I am not a mother who usually dreads the looming prospect of the long summer holidays. I have been fortunate enough to have been able to stay at home with my children, earning a little money by doing bits of freelance writing, so I’ve not had to worry about arranging and paying for childcare. I’ve also never found the company, chatter, and incessant questions of my children tiresome (I do, however, find many adults extremely tiresome).

This year, though, I feel very differently.

Normally I look forward to the long summer holidays as a time of relaxation and fun, a break from the up-at-six o’clock, to-and-fro school run routine.

This summer has a constricted, hemmed-in, breathless feel about it. I can feel my waistline expanding and my arteries hardening, and my brain becoming stiffer and foggier with every day that passes. Each and every day brings yet another battle to get Freddie to engage in any kind of meaningful or constructive activity at all, never mind actually do some kind of formal learning. I have to supervise him ever more closely as his behaviour get more mischievous and more provocative.

By the time I’ve done this and made sure that we have just enough clean clothes to wear and the house doesn’t become a health hazard, there’s another meal that needs cooking and more dishes to wash. With everyone working or studying at home, the amount of meals and snacks that I need to cater for has trebled. Since March I have not been able to get out for some exercise, or even to run errands. I have not been able to write, or even to think about writing. I feel old, exhausted and utterly stultified. I don’t feel like me.

Normally I look forward to the long summer holidays as a time of relaxation and fun, a break from the up-at-six o’clock, to-and-fro school run routine. This year we are simply doing whatever we can to make the time more bearable.

In a normal summer, while Daddy is at work Freddie and I might get out into the garden, play basketball, have lunch on a folding table under the conker tree, but since an recent incident in which I had to take my eye off him for a second and he clambered up a sturdy shrub to get over the fence into next door’s front garden, which has no gates and leads straight out onto the busy main road, I daren’t take him out there unless there are two of us with him.

As a safer alternative, we’ve spruced up the little enclosed yard behind the kitchen that we previously only used for hanging out washing. We’ve painted up an old algae-covered garden seat, added container plants, wind spinners and fairy lights, and hung mini gardening tools on the walls.

Freddie loves a beach, so when Daddy has his week off, we drive to the coast.

If finances permit, we might even go further afield and stay over for a couple of days. But we won’t be going to any beaches this year. Instead, the beach will come to us – Daddy has built a small sandpit in our pimped-up yard. It has a lid to keep cats and other creatures out, so it doubles as a handy wine table once Freddie is tucked up in bed. His room overlooks the yard so we just leave a top window open and we can hear him and be upstairs in a trice if he needs us.

The summer holidays would usually be a time for extra visits to see grandparents. Grandad, who has a form of dementia, really looks forward to Freddie (and I) visiting every Saturday. Lockdown has been difficult to explain to both of them.

We were hoping we would at least be able to go and sit with them in their garden this summer when the weather was fine, but, sadly, Grandad was taken ill two weeks ago, and the hospital decided that he would have to go into a nursing home for assessment before he could come home. We cannot visit him there at the moment, and Freddie will not be able to visit at all as he is a child. When Mum and I can eventually go, there will be a Perspex screen between us, and I don’t know how any of us will bear this.

The usual scramble to find items of school clothing in Freddie’s size has already been done online, as he needed a complete new uniform for High school, so this year I am going to get the Christmas shopping out of the way, right now, in case my husband loses his job a few months down the line in this disastrous economic climate.

And I am trying not to look forward to September, in case schools cannot fully reopen.

My amazing late Granda was an incredible but superstitious man…hating Friday the 13th the most! He’d say that no good would come of going out that day and we were to stay home if possible or just get to and back from school (then work). My mum always said he’d have been pretty unhappy with me moving house on a Friday the 13th…yikes!

Friday 13th March 2020 was also the last day my five-year-old triplets were in school before I decided to keep them off because of coronavirus. I was slightly early in doing this, although the decision to close from Monday 23rd March was taken so we weren’t too premature in pulling the kids out.

From then we were home-schooling, like the majority of other households. I used to have a “direct payments worker” who came to us in the afternoons during the week to help with Jacob’s additional needs e.g. physio, OT tasks, changing and so on but because her partner was shielding and so was I (because of my MS), we took the difficult decision to stop her coming.

