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Here’s to Siblings of Children with Disabilities

Here’s to Siblings of Children with Disabilities

It’s probably long overdue, but there have been a few things lately that have really illustrated to me just how much they deserve it.

Charlie has three incredible siblings.

Emily is sixteen, Dylan is eleven and Susannah is only eighteen months older than Charlie, and has just turned six.

Some days, the wide age/ability gaps make life really tricky.

For example, there doesn’t seem to be a single family outing that pleases everyone.

On the plus side, Charlie has the benefit of being surrounded by all ages and experiences every one of them in different ways.

Emily takes on a maternal role, Dylan is the consummate protective (and annoying) big brother, and Susannah is her best friend and is always telling me how well she understands what Charlie wants.

Here are just a few examples of their incredible support.

This morning, Charlie had what we affectionately refer to as a ‘poonami’ (rhymes with tsunami).

This is one step up from a ‘poosplosion’ and a horrible wake up call.

The trouble was, I needed to get on the road so Dylan would make it to his cello lesson on time.

Emily was halfway through doing her hair and makeup for a dance performance this morning, and still she offered to take Charlie into the shower and clean her up while I did the mad dash to school.

Yesterday, I was leaving the shops with the three younger children and went to return the trolley in the underground car park.

When I got back, Dylan had managed to get Charlie out of her chair and into her car seat as well as folding and stowing the chair in the boot.

Both Charlie and her chair are very heavy, and we have a van so there’s a bit lifting involved!

When I thanked him and let him know I was very impressed, he said “Mum, even though Charlie’s getting bigger, I think I’m getting stronger at the same time so it’s perfect!”

Over the weekend, Susannah came into our room early in the morning to tell us that Charlie was awake (they share a room).

She followed this up with “…but you can stay in bed for a bit because I’m going to read her some books.”

Then she climbed into bed beside Charlie and we heard her read Fox in Socks, The Elves and the Shoemaker, and Sleeping Beauty whilst Charlie giggled away.

It was really something beautiful to wake up to.

Special needs siblings have a harder time than most.

Their needs often come in second to the more pressing needs of their special brothers and sisters, and that can be tough for a young mind to wrap around.

They also feel the loss of the sister they’d hoped to have, just as we grieve for the child Charlie cannot be.

Despite this, my children love Charlie fiercely, and they celebrate her achievements with us every day.

They provide so much support for us, for each other and for Charlie.  They have to put up with parents who are often highly strung and stressed to the point of irritability (okay, that’s mostly me).

They drive us nuts, too - they bicker constantly, they’re demanding and self centred and all the things that normal children are… but they’re also something else.  They’re patient, kind, loving, strong, tolerant, helpful… I could go on, but for now I’ll just say thanks.

Thank you Emily, thank you Dylan, and thank you Susannah.

I don’t know how we’d do it without you.

 

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Fiona Russo

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I'm a busy mother of four, wife of one, and doctoral candidate to my ever-patient university colleagues. My passions in life are many, but there are never enough hours in the day!

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