Distancing Diaries. Day 45

Day: 45. After a fair bit of consultation, A and I decided it was definitely Thursday today. It's hard to tell. Mood: low. Slow going. My friends and I, we get through the difficult times by lighting torches. Planning things to look forwards too. The big things, holidays, weekends away, perhaps even coinciding respite so we can run away together. The littler things; a night's respite, an afternoon walk, a day playing hooky with both children in school. An hour alone in a cafe, a haircut. These are the little things we hang onto when times are tough; just another few hours and then respite. Another night and then school. Another week and then we will be together again.

And all this has ended.

It's not the toughness of every day, it's the knowing that tomorrow will be the same. And tomorrow and tomorrow and tomorrow.

There can be phone calls, sure. And video calls. And there are wonderfully kind friends and organisations sending so many lovely things; friends dropped in a picture made by their children this morning, with a home made bookmark and a pipe cleaner bracelet and a lovely dear little bar of soap. Sweet, kind, thoughtful. Different friends dropped a survival package on the doorstep yesterday, with toys for the boy and magazines for the girl and gin for me, lovely. There are flowers in my windowsill, there are smiles and waves as people pass by. We are not forgotten. Statutory authorities are checking up on us too, making sure that we know we are not forgotten. We are among the lucky ones who get a regularly food delivery slot, and we get 99% of what we order, week after week after week. This is all good. Very good. Friends keep us ticking over, collecting glasses to be mended, finding glue sticks and antacids and all the things we forget to add to the shopping list. We have very good friends.

And yet.

Coronavirus briefing yesterday, a question was asked by the parent of a child who is, like A, shielding at the moment. And Matt Hancock answered initially with a load of positive noises about how children with EHCPs would be supported within education once the schools go back. Before admitting that, no, children who were shielding would not be going back to school any time soon; would not in fact be going anywhere at all until there is a vaccine. We knew that already really; the risk doesn't disappear just because twelve weeks have magically passed since we got The Letter, informing us of our shielding status and our new normal. But we were halfway through our twelve weeks. And even though we knew really it wouldn't change after that, it felt significant, that maybe there was a bit of hope for things to be different.

Not so.

And so we trudge on. Time takes on a new meaning. A has her own internal clock, informing me to the minute when she expects her next cooked meal to be placed in front of her. It's probably a good thing; I'd lose track of mealtimes as well as days otherwise. People knock at the door, and we stand a safe distance apart as they collect or deliver; today we traded three face masks for half a dozen eggs and several yards of knicker elastic, destined to be made into more masks. These moments are precious; a three minute conversation in the rain where we used to have several hours over coffee. D cannot understand why he is no longer allowed to run out of the front door, why people knock but never enter, and why he can never leave. He drags me to the back garden instead, where we do some stomping circuits on the rain-wet decking, and send showers of spray and damp blossom (and please no hairy caterpillars) flying by swinging in the apple tree. He likes the back garden. A has not left her table in the sitting room except to go to bed or for personal care for a week now. She has decided she no longer likes the garden. I make a note to order her an extra vitamin D supplement since she insists the curtains are drawn if there is even a hint of sunlight approaching her table.

Post today. D's autism assessment has been postponed indefinitely. A cannot have her eyes checked. Urgent gastroenterology and dietician appointments have been delayed. Blood tests cannot take place. Dentist is looking unlikely. Podiatry has stopped. A multitude of other appointments have been cancelled, turned into phone appointments, or pushed back a few months with the acknowledgement that they will likely be pushed back further. Routine ones, new referrals, nothing (hopefully) life or death, but all appointments designed to keep both children ticking over and as healthy as they can be. And yet within all that, D's preschool boosters are due, and of all the appointments we have, these should apparently not be delayed. Well they're going to have to be; I am not taking him to the GP surgery this week or next.

And now the house is silent at last. Children sleeping sweetly, and we can hope they might both last the night. My work is done for now, until she needs turning and he needs milk. But for now, peace. Tomorrow is another day. Tonight I can't see how it can be any better, or really any different. But it might be. Let's hang onto that.

Days 40-42

A weekend. Saturday means pancakes, so pancakes it was, a reminder of the time when Saturday was our one unrushed morning of the week. We could have pancakes every day now, but we stick to differentiating weekday from weekend, marking our relaxation, with carefully rolled, chocolate spread filled, delicately lacy pancakes. Well, A and I do. The boy grazes, A’s usual, on a fine mixture of frozen peas, dried pasta, Pringles, and cat biscuits.

Deliveries! Seed potatoes and carrot seeds. Much planting. More caterpillars in the death bucket. Fun with the hose; my boy loves water. More deliveries! A packet of school work for A to gloat over, shuffle, sift into piles, file away carefully untouched, review, make a plan for what order it should be worked through, organise into plastic pockets, but otherwise leave entirely untouched. And just like that, another day done.

