Monday, 6 April 2020

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.

Sunday, 5 April 2020

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.

Saturday, 4 April 2020

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. 

Friday, 3 April 2020

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.

Thursday, 2 April 2020

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.

Wednesday, 1 April 2020

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.


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