Language
  • English
  • French
  • German
  • Italian
  • Portuguese
  • Spanish
  • Swedish
Back to Firefly Blog

The Loneliness of a Special Needs Sibling

The Loneliness of a Special Needs Sibling

It’s just after 6:30pm and her brother has just had a seizure in the bath.

While her mum pulls him out and dries him her dad rushes upstairs to help.

And she was left alone.

It’s 11am at the retail park and suddenly her brother has disappeared.

Her mum shouts his name and runs to the lift knowing her brother loves them, while her dad runs to the door to make sure her brother hasn’t ran into the car park.

And she was left alone again.

It’s 2:30pm on a Tuesday afternoon and she is with mum and her brother at yet another hospital appointment.

Her brother’s height is taken, his weight measured and the eye specialist looks into her brother’s eyes while talking to mum in words she can’t understand.

And it feels like she isn’t there at all, even though she is.

Life feels all about her brother.

She can only go places if HE is well enough, if HE can cope with it, if there is provision for disabled children.

She hears others at school talk about zoos, trampoline parks and ice-skating rinks but she has never experienced those.

She could tell them about tonic clonic seizures, communicating with a non verbal brother or what an occupational therapist does.

She knows that isn’t what anyone wants to hear about though.

So she just stays quiet.

She does her own thing.

She finds her own way of coping.

She is the epitome of resilience, the definition of bravery, the personification of inner strength.

But she’s lonely.

So very lonely.

She’s typical of so many siblings lost in the shadows while the limelight shines on the sick sibling, the disabled brother, or the struggling sister.

Expected to carry on with homework while her brother screams, to try and watch TV without complaining while her brother has a meltdown, to still sleep while her brother bangs toys throughout the night because he sees no need for sleep.

These are the siblings whose loneliness we don’t like to see.

We don’t like to admit that disability affects the siblings as much, if not more, than the child who is diagnosed.

It makes us uncomfortable to think we have caused an innocent child to experience mental pain while we care for the physical pain of another child.

We hope beyond hope that things will settle and one day we will ‘make it up to them’ for the times we couldn’t make their school play because their brother was sick or in hospital. But that day never seems to come.

So she just carries on.

Until one day she says ‘it feels like I am invisible sometimes.’

Then you realise the utter loneliness, the repeated rejection she had felt and the fear she experiences daily.

You vow to change things but nothing, nothing, will take away her loneliness.

I promise you siblings, you are NOT invisible.

You are the real hero’s in all this.

You are the ones who’s smile keeps everyone going, whose humour brings life and whose strength inspires.

You may feel lonely but you are never alone.

I promise you so many other siblings understand and they have been where you are.

You got the raw deal here and I’m sorry.

Firefly Blog

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

Miriam Gwynne

Meet Our Blogger

I am 41 and from Scotland. I have nine year old twins who both have complex needs and a husband who has autism, depression and nf1. I read, write, help out in my daughter’s school and have a strong faith. I laugh, cry and over share!

View Miriam’s Profile

Become a Firefly Blogger

Would you like to write for Firefly? Join our blogger network of parents, therapists and professionals.

Get In Touch

Become a subscriber today

Join over 40,000 subscribers to our weekly newsletter with insightful articles just when you need them.

Join Mailing List

By using our site you agree to our use of cookies. Click here for more info.

Accept & Close

No Interest if paid in full in 4 months on

Purchases on £99+

UK Customers only. Subject to credit approval. See terms below

Paypal Credit

Pay now or pay over time with PayPal Credit. Just use PayPal Credit in PayPal checkout.

Subject to credit approval.

Purchases of £99+:

No Interest if paid in full in 4 months on purchases of £99 or more.

  • A minimum monthly payment is required and may or may not pay off the promotional purchase by the end of the 4-month period.
  • No interest will be charged on the purchase if you pay it off in full within 4 months. If you do not, interest will be charged on the purchase from the purchase date at the Purchase APR applicable to your account.
  • Any remaining balance due after the 4-month promotional period or any transactions under £99 will be charged interest at 19.9% p.a. (variable).

Purchases of £98.99 or less:

Buy now and pay over time with PayPal Credit when you spend £98.99 or less.

  • If you pay your balance in full each month by the payment due date that is on your statement, you can avoid paying interest.
  • Or, make minimum monthly payments, or any additional amount of your choosing, until you've paid off your balance according to your standard account terms. Please note, interest charges may apply.
  • We'll send you email reminders when your payments are due. You can also keep track of your account and view your statements online at any time.

About PayPal Credit

  • PayPal Credit is a reusable credit line available on purchases at thousands of stores that accept PayPal. It's also available for purchases on eBay and exclusively at thousands of other online stores. Plus, it comes with the same security and flexibility you trust from PayPal.
  • In order to maintain the 0% offer, you need to keep up monthly repayments and stay within your credit limit. Credit subject to status. Terms and conditions apply. UK residents only.

Please wait...