Sweet Saraya – The Blog » A mum with a camera, keeping her loved ones in the frame.

Sonrisas contra el tiempo (Smile against time).


A Smile. It’s that moment when a look of joy or happiness or amusement spreads across the face of someone and the corners of their mouths turn upwards in that unmistakable display of emotion that is recognisable to all.

Time. It’s the indefinite continued progress of existence and events in the past, present, and future regarded as a whole.

But how do you smile when time is against you, when you know that time is running out? How do you smile and be thankful when you know your child is dying, and you are faced with making memories as fast as possible before it’s too late?

You just do. You smile because every single moment is too precious to waste. You smile so that when the end is near, you will have so many happy memories of those special times spent laughing and smiling.

Time is against my son, and that means time is against me as well. In fact, it’s against my whole family. Whereas most families assume they will have many years together, making memories and cherishing each other, for many of us that will not be possible. It’s true, we all looked down upon our newborns in our arms  and assumed we’d have time on our side, and rushing would be an option and not a necessity. And yet that’s not the case. Time is not our friend. In fact, it’s a foolish notion to think that time is on anyone’s side at all. And that’s why we all need to live our lives, we all need to see as much as we can see and do as much as we can do. Because your life could end tomorrow and you might have put off something amazing that you could have done today. If your life ends tomorrow, you will never have the chance to experience it.

And that is why I smile. Because I am one of the lucky ones that understands life is fragile and bad things happen randomly, to anyone and at any time.

My son has Duchenne Muscular Dystrophy, a degenerative muscle wasting disease. It is both incurable and terminal. His life will be both compromised and not very long. Most likely he will never fall in love and get married or become a father, drive a car or a motorcycle, backpack around the world or ski down the highest mountains, go on surfing safaris or hike through jungles, and he definitely won’t be able to play professional rugby or cycle in the Tour De France. And yet, like any typical little boy, he has dreams of doing all of those things and more. And that’s where we, his parents, can help him achieve some of his dreams.

In his 12 years, he has lived in 4 countries (Japan, Singapore, England, and Australia) and visited 24. He has seen Mount Fuji, cheered at knight-jousting tournaments in the grounds of a medieval castle, gone to Cambodia and Indonesia, skiied slalom in Austria and New Zealand, looked for the Loch Ness Monster and visited St Andrews in Scotland. He has ridden on an elephant in Thailand, gone on a bullet train in Tokyo, explored New Zealand’s south island, attended the Rugby World Cup, met and hugged the Prime Minister of Australia, and had lunch in Italy. He has done the Sound of Music tour in Salzburg, climbed the Eiffel Tower and driven down the Champs Elysees. He’s snorkelled on the Great Barrier Reef, toured Port Arthur, viewed the Twelve Apostles, been in awe at the sight of the Grand Canyon and Yosemite, and swum in the beautiful blue waters surrounding Phi Phi in Thailand. He  has played cricket and rugby, ridden a motorbike, gone on a helicopter ride to the top of a glacier, laughed his head off on jetboat and a roller coaster, jumped on a trampoline, gone to Disneyland, had lunch with Orca whales, and snorkelled with tropical reef fish. He’s seen Stonehenge, played golf, met some of rugby’s greatest ever players, and the odd B-grade celebrity. He’s seen the changing of the guard at Windsor Castle, and he’s seen a ghost. He’s had snow fights and he’s swum in the middle of the ocean. He’s surfed, he’s learned to ride a bike, he’s flown business class, and he’s had 3 siblings born after him that he could dote on. Oh yes, I’ve had many people in both the Duchenne community and medical profession tell me that he shouldn’t be doing this or that, because it will cause even more damage to his muscles, but that isn’t my main concern. I’ve had plenty of people question our decisions to take him and our other 3 kids on extended holidays, and I don’t care. I want him (and the rest of our kids) to experience as much as he can, even if it is just once and fleeting. And then say that he’s done it. He can tick it off his metaphorical bucket list, a list which we have written up as he doesn’t yet know at 12 years of age everything he wants to see and do in his lifetime.

As morbid as this may sound, I hope that when James gets to the end of his life he will look back and know that he’s done more in his short and compromised life than most people will do in an entire 70-100 years. He may not achieve all his dreams, but he will have lived, he will have laughed, and he will have smiled. Even with time against him.

If you read this and take anything away from it to apply to your own life, then let it be this – be thankful for the time you have. Life is too short and too precious to put things off. Life is for living. So go out and live.

If I can help my son live an entire lifetime in only 9 years, imagine what you can do in seventy.

Or eighty.

Or even a hundred.


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