Tuesday, September 21, 2010

Living with a Wheelchair

You may have noticed if you read my blog that my step-daughter, Snail, is in a wheelchair.  I thought I would write a little about that, and show some of our photos, a photo essay on living with a chair.  I've been Snail's stepmum since I started living with her when she was 4.  She's 11 now.  She lives half the time with us and half with her mother.  Snail has cerebral palsy and epilepsy caused by pachygyria.  She can't walk unaided, and needs a chair.  She has moderate to severe physical and intellectual disabilities.  She's also filled with joy, mischief, and awesomeness.

  Snail, early 2010.
We try our best as a family not to be limited by our wheelchair.  We've taken it to concerts, to inconvenient landmarks (the Sydney Opera House has only one lift in the backstage area for wheelchair access!), on bushwalks, to the beach, and on picnics.   After all, it's not our Snail's fault that so much of the world is hard for her to access!  It's our job to try and make this of as little impact on her and our family's experience as we can.

This is why we bought a bigger family car :D.

Our boot looked like this if we went anywhere - this was a picnic and walk with the chair.  We got an eight seater Kia Grand Carnival this year, and haven't looked back!  Now we can go shopping with just one car! 

One thing I do love is Lolly's total acceptance of the chair as part of her world.  From her earliest days, she has pushed it, played in it, climbed it, sat on Snail in it, and gone for whirlwind rides in it with her brother ("Smash, the wheelchair is NOT an extreme sport!").

Lolly pushing the chair, not yet 2!

Wheeeeee!!! Having a ride with Smash.
Wheelchairs can be poignant....

They can be sad....

They can get you places...

And it carries the bag!  :D
Or stop you from getting places...

They can be fun...
Wheeled adventures after school.

They can be a pain for your brother... :D

Smash pushing the chair up a hill on a bushwalk.
He stacked it just after I took this!  :p

DinnerDad walking Snail up the same hill.

They represent what is wrong.  Here is Snail having a seizure at the beach.

That was a hard day.  But to be honest about our experiences, I want to include the picture here.  It's why I took it at the time.  Because all of this is part of our lives.  We can't look away.  We live it every day.  [Here is a link to how to manage a seizure if the person is in a chair - from Epilepsy Australia.]

So, here's to Snail's chair.  We hate it and we love it.  We wish more than anything she didn't need it, but given that she does, we're so glad to have it.

Though where the hell do you put it when she's not in it!  lol

And my final word on wheelchairs, when you see a woman coming who is pushing a kid in a chair, and wearing a toddler on her back, get out of the way!  She needs the space more than you do.  :D 

When Lolly was a small babe -
feeding Snail at a concert with Lolly in the Ergo!


Sarah said...

Thank-you for sharing that! I've become quite familiar with the pros and cons of chairs in the past 13 years since my grandfather's first heart attack, but not thought about life with a chair for a growing girl and her family. I love how your blog opens my narrow little world up a bit more :)

And of course I'd move outta your way, and if I didn't I'd totally understand when you ran me down!!! ;P

Mama Possum said...

Thank you so much for sharing! I always enjoy reading about your family and glad this was included in. My DH suffers from mild physical CP and I sometimes forget that it affects him daily as I don't always see it. Timely reminder to see thigns through others eyes. :)

My Boys' Teacher said...

Great post!

Anonymous said...

That is a great post, thoroughly enjoyed reading about his aspect of your family life. I love that you make such a massive effort to make sure the chair doesnt limit you, and especially her, from doing the things you love. Surely only good things can come from that!

Stacey said...

Thanks for sharing, always good to have such insight! I think you are an amazing family :D!

Kestrel said...

What a fantastic, moving and erm, sod the English language, informative post - so many things I hadn't thought of. I had noticed in your other posts, but like Lolly, it just seemed so much just part of your lives. It would seem odd if it wasn't there now if you know what I mean.

Selene said...

Thanks everyone.

And would you believe I had to lose my temper at one man when pushing the chair and carrying a baby in the sling who didn't get out of my way. I freely admit I just lost it. :p

This wheelchair stuff can be a bit hard to write about, but I'm glad I did.

Louisa said...

It's great that you wrote about this and shared the photos too.

My cousin has cp and is in a wheelchair and ironically (/?) her name is Lolly! (Lauren actually)

LemonyRenee' said...

This is a marvelous post. I came by as a fellow-blogtoberfester . . . and you showed me something and expanded my heart a little. Thank you. And prayers and joy to your family.

Janis said...

What a thoughtful post. My daughter was in a wheelchair for a couple of years. I have the utmost.respect for what you deal with. Thanks for sharing all aspects.

Carol said...

You brought tears to my eyes. Thank you for saying it the way it is. This is so my life; I have a little one (3yrs) in a wheelchair with severe delays and intractable epilepsy....and a baby strapped to my back in the ergo.

Anonymous said...

I'm from Canada doing a search on living with a wheelchair as we just found out the my husband is going to end up in one in a year to 18 months.

I just wanted to say huge thanks for sharing! It gave me a lot to think about, some hints and tips that I hadn't thought of. An inside look at living with a wheelchair and making it work well.

And it gave my husband a 'purpose' in living with a wheelchair which he was missing. He just saw the down, but somehow, this post made his think about how to help places be more accessable (as much as possible) for him and others.

Thank you again for sharing.

Selene said...

Thanks everyone! I'm glad this post speaks to people.

@Janis, thanks so much, wheelchairs sure do make things interesting!

@ Carol, wow, that sounds VERY familiar! Is that a link to your blog? I love how blogging can connect us together, it definitely makes me feel less alone.

@ Anonymous, thanks so much for the kind words, and I do hope your own family's journey with a chair is as positive as possible. You might also like a blog called Bad Cripple, his take on wheelchair politics is eye opening :D

Lea said...

This is a great post! Thank you for sharing it.
PS Visiting from Blogtoberfest:)

Peter in Perth said...

Hi Selene, from a fellow aussie you make me proud! I am preparing an international campaign to help people avoid the terrible effects of Mobile / cell phone radiation and desperately need to photo of a girl in a wheelchair to get the message to all about the dangers to young children especially.
Am willing to pay for a pic or donate to a cause, just need to find someone like your beautiful daughter to waken people from their lack of care for our children.
If you are interested could you pls email me at mydirectsuccess@gmail.com?
Many thanks, Peter & Lynn

Anonymous said...

Thank-you for sharing your story. As I finally resign and hobble into a wheelchair at age 55yo your post humanizes disability.