Fergus Finlay: My daughter Mandy knows life is precious — she celebrates every birthday like it's a big one 

The endless barriers and risks of illness faced by adults with Down syndrome are very strong reasons to celebrate every birthday

Mandy Finlay at age two.

I don’t know too many women who willingly broadcast their birthdays and their age to the world. But I do know one. She’s my eldest daughter, the eldest of four sisters. They’re all adults now, but they grew up as a pretty tight-knit group of kids. 

And their older sister, in a sense, was the glue that bound them together. I’ve always believed the reason my girls grew up with a strong social conscience was because of their older sister.

If you know me, or have ever read anything I’ve written, you’ll know that Mandy (that’s her name) grew up with Down syndrome. She doesn’t mind me writing about it because she has never allowed it to define her. 

In fact, I wrote here a while ago that Mandy rejects the term Down syndrome. She calls it Up syndrome, because she expects people to look up, not down, when her condition is mentioned. 

When she’s in the mood, she is one of the most sociable and outgoing people you will ever meet (and she usually is in the mood, unless she’s in the middle of a battle with her long-suffering parents).

Mandy Finlay celebrates her birthday this week. 

So at the weekend we celebrated Mandy’s 53rd birthday. And Emma’s. I don’t think I have permission to mention Emma’s age, but you’ll have figured out by now she’s a good bit younger than Mandy (Emma is the third sister). Emma has always sort of had the short end of the stick, because she has to share a birthday (a couple of days apart) with the birthday queen.

Everyone in our family, our extended family, our neighbourhood, the residential service where Mandy spends a few days each week, her club Lakers in Bray — everyone in her world, basically, is given at least three months’ notice of Mandy’s upcoming birthday. And frequent reminders. 

Nobody ever mentions Emma’s. She has always put up with it, but I’m certain, especially when she was younger, that it must have grated. She has family of her own now, of course, and they make a great fuss.

At least they’re both easy to buy for, although Emma probably sighs inwardly with the same present each year these days. It’s nearly always a voucher that will cover a decent night out, accompanied by a guarantee of kid minding on the night.

Mandy, oddly enough, is even easier. She has two great idols in her life at the minute (no, surprisingly, I‘m not one of them). The individual is Roman Reigns and, to our chagrin, the team is Leinster Rugby (what’s wrong with that woman?). 

She struggles with the retirement of Johnny Sexton and the departure of James Lowe, but her love for the club remains undimmed. Leinster tickets are easy to get, even if her father would infinitely prefer to be accompanying her to Thomond Park.

Roman Reigns is a bit trickier. You may have lived the sort of sheltered life that has prevented you from knowing a lot about Roman Reigns (lucky you). Well, he’s an American professional wrestler and the world champion in the WWE franchise. As such, he and his raucous fights are on YouTube a lot, and Mandy is addicted to him. 

He has completely replaced John Cena in her affections, because Cena retired as world champion and went into the movies. A sort of betrayal in Mandy’s world.

Mandy and her hero Roman Reigns in an AI-generated photo.

Getting hold of Roman Reigns merchandise is unreliable. But thanks to the glory of AI (it has some uses) we have discovered it’s possible to construct very realistic pictures of Mr Reigns and Mandy together, and to get them printed on tee shirts, fleeces, and the like. She has about four of them now, and the John Cena tee shirts are all consigned to the dustbin of history.

Me being me, I got a bit exasperated recently with the emphasis everyone has to put on Mandy’s birthday. The big ones with a zero in them I understand, but constant reminders of the ordinary ones wear me out. When I expressed by frustration to my lady wife, she looked at me with that expression she reserves for when I’m being especially thick and obtuse.

“You don’t get it, do you?” she said. “Everyone else in the family has had a long-term relationship, a wedding, children of their own. Mandy’s only special day is her birthday. Of course she’s going to broadcast it.” 

That hit me like a ton of bricks. Because it forced me to think about the things that Down syndrome had robbed from Mandy’s life. And is still robbing.

Mandy has been a bridesmaid — and a matron of honour — a lot, but never a bride. She has godchildren and nieces and nephews, and they love her and respect her (and she’s helped them to grow in their own awareness, just by being herself) but she’ll never have children of her own.

She’s had boyfriends over the years, but nothing that has developed beyond a really good friendship. One lad she dated heavily years ago seemed like the love of her life, but he couldn’t cope with the closeness she was looking for. 

Mandy wearing her favourite tee-shirt, with picture of her hero Roman Reigns.

She was devastated when he broke it off but told us later she had figured out what was wrong. “I was too much woman for him,” she said.

And Mandy has had loss in her life, loss that has caused her pain. Some of her closest friends, people she has grown up with, have slipped into dementia, and several of them have died. 

It’s a horribly cruel and unjust irony — never really recognised before — that people who must overcome endless barriers as they grow, because of the condition they were born with, are at much higher risk than the rest of us of acquiring Alzheimer’s in their 50s and 60s.

Mandy, in that sense, is lucky. Her assessments show no similar decline so far. She has a mother who takes her physical health and fitness and wellbeing extremely seriously. Frieda knows the low-level infections that can trouble people with Down syndrome, especially if care is neglectful, as it often is in any kind of institutionalised setting, can accumulate into a disaster in later life.

And Mandy grew up, and was encouraged to grow up, as independent as possible. She travels independently, she wears what she wants to wear — and mind yourself if you want to interfere with that — she sorts out her own electronics (phone, Fitbit, tablet), she makes friends easily, she manages a lot of her own outgoings (mostly, anyway!).

All of those things are what they call protective factors for people ageing with Down syndrome. And all of them, whether we know it or not, are very strong reasons to celebrate every birthday. 

So I know now that around April or May next year, the first hint will be dropped that August 11 is just around the corner. And there will be no chance of anyone in a 10-mile radius not knowing about it as it gets closer.

So keep going Mandy. Here’s to the 54th, and the 55th, and all the other birthdays still to come. The rest of us will just try to keep hiding our advancing years.