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Like all parents to be, we both looked forward to seeing the developmental milestones of a child’s first few years.

Things didn’t exactly pan out as we’d expected – we’re still waiting for many of those. I also missed these with my older nephew and my niece due to distance; they simply lived too far away. In 2019 when my brother told me that they were having another baby, I was absolutely thrilled. And then, covid-19 hit.

Six weeks ago, in the very midst of the pandemic, my beautiful new nephew Elliot arrived safe and well. And it was love at first sight. He was the very image of Sam as a newborn; and it took me right back over 9 years to the day Sam arrived. Covid has meant that (like so many new aunties/uncles/grandparents), I am yet to actually meet little Elliot in person (although we’ve ‘chatted’ on the phone!).

I am ACHING to be able to give him a cuddle. But something I didn’t expect has hit me like a ton of bricks… as I’m watching baby Elliot grow, learn to smile/giggle, starting to support his own head and so on, I feel like I’ve been cheated out of experiencing these amazing early days all over again.

Elliot is almost 7 weeks old now, at this age I was starting to get an uneasy feeling that Sam wasn’t developing as quickly as his peers, a gnawing instinct that something wasn’t quite as it should be with my beautiful boy. I don’t actually know what a healthy baby around this age can do, or how it feels to cuddle them – Sam had virtually no head or body control due to his low muscle tone.

Sam was 12 weeks old when I become certain that something was amiss; two weeks later he had his first seizure.

As I watch baby Elliot growing, interacting with his brother and sister, and rapidly approaching the age when our world imploded, I can feel the anxiety rising. I’m starting to dream about Sam’s very early days, before epilepsy was part of our world but they are not pleasant dreams. I did not expect to feel this way at all.

On the contrary, I thought I’d come to terms with things. Now I realise that while I am at peace with our lives as they are, I am not at peace with the events of my boy’s first year. While I do not think now is the time to address those demons, being in the midst of a pandemic and all that, I think it might be time to start to heal at last.

Firefly Blog

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

Carolyn Voisey

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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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