was another year of knowing mitochondrial disease exists, another year watching it fight against our boy, feeling the heartache and loneliness that comes with it. Before this disease came into our lives, I guess, New Year was a time of hope, positivity and fresh starts. I can’t enter a new year with the same hope or optimism anymore. Of course there are moments of hope but I can’t look at a 12 month calendar and have hope or ambition for that length of time. Is that something that happens with age anyway? Or is it just the disease which has changed me? I know that those 12 months will be filled with as many highs as lows, they’ll be lots of laughs as well as tears. I just have one ask 2018, please, this time next year let Freddie Cheese still with us, please allow us to celebrate another Mothers Day, Fathers Day, birthdays and Christmas as a family. I promise I won’t waste any opportunities and we will live life to the fullest if you’ll let us.
2017, I will take from you our memories; we went to Brighton, Cologne, Paris, Centre Parcs, I completed Tough Mudder and two 10k runs to raise awareness for The Lily Foundation, as well as a radio interview about mito donor IVF and a newspaper interview about Freddie to support Jeans for Genes, Freddie had a gastrostomy fitted but he grew stronger, started eating and chewing better than ever, he discovered his index finger which means his pincer (and pinch) have improved ten fold, he can manoeuvre himself with purpose and empty the DVDs under the TV, he’s not had a seizure for eleven months (although I won’t hold my breath), he spent less time in hospital than 2016, we’ve taken him bowling, he’s been in a trailer on a bike, he says ‘dada’ and ‘mama’, he can sign ‘friends’ and he’s completed a term at nursery only having one session off because of illness, he’s been to numerous local shows, seen a musical and been to an art gallery in London, and he can sit unaided for his longest time ever (but not indefinitely). Most of all, we have laughed, we have laughed a lot. I actually think we have laughed harder than we’ve cried this year. That is an achievement in itself.
Tonight, I will take a moment to think of all the warriors (and their families) who lost their fights this year. Little heroes every single one.
Enjoy your celebrations everyone, after my curry I am off to bed… and I’m sure I will watch the monitor closely and enjoy listening to the sound of Freddie’s breathing for a little while before I fall asleep.