Sunday. Weekend, so, pancakes. Church live streamed - this works so well for my lovely girl. She can turn the volume down, fiddle with her playdough, doodle in her notebook and still pay attention to the service, without being overloaded by everything else happening at the same time.

Roast chicken. With bread sauce. And everything else. My girl voluntarily clearing the table so that we can eat together. My boy grabbing chicken slices from my plate to squish through his fingers, stomp on, reject very thoroughly before returning to his beloved dry pasta and frozen peas.

A church youth zoom session for A, and then the sudden legalisation by her, at 4pm, that she had not had any of her music or her iPad all day up until this point. Don’t think that’s happened since I pulled her out of school. A quick music chill then a friend zoom too, whilst my boy and I bounced and swung and introduced more caterpillars to the death bucket. Tired of dodging falling caterpillars, I took the saw to the apple tree. Not the whole thing, but it no longer has branches at head height. I shall regret this in the Autumn, when none of the apples are in easy reach. But it works for today.

And then today. Monday. A picked a small piece of work from her folder and did in fact complete it with a little bit of prodding. D found the improved head height under the apple tree made for greatly improved swinging too. And I found a little butterfly which kindly paused long enough to let me admire it. Mum called by for a socially distanced delivery of tulips and donuts, always appreciated, but not by D, who cannot understand why I block him from running down the ramp in exuberant greeting. And very lovely friends and committee members from a local parent support charity dropped around a survival pack - pens and magazines for A, toys for D, and a very mini bottle of gin and tonic for me. Totally unexpected and really appreciated.

Days 38 and 39

More caterpillars in the death bucket. More sycamore in the garden waste bin. More caterpillars in the death bucket. Food into the boy. Food into the girl. Laundry. Cleaning. Mopping. Caterpillars in the death bucket. Attempted speech therapy with the boy. Coffee. More coffee. Caterpillars in the death bucket. Climbing stepping spinning squeaking. Caterpillars in the death bucket.

Rinse. Repeat.

Day 37

An attempt at video link speech therapy today. Partially successful; D enjoyed seeing his therapist at least, and demonstrated his current lack of intentional use of loaner VOCA nicely.

Big excitement, the arrival of a new steam mop. Big disappointment as I refused to let it be a toy...

And more glorious sunshine. More caterpillars to be drowned in the death bucket. More flowers coming out. More swinging, sliding, climbing falling bouncing and another day done.

Day 36

We should have been at a Multi-disciplinary Assessment for the boy today. A very long awaited appointment to look at his development, his communication, his general overall uniqueness, and to see which, if any, boxes he fits into. We were expecting him to be recognised as autistic. Instead, we are here, still at home, hospital remains closed to outpatient appointments like this, and whilst there has been zero communication, I assume a new date will be sent out in due course. We’ve only waited 18 months since people finally agreed to put us on the waiting list.

Today I have also had to reject the offer of a telephone based CAMHS appointment. Again, we’ve only waited two years for this urgent referral; what’s another few months?

And a phone call from social services, asking me to nominate two alternatives for if I am suddenly unavailable to care for my children due to getting ill myself. Thanks. Shall I make my will too?

Poisonous caterpillars abound, and I am now covered in brown tailed moth rash. This is irritating. And D cannot understand why I am unwilling to push him on his swing under their nests any more.

So that’s the downside. Meanwhile, the garden remains unaware of its toxic invaders, and remains as beautiful as ever.

Day 35

Today was not such a good day.

Started by blasting D’s bed with his breakfast, when syringe detached from extension tube. Such fun. Smoothie and weetabix all over his clean clothes, bedsheets, and precious beloved blankie.

Strip boy, change boy, strip bed, toss in the wash.

Caterpillar catastrophe compounded by someone helpfully chopping them down in daylight and leaving the nests untreated so all the poisonous wee beasties escaped into random corners of the garden.

Much squishing and stomping and squelching and squirting later, caterpillars won and I gave up and came inside.

So did they.

Cleanclothes. Hot wash on once more.

D spied his damp blanket hanging up and grabbed it, took it through to his bedroom, and had a poonami like no other.

Blanket back in wash, toothbrush sacrificed to clean the piedro boots and assorted bed toys binned.

On inspection, further poo turned out to be hiding on the trampoline.

Caterpillars still creeping everywhere.

Several showers, five loads of washing, a full Brown Ben, and a deeply thankful Tia. For bedtimes and new starts in the morning.

Day 34.

Trouble in paradise. What I’d dismissed as a mummified apple turned out to be rather wriggly this afternoon. And on closer expection, the tree proved to have at least five of these wriggly infested tents of caterpillars. Brown tailed moths apparently; the best thing to go with them is burn the eggs in winter. Being a bit late for that, I’m going to have to somehow chop them down overnight wearing protective gear. Fun.

