Wednesday, 11 September 2013

Presents and Promises

I’m unforgivably late with this post…

Zebra partied a little too hard..
You see, my little boy turned two last month.  Woop.  Cue party popper!  I mean, given where we have been at some points in this journey, that’s got to be firework worthy in and of itself.  Well, alright, it was barbeque worthy and that’s almost like a bonfire, just a bit wimpier.

So why have I taken so long to publically celebrate this milestone?  Well, birthdays are a bit of a funny one when you have a complex child like this boy of ours.  One the one hand, they are a lovely, exciting celebration of your child and all that they are.  On the other hand, they are a short, sharp elbow to the ribs as you miss a whole new load of ‘developmental milestones.’ And turning two comes with that extra little bite.  It’s a transition.  You no longer have a developmentally delayed baby.  You have a disabled child.

And so, as part of that, as I am sure every parent does, you think about previous years.  You wonder where the time has gone.  You marvel at how things have changed.   Although that’s not always an easy process with a developmentally and medically challenged child.

I, of course, cant help but think back to his birth.  I mean, that’s what the day’s about remembering right?  The clue’s in the name?  Hmm.  Funny one that.  Because I spend a lot of the time trying to let go of his birth.  Trying to convince myself that it just CAN’T be.  That with two MRIs showing no signs of brain damage, it just can’t.  The fact his oxygen levels dropped to the point my labour had to be halted with drugs is not the cause.  It just has to be a really, really unfortunate co-incidence.  But every now and that little woodpecker of doubt starts tap tapping away at logic until it gets itself into a frenzy.  But then logic gives it a swift right hook.  And logic is pretty damn hefty. Because I know it is deeply unlikely.   Firstly, Little J has minor muscular abnormalities that cannot be explained by a brain injury.  Then there is the glaringly obvious chicken and egg-ness of it all.  Bad births and neurological problems don’t necessarily follow that order.  Did the birth cause the problems, or did the pre-existing problems cause the bad birth?  Probably the latter in our case.

'You came first.' 'No, you came first.'
Well.. actually you're a rooster.'

But, as much as I have let go of the unlikely implications of that moment, his birthday will always remind me of the hours after he was born.  Of the implications that came from something else – from a realisation.  Despite ringing alarms and running footsteps, when Little J was born, when I finally had him in my arms, I wasn’t initially worried.  He wasn’t in special care, he wasn’t under constant monitoring.  In fact no one seemed remotely worried about him.   

But later.  When we were alone in the dark, as I fumbled for the light that the porters hadn’t bothered to place in reach, I knew.   As I gave up and tried to comfort him by the light from the corridor of the postnatal ward, I just felt it.  Something was wrong.  Very wrong.  It was the way he spasmed in my arms.  That jerk that would later be dismissed as a ‘strong moro reflex’.  No.  It seemed more than that.  It didn’t stop not matter how close I held him.  It was the way that he squirmed.  At times he seemed pained, panicked. I just had such an overwhelming feeling that all was not as it should be.  Given the number of drugs in my system and lack of sleep, it could be called an incorrect memory.  Except for one thing.  One thing I remember with crystal clarity.  Because I said it out loud.  I whispered it to him in the dark, trying not to wake the other mothers behind the flimsy blue curtains next to us.  I made him a promise.  I promised that no matter how bad it was, no matter how bad it got, we would always love him and always take care of him.  I had absolutely no idea what ‘it’ was.  And to be honest, in the bright light of the following day, I thought I had acted completely erratically.  It would be six months before I thought back to that promise.  Six months before I realised how very important it was.

How things had changed a year on from that day.  A year ago, when Little J turned one.  When I think back to it, I feel like I am outside looking in.  I don’t even recognise myself.  At that point, he wasn’t doing well.  We had been released from hospital because, quite frankly no one knew what else to do with us.  He was clinically stable, but having up to 40 ‘episodes’ per day of full body muscle flailing or dystonic muscle spasms.  He was developmentally stalling, but medics weren’t willing to call it a delay yet.  They were blaming long hospital stays and disruptive muscular problems. They were giving us hope of him catching up – we weren’t sure.  He was unpredictable.  Mr Google was not being kind to us.  We were on the cusp.  Constantly waiting for another test result.  Thinking this might be the one.  There might just be a way to make him better! 

I knew what was coming though.  What turning one would mean.  You see, Little J didn’t have developmental delay.  He essentially developmentally froze.  He hit every milestone until the age of six months.  Then the symptoms started and he just stopped developing.  Having read about genetic disorders like metabolic conditions, I know it’s not that unusual.  But it’s a tough one for doctors.  They are balancing the point of developmental intervention with potentially paranoid parents.  But when you are in that situation, twelve months old is a particularly cruel place to be.  It’s the tipping point.  It’s when a whole new load of milestones should be met.  When the doctors just can’t deny it any more.

