we went to Broomfield Hospital for an appointment with Freddie’s dermatologist, we arrived 20 minutes early so decided to grab a drink before we went through to the waiting room. I took Freddie over to a table with a couple of sofas in the corner whilst James joined the queue. I thought I’d take a photo of Master Cheese as I’d already decided I was going to write a post about what the appointment schedule was these days. A general update on our lives.

Anyway whilst, minding my own business, chatting to Freddie and taking a couple of photos a lady came and sat opposite. I didn’t really pay much attention but Freddie kept looking at her. She took her coat off then got up the join the queue to order her coffee, as she stood up she looked me straight in the face and said ‘all people do these days is take photos of their kids, I’m glad it wasn’t like that when I was younger’. Then off she went to get coffee.

I was so taken aback by her comment that I silently watched her walk off. Now, I know we live in a time of technology/social media and people document more aspects of their lives. There’s a generation that have inbuilt that if they don’t photograph a situation/event/party and make it public then it didn’t happen, or they didn’t enjoy it and people build artificial lives of pure happiness to portray through social media when it’s not true. I realise there is so much bullshit out there and I realise that is very sad. (I’m actually quite intelligent you see). I have also questioned, at various stages, as to whether I should make Freddie’s face so public. I way up pros and cons of sharing our journey and whether it’s in his best interest to have his face in papers, on social me etc. I am strict in some respects and I don’t like other people posting pictures of Freddie publicly. I do expect, at some stage to receive some for of criticism for writing a blog and having social media accounts featuring Freddie. It’s a subject that I would discuss if people were interested/curious about my motives, however, I will not tolerate a random dig from somebody who doesn’t know me or anything about me when I am minding my own business with my son.

By the time James returned I was stewing and getting really annoyed. I briefly explained my encounter to him and said I was going to say something when she returned. He told me that he thought I should and confirmed that he thought she had been rude.

I could feel the adrenaline pumping as she returned so I can’t recall word for word what I said but it was along these lines;

Me ‘Excuse me I was really taken aback by your comment about me taking a picture of my son, not that it’s any of your business, but my son has a rare genetic condition and a low life expectancy so if I want to take a photo of him I will’

Lady ‘I was just saying a comment; it’s what people do these days...’

Me ‘It was rude and it’s none of your business’

Lady ‘People say things, people say things to disabled people all the time..’

Me ‘what on earth has things people say to disabled people got to do with it?’

I think then it was along the lines of she gets things said to her because she is disabled... and something about how I haven’t asked about the comments people make (to her)... at that point I was very quick to point out my son is severely disabled and I don’t need to ask about what people say to her...maybe I told her it’s irrelevant (if I didn’t I should have!)... then I remained quiet for a minute and said ‘If you have inappropriate things said to you even more reason why you shouldn’t say anything to others, and if someone tells you you’ve upset them you should be able to say you’re sorry because you know what it feels like.’

I’d lost her by this point, she had twisted her body away from me to check her phone and read her book. Clearly giving me the message loud and clear that she didn’t really give a shit what I had to say and didn’t really care that I found her rude. I suspect it’s what I looked like, in my teens, when my parents tried to tell me off and I didn’t really give a shit.

Usually, after an encounter like that, I’d like to think I’d made someone think twice for the future but sadly I think she was just a miserable lady that felt entitled and carried a chip on her shoulder because of the way she has been spoken to at various stages in her own life. That does not make her attitude okay and if I didn’t have Freddie with me I would’ve totally lost my shit (the fact James was sat there rubbing my back whilst I was talking almost made me explode as it was) and not stayed as calm and composed as I did.

Afterwards I asked James if I handled it okay and he told me he was proud of me, so that’s a win.

Thankfully it’s Tuesday which means Yoga so after winding myself up again I am now off to find some calm and relaxation...

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.

I’ve been so excited about Christmas this year. Partly, I think, because we had such a shit summer I really needed hope of some stable time and something to look forward too, partly because I just bloody love Christmas! Our life tends to go to crap when we allow ourselves to look forward to something (especially holidays - they tend to involve hospitals in some capacity) so it reaches the stage you’re scared to look forward to anything, even the shortest amount of time, and constantly trying to manage our own expectations if we allow ourselves to.

