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.

Life, as always, has been a bit chaotic recently. I naively thought once Freddie started nursery I'd have more 'time' - I'm rapidly concluding time is actually an illusion. I suppose, the truth is, I try to do more with all this 'time' I have. This means I go running and clean the house on Monday's (James takes Freddie and collects him on a Monday because he works from home), if there's any surplus time I run errands or cook food to freeze. It's actually a very productive day but just not very creative. My website is still no further along, my blogs still haven't be copied over... blah blah blah. Then we come to Wednesday (nursery day number two) which is chaos. James is in Brighton on Wednesdays so by the time I've got Freddie to nursery and returned home it's usually 10:30/11 - maybe later if I have to stop at the shops. Once I'm home I have enough time to clear up after the carnage that is breakfast, maybe do a load of washing, pack a swimming bag and have some lunch then I'm leaving the house again at 13:10 to collect him and drive to Ipswich for hydrotherapy at The Treehouse. We finally get home around 17:00. It's an intense day for both Freddie and me. James usually gets home once Freddie's asleep and I'm normally exhausted. Unfortunately The Treehouse only offers hydro on a Wednesday so there’s no flexibility to move it. It's something we'll keep reviewing and if it's not working we'll have to stop.

So, that is a summary of nursery days but rest of the week I look after Master Cheese, whether that's just playing at home, play dates with friends, therapy appointments or various other appointments. It's amazing how much more stressful it is trying to fit life in during the remaining three days of the week. Not to mention the fact that Freddie is shattered Tuesdays and Thursdays (the days after nursery) so I need to make sure that he has plenty time to sleep.

The biggest bonus is that he loves nursery and I love taking him. His face lights up when he sees his friends and key workers. It's beautiful to see. Sixteen months ago we didn't realise this milestone would be possible, but here we are and I'm bloody grateful. Something I took for granted when I was pregnant was that our son would go to nursery. I am of the opinion it's good for children to socialise with their peers, and to learn to respect adults other than their parents or family members. I still have those views but Freddie's situation is obviously quite specialised and I like that his nursery is a mix of additional needs and mainstream children. Personally, I'm not keen for him to he institutionalised into a 'special' only facility any time soon. He learns a lot from mainstream kids (and has excelled since starting nursery as well as having his PEG fitted) not to mention the fact mainstream humans, of all ages, can learn an awful lot from our special community.

The point of me writing was to try and summarise why I've not been blogging or updating you so much... essentially it appears we’re too busy being normal (whatever the hell normal is). In all seriousness, I love all these mundane milestones. I love that Freddie goes to (and really enjoys) nursery. When you’re the mother of a special needs child, to a certain extent, you can find yourself excluded from things. For whatever reason. You also reach a stage where you have less (sometimes nothing) in common with mums of mainstream kids because your child won’t hit developmental milestones on par with theirs and they have zero idea what it’s like to mother a special needs or medically dependent child. It can be tricky to navigate socially. To me, not only is nursery a break for both me and Freddie but it also adds another dimension to both of our lives. It’s something else to talk about, focus on and be grateful for... plus it’s routine and anybody that knows me well knows I like a bit of routine. Our fear, back in September, when he started was whether he would pick up too many bugs and become too poorly to go. If that were to happen the Doctor that heads up symptom management for The Treehouse had warned us we may have to withdraw him as his health it more important. Thankfully (touch wood), his prophylactic antibiotics seemed to have worked wonders so far this winter meaning he’s only missed one session of nursery for illness plus one week post his gastrostomy operation.

I watched my gorgeous, strong & determined little boy sleeping as I contemplated life. Firstly, how quickly the last few weeks had passed. It's been nice; Freddie Cheese is stable, actually, if I'm going to be honest he's thriving. I was looking at him trying to match him with the boy we watched deteriorate in front of our eyes from June. I couldn't. He's completely different now. He's so strong (his sitting record is around 3/4 minutes) and he can manoeuvre himself around the floor in record speed if he wants something. It's privilege to see. He's such an amazing kid.

Unfortunately, all the positive things don't necessarily make things easier. You see, when Freddie is poorly or has a period of regression - we cope. James and I pull together, we function on adrenaline, draw on Freddie's strength and we survive. That's what we have to do, so that's what we always do. As a matter of course we then reflect on events at a later date - when we have more 'time'. I think that's why this period is tough, because we've been reflecting. We've talked about the summer, we've discussed Master Cheeses achievements since then and we've cried. It may sound surprising that there have been tears now, when everything is going to well. The truth of the matter is that I'm very aware a regression could happen again, at any time and next time maybe he won't fight back like he has this time, perhaps it'll be too much, or maybe it'll take longer? Who knows what will happen next time... and there will be a next time, sadly.

I will update you all with Freddie’s latest progress and achievements in a proper post shortly, but whilst he’s finishing his breakfast feed I thought I’d upload some pictures of the first time he saw proper snow!

Our Sunday was very festive and consisted of playing in the snow, watching a Christmas film and decorating gingerbread men! We were supposed to get our Christmas tree but that was put on hold. Partly, due to the weather but also because our delightful cats, Gizmo and Gray, are absolute buggers and remove the decorations plus knock our fake tree over regularly.

his key worker gave me a laminated sheet of three photos she wanted to show me of his day. When I glanced at the photos I was surprised to see a little girl sitting with Freddie in two of them, one of which she was cuddling him. I asked who it was as I didn't recognise her... until I looked closer and saw she was wearing a Disney princess dress. The dress rang a bell as I saw her that morning. I only saw her because I turned to look at who had made Freddie's face light up so much and there stood this little girl in her princess dress. After I dropped him off I spoke with James and told him about the little girl Freddie was clearly fond of.

You see, having a none verbal child means I don't know who Freddie is fond of, who he's friends with, or who he plays with. He can't come home and tell me about his day or who he sat next to at lunch. I know no names other than the ones I've picked up being there. On top of that he has one-to-care, so his key worker isn't also responsible for another child or two so it's not like I'm aware of children he would interact with. I know he loves nursery. I see his face when we arrive. I know he adores his key workers as I see the way he looks at them. I've even witnessed children talk to him, say hello when he arrives. It's not the same though, it doesn't compare to you're child being able to tell you what they did and who with.