A peacefully lazy day apart from that; a bit of pruning, a long nap for my boy on the trampoline, and a late night for my girl watching the One World concert.

No service from our church this week, so we went to visit a friend’s church online instead. Saved us the eleven hour round trip we usually take to visit them, which was nice. But right now I’d drive twice that for the privilege of being able to sit beside my friend and contain the boy in a row of chairs rather than letting him have free rein in the house whilst we follow the service on a screen.

One day.

33

Life looks very different with a physically active boy. Dancing in the rain, but deep upset that clothes get wet. Ways to be active inside. A sentence I never thought I’d say: “Stop chewing the toilet seat!”

32

Zoom baking again this, chocolate brownies and a banana cake here, a Victoria sandwich up at the other end of the country.

A small boy eating frozen peas and dried pasta at my feet, a teen weighing ingredients behind me, and a friend at the other end of the country with a switch activated whisk for her son, and a cloth to wipe away her daughter’s sticky fingers.

Time passes. Rain falls; my boy is not happy about this. He loves the puddles but cannot understand why he sticks on the slide.

This morning, more time in the garden. A small forest of sycamore, hacked down to fence level (don’t worry; it’s a double fence and the trees grow in no mans land between the two) and then further chopped and forced into the garden waste bin.

Day 31.

A delivery from Helen House today; toilet roll, tea bags, and a Spirograph which has finally shaken A out of her “I’m not going to do anything except stare at the iPad” funk. And a Lindt bunny I decided the children didn’t need. Yum.

One blackberry bush planted in the hope it will grow up and along our fence. Ground cleared for a pear tree, which will not arrive just yet.

My boy has taken to grafting his right leg behind him. Hard to say whether it’s because he’s enjoying the sensation of shuffling against different textures, or if it’s his tibial torsion worsening. It’s not an injury and it isn’t bothering him. And we’ve had a phone consultation but not much we can do, since going up to hospital to get it checked out properly isn’t currently an option. Spoke to the duty physiotherapist today who will contact his own; hopefully by the time she’s back in work on Monday it will have resolved itself. Meanwhile, we are leaving his Ponseti boots and bar off overnight to see if that helps correct it without causing his feet to start turning in again instead. Great it if works, but increased mobility overnight is not necessarily a good thing in a child with a sleep disorder.

And a plan (of a kind) for tomorrow, care of A’s evening procrastination.

day 30

Some days, most days in fact, someone else says it better.

No blessed Charles here, but with the lack of aeroplanes and traffic, the birdsong is all that’s carried on the air (side note: where are all the children playing? I know we aren’t the only family living here). My garden, my sanctuary, my gilded prison. But I have sky, and my mind’s eye. And an English teacher who told me I’d be glad to have studied the great poets when I was older.

BY SAMUEL TAYLOR COLERIDGE

[Addressed to Charles Lamb, of the India House, London]

Well, they are gone, and here must I remain,

This lime-tree bower my prison! I have lost

Beauties and feelings, such as would have been

Most sweet to my remembrance even when age

Had dimm'd mine eyes to blindness! They, meanwhile,

Friends, whom I never more may meet again,

On springy heath, along the hill-top edge,

Wander in gladness, and wind down, perchance,

To that still roaring dell, of which I told;

The roaring dell, o'erwooded, narrow, deep,

And only speckled by the mid-day sun;

Where its slim trunk the ash from rock to rock

Flings arching like a bridge;—that branchless ash,

Unsunn'd and damp, whose few poor yellow leaves

Ne'er tremble in the gale, yet tremble still,

Fann'd by the water-fall! and there my friends

Behold the dark green file of long lank weeds,

That all at once (a most fantastic sight!)

Still nod and drip beneath the dripping edge

Of the blue clay-stone.

                                           Now, my friends emerge

Beneath the wide wide Heaven—and view again

The many-steepled tract magnificent

Of hilly fields and meadows, and the sea,

With some fair bark, perhaps, whose sails light up

The slip of smooth clear blue betwixt two Isles

Of purple shadow! Yes! they wander on

In gladness all; but thou, methinks, most glad,

My gentle-hearted Charles! for thou hast pined

And hunger'd after Nature, many a year,

In the great City pent, winning thy way

With sad yet patient soul, through evil and pain

And strange calamity! Ah! slowly sink

Behind the western ridge, thou glorious Sun!

Shine in the slant beams of the sinking orb,

Ye purple heath-flowers! richlier burn, ye clouds!

Live in the yellow light, ye distant groves!

And kindle, thou blue Ocean! So my friend

Struck with deep joy may stand, as I have stood,

Silent with swimming sense; yea, gazing round

On the wide landscape, gaze till all doth seem

Less gross than bodily; and of such hues

As veil the Almighty Spirit, when yet he makes

Spirits perceive his presence.

