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A Snapshot in Time

A Snapshot in Time

Social media, photos etc… all we’re seeing is one snapshot into someone’s life.

Filters may have been applied, in the case of children I can almost guarantee that the photo shown is the best out of around 200+ taken in burst mode, and that the beautifully clean room seen on a zoom video call to our friends may actually be the result of some strategic camera (and detritus) placement… I have spent many a frantic moment pre-video calls in lockdown sweeping paperwork/mess/toys/animals out of the camera shot so that my friends and colleague don’t see just what a pigsty my home has become.

The last few weeks can only be described as harrowing as Sam’s body went into overdrive; we still don’t have any answers.

More tests have been ordered, and while we wait our boy struggles with being unable to sleep, gut issues and distressing, aggressive abnormal movements. The impact on all of us has been savage. As a family we have clicked into Survival Mode, J and I now take it in turns to sleep so one of us is with Sam 24/7 to comfort him, ensure his safety and to just be there. The other manages everything else that needs doing.

We’ve been told by well-meaning folks that having a child with Sam’s high level of needs must be like having a newborn again. Believe me, this is nothing like having a newborn. That bit was a walk in the park. And yet, rudely, life as always carries on.

For all that he is going through hell, Sam is still a 9 year old who wants and needs to be entertained. He wants to play, to go places, and see people.

I cannot WAIT for him to get back to school (preferably before a second lockdown/half term please) because I know it will make him so very happy to see his friends – although we’re over half way through September, we still haven’t managed to get him well enough to attend.

His two wonderful teaching assistants have sent him video messages telling him how much they miss him, there aren’t enough words for how excited he was to get those videos!

At one of the hardest times we’ve ever experienced, those little gestures of love gave us all reason to smile.

And Sam does indeed still has his gorgeous cheeky smile; the photo above was taken in the midst of this maelstrom, and shows a happy child laughing as his Daddy tickled him. It may be just one snapshot in time, albeit one I wish desperately could last for longer, but it proves that there is always light even in the darkest of times.

When people ask how we are, how Sam is, most aren’t actually prepared to be told the reality; those who are, well, they’re the ones we keep close and treasure. Ultimately, all that matters is a little boy who has an infectious giggle, a smile that outshines the sun, and who reminds us of what is actually important every single day.

Firefly Blog

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

Carolyn Voisey

Meet Our Blogger

Mum to one incredible little dude, I work full time in higher education and have my own small business as a jewellery designer/creator. I love nothing more than having time with my family, being outside and with my animals (chickens, cats, dog..!).

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