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.
As I’ve written before, I like these periods of calm and normality immensely. I like just focusing on now and the biggest stress at the forefront of my mind being whether we’ll be late arriving for nursery. James and I have often discussed how our lives will never be carefree again, usually in context of how we didn’t actually realise how carefree our lives were before. I guess you always think whatever you’re worrying about is pretty major until something life changing happens. Anyway, I’m enjoying our quiet time for now. Everything seems still and life is calm in terms of the mito shit… and long may it continue.
