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We know what it’s like

We know what it’s like

We know what it’s like. If anyone can do it, we can.

While the rest of the world shouts and panics about this new regime they are being forced to comply with, for most of us it is not new territory.

Unlike the majority, we have endured many similar situations throughout our children’s lives and can draw our strength for the next few months ahead.

We already know what it’s like to be banished to our homes because our children would not cope with what the world might throw at them.

We know what it’s like to have to be inventive, creative, resourceful and industrious.

We know what it’s like to watch the world through Facebook / Instagram and feel like The Outsiders.

We know what it’s like to totally re-evaluate friendships and relationships, when life throws a huge curve ball at you.

We know what it’s like to run around at midnight on an emergency hunt for medicines.

We know what it’s like for our children to be absent from school for weeks.

We know what it’s like for our children to ask questions to which we don’t have the answers.

We know what it’s like to have to lie and say ‘I’m ok’ when we are a long way from being ok.

We know what it’s like to feel incredibly vulnerable and susceptible, and to have the overwhelming urge to cocoon our children in a watertight environment.

We know what it’s like to have the opportunity to totally rethink our priorities in life.

We know what it’s like to need to make huge sacrifices and difficult decisions.

We know what it’s like to really appreciate our true friends, let go of the others, and show gratitude for the little things that mean so much.

We know what it’s like to have to deny our kids the world outside our own front door, because we know it’s for the best.

We know what it’s like to miss out on a whole summer of fun because of our child’s health issues.

We know what it’s like to have to distance ourselves from social situations.

We know what it’s like to have to isolate our family to keep them safe and healthy.

We know what it’s like to really learn the value in things when they are taken away from you.

We know what it’s like to stand alone for weeks, months, but still feel an overwhelming sense of togetherness.

We know we have come out the other side before, and we will do it again.

Firefly Blog

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

Emily Sutton

Meet Our Blogger

I was launched into the world of special needs on New Year's Eve 2012, on the birth of my son, Jenson. He is fabulous, sprightly and loving, and has redefined our lives. I am now a 'qualified by experience' therapist, clinician, secretary, taxi, PA, nurse, and in my spare time I am trying to be a good mummy. I am an auditor for the NHS and along with my husband run an accountancy business from home. It's a busy household but Jenson's extra genetic material seems to have given us all extra special powers!

View Emily’s Profile

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