Day 109

Why today? Why not? Today isn’t a particularly special day, nothing distinguishing it from any of the previous 30. We had our fabulous morning Carer to give my girl a shower. I have cut out four heart shaped pieces of bread for her to make peanut butter sandwiches, my boy has had his bleach bath in front of the washing machine and I am on coffee number three.

From Monday, we are allowed to form a bubble. A shielding bubble, a month after the same right was extended to non-shielding single adult households. On Tuesday, our bubble friends come down, and our two households officially become one. We will have company, indoors, without having to maintain distance.

It has been a very very long 109 days. In the last month, we have gradually lowered our shield a little. We have had respite nurses. I have had 2.5 hours without either child. We have started taking short walks again, and found a mostly empty country house garden. We have had a few visitors to our back garden, and are deeply deeply thankful that the weather has been so kind to us. Each child has had one hospital visit.

Enough to see that the world is still out there. But enough too, to see how the world out there has changed. We have another month safe inside our shielding bubble, before we can ease ourselves back into this strange new world. We won’t be racing to rejoin it. A is determined she will not be entering shops. She has declared for herself safe and unsafe zones and people. Whilst we would love to be amongst the first worshippers once church reopens, realistically, we will be live streaming for a good long while.

And for today, we are here. My daughter inside, thinking about an art project which will no doubt cover table and floor with more cut out bits of foam and paper, glitter and glue, without ever reaching a finished product. But it is the process, not the product, she enjoys. My son and I outside, he in the swing, I enjoying the heady scent of jasmine, honeysuckle and lavender as I swing him. We have no particular aims for today. My goals for the day are very small - to finish it with everyone in bed, fully fed, and the house at least no more trashed than it was this morning. The children are happy, we are all well, and the end of this phase of living is close. It is enough for now.

Day 78

We are still here, still plodding along.

New guidance means that, as of yesterday, A is officially allowed to leave the house. She hasn’t yet. But this morning we have decided to allow one of our respite carers back in, someone to take charge of D for a few hours.

I’m not sure how it’ll go. They aren’t allowed to take children out anywhere, A doesn’t wish to go anywhere else, and D doesn’t do social distancing. At the moment, the plan is that D and his Carer will be ceded the back garden, A will bunker down as usual in the sitting room, and I shall attempt to hide somewhere so D doesn’t spend those precious hours chasing me.

We shall see.

More changes afoot; A is very excited that McDonald’s will be reopening this week. Part one of her much delayed birthday treat may finally happen. Yesterday Grannie and Granddad joined us For afternoon tea in the back garden. D showed off his climbing skills, his bouncing and his swinging. A visited at the bottom of the garden for a short while, before retreating inside to stay safe. And we three sat; Dad pulling his hair forwards to hear, me inching my chair backwards to maintain distance, but oh, the joy of just being able to sit and chat. The luxury of conversation with a shared view, not a split screen with faces staring out from each corner. Precious.

Today’s mission: to ease A out of the house and round the corner into a largely empty car park, so that she and I can clear the bus out in preparation for its service tomorrow. I think it’s fair to say we are both a little apprehensive about this. But we need to do it.

We won’t be driving anywhere (unless we get word that McDonald’s has opened up today), but it was March last time we opened that sliding door and took a look inside the bus. March the last time A went further than halfway down the front ramp. March since we last locked the front door from the outside. March the last time anyone else took responsibility for D for a few hours.

Things aren’t going back to normal for us. We won’t be going back to school or preschool any time soon. Shopping is still forbidden. People are still delivering prescriptions, collecting food, making telephone appointments. It feels increasingly surreal, increasingly dislocated from reality. I look at pictures of people on beaches, people walking through our beautiful (and very empty) town, see places begin to open up again. And our excitement is that we might manage a drive thru McDonald’s. Or we might not. This virus lurks. I can’t help but wonder if the freedoms we are now being offered are perhaps more to do with encouraging people to move on from stories about a certain political advisor.

