The Wheelchair

Carys as a wheelchair angel in her school nativity play

The occupational therapist stuck his head through the physiotherapy room door. “Alison, can you bring Carys in for her wheelchair fitting on Thursday?”

It was a simple enough question, not even a completely unexpected one, but my reaction startled even myself.

I burst into tears. Noisy, heartfelt tears; the kind which make your nose run and don’t look pretty, like they do in the movies; tears over which I had no control, and no way of stopping. Tears which I didn’t then understand.

Because strapping Carys into a wheelchair felt like we were giving up on her; condemning her to a life without freedom and mobility; it was as good as saying “you can do as much physiotherapy as you like but it won’t make a difference…you will NEVER walk.”

That was nearly five years ago, but I can still clearly see the bemused expression on the face of that poor man, trapped as he was, half way between the minefield of my emotion, and the sanctity of the hall on the other side of that door, not knowing whether to step further into the dragon’s den or beat a hasty retreat.

Carys trying to get out of her wheelchair after getting off the school bus

Well, I thought to myself, if Carys is never going to ride a bike like other little girls her age, I’m going to make sure she has the prettiest wheelchair around. Of course, you don’t get gorgeous pink Barbie wheelchairs. Instead, I chose a bright orange chassis, big pink and white daisies for her wheels. I was even more delighted when the small front wheels lit up and flashed as they rolled. When I saw how well designed the seat cushion was for long term sitting, how comfortable and upright she was in it, I knew it was the right decision.

Our first outing was to pick the boys up from school. I felt so self conscious, pushing Carys down to the school gate in her bright new wheelchair. And didn’t everyone stare? There was no avoiding the garish orange metalwork, the fuck-off daisies, the flashing wheels. The message somehow translated not as ‘wheelchairs can be pretty too’ but more as ‘watch out, world, here I come!’.

It wasn’t what I had intended. The cute little girl nobody noticed in the buggy because she looked just like a baby when she was actually nearly 5 years old, had graduated into the poor little disabled girl who couldn’t walk, and wait a minute…yes, looks like she can’t talk either, and…what’s that huge scar on her forehead, and…is that neckerchief a fashion statement or actually a dribbler?

We went back to the buggy. Although Carys didn’t seem to mind the attention, I couldn’t handle it. Strange things happened when we went out with the wheelchair.

Like the time I went to the cash point on the way home from collecting Carys from school. I took my money, shoved it into my purse, and almost collided with a woman standing too close behind me. “What’s wrong with her legs?” she demanded over the top of Carys’s head.

My first reaction was to say,”Nothing. What’s wrong with your face?”

Thankfully, I managed to scrape together enough self control to bite that one back.

I almost said,”Why don’t you ask her?” I hate it when people ignore those who are wheelchair bound and talk to their carer as if they are somehow intellectually inferior, or as if they don’t exist. But I knew the point I was making could backfire on me massively; Carys actually couldn’t reply for herself, or even understand.

So while I seethed and boiled at the rudeness and nosiness, I resorted to the polite friendly truth. “There’s nothing actually physically wrong with her legs that any doctor can determine. Carys has a rare syndrome called Cardiofaciocutaneous Syndrome, and along with that, global development delays. She can’t walk, and we don’t know if she ever will.”

“Oh.” She sniffed, and went back to her shopping. Had she hoped for something more dramatic, more tragic? I pushed Carys back to the car, wondering how much trouble I’d get in if I accidentally ‘lost’ the wheelchair in a ditch on the way home. What gives someone the right to approach a stranger, and demand the details of their affliction? Isn’t that our own personal business?

Carys practising walking with her walker

The wheelchair didn’t see the light of day for a while, until we decided on a family outing, with dog, to Loughcrew Gardens. As we were going to be out all day, I reluctantly decided that Carys would be more comfortable in the wheelchair.

We hadn’t been there five minutes before another woman approached us. “Do you mind me asking why your little girl is in a wheelchair?” she asked me politely.

Here we go, I thought, but dutifully opened my mouth to begin the explanation. You can imagine my surprise and horror when she burst into tears. “It’s so unfair, what some children have to go through,” she sobbed. And then she poured out her heart to me. A year previously, she had lost her five year old son in a tragic car accident.

“I’ve just had my favourite chocolate desert and it was gooooooood!”