I felt completely overwhelmed, all our support systems seemed to “fade away” overnight because of this awful virus!

Thankfully, my mum is a special needs classroom assistant who was technically “not working” due to the school closures. She decided to live with us for a short time to help me settle into home-schooling and try to teach me how to teach! Her patience, generosity, kindness and love kept me going despite knowing that I am definitely not made to be a teacher. My husband was working from home so having mum there meant he got peace to actually do his job, which is what keeps our family financially supported.

The kids took to home-schooling really well. We had amazing support from their school, which we were so grateful for considering a lot of people didn’t seem to feel that way. Jacob struggled due to his health difficulties as well as his stubborn personality; a wonderful trait in some ways e.g. getting him to walk against the odds, but so hard to direct in terms of teaching.

I’d love to say to his p1 teacher…you are quite simply BRILLIANT. To his p2 teacher I’d really just say…let the games begin!

We’ve since been told that school is to start back up. All my children are doing a more gradual phasing in process because the school deemed them in greater need due to experiencing trauma at home (health wise). I’m so glad to see the focus of the school is on mental health and not academic brilliance at this stage to be honest. Having had a very traumatic month recently (it is much too raw to talk about), I am feeling very delicate at the minute and quite emotional about sending my little people out into the world again. It’s like the emotions of p1 all over!

I spent this afternoon getting Jacob’s things ready including: nappies, wipes, nappy bags, aprons, gloves, masks, change of uniform, clean cushion cover for his wheelchair, emergency medication, a “helmet” to protect a surgical wound on his head, epilepsy care plan, directions for administration of buccal midazolam etc. Parents of children who have additional needs will sympathise with this completely, as I’m sure there are families out there who have to do so much more to prepare for school than I’ve had to! I applaud you – this has knackered me.

So ready or not…school is happening, and we will just have to do what we’ve been doing since that important Friday the 13th and take it one day at a time.

My focus is on supporting my children’s mental health and ensuring their return to school is a positive experience. I’d rather play catch up with the academics than try and repair a child’s injured psyche. To all the other parents who will be feeling this along with me, let’s support each other through these unchartered waters! Good luck everyone.

As August comes to an end we are starting to embark upon a new part of our journey through this strange year.

We have spent much of the last few months in isolation. Avoiding stores, restaurants, and even friends and family in an attempt to do anything we can to offer another layer of protection to our medically fragile child. We are now reaching the point where decisions must be made. Remaining to the greater extent in quarantine or resuming our face to face therapies and services.

Every time I feel like I come to terms with my fears amidst this pandemic another layer of anxiety seems to present itself. There does not seem to be an end in sight. In the early days of this, I assumed this would be a fleeting thing. That we would be vigilant until it passed, and then resume our lives as we knew it. I was terribly wrong. Now months into it things only seem to have gotten worse in my location. Meanwhile, time also passes without the therapies that have become such a vital part of our daughter’s life.

It is difficult to imagine venturing back into the world knowing how many people are blatantly not taking precautions to protect children like mine.

I have seen so many people complain about the simplest amount of measures to slow the spread of this deadly virus, even to the extent of boycotting businesses that are prioritizing safety. I know they look at children like mine as a statistic, but unfortunately, I do not have the luxury of minimizing this as it is a real threat to families like mine. When I express my fears for my daughter’s safety though, I am often met with hostility and condescension. This experience has really opened my eyes to not only the lack of empathy and compassion from strangers, but also from people from within my inner circle. It has been disheartening to say the least.

I feel at odds with myself between wanting to keep her in the secure bubble of our home, while at the same time I have an immense amount of trepidation about the long term damage not seeing her regular therapy team can be having on her body. The fear of regression is ever present in my mind. We have been very fortunate to have Zoom therapies to help bridge the gap, but nothing compares to having a trained professional working hands-on with her.

Ultimately, we have decided to resume most in person therapies, with a high level of precaution taken.

It was not a decision that was easy to make, but I feel as though it is in her best interest. That being said, it’s hard to quell the anxieties this year has brought me, but I am reassured by the level of care and thoughtfulness our team has always provided us. I can’t pretend this is not unnerving for us, but I remain optimistic that this will be a small step into the new normal that is our life.