Day 16.

Our ‘fridge and freezer are heaving again. Such luxury this; being able to pick and choose and not have to juggle to keep variety. The baguette we had delivered was definitely past it’s best (oh, trauma) but we made garlic bread which was such a hit, we had it for lunch and tea.

In sharp contrast to many people’s schools, A’s school have emailed to say please don’t worry about the work which has been set; if your child needs to keep school and home separate then let them and concentrate on life skills. Still learning, still educational. Wise.

D has a Nove-Chat 8 on a month’s trial. He’s mostly been ignoring it, so yesterday I wrestled with the instructions to add a few of the buttons he likes from his QuickTalk. And he promptly ignored all the new buttons, but proved he has been watching us model it for him, by grabbing it and hitting Play on the main screen to access the Bubbles button on the next screen across. This we like.

And, exciting times, there has been a change of policy, and we are to have care visits again. Hurray! Starting tomorrow, a carer will arrive in full PPE gear to somehow shower A whilst fully gowned and masked. I’m thinking the best place for D and I during this shower will be a socially distanced 2m away, which handily takes us into my bedroom with a front row view. Awesome. We will be having greatly reduced visits, and will be fully reliant on just one carer, who will have us and only us as her clients too. That’s probably about as safe as we can make it, and for all our sakes it will be necessary and massively appreciated.

We should have had a Spina Bifida MOT  this afternoon. A full afternion’s Clinic, visiting, in rotation, orthopaedics, neurosurgeon, urology, bowel surgery, ultrasound, x ray and bloods. The last three we’ve had to skip, but the doctors all called home to check in on how things were going. Side note: it’s disconxerting enough having people calling me Mum in clinic, but multiple phone calls also calling me Mum definitely made me wonder if I’d mislaid some of my children somewhere and forgotten about them.

Another day done. Silly giggles from all three of us. We can find happiness and meaning in the tiny things, a welcome distraction from this silent invisible toxic cloud hanging over us all, lurking behind the doorway.

Day 15

Something accomplished, and our garden playground grows. As does the collection of cardboard outside our front door; with our waste deliveries shrinking regularly I’m really hoping cardboard and excess recycling is not a casualty until after this week’s has gone at least.

Reaching the stage where I regularly completely forget what day of the week
It is now. We get up, D takes me outside, A does her schoolwork. We stop for meals. And repeat.

I am deeply thankful that we have a garden. The fence panels are becoming looser with every rainfall. I see pictures of neighbours removing panels so they can have socially distanced drinks together apart. This would not work with a D. I just hope that however long this lasts, we can keep the boundaries boy proof until we are welcome in the wider world again.

Day 14

2 weeks. A was very excited about this, thinking that meant only 10 to go. I had to break it to her that we don't know this, that we may have much longer to wait, and that no one can give her an exact time frame for potentially quite a long time. This did not go down terribly well; my girl needs numbers, facts and figures. I think we all do.

Meanwhile my boy was not impressed that the garden has become an arctic wasteland; bitingly cold wind along with freezing rain interfering with his circuits of bouncing climbing sliding. Meanie Mummy wasn't willing to stand outside and push the swing either; a process which involves tipping the entire swing frame onto its side, in order to give a little extra clearance for his feet. Baby swings are not intended for leggy three year olds with Piers. We've a larger SN swing coming at some point this week; my next mission is to persuade the apple tree to let us have a branch for it. Could be interesting.

Some schoolwork for A this morning; her set tasks whilst school is closed involve doing a load of laundry, drying and ironing it, planning a meal or light snack, or working out a weekly grocery shop, then entering it into two online supermarkets and doing a price comparison. So far, her weekly necessities include Diet Coke, biscuits, chocolate spread, and bread. It's a work in progress.

Ridiculously, our carers have all been ordered to work from home. I'm not entirely sure how this is supposed to work, however our best carer did WhatsApp A this morning in order to check in with her. Perhaps I should negotiate for her to join us over WhatsApp as I attempt to wrestle A through her shower next time; at least I'd have a witness to agree that the murder was justified.

Today in addition to being our own carer I was attempting to be our own cleaner. I did achieve hoovering the cobwebs off the ceiling. I did not achieve actually hoovering the floor; madam sensory refuses to allow the hoover anywhere near her and also refuses to move out of the room so she is away from it. Not sure how this will work with another of her Learning Objectives (and I promise, these have come from school, I have not set them myself), to clean and tidy a room. Incidentally, why clean and tidy? Doesn't it make more sense to tidy first and then clean? Or is this where I am going wrong. D enjoys the hoover nearly as much as A hates it. Or, he enjoys turning it on and running away when I take a break, and turning it off then running away when I try to use it.

