Grab a cuppa, or a glass and settle down its a long one ….
I love writing and I love reading. I was heading for journalism after I left school until life took me down a totally different path but it’s always been a ‘what if’ of mine. Mind the way our mainstream media is now there is no way I would be working as a mainstream journalist! No gagging orders on this lady!
I really should have started sharing my thoughts at the beginning of this whole weirdness. What a wasted opportunity! Not that I think my thoughts would have been of any use or help to anyone! I was trying hard not to live in fear whilst adjusting to total isolation, working from home, starting a new job, and the worst bit trying to home school the crazy 5 (now 6) year old. An achievement back then was just making it through the day!
In those first few weeks we had mothers day, both girls birthdays one of them turned 13 and the other 6. These were closely followed by my mums birthday and then my husbands birthday. Celebrating in lockdown was interesting. Home made banners, cards, desperate attempts to try and get flour and icing sugar to bake cakes! Moonpig became overwhelmed with orders and stopped ! Even Amazon went a little crazy in those first couple of weeks! We couldn’t risk going to the shops, we weren’t just in lock down we were shielding.
Remember those weeks? People fighting over pasta and hand gel. No toilet roll anywhere and panic buying was the norm. Good luck if your freezer broke down because they also went out of stock!
Seems like a lifetime ago right?
By the way who even remembers April?
There was a definite process I went through in the first few weeks. Lets call it my COVID 19 five key tests! I am afraid that they are not led by science, they haven’t been discussed by SAGE and Mr Cummings has certainly not had any involvement in my 5 key tests ! Feel free to insert your word for that shambles in here.. (*****)
Anyway here they are, and just like any good Pastors kid it is laid out like a 5 point sermon. All points beginning with the same letter (Dad would be proud)
- Avoiding (the issue, not people but I can’t think of an A word to mean denial!)
The final test would be Accepting but I am not there yet. Thats for another blog.
1. Avoiding – otherwise known as burying ones head in the sand
When the corona virus was in its infancy I was terrified! I would read about how it would only affect older people and those with underlying conditions. That wasn’t a comfort for me my first born has underlying health conditions and his respiratory system is compromised. He is one of those ‘vulnerable’ ones.
It was as if this invisible illness was sweeping through our communities. As the days went on I would read of fellow DMD families taking their sons out of school and going into this scary lockdown.
I was trying to keep life as normal as possible for as long as possible plus my head strong ‘vulnerable’ 17 year old still wanted to go to college and go out to his usual activities. How could I stop that when schools were still open and life was carrying on around us.
It felt alien to me to confine him to the house. So we went into a crazed routine of washing our hands whilst singing happy birthday, disenfecting everything that moved, and coughing into our elbows. My hands aged well before their time! We would be ok with a good dose of bleach right? (not ingested obviously)
I avoided the whole thing and buried my head in the sand for a few days.
2. Acknowledgement – I might add it was a forced and scared acknowledgment
Four days before the official lockdown happened I totally lost my nerve and withdrew him from college. The bleach and constant hadnwashing was not providing enough security. Everytime he coughed I became convinced he was about to die on me, I had dreams of me having to fight for a ventitlator for him and then watching him left in a hospital corridor to die as he wasnt ‘worth’ saving. This was the stories the media were portraying to us at the time. I suddenly realised why other families were going into lockdown.
Two days later, thankfully, the decision was made for us regarding the girls and everything shut down. I didnt have to take them out of school, or stop any of their much loved activities. Boris stepped in and closed everything down albeit probably a bit too late. So lock down began for us all. Gav and I pitched up offices in the home. Then we had the official shielding letter, telling Zak he could not leave the house he could just sit by an open window. Reading that letter along with the daily briefings escalated my fear what the hell was this virus?! The invisible enemy stalking him, waiting to pounce. We stopped all support , support that has been pivotal to his independence, crucial to our management of his condition and support that we had fought hard for, over the years, to get in place. There was to be no one in and no one out! Valuable physio sessions stopped , activities stopped, all support gone other than a box of food that came from the council. (Fabulous if you like PEK and baked beans)
I remember one night sitting thinking to myself how ironic this situation was. It wasn’t the first time as a family we had faced social isolation
Families with disabled children as well as disabled people often feel isolated. We have always had issues with access, opportunity and acceptance. But for now the whole world it seemed was isolated and activities no longer accessible. It was the first time the rest of society was going through a similar thing with us.