                                                        A delight

Comes sudden on my heart, and I am glad

As I myself were there! Nor in this bower,

This little lime-tree bower, have I not mark'd

Much that has sooth'd me. Pale beneath the blaze

Hung the transparent foliage; and I watch'd

Some broad and sunny leaf, and lov'd to see

The shadow of the leaf and stem above

Dappling its sunshine! And that walnut-tree

Was richly ting'd, and a deep radiance lay

Full on the ancient ivy, which usurps

Those fronting elms, and now, with blackest mass

Makes their dark branches gleam a lighter hue

Through the late twilight: and though now the bat

Wheels silent by, and not a swallow twitters,

Yet still the solitary humble-bee

Sings in the bean-flower! Henceforth I shall know

That Nature ne'er deserts the wise and pure;

No plot so narrow, be but Nature there,

No waste so vacant, but may well employ

Each faculty of sense, and keep the heart

Awake to Love and Beauty! and sometimes

'Tis well to be bereft of promis'd good,

That we may lift the soul, and contemplate

With lively joy the joys we cannot share.

My gentle-hearted Charles! when the last rook

Beat its straight path along the dusky air

Homewards, I blest it! deeming its black wing

(Now a dim speck, now vanishing in light)

Had cross'd the mighty Orb's dilated glory,

While thou stood'st gazing; or, when all was still,

Flew creeking o'er thy head, and had a charm

For thee, my gentle-hearted Charles, to whom

No sound is dissonant which tells of Life.

Day 29.5

Seriously grumpy teen inside drove me mostly outside again, and weeding and organising this big bed. New garden tools last week; a particularly viscious root bent fork and snapped trowel. I’ve not used shears to dig out roots before but so far, so strong. My chirpy friend on the fence appreciating the newly exposed soil dwellers; me, less so.

I now have identified gaps and spaces for new plants. A blackberry is being delivered on Friday; everything else must wait until May.

A Sainsbury’s delivery today, everything we asked for (and nearly an extra crate of someone else’s loo roll and potatoes), but worryingly, no new delivery slots available at this time. Back to checking at midnight until we find one. And these are the ways we shape our days.

Day 28

4 weeks done.

This is good.

Today, we achieved ironing. And I weeded yet more sycamore out of the garden. Frustrating that right when I am finally forced to take a real interest in sorting the garden myself, is just the same time as all garden centres are forced to close, and nurseries supplying them are composting all their plants as they cannot convert to detect sales and deliveries.

Oh well. We have seeds arriving at some point. And plug plants. And compost. Multiple deliveries from multiple suppliers, as they come into stock over the next few weeks and months. I can’t rememver what I’ve ordered now, so it’ll be a nice surprise when it comes

Meanwhile the fig is flourishing (so are the sycamores), and so are the children. Another day done. Something accomplished. Other things just survived. But we did, and we will continue to do so.
Thank

Day 27

Five weeks ago, we went to church. I sat next to my friends. We worshipped, prayed, took communion together. Afterwards, we had coffee together. 

Four weeks ago, I wasn't in the service but was helping out in Sparks, our group for the under 5s. Coffee was forbidden, so by the time I'd finished helping to clear up, the church hall was empty, deserted. 

And just like that, that was the end of church as we know it. 

Easter Sunday today. And the church building silent. Our service streamed from assorted houses across the parish; a huge amount of work and top marks to the technical team as well as everyone in front of the cameras. A simple service, church together across all the congregations, encouragement to break bread together apart in our own homes, and the pleasure of sharing bread with Amana, when she refuses communion at church. 

I should stop there. It all sounds positive. But the truth is, it was church through tears. I can make a victory cry about all of us singing separately in our own homes, raising the roofs together to make a joyful noise heard all over the town. But oh, it hurts. To know that our church is empty, to listen to the silence and know that no bells are ringing out across the town and across the country. Our church is very young. But bells which have tolled for centuries are silent. Churches with flagstones worn low by hundreds of years of faithful worshippers are today home only to their mice. This virus has accomplished what world wars did not, what civil wars and reformation and dissolution could not, and has emptied every church and every chapel in the land. 

And I know I should be rejoicing that it is Easter, Resurrection Sunday. I should be standing firm in the hope and promise we have in our Lord Jesus. And I do stand amazed at what He has done, and I am so deeply thankful that we live in this Sunday world, not the bleakness of Good Friday nor the waiting of the Saturday in-between. But I can't fully rejoice today. I want to stand shoulder to shoulder with my friends and my family, raising the roof together as we sing our victory songs. I want to kneel at the altar and drink wine from the common cup, the same cup from which I received my first communion, and from which I have sipped faithfully for the last 31 years. I want to touch another adult human. 

And I know, compared with many people, I have nothing to complain about. All we have to do is stay home, and we are being supported by a small army of friends and professionals to do just that. Frontline friends are facing hideous things, all day long. People are suffering loss, unthinkable loss, financial hardship, destitution and desperation. And I get to complain that I can't go to church properly, and I can't have a hug. Readers, I am that petty. Today, it matters, and it hurts. And the children are in bed, and I can allow myself to feel it. 