Tomorrow we have a supermarket delivery. The anticipation. The wonder. What will be in stock, and what not? Exciting times.

I realised I have completely stopped looking at my calendar. There are appointments on it, but all cancelled. Now, the only fixed things we have going on during the week are Sunday's online church services. The rest of the week is fluid. If it takes us until 11 to get up and through the shower, then so be it. If we are all enthusiastically demanding breakfast at 7, then breakfast at 7 it is. There's nowhere we have to be, ever. No one we need to be ready for, ever. A message from podiatry made me realise we should have been there this afternoon (except it was cancelled). Helpful tips from the podiatry team until they can see clients again. "You should keep your feet clean and dry. You should avoid infections." Thanks, guys, I'll get right on that. No survival guide from NHS Coronavirus today. Disconcerting. Perhaps podiatry were stepping up instead?

So, another day done. Crossed off the calendar; meaningless though without an end date in sight. Just another day done.

Day 13

Church today. Last week, broadcast from an empty church, with worship team and clergy carefully two meters apart. This week, broadcast from assorted houses across the town. Church together, apart. Subtitles for the music though, so much easier to sing along to, hurray! Thinking about Noah and his family on the Ark, and interesting theme.

And of course, a birthday in captivity! Pizza delivered to the doorstep, presents somehow assembled, and untold wealth appearing in cards and e vouchers. Much virtual shopping and making of lists. Maths practice, although she doesn’t realise that.

A quieter small boy today. Cuddly and less screechy than usual. A nice respite, but always the worry, is he coming down with something? And if so, what?

And sadness. Opposite our house is a beautiful deep, thick, impenetrable hedge. Dark green, and alive with birdsong. At least 30 small birds call it home. This afternoon for some reason, my neighbours cut it back so thoroughly that it is now see-through and 2/3rds the height it used to be. And the birds are huddled forlornly on one of the few remaining branches, wondering what has happened to the nests they were so busy constructing.

Windy today ; our trampoline took a trip across the garden and landed on its side, whilst our precious trellis increased the angle of its lean to dangerous levels. I have weighed the trampoline down, but the trellis will have to take its own survival measures; now is not the time to be shopping for new fence posts.

Day 12

It's Saturday today. My children decided to mark the occasion in traditional style, waking up alternately every hour of the night so they could both fully appreciate my extra company. Reader, I did not kill either of them. Long day.

Pancakes for breakfast is our Saturday tradition, even more important now that every day keeps a similar shape. So pancakes, one girl locked into zoom chat with her friend, one boy bouncing and climbing and checking all the stones for flavour. One mother feeling particularly torn today as both children reacted to my tiredness by needing me more. It's not a great cycle.

But great joy, with the arrival of the body shop's most excellent hemp and almond hand creams. My hands are currently so shredded from all the washing that my technology no longer recognises my thumbprint, meaning that my rusty brain has to remember multiple passwords instead. But eight bastings of hand cream later, the backs of my hands are merely bloodied sandpaper, not craters and canyons. Long may this last.

My boy has a new talker on trial as of yesterday. A NovaChat 8, for those in the know. Thank you Liberator for the longer loan than originally agreed. We'd just switched it on yesterday when A started her zoom chat. D looked up at the screen, saw his friend from so far away, and hit Like Like Like Like Like on the talker. Until she started blowing raspberries, at which point Like moved to. No No. Smart boy. Current mission, prevent him from eating the straps as we need to be able to return it in good condition.

No major accomplishments today. But we all had three meals, no one injured themselves throwing themselves off the top of the slide, no one fell ill, and the house is a tiny bit tidier than it was yesterday. That'll do.

NHS coronavirus helpfully texted to suggest we play sudoku, read a book, watch TV and make a plan for the day and for the week. Thanks.

This is probably tedious to read. Read it or don't; we are all in a similar boat at the moment I think. I find it useful to write, and so, for now, I shall. but if you're reading, and I disappear, don't assume the worst has happened. Assume life just got a bit busy again.

Stay well. xx

Day 11.

