Reflections at Sunset over Four Decades

additional needs, age, down syndrome, down's syndrome, equality, family, inclusion, love, pregnancy, special needs

I really envy all those people who view age as ‘just a number’. I have always known I would hate getting ‘old’. Even as a really small child of about 7 I used to be thankful for my youth. I can remember being in my parent’s garden and really trying to seize and savour moments because I knew once they were gone, they were gone. I can remember friends of my grandparents telling me to ‘make the most of it’ as a child – always getting the impression that there was something truly magical about being a child. Which, of course, there is. I also remember on my 18th birthday, clear as day, blowing out the candles on my Muppets birthday cake and my Dad saying to me, ‘it is just a number, I feel the same as I did when I was 18’. Old fart, I thought! Ironically, he was only a couple of years older than I am now.

I remember the year that all my friends turned 21. It is laughable now how grown up we were all pretending to be. Lots of black tie parties (and a trip to Chessington World of Adventures), a feeling I was on the cusp of being a proper grown up. It was an exciting time, full of unknown opportunity.

My 30th was a particularly notable affair. After almost a decade of being with someone who I felt was ‘good husband material’, someone way more sensible and mature than me, who I thought I would one day ‘grow into’, coupled with missed opportunities, I found myself celebrating at the pub, with some of my most favourite people as a singleton and a feeling I had lost my way.

I felt I should have settled down. I had ‘wasted’ the majority of my 20s dithering and lacking in my own confidence and convictions, over-thinking and under-reacting.

Funnily enough, Simon was at my 30th birthday party. I barely spoke to him. I knew him from work but thought he was too cool to speak to. His legendary lads holidays meant I felt a bit silly (and old) around him. But his flatmate Lucy had become a friend of mine and so he often came along to our social events. By August we were officially ‘going out’. Turns out he isn’t actually that cool after all (pahahhaha!)

Things seemed normal, not forced. Equal footing. My mum had always told me that when it was right it would just work. And it did. I wasn’t trying to grow into anything or banking a future husband, I wasn’t paranoid if he didn’t phone, or freaked out if he phoned me twice in one day, and I didn’t feel like a stalker if I phoned him.

We got married a few years later and I was pregnant and due before our first anniversary.

And then at the age of 34, right in the middle of my 30s, things changed beyond belief. I could not in my wildest dreams have imagined the decade I would have. My first born. Seb. The moment I had so looked forward to. Except it wasn’t at all what I was expecting. And, as followers of this page, most of you know the rest…

A diagnosis of Down’s syndrome. A flippant comment from the paediatrician about the age of my eggs that really smarted and kicked a girl when she was down. I didn’t realise it at the time, but it was the start of the most incredible journey I could never have imagined.

Good and bad. Rewarding and challenging. Highs and lows. Pride and pain.

A roller coaster that at times had no logic and felt personal. A decade of twists and turns and a faith it would make sense one day.

A transformation from Miss to Mrs. Becoming someone’s mum. Two ‘lost’ pregnancies. A brother for Seb. Speech therapy. A whole new world I knew nothing about. Genetic counselling. A steep learning curve. A realisation of my own ignorance. A campaign to represent ‘difference’. A piece of history. Front page of The Times. A trip to the House of Lords. The Special Olympics. BBC Breakfast. CNN. Sky. Every broadhseet and tabloid going. Tedx. An ambassadorial role with the Department of Work and Pensions. A meet and greet with Samantha Cameron at Number 10. The opportunity to meet other amazing parents. Care workers. People who are so inspiring. People that I otherwise would never have met – and that’s just off the top of my head!

So as I escaped to Watergate Bay to toast my 40th (without the kids but with a 37 week bump in tow) I couldn’t help but reflect on what has been the most remarkable decade of my life. I don’t see age as just a number. Sadly, I never will, and there will always be days when I wish I could freeze time or even go back, but that’s just the way I have always been. I see ‘big’ birthdays as milestones and it has been impossible not to reflect. But my reflection was happy and I felt comfortable with the new number in my life. Something I never thought would happen.

The moment I was dreading was replaced with amazement and contentment that, actually, I have achieved something, and if I left this earth tomorrow (I hope with all my being that doesn’t happen) then maybe I have made the teeniest, tiniest impact.

Maybe what has happened to me has made me feel this way. Or maybe I really have just grown up and finally feel comfortable in my own (wrinkly) skin.

2 thoughts on “Reflections at Sunset over Four Decades”

  1. Caroline Sim says:

    Caroline and Simon you have 3 beautiful children and it is such an inspiring joy to be able to see and read about you all. With love Caroline Sim.


  2. Thank you Caroline – and always carry such fond memories of coming to your welcoming house and eating your delicious vegetarian food and seeing your velvet cats! Kind words which I really appreciate xxxx


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