And so, my little boy’s first birthday really didn’t go as it should.  We had a lovely party for him at the weekend, although not many people knew that we had barely made it out of hospital to be there.  We were still in the ‘keep in quiet and don’t scare people’ stage back then.  Guess this blog kinda blew that approach out of the water.  But his actual birthday.  The day that so many parents obsess over making PERFECT.  Well I screwed that right up.

We had escaped hospital the day before.  I was exhausted after several nights of open plan ward fun and had the additional joy of picking up a hospital grade cold.  But, we had pre-booked onto a course of fun baby activities.  For anyone who hasn’t had a baby, if you do, you will get bombarded with flyers for these.  Courses of weekly baby get togethers where you pay a stranger a fairly ridiculous amount of money to wave a bit of crinkly fabric and a puppet in your child’s face and call it ‘developmental.’  I had lost a fair bit of faith in this after quietly telling the woman in charge about Little J’s problems and wondering if she had developmental advice.  I mean, that was what this was all about right? Rabbit in headlights was an understatement. She looked like I had shone a spotlight on her, handed her a microphone and asked her to perform a rendition of Cats.  In French.  However, Little J LOVED this part of our week.  There were group songs and stories.  He would laugh his little head off non stop.  And normally I was fine to be there.

Until that day.  There was a point in the session that I knew was coming.  Every week, the activities would cease for a break to enable parents to ‘get to know each other.’  I knew everyone would look at us with sideways glances.  Parents with children under the age of one can be hideously competitive and we were fabulously reassuring to speak to.  I knew we would get the, ‘phew, my child is doing better than yours’ look.  I knew that the first question they would ask would be ‘how old is he?’ I had answered that so many times before.  Easy - eleven months.  Eleven months I could say.  I mean not being able to stay sitting up or weight bear at eleven months is almost justifiable right?  But to say that he was a year old - The age that parents associate with walking.   To say those words was to accept that my child had significant developmental problems.  The issue that doctors had spent the past few months denying and were about to backpeddle furiously on.  Having read about the conditions he was being tested for, the additional of developmental delay ramped up the severity level significantly.  To actually say the words ‘he’s one’ meant so much.  No, I just wasn’t ready to say those words.  I wasn’t even a fraction of the way to where I am now.  To acceptance.  So what did I do to my happy, laughing boy at his favourite event, on his first birthday?  I picked him up and walked out.

Don’t worry – I don’t lie awake at night thinking that he will one day be telling a psychiatrist about when his mother ruined his special day, caused those pesky rage issues and made him answer ‘a pickaxe’ to every card on the ink blot test.  No, I know he was just as happy getting endless guilt riddled cuddles in the coffee shop down the road.  I know he won’t remember anything about the day he turned one.  But I always will. It was the day I let fear and self-awareness take something away from us.  It won’t happen again.

And so, for so many reasons, birthdays come with a range of emotions.  I wasn’t really sure how to feel about Little J turning two to be honest.  Some of the little things about milestones can be the ones that get to you.  I mean when your child has been developmentally frozen for 18 months, gift buying is a tricky experience.  It mostly involves walking round the 6-12 months sections of shops going, ‘gave him that a year ago, not ready for that, keeps trying to eat that.’  And if you plan to go for a special needs toy, may I suggest a lottery ticket first?

So, I was pretty undecided on how to feel.  We had planned a barbeque (which was very fantastic, thank you to all who came.)  I had braced myself to feel a little stab of heartbreak seeing him tentatively sitting on the floor, not running around as most two year olds do.  But do you know what?  I felt, and still feel…absolutely fine. Bit of a shocker that to be honest.  I was expecting the words, ‘he’s two’, when answering the perplexed stranger peering into the buggy would bother me.  They don’t.  In fact, they make it easier.  Because they remove any element of doubt.

My son is disabled.  He really is.  There’s no denying it.  No one is going to produce a magic pill and make that go away.  And for the first time we got to celebrate a birthday for our boy.  Our real boy.  A birthday where every single person in the room knew exactly what was going on.  Where it was ok for him to be different.  A birthday where we weren’t watching his every move, focusing on him ‘catching up’.  Answering people’s questions with half-truths and non-committal maybes.  Anyone who came to both Little J’s first and second birthday will have noticed that there hasn’t been much of a change.  Taller, yes.  A sudden rush of blond curls, yes.  But developmentally?  Well, those same cushions are behind him in sitting.  He still keeps falling backwards. Still can’t get himself up.  The developmental changes are so small they are hard to even determine.  But take a look at his parents and you will see a pretty epic change. 

So despite me offering him dodgy presents and failing to re-fill the crisp bowls once, Little Js birthday was a very happy occasion. He had a lovely time and the fabulous gifts that he got from everyone else compensated for our efforts (apart from the plastic eggs we got him – totally inexplicable hit.)

I can’t claim that the little things will get better with the years.  I’m afraid I am not a very good party planner and I will probably always wander hopelessly around the same shops. I don’t have very much to give.  

Not much except a promise.  Now, then, always.