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What if you’re not ok

What if you’re not ok

These days we frequently hear the phrase “it’s ok not to be okay”, and it’s often reassuring when you hear of others who may be having a tricky time, especially when so often social media only portrays the “perfect” images of life.

Life as a family with additional needs may feel some way off being perfect – wonderful, loving, rewarding? Yes. It can also be tiring, isolating and challenging.

It’s ok to not be ok, as you can take your time, get support, and find your way to bounce back.

But what if you can’t? I can’t help thinking about those people who are not ok.

I don’t mean as in having a bad day, or a tricky week. I mean really not ok. What if you have to make the heartbreaking decision to accept that you are not able to look after your child in the best way possible, either for their sake or yours?

I’m sure, like me, you know of a family, or families, who have fostered or adopted children, some with additional needs.

I’ve seen it for myself the love and warmth that these children get, and watch on in admiration at the adults who welcome them in to their home as their own.

I am sometimes in awe as to how they do it but thank goodness they do.

I can’t help but wonder what may be happening in the other side of the story, with the parent/s who no longer have their child with them.

As a mum of a little one with extra’s (cerebral palsy, tracheostomy, epilepsy, dystonia, the list goes on), I’ve heard the phrase “God only gives special needs children to special people”, and whilst the sentiment is nice, it just doesn’t sit right with me.

I get that’s a personal opinion, so feel free to disagree, but if that were truly the case, then no-one would struggle, no-one would have to admit that they aren’t actually ok.

The world of additional needs is one that I didn’t really know much about before I had Heidi, and it’s like a secret club that you suddenly find yourself in.

You might not have chosen to be part of it, but it’s pretty cool if you find the right people, and there is so much support out there.

I really hope that those parents who have had to say they aren’t ok are in their own club too, where, just like us, they aren’t judged, they can talk to people who “get it”, and they can find a way to their new ok, whatever that may be.

Firefly Blog

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

Sarah Kay

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An honest (and hopefully positive!) chat through the rollercoaster journey we have found ourselves on; hopefully to raise awareness of HIE and support others who may be on their own journey.

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