The ups and downs of ‘normal’ life

I’ve said this before, but less than 2 weeks ago, we still had 3 fit and healthy boys with their whole life ahead of them. I don’t think anything will ever prepare a parent to hear that you will outlive one of your children. The news that your child will only live to be a maximum of 25 years old, with at least 10 of those years being extremely difficult with them effectively becoming ‘locked-in’, is simply devastating. It changes everything. 

Throughout this entire process, we have tried to keep a sense of ‘normal’ life. But it’s exactly that which is the cause of most of the heartache we are suffering. Something as simple as a school disco is gut wrenching. Seeing children dancing, running around and keeping up with their friends is something most parents take for granted. I used to be one of those parents. I never fully appreciated how special it is that your child can do those simple things that all children enjoy. However, it’s these things that makes us realise just how different Hugo is. 

Hugo loved his school disco. He had a huge smile on his face and really enjoyed himself. Yet for me it was another heartbreaking time. Seeing his brother and all his friends running around while Hugo struggled to keep up was enough to set my tears off again. And since his diagnosis, his difficulties have suddenly become much more noticeable. He dances on his toes, he can’t shake himself around like the other children, but he is a determined little chap and never once gave up. The innocence inside him is a beautiful thing, he has no idea that he is ‘different’ and these struggles that I witness make absolutely no difference to him at all. Adults could learn a lot from children, the strength and courage they have is simply amazing. I know for a fact that it will be Hugo who holds us up and when times get really tough, he will still have that huge smile and determined attitude. Despite this cruel condition, Hugo will be sure to make the most of his life… 


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