally painful.

Doctors told us Nico would probably live into his 50s, maybe longer.  But then he died at 23.  Long before his time and a needless, unnecessary death.  He shouldn’t have died and those in charge didn’t want to take any level of responsibility for what they had done.  And what they hadn’t done.  It was all so much more than what I’d dreaded beforehand, because before Nico died I really had no idea of the depth of prevarication, fabrication, invention and deceit that people who claim to care, can sink to. Coming to terms with that has been hard.

I had spent 23 years being the mum to a disabled child.  I spent 23 years being proud of my disabled child and proud of myself as the mother of a disabled child.  I spent 23 years being part of the disability rights movement. Now it seemed that overnight I wasn’t any of these things.  I had been dismissed from the club.  My membership card was torn up before my eyes and you could almost hear the sound of the club door being slammed and bolted behind me.  I was bereft.  I had only lost my golden boy and I had lost myself.  Who was I now? 

“I mourn not only the loss of my child but also the loss of the person I was”.  This was posted to me by a bereaved mother recently on Twitter and I found its truth astounding and moving.  As I read it, I realised just how many people like me are out there.  I realised I had joined another club.  Definitely a club that no-one wants to join and more than that, it’s a club that many parents of disabled children live in fear of having to join.

Recently I received a message on Twitter from the mum of a disabled child.  She said “you are my worst nightmare.  You represent what I fear most for me and for my child and yet there is part of me that feels sure that one day I will be you and my child will be your son”.   I really struggled to frame a decent reply.  I thought about parents from my circle whose child had died and the ones I hadn’t kept in touch with.

So my message to that mum and also to the mum still mourning both her child and the person that she was, is this: just because you don’t see your child anymore it doesn’t mean that they have gone.  They are there in every breathe you take, every day you live, every conversation you have and every person you support if they go through the same thing. 

You used to be in a club where you supported your child.  You gave them the strength and ability to live their lives well.  Now you are in a new club.  In this new club it is your child who gives you that strength and in turn, you then hand that strength and knowledge to new members of your club.