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
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
ReplyDeleteThank you. Those tube fed toys are brilliant aren’t they? And yes, the siblings do learn to be so caring and understanding.
DeleteWow! Sean really is a Super Brother to Hugh. You have every right to be so proud xx
ReplyDeleteThank you
DeleteAn amazing brother for an amazing brother.
ReplyDeleteThank you
DeleteWhat an amazing post. You must be a bit torn, but extremely proud of your family. xxx #smallstepsAA
ReplyDeleteYes- I do feel torn but I am very proud of how they cope. Thank you
DeleteSuch 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
ReplyDeleteThank you Kate. And I’m sure you couldn’t say the wrong thing.
DeleteWhat a fabulous post, you and your boys sound amazing xx
ReplyDeleteThank you, that’s really kind.
DeleteWhat an amazing boy he is, and big brother - no wonder you're proud! <3
ReplyDeleteThank you, he really is a star.
Deletethis reminds me so much of my children my special needs hero is 5 and her siblings are 3 and 1 and I see so much of your story in my 3 year old already it breaks my heart because its not something you want your child to just have to accept, she happily plays in the hospital playroom as if she is at home and plays drs all the time and is starting to take an interest in how my daughter is fed i try to keep it as 'normal' as i can but what is normal? thank you for sharing x
ReplyDelete