At first it was a novelty, no commute was a huge bonus for me. Although there are now days where I would welcome that 40 minute journey to and from work, it was good thinking space and time to get rid of the pressures of the day. Now I come out of the Mums cave straight into world war 3 at the kitchen table.
The girls loved the lazy mornings doing school in their pyjamas. Admittedly the first couple of days I literally woke up, switched the lap top on and didn’t even get dressed until I went for a run later that day.
The ‘vulnerable one’ was loving it mainly because he had no early starts. We saw a change in his routine he was staying up really late because the college day had not exhausted him and like most other 17 year olds he wasn’t getting up till lunchtime. Thankfully Gav is a nightowl so didnt mind doing the bedtime shift!
The slower pace was very much welcomed and there were definitley some positives amongst the negatives. There was no rushing around, no school runs, no constant trips to the leisure centre, no really late nights doing the stuff I hadn’t been able to fit in through the day. I was sleeping better, eating better and running more.
We had meals as a family and because Gav was home all the time I didn’t have to cook! That’s a big bonus right there. Don’t feel sorry for him he loves it ! He cooks and I clean. It’s a marriage made in heaven. The passing ships phrase became a thing of the past as I no longer had to adjust my working hours around childcare and his shifts.
I started to plan in my head all of what I could do with this extra time. Instead of the commute I could run in the morning. Let me admit now, 10 weeks on and I’m still saying I’ll get up early tomorrow and run. I am so not a morning runner!
During this time I really wasnt very productive in anything outside of work and I felt guilty for that, I am sure you know where I am coming from. I think it took me until week 8 to sort through two draws and deep clean my cooker top. I would see all of these amazing people on my social media platforms who were decorating, learning new things, being fantastic teachers, doing amazing tik tok challenges. I was wasting my spare time on my phone playing the angry birds bubble game!
I was working way more than my usual hours trying to prove that I could do this new job and I could still be as effective working from home even with all the commitments I had! I work for the most amazing organisation and I have no idea why I put that amount of pressure on myself because they certainly were not. Thankfully I have now found a better balance.
4. Angry – No surprises there !
It was around the 8 weeks mark we saw a big change in ‘our vulnerable’ one
Life as we have all lived it since March is alien for all of us. This is true whether you are affected by a disability or not. This is not normal! It is, as our ‘esteemed’ politicians describe, unprecedented, it is scary and there will be huge consequences for years to come in our economy, health and society.
I fear that the most affected by the aftermath of COVID19 will be those who have always been on the edge of society, who have been isolated due to disability, health, depravation
But around week 8 I began to understand and work through why this was feeling so alien. We were being told to shield for his safety but not to panic as there was going to be a safety net put in place by the government. Although you would only actually receive that support if your name was on the list. If you have a disability but not classed as extremely clinically vulnerable to be honest you have been forgotten about. There are no priority slots for you, no food parcels, The Care Act is slowly being eroded and support that has been relied on has been reduced.
I digress .. back to why this shielding was beginning to feel uncomfortable.
Since the Duchenne diagnosis 16 years ago I have advocated for inclusion for him, advocated for him to have support to be able to live his best life. We have worked hard to ensure he is not isolated, segregated and written off because of his diagnosis. There have been many battles along the way, many tears but also many victories and a lot, a lot of joy. We have lived with the attitude of making the most of the time, ensuring he can do as much as he can whilst he can. Living under the shadow of a life limiting, time ticking condition makes you want to make memories and live life. We always have in the back of our mind that we don’t know when this would be the last Christmas , last birthday, last holiday.
His muscles are wasting so we can not afford to waste time.
We can not relax and think it’s ok we will always have next summer or we can do this another time. We may not have that time.
So to have to shield, isolate for 12 weeks or more is not what we want to hear or do. We have memories to make, he has a life to live and this feels like wasting time. Time that he does not have to waste.
We are hearing and reading words that I would never describe him with words such as vulnerable , shielded, isolated. Apparently these are all now positive things because it’s for his safety.
Over the last few years a lot of work has been done with him in developing his independence. He would go to the shop himself, go out and about in our local community, visit his Grandma. I worry that these months of being shielded are going to erode that much fought for independence.
