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6 Years

6 Years

There he was, rolling and kicking, utterly perfect.

I barely noticed the sonographers expression, didn’t really think anything of it when she took a little longer than usual scanning.

I did notice when she went out to ask a colleague to pop in for a moment.

And every instinct started pricking when they smiled kindly and asked us to wait in the reception area for a moment, baby’s growth had slowed and my Obs/gyn would need to review.

Long story short – his growth had stopped two weeks previously, and he needed to be born as soon as possible.

Fast forward to Friday 15th April, 8.02 am when our little man made his grand entrance, and demonstrated that his lungs were none the worse for his early arrival!

In a couple of days’ time, my tiny little boy (who is not so tiny these days) will be 6.

If we’d known back in 2011 what we were about to face I’m not sure if we’d have coped. The shock and sheer fear would have been crippling.

The past six years have been a rollercoaster, and we wouldn’t have missed it for the world… this wonderful child has defied his devastating prognosis; at 18 weeks of age we were told he had West Syndrome (infantile spasms).

A whirlwind of tests, all came back clear. He was a medical mystery but the seizures were still coming.

A kindly doctor gently explained his prognosis - IF he survived to his first birthday we were facing profound disabilities both physically and cognitively, he would be unable to interact or communicate.

As I screamed silently in my own head I was overwhelmed by fear for the future, as I held my tiny beautiful boy and prayed for a miracle.

Miracles come in all shapes and sizes. Sam was not one of the fortunate ones who escape infantile spasms (relatively) unscathed. He has huge challenges and yes, he is classed as profoundly disabled.

But every day, there are miracles… he regained his vision after the seizure activity took it at 1 year of age.

He communicates beautifully with sign language and the wonderful facial expressions he has (and a few choice hand gestures… I did not teach him those!).

He defies his prognosis daily. And he has shown us what love really is, and what is actually important.

Six years of seeing my child grow and develop, six years of love, laughter and wonderful memories.

Six years I feared we might not have. He is my hero and my greatest teacher.

So happy 6th birthday my little Superstar… thank you for all you are x

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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