My step-daughter, Snail, is in a wheelchair. I’ve been Snail’s stepmum since I started living with her when she was 4, and she’s 11 now. 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.
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.
Wheelchairs can be poignant
They can be sad
They can get you places
Or stop you from getting places
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They can be fun
They can be a pain for your brother
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.
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.
wow. so powerful. thank you so much for sharing a slice of your life (and Snail’s!) with us.
Those little eyes peeking over the back of the chair are just awesome. Great photos, thanks for sharing them!
Yeah, if eyes are the window to the soul.. hers really has a mischevious side!
You sound like u r a wonderful stepmum. Thank you for sharing your story and those sweet pictures with us. Snail is adorable!
Very touching. Beautiful little “photo essay”.
Beautiful post. I was born with Cerebral Palsy, affecting my legs more severely than anything else. I’m lucky in that it was not so severe as it could have been, and – after having corrective surgery to rotate my hips and lengthen my hamstrings and lots of physical therapy – I can walk with a bit of a limp. Mom used to say to me, of CP-affected people, “They’re brilliant minds in bodies that don’t work.”
My heart goes out to you… And I bet Snail appreciates all of your efforts to make her life as wonderful as you possibly can, even with the chair. I know I’m grateful to my mom.
What a wonderful post. Thank you so much for sharing your family and your wonderful step daughter.
Thank you for sharing. This is a wonderful photo essay and a great reminder–life can be hard, but that doesn’t mean it can’t be sweet as well.
i speak from experience, pushing/pulling a wheelchair through sand is no easy task. thanks for sharing snails story. beautiful pictures from a a beautiful family. 🙂
Thank you for sharing this story — many blessings on you, Snail, and her wonder chair!
Thanks everyone! 😀
What a beautiful collection of photos! I stumbled across your blog because I was searching the internet for examples of family portraits that incorporate a child in a wheelchair. I’m doing a session soon with an amazing family and I want to make sure that I capture the joy of their family while still giving mom the “formal” portrait that she is hoping for. If you have any suggestions I would love to hear from you!
thank you x