Back to blog archive

Special Needs Parenting: My Life As It Was Meant To Be

Kerry Fender by Kerry Fender Additional Needs

Kerry Fender

Kerry Fender

Down’s Syndrome, my family and me – one mum’s account of family life with an extra chromosome.

But, though Down’s Syndrome brings many things to family life, it sadly does not bring immortality for parents and carers.

So I have to settle for remaining as healthy and active as I can for as long as possible.

Since a dip in the local fountain offers, not eternal youth, but only hypothermia and several nasty diseases, and virgin’s blood is in short supply these days, that means I have to resort to exercise.

Gym membership comes under the heading ‘complete waste of money’ in our household budget, and, to be honest, it is very likely that, left unsupervised in a room full of interesting-looking equipment, I would do some damage – if not to the equipment (what-the-hey, it’s insured) then to myself (I’m not – you can’t get the spare parts).

I try to make sure that I walk for at least thirty minutes, several days each week.

This is never pleasure walking, though: it always encompasses whatever errands I need to run that day.

While it’s a great way to burn a few calories and get the heart pumping (and it’s free) it doesn’t feel like enough.

So I recently decided to take up swimming.

It’s a great all-around workout that’s gentle on the joints and is also really calm and relaxing.

I am lucky enough to be able to make it to a public swim session on Thursday lunchtimes while Freddie is at school, so I get to actually swim, rather than just float around supervising kids.

Even going just once a week has got to be better than not going at all, right?

I’ve never been swimming on my own before, always with friends or my husband and children, so I felt a bit nervous the first time.

Two older ladies saw me hovering on the side, wondering if I’d got the right day because there was a notice up by the main pool declaring that it was reserved for swimming lessons.

They smiled so I asked them about the notice.

‘It’s only five to, they said, ‘they’ll take it down before twelve. We’re waiting for the training pool to open – it’s chilly in the big one.’

Perhaps the temperature in the main pool is a design feature intended to keep people moving.

But it was so long since I’d done ‘proper’ swimming that I had to stop every so often and cling to the side for a rest, and was acutely conscious that I might be getting in the way of more able swimmers.

I managed a few lengths in this bitty fashion, and was struggling back down to the shallow end debating how long I would have to stay in the pool to get value for money, when I saw one of the ladies I’d spoken to waving at me and beckoning from the entrance to the training pool, which was now open.

I couldn’t quite hear what she was saying, so I got out of the water and went over.

‘Why don’t you come in here, Duck, it’s warmer,’ she said, and added, in a conspiratorial tone, ‘because it’s for the over-50s’.

Cue an awkward moment of silence.

Over 50s?

Do I really look ‘over 50’?

Perhaps my puffing progress up and down the pool had been more laboured than I imagined.

Or perhaps it was time to admit that there is less than a year until I reach that milestone, and I’d be flattering myself to imagine that the years don’t show.

And it was warmer over here, and the pool smaller and shallower.

I would swim much more confidently knowing that I could stop anywhere and my feet would still reach the bottom.

Swallowing my pride was more palatable than swallowing freezing cold, chlorinated water every time I started to sink, so I got in.

As it turned out the lady was mistaken – it isn’t only the over-50s who use the training pool on a Thursday lunchtime.

I’m glad she was mistaken, she was meant to make that mistake: because if I’d stayed in the main pool I wouldn’t have seen four younger people gradually filter into the training pool that afternoon.

Four young adults with Down’s  Syndrome.

I am acquainted with many people who have children with Down’s Syndrome, but not many adults who have it.

It is not easy to imagine what Freddie will be like as an adult, what his life will be like, and I am grateful for any chink of light that can show us a glimpse of his future.

The first person, a young man, arrived with a companion, who might have been his Dad, or maybe a carer, I couldn’t tell – but the young man swam independently.

Then another young man and a young woman arrived. They too swam independently, and well – the young woman preferring to swim underwater, a graceful floral blur beneath the surface.

The fourth, a non-swimmer judging by her inflatable arm-bands, arrived with her carer, or perhaps we will call her a companion because she hugged the lady with such great delight when she managed to swim a few strokes unaided at the end of the session.

As I pootled up and down the pool it struck me how many times life has given me the clues and hints that I needed to see in order to believe that it is possible to raise a child with Down’s syndrome, and for that child to enjoy good quality of life: how many times life has gone out of its way to show me that I was always meant to be the mother of a child with Down’s Syndrome.

There was that day, years ago when a man with Down’s syndrome who used to work in my local McDonalds cleared my tray for me when he saw my hands were full.

The day when I was dashing around Sainsbury’s failing to find the jam, so I asked a member of staff who was stacking shelves and noticed only when she turned around to answer that she had Down’s.

Then there was the young man I used to see a couple of times a week on my way back from the school run, waiting outside the pub for his bus to the Day Centre; he’d greet me with a cheery ‘Hello’, and check the time with me if his bus was late.

And the little boy in my daughter’s nursery class – how glad I am that when she asked me why that little boy still wore nappies and still rode in a buggy I didn’t mention Down’s syndrome, I didn’t use that horrible phrase ‘something wrong’ (as has been subsequently used to my face); I simply said that some children take longer than others to learn new things, or for their muscles to get strong enough for them to walk for longer distances.

I don’t know how those words got into my mouth, I am not usually a tactful person, but I am so glad they did.

Years later, when my doctor talked to me about my ‘1-in-12 risk’ these were the images that came into my mind – real people, with real lives, whose everyday paths had crossed with mine. It would be untrue to say I was completely unafraid, but I was resolute – I knew it was perfectly possible to raise a child with Down’s Syndrome because I had seen empirical evidence of this with my own eyes.

I was meant to have all these experiences because Freddie’s life was meant to be. I was meant to be his mother. Our family life was meant to be this way.

It didn’t stop with Freddie’s birth, though. After a sleepless and profoundly emotional first night in our private cubicle at the hospital, I flicked on the breakfast news programme, looking for a sense of normality, a sign that the world was still turning on the same axis.

No sooner had the screen blared into life than the presenter announced that coming up later would be a report into newly released figures that suggested more people than ever, given a prenatal diagnosis of Down’s Syndrome, were choosing to continue with the pregnancy.

I don’t know how well the figures correlated with on-the-ground reality (you know the saying ‘Lies, damn lies, and statistics), but it was what I needed to hear, precisely when I needed to hear it.

Later my husband walked into the room bearing a newspaper – not something he would normally buy. He hadn’t opened the paper, so hadn’t seen the centre-spread article: ‘Loving Eddie Was Easy’, written by the father of a boy with Down’s Syndrome.

The timing could not have been more perfect.

It’s almost as though it was meant to be.


Other Articles You Might Enjoy ...

No results found