More fun with Zoon. From the girls who first invented Zoom hide-and-seek, today comes Zoom tandem baking. A screen in both kitchens, and two girls happily occupied stirring and measuring and generally chatting to each other. Meanwhile two mummies, from opposite ends of the country, got to drop in and out of each other’s kitchens inbetween doing other things, each of us sharing the familiar soundtrack of the other’s daily life. Very very lovely.

Multiple phone calls today in very quick succession. I must suggest to some of our professionals that they start working their list from Z-A to break it up a bit. But whilst we remain without carers for now - and we are ok - we are pulling together a plan for Later, as and when we are not ok. So that’s good. D’s adoption records having been restricted and shut away within social services, there is nothing on A’s file to indicate she had a younger sibling also with disabilities and medical needs. This has now been rectified. Partially. But it’s a start.

A really wonderfully lovely emergency rescue package from the Rainbow Trust. Hearing that all of A’s birthday plans had been put on hold, they delivered a fabulous birthday hamper with some wrapped gifts squirrelled away safely, and some fresh doughnuts to enjoy immediately. And a very fetching worry monster. Thank you, Rainbow Trust!

And, after four days of trying, finally success in contacting Sainsbury’s to arrange deliveries. Well, partial success. We are registered, but their systems (and staff) are overloaded, so it may take 48 hours before we can actually try to book any slots. There is hope though, which is great. We have amazing friends shopping for us, but it will be great to be able to just order what we need and know that it should be coming on a certain date. And without friends realising quite how much junk we eat!

Meanwhile, thankfully, thecweather remains gloriously mild and sunny. We are all enjoying the garden (I lie. Two of us are enjoying it. The third merely tolerated it today). Slowly I am rediscovering forgotten corners of the house - we are amassing a giant pile for the charity shops once they reopen.

One day at a time. I don’t know what the future holds, but I know who holds the future. It is enough.

Day 10

Friends, are you bored of seeing just your own four walls? Today I bring you a new game, courtesy of A and her sadly way too distant friend. Zoom hide and seek (also works with FaceTime, Skype, or any other video call on a portable device of some kind). Obscure your webcam, retreat to a random corner of your house, and get your friend to guess your location based on the three square inches of ceiling or wall visible past your very close up face. Much giggling! This works best when you are as familiar with your friend's house as you are your own. And provides tantalising half images of siblings and parents who are also currently so very very far apart.

Two Zooms today; the second, a family chat to wish Granddad a happy birthday. Much planned, much anticipated, and all wider family members involved managed more or less to sort the technology out in advance. Go us! A now has plans for her own birthday, having seen that up to forty people can join in any one zoom conference at a time. Hmm. We may need extra friends.

In other, equally exciting news, we finally managed to complete the new climbing frame and slide. I say we, I mean I. I did this! I built an entire climbing frame (ok, one which arrived in kit form). Two people, two hours it said. One rather harassed Mummy, two electronic screwdrivers, a bit of unofficial lump hammering, and the better part of a week. Oh, and unfortunately some duct tape doing a slide repair before we'd even begun. But. I built it! And my son climbs it triumphantly, does a victory spin on the deck, and then slides his way down, over and over again, before racing off to do circuits of the rest of the garden and a quick bounce on the trampoline. He has even learned how to side shuffle from the climbing wall over onto the deck to come down the slide. I tell myself this skill is positive physiotherapy, and will definitely counteract the damage done by bouncing for ages in a W-sit. I'm not convinced. But, for now, it is survival. He is busy. Running, climbing, crawling, spinning, bouncing, spinning, generally wearing himself outside and no longer haunting the front door begging to be let out.

New improved advice from NHS England arrived today, with "The Letter", containing more impractical advice on how to keep A alive during this time. And some helpful tips I might not otherwise have thought of, such as keep eating and drinking well, and think about how you will get your food and medicines whilst you cannot leave the house. Thanks, guys. But, usefully, the original advice "You must stay inside. You must not leave your house. You may sit by an open window" has been expanded to include "You may go out in your garden" so we made her. And she enjoyed it.

Grolly is not enjoying the peaceful empty streets. Her crowd of worshippers have vanished, and she is not impressed with having to make do with us. Always, she is there waiting to greet our carers in the carpark - and yet now the carpark remains empty. She is there to wrap her body around the children racing to school in the mornings, and those coming home in the afternoons. And they are also absent. Those few who do come past our door cannot stop to fuss her. Strange times. She has decided it is best to watch the children's antics in the back garden from the safety of inside, not being a fan of the small one's enthusiastic grabs.