Down’s syndrome, Infantile spasms and leaving Dubai in a hurry…

In 2004, after 4 years of teaching in the UK, Adele and I decided to get married and teach abroad. We both had a bit of an itch to travel and see the world, so we applied for jobs in Dubai. Our grand plan was to teach there for four or five years, travel the world in the holidays and come back with some money in the bank and a great suntan. But it didn’t work out like that.

It started brightly – we were young and DINKY (double income, no kids yet), and was exciting to experience the luxury and opulence of Dubai. Initially, weekends were spent in the desert or at beach clubs, and evenings having dinner at one of the many luxurious hotels. The school experience was really interesting a real contrast to teaching in England.

But all that glitters is not gold and before long, the novelty faded and we found ourselves more at home in the souks, the local Lebanese restaurants or at BBQs with friends in the ex-pat community. We also started to get glimpses into some of the exploitation and prejudice on which the city is built, seeing workers from India and Sri Lanka being treated in ways that felt alien to us having grown up in the UK. It started to feel a bit hollow – like a city still trying to find its soul – and I remember England feeling like a very ‘green and pleasant land’ when we returned in the holidays.

And then along came Freddie – perhaps a bit earlier than was written in the life plan – and everything changed again.

One of my favourite pieces of writing is called ‘Welcome to Holland’ by Emily Perl Kingsley. It is written by the mother of a child with Down’s syndrome and describes the process of coming to terms with a child’s disability as getting on a plane expecting to go on holiday to Rome, but instead touching down to find out you have arrived in Holland. The author compares the experience of raising a child with a disability to the realisation and disappointment of not being able to see the Coliseum, gondolas in Venice and Michelangelo’s David, and learning to appreciate your new surroundings:

‘It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around … and you begin to notice that Holland has windmills and Holland has tulips. Holland even has Rembrandts.’

Our arrival in ‘Holland’ came unexpectedly in the delivery room at Kettering General Hospital. Freddie’s almond-shaped eyes and a mother’s instinct gave the game away to Adele, who called it within seconds of his birth. We’d had no idea. We returned to Dubai with our precious bundle and started a very different life to the one we’d planned. But despite the best intentions of everyone, illness and complications with Freddie meant that a premature return to the UK was inevitable.

‘If you spend your life mourning the fact that you didn’t get to Italy,  you may never be free to enjoy the very special,  the lovely things about Holland.’

Emily Perl Kingsley

In February 2006, Freddie was also diagnosed with a rare form of childhood epilepsy known as ‘infantile spasms’ or West’s Syndrome at the age 5 months. Although more prevalent in children with Down’s syndrome than the general population, the condition is still very rare and has a poor prognosis. One epilepsy website described it as ‘catastrophic’ at the time.

Adele had flown home to see a consultant in the UK and I was staying out for the last few weeks of term before planning to fly home at Easter for the holiday. It was the most bizarre school day of my life.

I teach a perfectly normal English lesson to Year 4 and walk them out for morning break. Being on playground duty in 28 degrees is no real hardship and I’m hiding behind my sunglasses enjoying the warmth when a message comes out. ‘Tom – you’d better come quickly. Adele’s on the phone.’ I know this is going to be difficult if Adele has called the school landline directly. Sure enough, she tells me through tears that Freddie is really unwell. They’re in Bradford Royal Infirmary and the doctors have decided that the next step is to put him on a ventilator. Before I have time to process what any of this really means, the head calls me into his office and says the following words, which I’ll never forget: ‘Tom, drive home and pack your bags. My driver will come and collect you from your apartment and take you to the airport. My PA is booking you a flight now.’

The deputy walks with me to my class, helps me to get my things and checks I am OK. She gives me a hug and wishes me all the best. The message is just what I need to hear – to go and put my family first, with no second thought about the logistics or implications which they will pick up later. The next eight hours are a blur as I race back to our apartment, throw an unsatisfactory collection of things in a case and am chauffeured at speed to Dubai airport in time to catch the afternoon flight to Manchester. By 10:00pm I am in a Bradford hospital, about to start three of the hardest weeks of my life, living on a hospital floor praying that the seizures will stop and we can get our baby boy back.

We never went back to Dubai. It was a tough decision that made itself in the end; but throughout it, our friends and colleagues were amazing – they even packed up our apartment to be shipped home and sold our car! The leadership team was fully supportive, recognising the difficulty of the situation, and made it clear that I had done the right thing.

I have often wondered how long my class were left out on the playground, waiting for me to collect them and if one day we might go back and take Freddie back with us to the sand. Over the years we have both felt like we have some unfinished business with the place.

To be continued…

2 Replies to “Down’s syndrome, Infantile spasms and leaving Dubai in a hurry…”

  1. Really touching Tom. I was introduced to Welcome to Holland recently when a friends daughter, after a number of attempts at ivf, finally got her twins only for them to be told that one very likely had Downs Syndrome and a serious heart defect, the other twin they could not be sure of until it was born. The twins were born extremely prematurely and it has been a tough and emotional ride for all of them. The honesty of Welcome to Holland makes you realise that it is ok to grieve for what you didn’t have and it doesn’t mean you don’t love what you were given instead. It’s still a gift, just not the one you were expecting. You and Adele do an amazing job and have a lovely family. I’m glad you got to go back. xx

    1. Thanks Carla. I think that poem has helped many people in situations like your friends. Thank you – we’re lucky to have people like you on #TeamFreddie.

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