Then we have the practical side of things – we have always had a mantra ‘use it or lose it’ when he fell and broke his leg a few years back it was vital he kept some movement or the muscle would irreversibly weaken and the second fall did just that and he lost the ability to walk. This will also be true for the muscles that he uses to drive his wheelchair, the stamina, muscles and posture needed to drive around are different to those he uses just to sit.
I agree that during this time we have all had to make sacrifices for the greater good and to keep us safe ‘stay home, protect the NHS, save lives. I have no problem with that and I’m beyond grateful to everyone who has played their part.
However I’m becoming increasingly uncomfortable with the way it has been accepted that those in this extremely clinically vulnerable group have to carry on in isolation, indefinitely with no thought as to how their lockdown can be eased. This is the bit that makes me angry, the fear that has been put into us to even step out of the house.
I know it is not just me feeling like this. I have spoken with a few families over the last couple of days and we are all slowly moving from the fear of the virus to the fear of the affects of being shielded.
5. Achieving – laughing, trusting and thriving
So here we are at the end of week 10. I wont use the word acceptance I am not really accepting of the situation. I have moved from avoiding and burying my head in the sand, to acknowledging there is an issue, adjusting to what we need to do to keep safe, working through the anger I feel of the robbery of time and memories and slowly moving out of that and recognising the achievements.
I’m not up there with those who have learnt five new languages , got countless CPD certificates , gone on a DIY spree or taken up a new sport. I already run (just still not in the mornings ) so I’m ahead on that one haha !!
But I did manage to clear two sets of draws, revamped one set and then got myself a mums cave! I’ve learnt a couple of tick tock dances and played some funny jokes on my teenager and husband. There is the first achievement – Laughter !
We sacked off the whole strict isolation a couple of weeks ago when we saw the changes in ‘the vulnerable one’s’ mental and emotional health. I received a bit of judgement for this. I have never been that bothered about people’s judgment and I have never really liked strict authority but this did upset me. I was made to feel that if I allowed him out he would die and that would be my fault.
I spoke to his clinician and she said use common sense, social distancing and he will be fine.
So we began to ‘let him out’ and in line with everyone else he could go for daily exercise. The first time he went out he was scared stiff !
He’s now done over 15 miles in the last couple of weeks using the amazing wheels our amazing community got for him last year and his mood has improved. Second achievement – trusting my gut.
He has carried on with his college modules throughout this and he’s
actually been able to surprise his tutor with what he can do using his own equipment which enables his independence a lot more. Instead of having a scribe he uses Siri or Cortana to write for him. Achievement 4 will be him finishing the first year of college and getting the award.
We have discussed with him the risks of going to shops and of having some of his PAs back he’s understanding of this and he’s a lot happier now he is not confined to the house and has had some socially distanced visits from his PAs.
His diagnosis has never confined him and we are working hard to ensure that this situation will not confine him. This means using some creativity to ensure he stays safe. Late night trips to the beach, off road walks through the cornfields to avoid the busy paths, treasure hunt car drives and PAs delivering kebabs through the gate. His support planner is doing his person centred support plan via whats app and we have taken a delivery of new slings with the handover done via a zoom type app with the OT!
He has done lots of facetime calling, playing online, as well as takeaways and Amazon shopping. That’s all still making new memories and making the most of life anyway right ? So that’s the third achievement – making the best of a really shit situation.
And that brings me to the end of week 10. Well done if you are still reading this! We are trying to focus on achieving and not anger.
However with the daily briefings telling us how the lock down is beginning to ease but the shielded told to carry on shielding and wait for further guidance it’s not that easy!
This week Boris did kindly give a shout out to the shielded saying ‘Well done chaps you’ve helped save the NHS’ Yes Boris that is because we recognise the true value of the NHS, we rely on it. You dear chap are a bit late to that party. Are you still trying to sell it off after your brush with death?
Let’s have a clap for shielders next week shall we 🙂
This week I have become ever more concerned at the way the media and society at large are ok with this group being shielded indefinitely whilst the rest of the population are able to see their family , have BBQs meet up with friends and life slowly begins to open back up.
Sheilding my vulnerable one is becoming more and more like imprisoning him and that is not for his good.
Somehow we need to find a way out of this. A way that will enable us to reduce his risk and our fear, a way for him to live with some freedom and not be imprisoned looking out of the window at everyone going about their lives. Because that is everything we have worked so hard to avoid!