Although, to be fair, a year ago we had still never heard the term ‘Mitochondrial Disease’ however, it was a year ago today the events started where we would be introduced to it and our lives would change forever. In some ways it feels like yesterday. I remember the day clearly, Freddie was ridiculously lethargic, to the point I changed his outfit and nappy without him even waking up. We took him to the Village Festival with some friends and I could barely keep him awake to eat or drink anything. It was a hot day, I wondered if that had wiped him out. The day prior he had been on fantastic form which made it even more confusing. Based on the previous day, James and I thought he’d turned a corner. Obviously he hadn’t. That night (the Sunday night) James called me and I could tell by his voice it wasn’t good. He told me to call an ambulance because Freddie was having jerking movements with his arms and it could be a seizure. To be honest I was a little confused how he’d reached that conclusion and I didn’t want to seem dramatic so rang 111. Little did I know, events from the previous night (when I’d had concerns and James thought Freddie was shrugging) had prompted James to google seizures in babies and read up about them. Obviously 111 didn’t take any chances and an Ambulance was dispatched, we had to wait on the phone until they got there. It felt like the longest time, although it was actually the quickest Ambulance we’ve ever had. I’ll never forget Freddie being on my lap whilst the paramedic took his blood sugar (in the form of a heel prick). He didn’t even flinch. I could tell by her face that was a problem and she asked me if he usually responded to pain. I explained he didn’t. That’s when it started to dawn on me everything was linked. In the ambulance his tiny body continue to spasm in my arms whilst the paramedic closely watched in silence. I think that was when I shut down. That night also seems like a lifetime ago. I don’t recognise the baby Freddie was then anymore, or the baby he had become leading up to those events. I look back at pictures and I can’t really match him up to the child we have now. He seems alien to me. I think, also, I feel like I coped during that time but that I wasn’t really present. I functioned with a sense of muted emotion and then, after a few days that emotion came out and I functioned purely on adrenaline. I was empty. It felt like it happened in slow motion. I’ll never forget the horror of that week. There were moments I saw Freddie’s tiny body spasm whilst he was fighting to breathing and I’ll never forget the fear of thinking ‘this is it, this is how he’s going to die’. It’s a fear I have never felt before. A fear I can’t even begin to describe, and a fear that I think you’ll only ever know when you’ve seen your child in that situation. So much can happen in a year, as much as our last twelve months have improved it’s important for us to remember it can easily go the other way. We will continue to live day to day without planning too far in advance and not thinking about what life will look like in the next twelve months.