I stood and listened for two hours. Eventually, she managed to pull herself together, apologised, and we parted. I don’t know how she felt; I hope it helped her, somehow, to confide in a stranger. But my lovely family day out was ruined. I nearly lost one of my sons as a baby, but he pulled through. Carys was never meant to be born alive, but is with us still against all the odds. It is quite likely that she is with us on borrowed time; both Conor and I accept that she will most likely go before we do. I couldn’t get that poor woman out of my mind, and although the sky was sunny, black clouds followed me for the rest of the day. Because of that bloody wheelchair. Had Carys been in her buggy, she wouldn’t have stood out as different, probably wouldn’t have triggered such a reaction in a stranger.

Yep…we have a love /hate relationship, me and that damn wheelchair.

A Very Important Note: After publishing this, I was thinking about that first outing to the school gate. It was very uncomfortable for me at the time, but I feel I must point out that the stares weren’t malicious. Curious, maybe; dazzled and bemused, perhaps, lol! But a lot of my friends were there, and they have always been supportive and caring of my experiences with Carys. They know that if I’m not around for a while, its either because I’m coping with Carys, or trying to finish a book! They never give me a hard time about it. Where would we be without our friends?

34 Comments on “The Wheelchair

  1. Just discovered your blog. You have a beautiful daughter who looks like she has a lot of spirit. I love the way you write about your experiences, so much honesty and a sprinkling of humour. It is not on the same level but my daughter was born with a cleft lip and palate. I have spent the last 12 years watching her endure painful mouth operations and I have had people stare, giggle and ask me what is wrong with her face. To me she is beautiful and amazing. Thank you for your inspiring and fab blog!

    Liked by 1 person

    • Thank you. It’s amazing how thoughtless and unkind people can be. It never ceases to amaze me. But also there are very genuine and lovely people out there too. Sadly, it’s the ones who hurt us most that we tend to remember. Your daughter sounds courageous and strong, and so do you. Guess you’ve had no choice, huh? Love to you both, I know how it feels. Xxx

      Liked by 2 people

      • Some people are so rude.
        Even if it is curiosity, there are ways of asking a question.
        Also, why do people feel that they have the right to pry into your life?

        You wouldn’t knock on someone’s door and say ‘I’m curious – I noticed your bedroom light was on until 3 am, can you tell me why?’. So why do people think they can stop you in the street when they don’t even know you?
        You must have to be so strong to not want to slap people sometimes. :0)
        I think the wheelchair looked fabulous (why don’t they do Barbie versions?).

        Liked by 1 person

        • I dont know! Actually, I think you can get all sorts of cool stuff for them, but Carys’s was provided by the Health Service and there is a limited choice. But its fine. Carys doesn’t give 2 hoots! 😁 You really made me laugh, Kate! I don’t know why people feel they have a right to know, but they do. And for all the mean ones, there are dozens more kind and lovely people, it’s just that they give you freedom and leave you alone, so the nosy nasty ones stand out, I’m afraid. 😞

          Liked by 1 person

          • Glad it made you chuckle! As you say, there are really nice, genuinely interested people out there (a lot more than the other type of person).
            I’m sure Carys is more worried about it being comfortable rather than bells and whistles, but it’s a shame you can’t have both (if you want them).
            I did love the wheels though. There is a baby pink Beetle car that I see on the way to work sometimes that has big white daisies across it like Carys’s wheelchair and it always makes me smile.
            :0)

            Like

        • Also, I should add that I am happy to talk about Carys to people all night, if they are genuinely interested in learning about her syndrome, or what it’s like to have special needs. So I don’t mind people asking about her at all, but you’re quite right about the way it’s done. There’s no excuse for rudeness.

          Liked by 1 person

  2. Poignant, Ali. People just are so inept, even the well-intentioned. Carys has a marvelous smile. I hope that wheelchair takes her to some magical places πŸ™‚ ❀

    Liked by 1 person

  3. You write about ‘the wheelchair’ with honesty, humor, and of course a bit of pain and sadness. Your daughter’s smile is BEAUTIFUL. She obviously has a beautiful soul, and hopefully people can learn to see beyond the wheelchair and the disability and instead see the light within her. I have a wonderful friend (who was a student of mine, first) who is a quadriplegic because of cerebral palsy. Now, at 25, he can laugh at the way some people look at him in an unbelievably rude way. And I love laughing with him, AT them! πŸ™‚

    Liked by 1 person

    • Thank you! Your friend has transcended the pain… that’s a good place to be. I’m still getting there. As for Carys, as far as we can tell, she is either unaware of her differences, or doesnt care 2 hoots for them, or for peoples reactions!

      Like

  4. Pingback: Today it’s all about ME! | aliisaacstoryteller

  5. I know these are older posts. I just sat down for a second and started reading. Hugs to you. I am so glad that you can write about all of this. You are honestly helping so many other moms and dads. You are an inspiration. So many people struggle to be honest. Thank you.