Anyway, thank goodness Master Cheese has had a stable September-December (did you know this timeframe is the toughest in the year for bugs and illness? Absolutely horrific for vulnerable kids/people). I’m sure it’s a combination of antibiotics, steroid inhaler and his enteral feeds containing the exact nutrients he is suppose to be having that have contributed to his stability. He’s had one overnight stay in hospital. This time last year we had been in and out several times in December alone - including Christmas Eve! He had a chest infection over Christmas. We are immensely grateful, and it means we have been able to enjoy him and watch him grow.

Tomorrow we are spending the day just the three of us. We are eating out for lunch and going to have a very relaxed day. It’s worked out that way by chance but it’s the Christmas Day I would’ve picked given the opportunity. Just us, on our terms, quietly doing our own thing. I think back to a year ago we were still coming to terms with Freddie’s diagnosis plus he was still seizing regularly. Life was extremely intense and everything was terrifying. It’s not so intense now (it’s still pretty terrifying) plus I think we know a bit what we’re doing and I’m much confident in my role, not only, as Freddie’s mum but also his carer.

Whatever comes next I’m taking this moment (whilst James puts him to bed) to be grateful for the last few months. Tomorrow I know I will annoy James by taking too many photos, I will find myself gazing at Freddie Cheese knowing I’m going to want to try to remember everything and I will probably annoy him by kissing/squeezing him, and constantly telling him how much I love him. Christmas genuinely isn’t about the gifts under the tree, it’s about the people you are spending time with over the holidays and making memories with the people you love.

On that note, a very Merry Christmas to all.

(For the record, I’ve not even had a drink yet!)

Whilst it was lovely, because Freddie slept like a dream and it was full of wonderful Christmas festivities, these stays are usually tinged with a bit of sadness too. This time was no exception and the first time I’ve returned home shedding a few tears.

Last month our respite was cancelled because a family were staying due to the nursing staff giving ‘end of life’ care to a child. This month we were able to stay on the proviso that we didn’t need any nursing cover for Freddie overnight and would care for him ourselves. The family were still there you see which meant the nursing staff, understandably, had other priorities. Usually we look after him overnight when we stay anyway however, on this occasion, we had been planning to ask to leave him so we could go out for dinner but it really didn’t matter. Instead we went to Waitrose for breakfast. Now I love a Waitrose (especially one linked to a John Lewis Home Store) so it was all good. Ultimately we still had one on one time and that is the main thing we try to get when we stay, it doesn’t really matter what it’s doing.

Anyway, it’s not my place to discuss any details but this stay has made me think a lot about Freddie and when we reach the dreaded ‘end of life’ stage.

Will he know he’s dying? Cognitively, will he understand what is happening? Will he be scared? Will he be in a vegetative state? I had always presumed he would by the time we reached the hospice for ‘end of life’ but maybe not? How long will it take? How will we cope? How will it feel? What time of year will it be? How quickly will he deteriorate? I always presumed it would be a very gradual thing and we’d know we were heading in that direction, but I guess it doesn’t always work like that? Even our experiences with him up to this point prove he change so quickly, but will life and death be that quick for him? How will we know it’s time and he definitely won’t improve again? Just so many things going around in my head. None of which we can actually be given a definitive answer at this moment in time.

Life is so cruel. I see these children, really sick children, and I feel they should be enjoying life and being able to live carefree. No tests. No alarms or reminders for medication. No hospital schedules. No equipment. I don’t usually say this but it’s not fair. They’ve not had a chance to live. Tonight I feel heavy hearted for the families currently receiving such essential care and help, the ones that have needed it previously and the ones that will need it.

I was supposed to be going out tonight, into London Town to see Pete Tong. I’ve not been into London for a night out since before I had Master Cheese - I don’t think?!! Although I just feel like I want to be at home. Suddenly it’s never seemed so important to be around to hold Freddie in my arms when he wakes up and snuggle up to him. When you don’t know how many cuddles you have left you need to be available to soak up every second of every one you’re offered. Thankfully, with him, I think they’ll be a lot. If there’s one thing my boy loves it’s a cuddle (Takes after his father in that respect, personally I like my own space and not to be man handled too much).

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 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.