And so we will take tiny steps. We cannot walk from our door without straying too close to other people. I cannot create a 2m forcefield around my daughter, and I cannot easily prevent my son from licking lampposts and chewing gravel and generally touching and tasting anything in his reach. Well, I can, but not whilst also letting him walk and run. So, if anywhere, a short run to McDonald’s it is. We may drive to a prettier car park to eat it.

I find now I need to manage my own anxieties as well as my daughter’s. We examine the facts. I look at the sources. I reach my conclusions. These are different to some of my friends. That’s ok; we are different people. My decisions are not a criticism of theirs; have have simply come to different conclusions about what is right for each of us at this time. Some have children back in school, some have more care, some less, a few have drawn up the ramparts and buried the key, and others have moved in with friends or family for the duration. And that’s ok. We balance risk. Covid19 is a risk, but so is isolation and exhaustion. For now, A and I are on the same page, agreeing the same limitations and freedoms. But it chafes her. And there may come a time when she wants more, needs more, and that will be a difficult time for us. But for now, she is awake early and her eyes are sparkling at the idea of leaving the house and heading just around the corner to our bus. That’ll do for today.

Day 61

Someone asked this morning for the last “normal” picture on my phone. It took me a long time to find. It’s nothing special, just a moderately grumpy teen holding tight to a set of reins, which are containing a bouncy boy as he jumps around on the pavement.

We were taking a quiet evening walk to try to de-bounce him in the hope that he would sleep.

I realise though; that wasn’t our last normal. It was the last time we took him out with his reins. They, and his buggy, have been unused now for two months. But it was far from normal. We had had church without fellowship in the morning; everyone melting away as soon as the service was over. And that evening was the first live streamed church service, the first baptism by drenching rather than dunking, and the last church service with a congregation in the building. Not a normal day.

I need to step back a day or two earlier for that. My phone shows me pictures of our town, the river in flood, the geese up close and personal. And I remember walking into town with my boy, casually walking into different shops, assessing the fashion, debating whether I had time during his nap to grab a haircut (and deciding against it; oh how I regret that decision now!). Walking quickly through the park to avoid him wanting to get out and play. Sorry, D, if I’d known it would have been your last chance, I would have given you free range until we risked being late for your sister’s bus. Grabbing a coffee to drink on the quick march home.

Two months now, more, since my boy saw a playground. Since I had a takeaway coffee, or sat in a cafe with my friends two months since A was in school, with no return in sight.

It was a couple of days after pulling the smalls out of school that we took our last walk. A socially distanced one to survey the traffic, to hunt for the Scania lorries which make my daughter smile. And the came The Letter informing us that A must shield, and so our world shrank.

I walked out to our garage yesterday. The farthest I have been in those two months. Said hello to our bus, abandoned in the car park. Attempted to enter the garage but couldn’t for all the stuff just sitting in the doorway. A struggle for another day. Shut the door, padlock it, Walk back to the house quickly for fear of encountering another human at the pinch point where social distancing would be impossible. Back inside, shut the door, lock the door, wash hands thoroughly. And comfort two children one distraught and the other furious that I had dared to disappear for a few seconds.

There are more photos in my camera. From the day before, when I had had respite. Real, actual, respite. Other people in our house, entertaining my boy, whilst my girl was at school. I had walked around our reservoir. Found some cormorants and wide blue skies.

How quickly it all vanished.

And now it is Saturday. And Saturdays follow their own relaxed rituals here. Always, there are pancakes. Always, there is me nagging A to clear the table. Her one job of the week; it would take ten minutes but she drags it out from Saturday morning until Sunday lunch time, and is constantly surprised that I find this annoying. Today though, it fills the day. My boy grabs my hand and pulls me outside. The caterpillar rain has reduced to random sporadic caterpillar hail; enough to need to watch him but febenough that I can risk removing my hood. He swings. He bounces. He pulls my hand and snuggles my arm, kissing my wrist as we march, up and down the ramp. Step up, step down. Two steps across the grass, two steps up to my bench. Twirl. Two steps down. Two steps across the grass, five steps to the potato patch. Twirl. Run down the ramp. March up the ramp. Step down. Two steps across the grass to my bench. And repeat. It is a figure of eight in around 80 steps, and my steps have worn a path across the grass and over a flower bed. Repeat. And repeat. And repeat. I cannot go far from my front door, but my garden paces add up until I am marching 5, 6, 7 miles in a day, between pouring drinks and watch A not drink them, and extracting stones from my boy’s mouth.

