Following our staff training day yesterday, today we were tasked with writing a blog post about how we overcome our limits to breakdown barriers. I was in the process of writing a similar blog yesterday so I thought I’d post this instead:
Nothing could have prepared me for the massive bombshell that was dropped on me in June this year. For me, this has been the biggest barrier of my life. I don’t need to go into the details of Hugo’s diagnosis as the majority of you already know. The last 3 months have been a complete whirlwind and I don’t actually remember how I managed to get through some of the darkest days of my life. I’ve been keeping a blog since ‘diagnosis day’ which has been a huge help for me to be able to get my feelings out without having to physically talk, which even after 3 months is still incredibly difficult. However, reading back through my blog posts makes me realise that I can push myself to battle through some of the hardest challenges imaginable.
You may be wondering what barriers Hugo’s diagnosis has created for me? Well, it has changed every aspect of my life. It has made me question everything and has left me wondering if I’ve made the right decision all the time. Nothing prepares you for dealing with your child suddenly having a life-limiting condition, one which will see him slowly lose everything and eventually give up. Something as simple as just getting up in the morning and putting on a brave face is a challenge in itself. But, the whole process has forced me to be strong and find positivity in everything. Without positivity, I won’t have hope, and without hope I can’t remain strong.
Yesterday was the most terrifying yet amazing experience of my life. It was our staff training day and we were taken to the ‘Zombie Infection’ in Sheffield. We had to work in teams to find our way around a derelict building whilst being followed and attacked by zombies! I’m not going to lie, I very nearly didn’t do it. There were several occasions when ‘code 2’ (our escape word) was literally on the tip of my tongue. I was trembling with fear the whole time. I conquered some massive fears and pushed myself to the limit. One particular fear of mine is complete darkness, so being shut in a pitch black basement knowing that zombies could jump on me at any second sent me into an overwhelming panic. I certainly never imagined I would make it through the whole day.
There was one thing that carried me through the experience, and every time the fear was becoming too much, I kept this thought in mind and battled through. I was inspired by Hugo, my 4 year old son who will have so much more to be scared of throughout his short life. He has to get through each day slowly losing his mobility, already struggling to keep up with his brothers and friends. He already has a cocktail of drugs to take on a daily basis and is in and out of hospital for various tests, missing out on time that should be spent playing. But, he does it with a huge smile on his face and never complains. This is all the inspiration I need to help me overcome the fears in my life. If he can get through all that, then I can pull myself together and face a few zombies!
Whilst yesterday was the ultimate scary experience, it is nothing in comparison to what Hugo will have to go through in the near future. Which of course is my ultimate fear, knowing what is yet to come. Hugo will no doubt get through it all with that beaming smile and positivity, which is why he is my biggest inspiration. Duchenne may have changed our lives but it has forced me to overcome my limits and breakdown any barriers that are thrown my way. I have found the positivity that I was previously lacking, thanks to the strength of my 4 year old son.