It was also heart-breaking.
It was hard to see my son in it when only months prior he was whizzing around similar to a pint sized cyclone; wrecking anything in his path.
I didn’t appreciate that then, but now, now I’d give anything to see him do his, ‘cyclone’, impression again.
Hunter syndrome promised it would take his ability to walk; but we just weren’t ready; honestly, can anyone be?
Alas, hunter syndrome always keeps us on our toes - always teaching, always ensuring we don’t get too comfortable or too stable with the life we lead.
After getting used to the world as a wheelchair pusher, (that sounds funny, but I don’t really know how else to refer to myself), I had to accept that some places are just, ‘no go areas’, simply because my son now requires a chair to get out into the community.
It wasn’t easy but I learned ways around some of that by using slightly different methods to get where we needed to be.
(We tend to carry the chair down steep steps, or help Ethan out of it while my middle son runs across the field with it onto the path and comes back to help walk Ethan -- no one steals a wheelchair folks!)
I thought that was hard.
I thought that was one of the hardest part of using a wheelchair.
I was wrong.
Today I pushed Ethan around our estate, checking for slanted paths, dips in the footpath and corresponding slanted paths on the opposite side of the road.
Up until now I've been able to turn the chair and get it down off a steep curb.
In a few short months I won’t have that option.
Ethan is getting an electric wheelchair; which has huge benefits, not only for Ethan's comfort and safety but also for my already worn and torn back but with it comes an even bigger issue, one I overlooked when pushing a manual wheelchair.
I need dips, low curbs or slants whatever you want to call them.
I need them on both sides of the road.
I need to be able to get into our local park, which with Ethan's manual chair takes ten minutes as I've to walk to a certain part of the park but with the electric one, today I discovered I've to walk the whole way around, which will take us over 20 minutes.
The park by foot, is less than five minutes away.
This is just in our estate.
This is just one thing I've noticed today.
I'm panicking about taking Ethan and his electric chair into the ‘real’ world.
I don’t understand why dips in the paths don’t correspond with the opposite path across the road.
I don’t understand why there are steps and not ramps into parks.
I don’t understand why I've to walk the whole way around and back with my kids in order to go to a park which is on our doorstep.
This is something I did see when we first got Ethan's manual wheelchair; but as I became more comfortable with it, I eventually, didn’t need to look for the dips in the paths.
With an electric wheelchair the dips in the path are vital.
There is a man I see.
A local man.
I see him quite a lot at our local shop.
He too uses an electric wheelchair.
I've been looking out for him, with no luck thus far.
I want to ask him, how he finds the access around our estate.
How he manages the paths.
I only ever see him at the shop but my guess is he uses the roads. I've walked around the estate there really isn’t any other option, other than the road itself.
I've a toddler too.
A toddler, who thinks he's far older and wiser than he actually is. He has, like most toddlers, selective hearing.
I cannot imagine walking along the road with him and my middle son who gets distracted every few minutes by a story he wants to share with me or something he forgot to tell regarding a story he was previously telling me.
Confused? Yes me too. He confuses me, a lot.
Then there's Ethan.
Ethan loves nothing more than hitting things or people that pass him. I do worry what he could potentially do to a passing cyclist .
(I am dead serious, Ethan finds it relaxing to try to grab a cyclist, it’s normally his brother but when it’s not, it does make for quite an uncomfortable conversation )
I am painting a humorous picture here but the truth of it is, that these are all real things I have to manage daily when out and about but soon, soon Ethan will have his much needed electric chair.
And that is just our estate.
And yes, like with most things in life, until it affects you, you simply don’t see it. I am no different from other people, I didn't even notice these dips or lack of, until I needed them.
But shouldn’t the architect of such estates spot these kind of issues before these places are built?
Or must it always be those who live it having to fight to change it?
I will be contacting my local city council after I've done a full walk of the estate while using Ethan's manual chair.