Tomorrow I get to pick myself up again, pick them up again, and spend the day jollying everyone along through another day. We will find things to laugh at, things to appreciate, things to celebrate. We will connect again with Zoom and facebook, and be deeply thankful for the technology which makes this bearable. We will smile at people through our windows and wave at neighbours as they move their bins and walk their dogs. But just for this evening, let me drown in what we are missing. 

Day 26.

This is my new happy place.

Getting up close, I can nearly imagine I'm in a green woody parkland somewhere a hundred miles from home instead of a hundred inches from our back door. I share it with some bumble bees, a handful of hover flies, and three (so far) little lady birds. All of whom were very shy today. 

Sit. Breathe. Ignore the insistent beep from the washing machine, listen to the birdsong and the gentle hum of distant lawn mowers. Imi's fountain dripping gently for the first time this year. Sun on my face, baked heat bouncing off the brick walls and warming my skin, soothing my too clean hands. Rosemary, lavender, mint, thyme and oregano scenting the air, crushed beneath my feet and plucked by an eager toddler. 

Forget the busy busy. Forget the timetables and the endless rounds of care, medicines, meals, therapies. Forget the exhaustion. 

Sit. Breathe. Listen. 

Day 25.

Another crazily warm day. Shorts for my girl, not for Captain Bruise, although I’ll have to find him a stash of bigger summer clothing at some point I think.

Quiet. Calm. Lying on the trampoline at one point, watching the motionless clouds in a clear blue sky. No vapour trails. Not even the tiny traces from impossibly high. Instead just a sky do achingly beautiful a stack of cherubim and seraphim would not have looked out of place. A carefully stylised country house ceiling, not an actual sky.

Swapping photos of the sunset with a friend. So thankful that whilst we are living at such a ridiculous distance, we still share the same sun and the same sky. On this day we have been together for seven of the past eight years. And the eighth? We were together last week instead. So many memories of the children in the same spaces growing quietly older. A gap, of course, when Imi no longer featured. And then a very welcome addition.

The photos tell us this warmth is not unseasonable. We would appear to have had co distantly good weather this week; more reliable than during our August camping trips.

But not this year. Our girls Zoomed. Our boys got on with life. And we had a brief video chat. It’s not the same, it can’t be. But it is still very good to see each other, to stop just for a minute or two and have an adult conversation.

I dislike this separation. But it is Good Friday here today. And we have Hot Cross Buns, and we have tradition, and we have Hope. Which is more than the disciples had. We will get through this. And some of it will even be fun.

Day 24. Thursday

D decided to throw a party for one last night. He extended the invitation to the rest of us, but we chose to decline, and to lie fuming at the noise instead. Irritating.

But another beautiful glorious sunshiny day. Silent. No agenda, no visitors, alerts and reminders on my phone calendar serving only to highlight the world we have stepped away from for now. I say no visitors; a doorstep chat with my parents, trading home made hot cross buns for precious eggs whilst keeping our safe distance, body blocking D who cannot understand why the door is suddenly open and yet he cannot walk through it.

Three grumpy members of the family this morning; this grumpy mother abandoned her two grumpy children to go and sit in the garden. Two grumpy children chose to ignore the sunshine and stare at screens until the batteries went flat.

A roast chicken induced truce, and a better evening, thankfully. I am hugely grateful for our outside space.

Feels like nothing much got done, and yet we roasted a chicken. A ticked off more of her ASDAN award by clearing a table, hoovering and mopping a couple of floors. D managed to enjoy his bath, get dressed down to his boots, and then step back into the water. Fitting, to have extra clean feet on Maundy Thursday. I tweaked our poor fig again, and tried for the second time to wire one of the branches to a conveniently placed snail. This is not usually a success.

12 weeks, they say we need to keep this up. But no one knows when to count these twelve weeks from. The date of the letter? The date we pulled A from school? The date the last of the vulnerable receive their letter (three weeks later, many people are only just getting the news)? Or, more likely, is twelve weeks just a number pulled from the air in the same way the initial three week lighter lockdown was for everyone else? Keeping score is not helpful, I suspect, and yet, what else is there to do? I am not counting down to freedom, but instead marking off the days we have survived. Not survived without corona, but survived this strange new life. 24 days since I last touched another adult human being. 24 days since I walked over the fields to drop D at preschool. 24 days since I last drove the car, spent time without children, had the freedom to wander at will. It is a very pleasant prison here, and we are surprising ourselves in our combined family ability to make it into a more pleasant environment day by day. But still, the lack of freedom chafes. 24 days since I was able to have an uninterrupted phone call or conversation with another human being. 24 days since I could sit down without being asked for something. 60 days at the very least before we can think about doing any of these things again. But some will be gone for a year or more I think, and some will have gone forever. I can't think that far ahead. But still, we tick off the days. 24.

