A couple of weeks ago I had a conversation with Jaxon’s physiotherapist.
It was a discussion that I wasn’t prepared for, nor expected. It sent my head into a spin because Jaxon is only just six months old.
Yet here I was, speaking about the possibility of needing wheelchair access when we move from our tiny one bedroom flat into somewhere bigger and more suitable.
It all began when I was explaining why our flat is still somewhat unorganised.
I shouldn’t have to explain myself yet sometimes I feel like I have no choice. I’m a typical Brit. I apologise for everything.
You’re stood in my way, you don’t hear when I say excuse me so I have to squeeze past – “Sorry, thanks.”
Not hearing what somebody says because they’re mumbling or speaking too quietly – “Sorry can you repeat that?”
Paying a £7 taxi fare with a £10 note and the driver asks if I have anything smaller – “Sorry let me check, sorry no I haven’t, sorry keep the change it’s fine.”
Walking into the canteen to get lunch when there’s a group of people talking – “Sorry, I’ll just grab my lunch and I’ll be out of your way, sorry.”
As it was this time, I was apologising for the pile of clean clothes piled up on the sofa that I’d not had chance to put away because I’d been so busy and had barely been at home.
That led to me explaining further that I was in the process of filling out the forms for us to be moved as our flat just isn’t suitable for three people, one of whom comes with a great deal of medical equipment.
“Will you be looking for a ground floor flat for wheelchair access etc?” I was asked.
I nodded, of course I was planning for all eventualities. I didn’t want to move into a place that may not be suitable leading to the possibility of us having to move again in a year or two.
My brain started throwing all of these unhelpful questions at me, unhelpful because we’ve had it drummed into us that the first year or two is very much a “wait and see” journey.
Of course, it’s hard, I desperately wish I had a crystal ball so I could see what the future holds.
Also unhelpful because I needed to concentrate on the therapy that she was doing to try and add to my ever-growing list of skills that I’ve had to learn since Jaxon was born.
I could feel it bubbling.
“Say nothing,” I told myself. “You won’t like the answer!”
I couldn’t help it. It was like an uncontrollable avalanche of word vomit pouring out of me.
“Are you saying that Jaxon will never walk?” I asked firmly, desperately trying to hide my anxiety and sadness as my fears for the future once again played out in my mind.
She looked at me, then looked down at Jaxon, then back up to me. I’m not sure if she was trying to weigh up how I would react to her answer but the delay in her response told me all I needed to know.
“It’s unlikely,” she said softly.
In that moment I felt an overwhelming sense of loss once again. Loss has been a common occurrence on this journey.
Now I was feeling the loss of never watching Jaxon play football, never seeing him run in his sports day, never seeing him walk down the aisle.
As my thoughts once again ran away with me, I was interrupted.
“I suppose it depends what you mean by walking” she said.
I tried to compose myself as I started to unravel and process the thoughts that were tied up in my mind.
“Will Jaxon be confined to a wheelchair?” “Will he ever have any independence?” “Will he be okay when I’m no longer around?”
The latter being at the forefront of my anxiety. I need to know that Jaxon will be okay when I’m no longer here, when I hopefully leave this life before him.
It’s a fear that plagues me. I worry so much that if I’m not here to care for him he will be alone. I can’t bear the thought that he won’t be okay if I’m not here.
“We never confine a child to a wheelchair” she told me. “We’re always working towards a goal, whatever that goal may be!”
I felt slightly better, there is always potential for improvement if we are working towards a new goal, however small or insignificant that goal may seem to the outside world, it will likely be huge to me.
But I struggled to hide my sadness and distress.
We talked about my anxieties and I realised that my thoughts are not all that unusual. Especially in situations like this.
When parents have children with complex needs they often worry about the future for their child if they were no longer here.
Their own mortality becomes a huge concern, more than ever before.
A parents list of hopes and dreams for their child is never ending, I’m sure that any parent would firstly want to know that their child will be okay when they’re no longer around.
That is not a guarantee for any parent, even less of a guarantee for me at this stage as well as many other parents who have children with additional needs.
“He may walk with a walker. Or he may learn to use a powered wheelchair” she told me.
I appreciate that like many other things in life, independence can look very different from one person to the next.
It may be running around the house, it may be walking fine on the flat but struggling with stairs, it may be using a wheelchair for long distances, it may be using a walker to make small journeys on foot, it may be getting around solely in a powered wheelchair.
When she left, I realised that I was no more aware of what Jaxon’s future will hold than before she arrived.
I may not know what his future looks like or what his full potential may be for many many years.
Nobody can answer these questions that race around my mind. It really is just “wait and see”.
It’s painful. It’s unpleasant. It’s torture. But Jaxon will be okay, regardless of the outcome.
Because I as his mother will do absolutely everything in my power to ensure that he will be okay, whatever okay looks like.
Now, always and forever.