Those within the Duchenne Community will likely already be aware of the new brand, World’s Strongest Boys, created by Duchenne charity, Duchenne UK. But for those who aren’t, The World’s Strongest Boys campaign is designed to help raise awareness of the condition and to draw attention to the strong defiant spirit of boys with Duchenne despite their physical weaknesses.
My boys’ Strongest Boys t-shirts arrived today and got me thinking about how each of them really is the World’s Strongest Boy for very different reasons.
While Luke is clearly physically weaker than Coen, his sheer determination and will to do whatever he chooses is truly awe inspiring. To see the effort he puts in to climbing stairs, getting up from the floor, running, squeezing the play dough from his dough bakery set, and all with a smile on his face, would put any athlete to shame. Not because he can do what seems like regular things but because to him those regular things feel like what pulling a lorry or lifting twice your body weight might seem to you or I.
Coen is my other World’s Strongest Boy, because at just shy of 3 years old, he already recognises that his big brother’s needs are different to his. He is the happiest and giddiest little boy I’ve ever met even though he maybe doesn’t get the attention he should and even though he has to walk when his legs are tired because Luke’s are tired too, and even though I try, I can’t carry both of them together for very far and sometimes it just isn’t safe to do so.
Both my boys show strength in their understanding that mummy is often distracted. Sometimes the worry of raising a life limited child can be all consuming meaning that coincidentally countless hours are spent worrying, researching, fundraising, campaigning and awareness building, trying to buy time. But they never bat an eyelid, they just go with it. My boys are my heroes and more worthy of a medal than any strong athlete picking up medals in Rio this Summer.
And what’s more, as they continue to grow, so too will their strength. Luke will have to persevere through the inevitable decline that is coming. He will not be able to do all the things his friends will do. For him walking and running will be just a memory. He will have hospital appointment after hospital appointment. He will, hopefully, take part in clinical trials that will help to create a better understanding of his condition for the boys that come after him. He will struggle to sit up straight. His arms and hands will give out on him. And he will struggle to breathe on his own. But knowing his character, he will smile through it all and live his life to the fullest. His strength will keep me and everyone else who loves him going. If that isn’t worthy of a World’s Strongest Boy title, then I don’t know what is.
And Coen will make so many sacrifices for the love of his brother as he gets older. He will sacrifice time with his mum while she tries to meet Luke’s needs. I’ve no doubt there will be times he will stay home with Luke instead of going out with his friends so that his brother doesn’t feel lonely. He will miss running around the house with Luke when Luke is no longer able to do so. He will be his brothers best friend and confidante and will feel the hidden anguish that Luke may sometimes feel but will never tell his mum. But what will make him especially strong is that he will one day realise that Luke’s life will be short and he will have to find his own way to deal with that, and then one day, he will have to face the future without his only brother. I know that feeling, and it’s the hardest in the world. But my boy is made of tough stuff and another worthy World’s Strongest Boy title contender.
I’m the luckiest mummy in the whole wide world!