Day 23.

Today I attended the funeral of a friend’s son. A young man. Way back when the internet was young and I was just starting out as a foster carer, I joined a bunch of email groups and nIRC chat rooms, in an attempt to meet other families with disabled children. I joined anonymously, as we were encouraged to do in the days before Facebook. And in the very first group I joined, a woman instantly recognised my Y, and me. And there she was again in the next group too, with her son the same age as Y, and briefly in the same educational setting, although her son had taken a very different path through school in the end. A young man determined to live an independent life, despite his utter dependence on others. Who lives that independent live, hard don, until he suddenly got ill, and just as suddenly, couldn’t live that life any longer.

He should have had a great room full of mourners. There should have been people from all parts of his life playing tribute, raiding memories, celebrating his life and marking his loss.

And instead he had a precious few officially sanctioned mourners, with wider family including his sibling and grandparents unable to attend in person. And so we attended, via live stream, whilst life here rudely refused to be interrupted even for the brief service he was granted.

A funeral on my phone and a toddler on the trampoline. Pain and beauty. Loss and new life. Grief and the garden.

Strange times.

Day 22.

I’ll not lie, today has been a long day.

An early start, fitting around our carer’s own arrangements (zero complaints, we will take what care we can get and having her first thing means she comes to us clean and can leave us and head home for a shower before taking over from her husband for the day. It works. But nevertheless, an early start.

A sleepless night. Friends with CV. Our prime minister in intensive care. Not my choice of PM, but that is irrelevant; praying for a full and swift return to good health for him and for everyone else. We do not need a leadership contest and scrambling for power over the next few weeks.

Much swinging in the garden for my boy.
Much refusal to contemplate doing anything other than stare at a screen from my girl.

I escaped them both to set up a new wire lattice for our fig tree, aiming for a little more symmetry and hoping it won’t obscure the window. It’s got a fair way to go yet though.

Long term goals. 

I do apologise for the formatting here; blogger dislikes my phone these days. 

Mostly, a nothing much accomplished day today. Leftovers a-plenty so no cooking needed. One load of washing more of less processed. And Mr. Sainsbury kindly delivered us a big pile of food. Most excellently, he upgraded our Easter eggs from tiny hollow empty ones to extra mega huge ginormous beast ones. Less usefully, he decided that an acceptable substitution for 2x4 pints of blue milk would be 2x2 pints. Maths, anyone? So I can either wean D off half his nightly bottles (oh how I’d love to), or find a willing minion to top us up. And no yeast, no bread flour, and no dried fruit. So hot cross buns are going to be particularly challenging on Friday. I’m thinking hot cross cinnamon pancakes, thick, puffy, American style pancakes (although maybe not if D’s milk is rationed), studded with the raisins I do still have, with a gentle butter pat cross. Maybe. A won’t eat them whether they are hun or pancake, so maybe I’ll settle for toast and the promise of better things to come? 

Tomorrow we have no plans. But we need to do something to make it different from today. We may attempt an Easter tree, or perhaps an Easter window. 

For now though, rest. My window is open, but I hear nothing. No late night chats from people returning from the pub. No foreign language students propping up the fenceposts setting the world to rights. No cheers and waves of music from the football club. No cars, no motorbikes, no clank of bottles as the pub sorts recycling. It is the same silence of a heavy snowfall, but in the warmth of the Spring. Dislocating. 

Day 21. Monday

Is anyone else having difficulty remembering what day of the week it is? I've just spent ten minutes trying to join a scheduled zoom meeting, before it finally dawned on my that today is not Tuesday.

A productive day, though. Weeding, sycamore murdering (how did Zacchaeus climb a sycamore tree? They seem most insubstantial), thistle digging, fence fixing, and in the absence of our wonderful hospice volunteer gardeners, an attempt to hack the grass in the back garden down with a pair of rusty shears. My back will not thank me for this later. And I'm not planning on doing the front that way; it will just have to take its chances until we can move freely again.

Honeysuckle is now wired to go up the fence not across the grass. Oregano and thyme are trimmed to manageable sizes. An unseasonable big daisy thing has either survived the winter unscathed or else decided it is August already. A number of plants I thought were weeds have turned out to have roots in a neat square "grown in a nursery" style. Oops.

I gave up when I realised the dried leaves I was clearing from the last corner were in fact a rather angry toad. There will be time enough tomorrow.

My mission; hide my fences. Train the ivy, the honeysuckle, the jasmine, to grow up against them and disguise cracked wood with delicate shades of green and evening scents. I have ordered brambles to fill in some gaps, and hope my other shrubs will grow tall, unfettered. If we are to be under house arrest for the foreseeable future, we will make it as gentle a prison as it can be.

