This week it will be four years since we first heard the words “Mitochondrial Disease”.
Four years since we dialed 111 because our baby was doing some strange ‘flinching’ movements.
Four years since the ambulance paramedic looked at me (after my baby didn’t respond to a heel prick blood test) and told me that wasn’t normal.
Four years since I saw the consultants face drop in A&E after he asked what my sons development was like and I explained he can’t seem to roll over anymore and doesn’t show any emotion.
Four years since we were told our baby boys EEG wasn’t normal and the seizures we thought he had during didn’t register because his brain pattern was permanently abnormal.
Four years since we were told he has white matter on his brain which was conclusive with a metabolic disorder.
Four years since I ran down the paediatric unit towards my sons bed in high dependency with my him seizing in my arms following a lumbar puncture and rang the alarm for help. Followed by a crowd of overalls and coats descend, pulling the curtains closed and grabbing the oxygen.
Four years since I started to watch my live unravel like an out of body experience.
Four years since the consultant nervously approached my baby boys bed, drew the curtain and asked whether we wanted to have this conversation here or go somewhere private.
Four years since we were told that these diseases were degenerative, that there was no cure and my husband asked “so how long do we have?”.
Four years since our world came crashing down.
Four years since people changed the way they looked at me. Either too afraid to make eye contact, or brave enough to make eye contact but teamed with a pity smile.
In some ways it feels like a lifetime ago, in others it’s still so raw and the trauma too fresh. If I’m honest I know I have some form of post traumatic stress disorder linked to those events unfolding, I think it would be strange if I didn’t. I thought Freddie died at birth. That was enough trauma for once person, one Mummy, to take but then eight months later to start living in a nightmare is a whole other level. I choose to only recount that hellish week in June 2016 when I need to. It makes me sad. It breaks my heart all over again and it brings to the surface all the emotions I felt at the time. I do allow myself every anniversary to take a moment grieve the life we had dreamt of and talked about. I think it’s important to have that outlet and, truth be told, whether it’s because I’m too busy or genuinely okay the rest of the time I actually don’t feel the need. I’ve learnt I can live side by side with the diagnosis. I know the monster is there, lurking. I also know I can’t change that so I may as well live peacefully with it instead of trying to fight it.
That said, if you had taken me aside when I was reading information provided to us stating that 1/5 children who had the seizures my son had just been diagnosed will die before their first birthday and told me where we’d be now, four years later, there’s no way I could’ve possibly believed you. It seems so surreal and that’s why now feels like a different life. Now is a life where my baby is almost five, he’s due to start school next year, he’s reducing PEG feeds by increasing oral eating by the day and he’s walking with his frame. He communicates, he has wants and desires, he also has dislikes, he’s funny and has the best slap stick sense of humour ever. He also gives the best hugs with two arms holding you in a headlock. He’s writing his own story, then pushing it further along. He never read the paperwork we were given. He didn’t see that the average life expectancy for children with his condition is two years following diagnosis.
Four years ago James and I made a pact and that was that we just wanted Freddie to be happy. We wanted him to get enjoyment from whatever type of life he could have and we could provide for him. That’s all we can do and as long as he keeps pushing us on we will continue to make sure he has the most fore filled life we possibly can.
It’s been four years since I realised I was stronger than I ever knew was possible.
