Just when I thought it couldn’t get any worse, this day happened. Following the initial diagnosis, we had to go back on the Tuesday afternoon for the blood test results. I still went to work in an attempt to take my mind of things. That idea failed. I was a mess. I think subconsciously I thought that by being at work, everything was normal. It wasn’t, it was far from. We received a phone call at 10:30am informing us that it was bad news and we needed to go back as soon as possible. My first thought was how could it get even worse? Then the panic kicked in, all sorts of horrendous things were running through my mind. Was it cancer? Does he have an even shorter life expectancy? What could possibly be ‘bad news’ when I’ve already being told my child has an incurable life threatening condition?
That 30 minute drive to the hospital was the longest 30 minutes of my life. I’d already cried so many tears that I genuinely didn’t know how I would react when we went back in that room. The bad news was indeed confirmation that Hugo has DMD. It wasn’t any ‘worse’ than what we’d been told the day before but I guess the consultant thought we’d gone home the day before with a bit of hope that his blood test would come back ok. I didn’t go home thinking that, I went home knowing that they were right.
After sitting there completely numb for 2 hours listening to the details of this condition and what’s going to happen, I think my emotions switched off. I just didn’t know how I felt. I had that many feelings that they all just blended into one huge feeling of helplessness. I’d felt anger, disappointment, guilt, fear, sadness, denial. The list was endless. But I hugged my boy, smiled for him and took him for an ice cream. I had to think of a way to stay strong and get through this.