The wheelchair

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.

Wheelchair. Wheelchair. Wheelchair.
It makes me sad.
And the reason is simple.
I don’t want him to be in a wheelchair.
That is all.

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.

The wheelchair.
You speak a thousand unspoken words about my boy that I never wanted said.

The wheelchair.
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.

The wheelchair.
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.

The wheelchair.
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.

The wheelchair.
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.

The wheelchair.
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.


20 Comments on The wheelchair

  1. Emma Martin
    April 3, 2014 at 1:44 pm (4 years ago)

    Oh Alison, I just love everything you write, even when it's as difficult as this for you. You describe how you feel so eloquently, and you really teach me something in every post I read. Your son is gorgeous, just gorgeous, and I can't believe for a second that anyone would look at him and be thinking anything but that xx

    Reply
  2. Judith Hurrell
    April 3, 2014 at 8:58 pm (4 years ago)

    Wow, what I post. So eloquently put and I can totally understand your reluctance to accept this new development. But it absolutely doesn't mean you or your son are 'giving up'. Please don't see it as a statement, it's just a way of moving forward. And like Emma says, your son is gorgeous and that's all people will be seeing. x

    Reply
  3. Alison Bloomer
    April 4, 2014 at 12:12 pm (4 years ago)

    Thank Emma – that is a lovely thing to say. I know I'll get over it soon and I'm already adjusting but I think it is good to get it down on paper to remember how you felt at the time. Worse things happen at sea and all that ha x

    Reply
  4. Alison Bloomer
    April 4, 2014 at 12:14 pm (4 years ago)

    Thanks Judith. I love the "a way of moving forward". You are so right. I'll be back worrying about the fact the toilet needs a paint again soon. Thanks for the lovely comments about Gabe. xxx

    Reply
  5. Hurrah For Gin
    April 4, 2014 at 2:04 pm (4 years ago)

    Alison, what a powerfully written post. I fully understand where you are coming from – not wanting to fully accept the hand you have been dealt. But it's just a step, once you have made it I'm sure it will all seem easier. It's good to get these feelings out there x

    Reply
  6. apulrang
    April 4, 2014 at 4:10 pm (4 years ago)

    Although it was painful to read, I admire your honesty in sharing this. I am not a parent so I can't really know what it is like to adjust as you are. However, I hope that you will come to a point where you see the wheelchair as a liberation for your son. Our language is full of phrases like "wheelchair bound" or "confined to a wheelchair" that reinforce the idea that a wheelchair is confining. What's confining, of course, is the physical inability to walk, in which situation, the wheelchair becomes freeing.

    Reply
  7. Anonymous
    April 5, 2014 at 1:44 am (4 years ago)

    Wheelchairs should be a symbol of activity and independence, NOT confinement. As apulrang stated above, the inability to walk is confining, not the device itself. It's good that you vented your feelings, but take a step back and look at the big picture.

    Reply
  8. Alison Bloomer
    April 5, 2014 at 7:06 am (4 years ago)

    Thank you for taking the time to comment and I have had a good look at your marvellous blog. I want to write more about this matter and I am sure that I will embrace it more positively as we move forward but I think it is important to be honest about how you feel in the beginning. I know I sound like a spoilt brat (and this should be all about Gabe) about not wanting a wheelchair in our life so thank you for your kind words despite this. As you say a wheelchair will empower Gabe and give him liberation and that alone is what we should focus on.

    Reply
  9. Alison Bloomer
    April 5, 2014 at 7:13 am (4 years ago)

    Thank you for commenting. I have surprised myself by not seeing the bigger picture on this when we have embraced so much without bitterness before now like hearing aids, feeding tubes, standing frames. I did want to document my feelings though because there must be other parents feeling this way right now and what is the point of writing a blog about a journey with a child with additional needs if you only highlight the stuff you are doing okay with. I hope I have not offended you as that was not my intention. Just because I feel like this now, doesn't mean I will feel this way about his wheelchair next month – you are so right it is a symbol of activity and independence.

    Reply
  10. Alison Bloomer
    April 5, 2014 at 7:15 am (4 years ago)

    Thank you. Absolutely it is just a step – then onwards.

    Reply
  11. Emily @ Words I Wheel By
    April 7, 2014 at 12:25 am (4 years ago)

    When I got my first wheelchair, way back when I was in 3rd grade, my mother had the hardest time accepting that I would transition to it. (By the way, my mother and I are both disabled.) I can certainly understand having such strong feelings against the chair at first, out of fear of the unknown perhaps, but I assure you it will bring such freedom to your son. This freedom far outweighs any obstacles you may face in the future. Our culture associates such negativity with using mobility aids and I urge you, for the sake of your son and your family, not to buy into those feelings.

    Reply
  12. Alison Bloomer
    April 7, 2014 at 11:03 am (4 years ago)

    Emily – thanks for commenting. Do you know what I already feel better about it having read some posts on Disability Thinking and now having had a look at your blog. It is about turning your conventional thinking about walking on its head. Although I still want Gabe to walk one day and we'll work hard helping him, if he doesn't then that is okay too. He is still my lovely Gabriel. Your blog is inspiring. Great work.

    Reply
  13. Coombe Mill
    April 7, 2014 at 12:28 pm (4 years ago)

    An insightful post so well written, never loose that lovely hope you have x #Whatsthestory

    Reply
  14. pixiedusk
    April 7, 2014 at 1:51 pm (4 years ago)

    I have this urge to hug you but you are far and I dont think those virtual hugs work anyways. But can you think that? That I am hugging you. I just want you to know that I dont know how it feels of course but stay strong. Wheelchair is like an end but maybe its just really the beginning. I hope I am making some sense. Thanks you for an honest blog entry. #whatsthestory

    Reply
  15. Charly Dove
    April 7, 2014 at 4:05 pm (4 years ago)

    Oh Alison what a heartfelt and passionate post beautifully written. This change must be so tough for you and as you say seem so final. That said it's the start of something new that will hopefully make life easier. It's just going to take time to adapt to the change. But you will do it, just keep the faith and continue writing about your journey #whatsthestory

    Reply
  16. Alison Bloomer
    April 8, 2014 at 8:51 pm (4 years ago)

    Thank you. Hope is still going strong :) x

    Reply
  17. Alison Bloomer
    April 8, 2014 at 8:52 pm (4 years ago)

    Thanks for the hug and much appreciated x

    Reply
  18. Alison Bloomer
    April 8, 2014 at 8:54 pm (4 years ago)

    He loves it as he is higher and doesn't have to concentrate on sitting – he looks like a little prince. Thank you for the lovely comment x

    Reply
  19. Wicked World of Lucas
    April 9, 2014 at 5:56 am (4 years ago)

    What an honest post and I hope you found writing it somewhat cathartic, and although I cannot begin to imagine how you are feeling, I agree when you say next week, you'll be feeling differently. All the very best to you and your family xx #whatsthestory

    Reply
  20. Anonymous
    May 5, 2015 at 10:39 am (3 years ago)

    I did want to document my feelings though because there must be other parents feeling this way right now and what is the point of writing a blog about a journey with a child with additional needs if you only highlight the stuff you are doing okay with. medline wheelchair

    Reply

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