We have time. Time to notice the garden spring to life, time each day to debate whether the green shoot is the bulb finally germinating or the ever present ground elder. Time to stop and watch the bees and moths flit through the cat mint and lavendula. Time to mirror my boy’s trampoline bounces as I step up and down on the decking. To grieve what we have lost and to be thankful that it is so little compared to some. To acknowledge the beauty in the plants around and mourn for the missed bluebell walks and lambing. To sit and bounce with my boy, and to marvel at his communication skills. And to ponder both the amazing coping skills of my girl and also her incredible ability to procrastinate and stall.

And tomorrow we get to do it all over again.

Day 56

Stay Alert, apparently. 

Staying very alert here, as we have had apocalyptic showers of dead poisonous caterpillars. New twist; having seen none for the past few days, it seems as though they had died out. Hurrah. Until high winds today dislodged then from the leaves and branches where they’d curled up to die, and rained them down on us as we attempted to use the garden. It seems a little unnecessary. 

Phone calls, news filtering through, clarifying and then contradicting Boris’ speech yesterday. Instructions to register A as shielded for a third time. Hospital, GP, County Council and the Vale all recognise her as shielded and all keen to make sure we stay that way. But the official site, which has sent us several letters stating that we are shielding, is still failing to recognise our details. Annoying. We appear to have been deleted. Let’s hope it’s third time lucky. 

Meanwhile, guidance finally on returning to school. No surprise that shielded children won’t be; as itbturns our, not will any siblings who cannot practice social distancing. So that’s both children at home until there’s a vaccine, not just one. I’m struggling with this. Carrying on as we are until September is daunting enough. But trying to continue to be D’s full time 1:1, educator, speech therapist, occupational therapist, and nurse whilst also continuing to be everything A needs, with now no end in sight, is daunting. Right now I feel as though I’m letting them both down. There is good in each day, but we are only really treading water. 

Day 50

Another day done. Verbena plantlings turned up in the post. I planted them, the boy took pride in stomping them down firmly into the ground and generally obliterating them. It passed the time. 

Our weekly shop arrived, I emptied most of it into the kitchen, then promptly emptied it out of the cupboards and onto plates for hungry children. 

Laundry was processed. Towels from the bathroom into the washing machine, dried, put back into the bathroom, used and promptly back into the linen basket. 

Beds were emptied, made, and will shortly be unmade and filled again. 

Cups and plates and cooking implements were removed from the dishwasher, put into cupboards, used, and put back into the dishwasher. 

Floors were hoovered and promptly covered with discarded crisps and cat food. 

The garden was covered with men replacing our upstairs neighbour's boiler. This did not hamper my boy's keenness to be in the garden, making for an interesting socially distant dance in an attempt to prevent him from climbing their ladders onto our roof. 

50 days. It feels significant somehow. But whilst we have no out date, we have nothing to count down towards. Are we halfway there? Barely started? 

Day 46.

Mood: better! Brighter. Sunshine always helps. Mood unsquelched despite the discovery that the caterpillars (or hairy danger noodles, Christened by a friend and how they shall henceforth be known)  have moved into the front garden and are crawling up the brickwork and taking shelter in the bin handles. Not good news at all, and at least thirty needed squishing. But I will take danger noodles and a brighter mood over a safe garden within the slough of despond.

No major jobs tackled today, no tidying, no planting. Minimal hands on therapy of any kind and only minor prodding towards anything vaguely educational. But everyone fed, everyone watered, all in bed at a reasonable hour and no major tantrums from any of us. That’ll do.

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.