the third year since we found out about Mito comes to a close and it’s also the year our son saw his third Birthday. A day we never thought we’d see.
I want to feel angry, hurt or let down by this year because it has dealt me some personal blows but the truth is I can’t/don’t. Maybe I just don’t have the energy, maybe I’m beyond it now, or maybe things are different and I don’t take my personal struggles as personally as I do Freddie’s.
As 2018 comes to a ends I have to respect that’s it’s contained Freddie’s biggest achievements and it has also, undoubtedly, been his most stable year containing only two hospital admissions and no regressions. I could never have dreamt it would end on a much more positive note compared to the last two years. Previous years, whilst writing this post, I have been left feeling completely heartbroken and destroyed. On some occasions, incredibly angry.
That said, I didn’t love this year either. I’m not sure I could ever love a year again, not now we share every day with Mito. Knowing it’s always waiting over Freddie Cheeses shoulder and ready to strike wherever it fancies will always be gut wrenching to live with. In a funny way it also makes all his achievements quite difficult sometimes, never knowing when it will slowly start taking them from him again whilst we watch on helplessly. We record as much as we can (I’m sure only to torture ourselves further down the line as to what he ‘could’ do once).
2018 has also been when his therapy input appears to have slowed, as well as support, hydro and respite (from the hospice) have significantly slowed (essentially, stopped) because funding across the board is being cut left right and centre, or increases are being made but demand for services have also increased because lots of families are having their care packages cut and relying more on charities. It’s an extremely tough time to be living in when you have a special needs, medically dependant child and are completely reliant on the state. Not to mention the latter (no respite) gradually starting to take it’s toll on us as Freddie gets heavier and more challenging to care for.
This year James and I have had to try and adjust to our new normal. Whilst it’s an absolute blessing that there have been no ambulances called, only two admissions to hospital and no confirmed seizures we have learnt that we function well as a couple, and as parents, when we’re in emergency mode and living off of adrenaline. This normal lark for us is hard, it’s really hard. It’s exhausting and we’re still trying to find our feet with it all. We will adjust, we always find our way on this ever evolving journey… eventually.
It goes without saying I am immensely proud of Freddie Cheese, all his firsts and all his achievements leave my heart full and bursting with pride.
I don’t have much to say about 2019. I have no excitement and no ambition. The truth is I tentatively enter a new year with caution, always wondering if it’ll be the one to take my son away from me. Hopefully it won’t be. Hopefully they’ll be another Mother’s Day, Father’s Day, 4th Birthday, Christmas, Easter, fingers crossed a holiday and a house extension/adaptations. I hope it’s full of memories and laughter.
On that note I will now return to cooking our curry, I’m already in my PJs, I’ll be in bed by 10pm and tomorrow it’ll just be another day with my little family… and that’s the only thing I ever want to wake up to (that, and two slightly more chilled out and less demanding cats).