The downside to this garden frenzy is that, unchecked, A chose to spend the entire day watching Full House on Netflix occasionally rolling a piece of play dough out flat then squashing it up again, and graffitiing the number 15 on her arms in Sharpie. She tells me that tomorrow she will do things, but she needed a day off as it is the holidays now. We shall see. So much for yesterday's plan to bring her projects outside and work all day at the garden table. Again, there is always tomorrow.

At least by staying indoors, she did not notice my first job this morning - cleaning cat poo off the trampoline. Not an experience I am keen to repeat, but deeply thankful I found it before Dylan had his first bounce of the day.

Day 20.

A hint of normality, as we had a carer here to help us get ready for church. A masked, aproned and gloved carer, true, but still, familiar eyes over the familiar struggle to enforce basic hygiene on a reluctant child.

A truly balmy day, warmer outside than in; it even tempted A out to join us, until 4 sirens in a row had her scurrying for cover. But precious indeed to sit outside with her, to keep each other quiet company whilst watching D flicking the daisies and wrestling with the giant daffodils. Our daffodils are monstrous this year, taller than I can remember.

Live-streamed church again, ever more technically proficient as the weeks go on. Two short verses to carry us through the weeks ahead; Jesus wept. And, Rejoice Always. That fundamental dichotomy that anyone who has experienced great loss knows all to well; the ability to laugh through tears, to know the Comforter as we know the joy too.

I am tired today. Silly mistakes - nothing serious, but relying on A as my external memory to keep me on track and get everything done in some kind of order. She’s a good memo pad.

Day 19.

Saturday today. Traditionally the one day of the week where we have no carers, no alarm clocks, nothing fixed in the morning ever, so we can all take our time to start the day. Pancake day too, a recurring weekly feast to mark the difference from school and church days. A generally takes advantage of this to sleep in until 9 or 10 am. But lack of school (more, I suspect, the lack of commute) means she is less worn out by Friday night, and so by 7.30 everyone was awake with pancakes on plates, and the prospect of an empty day ahead.

We should have been loading the bus and trundling down the M4 until it ran out, then trundling along the smaller roads until we ran out of land and were at our lovely seaside home. Next year?

And so, instead, a quieter but similarly shaped day to all the other days so far. A silent phone as all professionals have retreated for their own weekends being the only difference. That, and the chance for A to shout through an open window to her friend our neighbour.

Time spent outside. Time spent inside. Cleaning and hoovering and hoping to polish all the germs away. A refining her script, D excelling himself by combining stones and cat food in a particularly gross kind of Chubby Bunnies contest.

Beautiful warm sun; I pace and star jump around the garden until D is annoyed with me, grabs my hands and pushes me onto a bench to sit still for a bit. Tulips popping up everywhere. Giant daffodils, snapping under their own weight, and miniature daffodils, half hidden by larger greenery. Blue flowers, yellow primroses (unless they are cowslips?), hints of leaves forming on the apple and fig trees, and birdsong. The distant hum of lawnmowers, and one motorbike, shockingly loud in the absence of regular traffic.

A book recommendation by a friend, and a brief escape into a different world. Nice whilst it lasted.

The news stays incomprehensible; I have switched it off. Taking a Sabbath from reality, holing up in the garden and concentrating even more than ever on the fact that we are ok today.

And in the evening, a boy who is tired, but who cannot settle. Who needs to stay connected even as he drifts off to sleep.

Trust. Thankfulness. 

Day 18

Another day done. Numbers nationally and worldwide incomprehensible; news now needs to be switched off for A's peace of mind, which is probably better for me too. To quote the teenager formerly known as Little Fish "We just need to get this whole coronavirus thing finished and then I need to get back to school." Yup, that's all. I'll get right on it.

She spent most of today writing a script for a new Friends Episode: The One Where Amana Visits. I'm impressed; careful use of large font and it's now five pages long, although I cannot convince her Joey would be more likely to say "How you doin'?" than "Hi guys how are you all?" Still, she's arrived, Monica and Rachel have gone shopping, and she's headed over to Central Perk with the rest of them to meet Gunther.

Someone told her it's possible to duo Friends tours of New York. Not now, obviously, but I think she's making plans for a very very expensive trip at some point in the future.

Today we tried to open a bank account for her. After having been assured we could do everything online, we were stymied by the first bank's insistence that we just "pop in" to the branch for the final checks. Nope. Next bank, my own bank, locked me out of my own accounts four times in half an hour, before conceding I was who I said I was, accepting the relationship, but then refusing to allow A's passport to be acceptable photo ID. And requiring further photographic proof of identification, helpfully suggesting a driver's licence. For a 15 year old. Helpful. Not.