    Like

    • I started writing them just to ‘get it all out of my system’ really. But also, I knew how much it it helped me to read other people’s stories, and know that I wasn’t alone, because you really do feel so alone at times dont you? Well, I know I do. So now I share them here.

      Like

  6. While my son’s Scottish Rite brace was being manufactured, he had to learn to walk with a pair of wooden crutches, to take the weight off his bad hip joint. He was only 4 years old when he was diagnosed, and small for his age (his “bone age” was a year behind his chronological age), so the crutches had had to be modified, too. To help him accept the crutches, I suggested that he decorate them. We drew two crayon faces on stiff paper, trimmed them to fit, and glued them to the crutches. His name is Thomas William, so one crutch became Tom and the other one, Bill. Adults who saw him would blurt out, “Those are the smallest crutches I’ve ever seen!” He got to be very good and fast with them. When he was in his Scottish Rite brace, he learned to ride a bicycle, further astonishing people.

    He was still in the brace when he started school, and a teenaged girl who lived across the road would stand by, like a protective older sister, until he got good at climbing on and off the school bus. But most older children would just stare and laugh, and say, “what’s the matter with him?”. The small children, however, were curious but sympathetic; they would invariably ask, softly, “Oh, how did you hurt your leg?”

    Like

    • Your son sounds like an amazing child! Does he still have the same attitude today?

      My second son was born with Hirschsprungs disease. he was very ill as a baby and had lots of surgery, an illeostomy etc.Despite all the pain and suffering, he was always smiling. A nurse said to me then that children who face such challenges go one way or the other; they are either super cheerful and positive in their outlook, or become introverted and depressed. It seems like both our sons chose the positive route. I’m not sure I would have done, or been so brave.

      He’s 10 now, and his attitude is that he loves life, nothing gets him down, he will have a go at anything and take every opportunity that presents itself to him.

      I remember one particular football match where his team lost the final. Afterwards, they all trooped out of the changing room, thoroughly miserable, some of them even crying. Malachy spotted me waiting, held up a bag of crisps in one hand, a bottle of pop in the other and yelled happily, “Wahaaay!” Nothing gets him down, lol!

      Like

      • He was in the brace 24 hours a day for several years, which helped his bones have an excellent recovery (although he would always be at risk for pain and arthritis). He was considered to be academically gifted, but with the onset of puberty, he did develop depression. I gave the mental health service a photo from the time he was in the brace, which helped them tailor the plan of care. After secondary school, he joined the Marines, and successfully served out his enlistment. He is raising his own family, now.

        So, your son may hit a rough patch in a few years. I know you’ll keep a sharp eye on him!

        Like

        • Thanks for the warning Christine! I will indeed watch out for it. At the moment hes very confident in his skin and fascinated by his scars and what happened to him as a baby. As he gets older he may think more deeply about it and worry about the impact it might have for raising a family of his own. Hes a glass half full kind of chap, just like his dad, so hopefully hell get through unscathed. Thanks for sharing your story and all the best to you and your son.

          Like

  7. Unfortunately, people suck, but Carys is so lucky to have such a good Mama. She’s a cutie pie! πŸ˜€ I have a son who is autistic and I fought with his teachers for years who said it doesn’t “look like something’s wrong” with him (even though there is a huge developmental delay that’s undeniable if you’re around him for long). People can seem cruel though I think they are just probably rudely nosy. Sadly, they probably have no idea of the stress it is to raise a special child. Good luck to you and your family! xoxo

    Like

    • Hi Rachel! Thanks for your comment. It must have been so hard for you, fighting tbe battle against his teachers to get him tbe services he needed. I am currently fighting resistance from Carys’s physiotherapist. I have disagreed with her decision on AFO’s and also think Carys needs another type of walker. Now the woman wont return my calls or speak to me. Why? Im not questioning her expertise but at the end of the day she spends half an hour a fortnight with my daughter…Im with her every day. I may not be an expert in physiotherapy but I AM an expert in my daughter lol! Why do they have to make a dicficult situation even harder just for the sake of proffessional pride? Sorry, Im ranting now lol! In response to your comment, ignorance is just as cruel and hard to cope with as rudeness, which is why I write about mine and Carys’s experiences. I hope things are better now for you and your son. Ali x

      Like

    • Thank you Annie…you’re very kind to say that. I’m glad you enjoyed it. The Wheelchair story had been building up inside me for a long time so I guess by the time it finally spilled into print it really came from the heart!

