Accepting My Child Will Never Walk

I remember reading, a few years back, about someone with cancer feeling inadequate because they weren't running marathons or raising millions of pounds for charity. They were 'just', you know, getting on, turning up for chemo, hoping for the best. I've read too about people who've become depressed (understandably) as the cancer has taken hold; felt like giving up. But those aren't the stories that make the papers; people don't want to read about that. They want INSPIRATION. Defying the odds... That kind of thing. Not just ... Well you know ... The everyday kind of suffering.  
I wondered how it would feel to have cancer and read about the people running 26 miles when you're barely fit to get to the end of your bed. Do you think 'fair play', or do you feel guilty, or unworthy, or maybe that you're just not trying hard enough?
Mind over matter and all that!
Hugh's undiagnosed condition has left his muscles very floppy. He can't walk or si…

A Superhero for a Brother




When Sean was 2 he used to make his little Fireman Sam figures call the ambulance and go to the hospital. There was always someone needing oxygen in his little games. He’d see me giving his baby brother mouth to mouth so often it was completely normal for him. We called it a ‘special kiss ‘ to help Hugh breathe. Usually Sean would sit happily watching TV while his brother lay lifeless and I tried to call the ambulance in as calm a manner as possible. Sometimes he’d get jealous of the attention Hugh was getting and demand that it was his turn for a special kiss, unaware of the significance of his brother turning blue.



When Sean was 3, his brother was seriously ill. His seizures were at their worst and we could barely leave the house. Sean learnt not to expect me to be there in the morning, even if I’d tucked him in the night before. He never knew who would be picking him up from nursery or at what time. He didn’t make a fuss. He played happily in the playroom on the children’s ward, or in the gardens of the children’s hospice.

When Sean was 4 he brought a toy dog to school with a box of tubes and syringes. For his ‘show and tell’ he demonstrated to the class how to set up a tube feed. He made new friends, friends that hadn’t met his little brother before. And when he brought them to the house he demonstrated with pride how to use the ceiling track hoist and how you could angle the hospital profiling bed to make a slide.



When Sean was 5 he learnt how to do CPR. We’d organised training for family and Hugh’s carers and Sean wanted to learn. We let him. Have you ever had CPR training? I first had it as part of the Duke of Edinburgh award at secondary school where we had to imagine some hypothetical scenario involving a stranger. It’s different learning to do it and knowing you’ll have to use it, particularly when the child you’ll be resuscitating is sat in the room with you, smiling happily.

When Sean was 6, Hugh had seizures while I wasn’t there. Sean watched as the carer saved his brother’s life. He watched the police cars and ambulance rush off in a blur of blue lights and sirens, taking his brother away. Just weeks later Hugh stopped breathing in front of him again. From that point on Sean refused to sit on that spot on the settee in a superstitious effort to prevent Hugh’s seizures happening.



When Sean was 7, he celebrated both Mother’s Day and Father’s Day in hospital. Eating breakfast on the little pull out bed next to his brother, sharing chocolates with the nurses, climbing into the hospital bed so he and Hugh could present us with their homemade cards together. If Hugh wasn’t with us, he became anxious at the sound of ambulances in the distance, worried they were coming for his brother. If his brother was quiet, Sean would surreptitiously check he was still breathing.

When Sean was 8 he gave his brother mouth to mouth.


At just 8 years young, Sean has seen things no child should ever see, he has done things most adults have never had to do.
Things that would give you nightmares.
Things that do give me nightmares.

This isn’t the life I would have chosen for him. These aren’t the lessons I would have wanted him to learn so young.


Yet, this is the life we lead and I am immensely proud of how he handles it all with such courage, maturity, strength and resilience.

Sometimes being a brother is even better than being a superhero Marc Brown


Comments

  1. Wow, what an amazing duo you have! Mouth to mouth at 8, blimey. I’m always awe struck by siblings’ capacity for understanding & care from such a young age. I hope my two grow up to be as close. (We have tube fed dolls here too 😂) x

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    1. Thank you. Those tube fed toys are brilliant aren’t they? And yes, the siblings do learn to be so caring and understanding.

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  2. Wow! Sean really is a Super Brother to Hugh. You have every right to be so proud xx

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  3. An amazing brother for an amazing brother.

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  4. What an amazing post. You must be a bit torn, but extremely proud of your family. xxx #smallstepsAA

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    1. Yes- I do feel torn but I am very proud of how they cope. Thank you

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  5. Such a poignant post. I don't want to say the wrong words so I will leave it at that before some better words emerge. Your love shines out for both of them

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    1. Thank you Kate. And I’m sure you couldn’t say the wrong thing.

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  6. What a fabulous post, you and your boys sound amazing xx

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  7. What an amazing boy he is, and big brother - no wonder you're proud! <3

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