But still, we nearly managed to open the account she's been waiting for for a couple of years now. We nearly completed one piece of schoolwork whilst the boy napped. And I nearly managed an entire row of crochet. I did manage to take delivery of a replacement slide for the climbing frame, disinfect it, and screw it all into place and tighten up all the other screws which seem to have worked slightly loose with use. So that's something. And there will always be tomorrow for the rest. And tomorrow, and tomorrow, and tomorrow...

We are slowing down. One piece of written work over the course of the day is good enough. There is time to run laps in the garden with my boy, and time to just sit with a coffee as he sleeps (oh yes, that's why we didn't manage to do anything productive during his nap). Time to appreciate the many many tulips waiting to burst into flower, and then sit and watch as one opened and shared its beauty. Time to refill the coffee cup, and come back to twenty open tulips. And time, a few hours later, to see all the tulips tightly closed again, hiding their secrets for another day. Life may be passing us by right now, but time has come to rest here. Pooling around us, swirling around so that at one moment we are all three up and dressed and ready to be on the swing by 7,30, and yet a few minutes later it is time for lunch.

This evening about now, I should be collapsing into an armchair beside my equally exhausted friend, raising a glass to each other for having finally completed the marathon bedtime routine, she having also accomplished the dreaded Friday evening journey 288 miles south to us, both of us ready for our Welsh holiday in the morning.

Instead she is in her kitchen, alone, making suppers for her precious boy, and I am horizontal, alone, writing words on a computer in an attempt to give shape to some of the thoughts spiralling in my head. Our girls zoom daily, but it doesn't compare. And yet, what are we being asked to do? Just to sit tight. We each have accessible houses with decent outside space. We each have the internet, local friends to help out, and the all important Vulnerable Family Sainsbury's delivery slots. If this is war, it is a very strange kind of war, or at least our part in it is. We are shielded, behind an invisible barrier, 2m wide, and are least likely to be infected by this unwelcome invader With friends and family who are genuinely putting themselves at risk multiple times per day, in order to help others and keep this world going, merely being asked to step outside the world for a while should not be a big ask. A friend mourns her child. Another nurses her husband. And I grumble because I'm missing a holiday and a bit of company.

This too shall pass.

Day 17

Had to set an alarm this morning. Well, I say I had to set one. I set one, but it was unnecessary, D having decided to wake up with the birds and invite the rest of us to celebrate the new day with him. Yawn.

A carer, with full PPE. Full PPE turns out to be apron, gloves, and a face mask. So not that different to every day shower wear, apart from the mask, and the need to put it all on just inside the front door before walking any further into the house. Twenty years of having carers, and for the first time, I was unable to offer a cup of tea. It's not drinkable through a mask. We did the social distance do-si-do; she retreating down the hallway so I could pass into A's bedroom, me stepping back into my room so she could get through to the bathroom; D weaving his confused path through all of us and proving why we cannot risk taking him for a walk outside even if I did feel comfortable leaving A alone in order to do so (I don't).

Dreadful news this morning of the death of a friend's precious son, not from CV, although I'm sure its malign presence in the hospitals and community didn't help. And now an impossible task for them, to begin to plan a funeral from which most family members will be excluded. Unthinkable.

Fear, I think, from A; joining the many dots and beginning to understand why it is the government say she is extra special and needs extra special looking after over these next few months. Not that she admits to fear. But a certain extra rigidity of thought and habit, a tenseness and unwillingness to bend, a reluctance for company and an outright refusal to go to bed; these are the signs that something is on her mind, whether she is hiding it from herself as well as the rest of us or not.

And merry oblivion from D, who pulls us out of gloom and worry and firmly back into the now. Tugging hands and pulling me into the garden, inviting me to chase him up the climbing frame, to match his bounces on the trampoline with my step aerobics on the decking, to push and push him on the swing, watching as the branches sway with his weight. Attempting to calculate the force on the branch, and how many swings it will take before he is too heavy, before he pulls me back again into the present, puts my hand on his tummy for a tickle, and fills our garden and our hearts with joyous giggles. He lives completely in the moment. This is, I think, why he finds the separation of preschool so unbearably hard; I have gone away and he cannot comprehend that I will be back, only that I am not here. It is the same in the small hours of the night when he wakes, and is inconsolable until I lug him into my own bed, where he pulls my arm around him, snuggles tightly into my armpit, reaches up with his hands to twist them into my nightie, to ensure I cannot disappear. But when I am present; joy. When I match my steps with his, and together we stomp stomp stomp up the decking ramp and round the corner, step up onto the concrete and down again, then race our way back to jump on the manhole cover and make a different noise, then, all is well in the world and it cannot be any other way. Not even the presence of a grumpy teen hovering in the kitchen muttering about how we are going to be out there All Day and what's for lunch (and a refusal to come into the garden because there might be a wasp. Or a duck), not even this can spoil the joy which comes from just entering this little man's world and resting in it for a time. His joy can even capture the grumpiest of teens, if she can be persuaded to take the music out of her ears and watch him for a moment or two.

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.