      Like

  8. When I look at a wheelchair, I see freedom. Most look at a buggy (stroller) and see a baby. I don’t know if your daughter can push herself or not but I view the wheelchair as a sign that you acknowledge and respect that she is no longer a baby.

    From the point of view of someone in a chair I can relate to the stares. Your daughter may very well be their first encounter with a disabled person. Curiousity is normal when we face the unknown. I am glad you understand their stares were not meant to be rude. When I was little and someone stared at me I would just stick out my tongue. As an adult, that’s not as acceptable or cute. So, now, I just stare them down until they become so uncomfortable they look away. The ultimate staring contest and I win. It could have also been jealousy for her fabulous wheelchair. I know I am!

    I often have people ask me why I’m in a wheelchair. It is at times annoying. But, I try to take the opportunity to educate people and take away the fear of the disabled, or at least lessen the fear. I’ve never felt their questions were crossing the line or too personal. You can’t learn if you don’t ask and who better to ask about a disability than someone who is disabled or knows someone who is.

    Your feelings about your daughter being ignored and speaking to you instead is totally understandable. Every time someone does this to me I mentally throat chop them – it doesn’t make the situation better but it makes me feel good. Whoever is with me usually says “I’m not a mind reader, ask her” which embarrased the person – win! I find this much more satisfying than if I tongue lash them. Once in a while I’ll pipe up and say “I’m not a dog. I don’t bark. I can actually speak” – I can be snarky when I want to.

    I know your daughter can’t speak for herself but, may I suggest, the next time someone ignores her, simply say “My daughter cannot speak but it’s rude of you not to at least acknowledge her” The next disabled person may benefit from it.

    I hope your journey becomes easier and you hang in there. Thank you for sharing it. I firmly believe we all, even the disabled, have a purpose in life… I like to believe your daughter’s -through your voice- may be to educate others about disability and how to treat those who are.

    Like

    • Hi! Thanks for your beautiful reply…you fair brought a tear to my eye! I hate that society has forced you to adopt these ‘defence mechanisms’, but I adore and admire your spirit!

      Yes, not all curiosity is a bad thing, I totally agree with you. But where Carys is concerned, I guess I have become a mite over-sensitive; as far as I can ascertain, Carys is oblivious to other people’s attitudes, or else she is so loving and forgiving and generous in spirit that it doesn’t hurt her, so it shouldn’t really bother me so much. It’s me who has the problem, it’s a lesson I have to learn.

      I also agree that it is down to people like you, Carys and me to show others what it is like to be disabled, and to help society revise its attitude. Its already far better than it was even a generation ago,for which I am so grateful, but there is still, and always will be, I guess, room for improvement. We are fortunate that we have the internet, and WordPress to help us get our message out.

      Like

  9. Carys and you make a formidable team Ali I’m glad you’re on my side πŸ™‚
    I was able to picture you having that Winston Churchill moment (”Nothing. What’s wrong with your face?”) LOL
    PS, try thinking of the wheelchair letting Carys be ‘All grown up’ like any other child her age, instead of being a ‘Baby in a buggy’ xxx

    Like

    • Thanks Chris! Thinking of Carys as ‘grown up’ is difficult when you’re still changing nappies, feeding her, doing everything for her etc, and she just looks so like a baby still lol! Its a mothers fear of letting go…you are absolutely right, of course, I will expand on that in another blog post no doubt, but the wheelchair story has been bursting to get out of me for a long time, lol!

      Like

      • You are very brave to have blogged about it Ali! I hope it helped ease the pressure inside you and that it makes others apply a bit more consideration before making remarks of any sort (read activate brain, let it warm up and assess situations properly BEFORE activating tongue). πŸ˜€

        Like

        • Its not about bravery, its about sanity! Writing is an outlet which ultimately makes me a nicer person to be around, and a better mother lol!

          I am happy to explain anything about Carys to anyone who wants to know…it all leads to understanding and acceptance. But there’s no excuse for rudeness, is there?

          You’ve just reminded me of a story where I was ‘abused’ by another disabled person with regard to parking in disabled parking spots…oooh, I must think of a blog post for that one, lol! You’ll like it!

          Like

      • Appalling (with a silent ‘e’ to say ape LOL. πŸ˜€

        BTW, my 5 Stars rating and review for ‘The Four Treasures of Eirean’ are now on Goodreads, Amazon.co.uk, Amazon.com and my FB Timeline (if you’d like to share it onto you FB page (because FB won’t let me share it there) – I tried to post it onto Barnes & Noble as well, but they seem to have changed their system and I can’t do it now (meanies!)

        Like

Please feel free to join in the conversation...

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s