Last month we picked up a wheelchair for our little boy. At 19kg it is like lifting a heavy suitcase, but one that keeps bursting open on you. With a house full of equipment and disability living aids, you’d think I’d just welcome this into the jam-packed fold. But no, I haven’t.
You see I can’t get to grips with this new addition. It feels massive (it is literally huge) and life changing. Why? It is just a chair. A specialised pram no less.
I’ve surprised myself that I feel this way. It is not denial. That ship has long sailed.
It’s just that it feels a lot like admitting defeat and giving up.
This feels final. Like another door slammed shut.
This is one of the hardest posts I’ve written for a long time on this journey. I’ve started it so many times and shut it down quickly balking at the thought of penning the words as they sound spoilt, unfeeling and unconsidered. I know my initial thoughts are kneejerk and I will feel differently in a very short space of time.
You speak a thousand unspoken words about my boy that I never wanted said.
I see it as a badge. A banner over your head. Broken. Not quite right. Damaged.
I didn’t want this for you.
I had hoped and prayed that it wouldn’t be and longed for the future to be different.
I had wished we’d win the race and you’d get you on your feet long before this was your fate.
Despite all the hard work and physical therapy, the time has arrived.
Despite the months of waiting and long assessments, I am not ready for this.
Despite knowing it will protect your spine and your hips, it fills me with dread.
Despite not normally caring, I don’t want you (us) standing out amongst the crowd.
My family and friends have been kind and sympathetic, sensing the internal struggle.
My newest pals in the same boat assure me this initial feeling will pass and I’ll embrace this new stage.
It looks like for now you are here to stay.
It has surprised me how this one thing has left me slightly bitter and dejected.
Who would have thought we’d need our world to be access all areas.
Who knew this is where we were all headed.
Who can predict, who can say that just because a wheelchair is in our world today, that our hope has gone astray.
Who knows what lies ahead. We are not giving up. Not yet. No way.
|Gabe says: “Relax mum. This is the life fandango snoozing in the sun.
I’ve got the best wheels in town.”
*A few wheelchair users have stumbled across this post like Andrew Pulrang who writes the marvellous Disability Thinking blog. My intention in posting this was not to add to the sea of negative literature surrounding wheelchairs, but to highlight the journey of caring for a child who uses a wheelchair. A wheelchair was not what I hoped for when I envisioned Gabe’s future but I know I will feel differently next week, next month and next year. When Gabriel has his own voice I am sure he will share his own thoughts on the matter. I thank people like Andrew for trying to change the landscape for disabled people and championing ableism. People like him will make the world a better place for people like my child.