Little moments 

Things are becoming much more normal at the moment. Day to day life seems to have taken over again and diagnosis day seems so long ago. 

However, I still have those little moments where everything just crushes me that little bit more. Hugo now comes running up to me after school everyday with the biggest smile on his face. He gives me a huge kiss and cuddle and goes on his way to after school club. 

Tonight was different. I saw Hugo for my normal kiss and cuddle and said goodbye as usual. But then he turned around with tears in his eyes and shouted ‘don’t want to go to hospital again Mummy’. He then threw himself to the floor and started crying. It was a very sad moment.

Not only was it hard to see him upset, but it saddened me to think that after only 6 weeks, he’s already associating hospital visits with everyday life. He has been to hospital more times in the last 6 weeks than he has in his 4 years of life. 

It also made me feel apprehensive about the future. The nerves, the tantrums, the tears that will no doubt come when he has to endure endless hospital visits, physio sessions, blood tests, operations, heart scans… The list is endless. Seeing how brave he was at the beginning has been the only thing keeping me going, but I am beginning to think his bravery may soon change to dread at the slight mention of the hospital. After all, he is only a child. He wants to be playing and having fun, not going in and out of hospital. 

Duchenne really sucks. 


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