Friday, 7 June 2013

On the Inside

My conifers are limp and it’s stressing me out.

No, that’s not a euphemism for something more exciting.  My conifers really are limp, and turning brown. In fact I’m fairly sure they have a disease.  I’m very concerned for their wellbeing.  Yes, conifers as is in the trees..keep up.

I can understand your confusion and I admit that horticulture has never featured particularly highly on my list of life ambitions. But all of a sudden I am finding myself Googling types of plant feed and going ‘ahhh’ at the decking in Homebase (yes  - I go to Homebase now.  I know, I know).  I admit that conifer death is a pretty ‘first world’ problem and I promise I won’t be making homemade pot pourri or buying scented drawer liners any time soon.  But you see all of a sudden the contents of our garden matter to me.  They matter because our little garden is part of our little house and right now, that is a very, very safe place to be.

Don’t get me wrong.  We go out.  A lot.  When I say ‘we’ and I say ‘go out a lot’, I mean me & Little J down the Children’s Centre over a sippy cup, not me and my husband putting the world to rights over a bottle of wine.  No, that belongs to days gone by (well, actually it’s just more of an at home activity). But home has come to mean far more than I ever thought it would.  I have never been the type to fantasise about wallpaper patterns or yern for a south facing garden.  Is that even the way it’s meant to face? I haven’t the foggiest.  In fact we have never even had a garden until now.  No, I was always more about area.  About living somewhere with a ‘vibe’, about travelling, living abroad.  Then it all changed.

I am still that person.  I point blank refuse to move to anywhere I class a ‘suburban’.  I have to live in an area that has its own feel and unique character.  But I admit, I didn’t really expect I would end up in a village in the countryside.  I didn’t expect home to mean so much.  But when you have a disabled child, the world can be quite a scary place and home becomes more than home.  Home is sanctuary.  Other bloggers have described it as a 'bubble'.  And as time goes on, so the bubble grows.

There is a point every day when Little J and I come home for the last time.  Usually after appointments, errands and therapeutic activities dressed up as ‘fun’ (taking your child swimming to do hydrotherapy activities just isn’t the same).  I shut the front door and sigh to let out the day.  That’s it.  We survived.  At home, none of it matters.  Disability doesn’t matter.  There are no developmental milestones here.  Rolling around the floor it totally acceptable.  Practically breaking the bed by sitting a highly amused child in the middle and jumping up and down whilst singing the theme tune to ‘Small Potatoes’ is just a daily activity (don’t ask).

I just need a chisel in a birthday cake...
Outside can be tough.  And it is only going to get tougher.  Before Little J, my outlook would have been completely the opposite.  But then he taught me this lesson early.  You see, Little J arrived in style.  There was the birth itself, which was erm..interesting. When I imagined the arrival of my son, I was thinking water birth, lavender incense and lots of snacks (the quality of the snacks was very important to me). I did not anticipate the triple hit of an oxygen mask to the face, a cannula in the hand and an injection to the leg, all as the alarms rang with increasing intensity.  But that’s a blog post in itself. 

Little J not only arrived in unexpected fashion, but he timed his arrival spectacularly.  When I was told I was expecting an early August baby, I worried about the heat.  But then, it’s the UK right?  We don’t get much of a summer.  Nope.  Little J decided to be born smack in the middle of a heat wave.  I had a four day labour (yes, you did read that right) on one of the hottest weeks of the year.   My memory of the postnatal ward is wafting anything in my face that I could find, pouring water pretty much over my head and revelling in the irony of being told that when we took Little J home we MUST always ensure that his room was kept at a cool 18 degrees.  Little J decided to arrive in the heat.  But, unbeknown to me as I recovered from an emergency c—section, the political temperature of the city we lived in was also going up.  You see, Little J was born in London and we brought him home on ‘that’ Saturday during the London riots.

That night, the city that we lived in, the city I was born and grew up in cracked and folded in on itself in a way I have never known.  It was beyond surprising, it was shocking.  Perhaps if I had been on this earth for longer I would have been less shocked.  The only comparison, although perhaps not in motive, is to the year I was born, when the Brixton riots took place. (Not the month I was born.  Yes, I know that would add some poetic symmetry to this story – but what can you do?)

The Saturday that we brought Little J home, I limped into our little flat, relieved to get the hell out of the sauna ward and put our little boy down in his Moses basket.  Then we turned on the TV.  And as the day turned to night, the city changed.  At one point, I wondered if it could ever go back.  Images of young people looting and rioting.  Stories of the police pulling back.  Borough after borough flashed across the screen.  At first it was surprising.  Then as time went on it started to get worrying.  You see, we lived right off a major high street.  On a small, dead end road.  In a ground floor flat.  We were seeing image after image of fires.  Smoke and newborns do not go together and the only way off our street was to head onto the High Road, where we would come face to face with all the shops that would be the most likely targets. We had moved from Ealing a few months earlier.  Suddenly there were images taken just yards from our old flat.  People in balaclavas spilling across the street.  The quirky little bar we used to love with its windows smashed in. Then the news that a man in Ealing had been beaten to death.  He was just trying to put out a fire.

The next morning I wondered if we were worrying unnecessarily.  But walking just a short distance from our flat I realised we were not.  Most of the shops did not open.  They stayed on lockdown with metal grills in place.  Police were lined outside the tube station, moving on anyone who stopped walking for too long.  Two men took umbrage to this and started heckling the police.  They were threatened with arrest instantly.  It was strange. A city on a knife edge.  London was pulling tighter like an elastic band.  I was praying it would slowly, gently release and thankfully, it did.   The riots didn’t come to our area. I think in part due to the shortage and quality of shops outside of the locked shopping centre (if you are looting Poundland, it’s an even sadder state of affairs). But the atmosphere that weekend was palatable.  Not the same city I had left when I went into hospital. 

But what was stranger was my response.  You see, I am generally not a nervy person.  I am not overly scared of the world, or of what may be around the next corner.  Don’t get me wrong, I don’t walk the streets swinging an IPod around my head, but I also don’t walk them with my head down terrified to meet anyone’s gaze either.  I did enough shifts in rough pubs in my early 20s to learn that the scariest of people generally aren’t and I know what situations to avoid and what alleys not to turn down.  But all of a sudden I didn’t really know how to feel.  All of a sudden I had this tiny person who was totally reliant.  It really didn’t matter what else I did. All of a sudden I was completely vulnerable.

As Little Js disabilities have become more apparent, this vulnerability grows. There is the emotionally vulnerability, when people look away a little too quickly.  Then there is the literal vulnerability, when I realise I can barely push his hefty wheelchair/pushchair hybrid up a slight incline, let alone move away from things at speed.  And so, the world becomes scarier.   An aggressive, ‘Can’t she make it be quiet?’ (‘it’ referring to my beautiful boy) on the train would once have resulted in a tirade on my part.  Not now.  Can’t risk it.

And so home means more and more.  Home is safe.  Home is warm.  Home is where nothing else matters.

But the outside matters too.  Outside is where we edge out.  Actually edge is an inaccurate term. We pretty much smash our way out and hope for the best.  We have our safe little outposts. A special needs groups here, a friendly coffee shop there. Then we have the things we have tried that haven’t gone so well.  The ‘stay and play’ sessions where people have just stared and even whispered, but not asked why my almost two year old still falls from sitting or suddenly starts to flail.   But we have to push even further outside and keep working, keep building.

But home will always be that extra bit special now.  It’s our place.  Our slightly crazy, often unconventional, but very happy place.  Even with a couple of dead trees in the garden.