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I want to start this post by sharing a quote from the brilliant actor and disability advocate, Sally Philips: 

“The siblings of special needs children are quite special. Absolutely accepting and totally loving, from birth, someone who is different mentally, and has a different way of seeing the world, is a wonderful trait. It's a trait I wish there was another way of getting, but there isn't.”

It was Sibs Day recently, a day created by the charity Sibs. We have started a tradition in our family where we celebrate it like mothers’ or fathers’ day. It starts with breakfast (pre-ordered the night before in bed) and for the last two years has been me and my older daughter heading into town, her directing the shopping trip, buying treats and having lunch together.

I am so pleased we started this tradition.

She knows her life is a little different to that of her friends and other more typical families but accepts it with such grace. It feels fitting for us to celebrate her role as a sibling to a disabled child, to show she is seen and, although it is a painful fact that our attention cannot be split evenly, that we recognise that and we care deeply about her. 

Of course she expresses (thank goodness) sibling anger and frustration frequently. This is a healthy part of any sibling relationship and I am glad she doesn’t feel she has to supress these emotions, just because her sister is disabled. When I check in with her, she reminds me that she knows of life no other way.

It’s what she has always had to live with.

Almost without us noticing, she has created her own coping mechanisms. Reading is a big one, Minecraft is another – places where she can escape to other worlds from the safety of our home.

She loves nothing more than her little sister’s fierce hugs, but accepts that sometimes they are not freely given. When they are however, and the two of them are giggling away, my heart soars. These little pockets of joy can lift me up for days.   

I also know she has benefited from opportunities that her friends won’t have had. We’ve never been on holiday abroad together and the idea of a family lunch out or cinema trip is absurd to us, but other, less typical experiences have helped her to grow. She has seen our resilience in the toughest of times and observed us being calm in a crisis; she has built relationships with the carers and enablers that are in our home daily; she’s learned to overcome her fear of hospitals and talk to the nurses and doctors.

She even helped us do a tube feed the other day and felt rightly proud.

Perhaps most profound of all is the experience of being totally accepting of someone who operates in an entirely different way from her. It's a huge privilege to watch my daughters grow alongside each other, in a life I could never have imagined.

Firefly Blog

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

Sharon F

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I'm Sharon, I have a daughter with epilepsy and a severe learning disability. I blog about our livewire life.

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