Kate - Our lockdown experience
Kate Perkins, mum to Jayden, has written about her experiences in lockdown:
Today is Day 77. Also known as Week 11. Also known as 1850 hours since I went into this lockdown with my beautiful, but very demanding, 12 year old Duchenne Warrior, Jayden.
I naively went into this believing we would be back out again within four weeks. My cupboards were fully stocked, my intended home schooling schedule was on point and I was determined to make it all a big adventure for us while we rode out the storm. Little did I realise that was just the tip of the iceberg, and reality would be much different...
I've laughed, cried, screamed, cried a bit more, felt despair, felt trapped, felt cut off from the world, not knowing when I'd be able to even hug my Mum, my boyfriend, my friends again. I've been forced to confront my own grief at losing my Dad to cancer in January instead of keeping my head busy with work. I've worried how I can go to work when I'm trying to shield Jayden at the same time and if I don't get paid how am I supposed to pay my mortgage in the long term?
This experience is an exhausting rollercoaster. Mentally, physically, emotionally. Exhausting. I started out with the best of intentions, as I'm sure we all did. Breakfast, get dressed, school work, reading, baking, blah blah blah. That lasted approximately two weeks (if that actually!), until we slipped into a feral existence of Netflix, PJs and not being sure even what day of the week it was anymore.
As a single parent to Jayden I'm used to being good cop AND bad cop. Normally my amazing Mum plays the role of 'second in command' good cop and this gives me the much needed support and respite I desperately crave from time to time. A few hours here and there so I can do things just for me: meet up with the girls, spend time with my boyfriend or just be able to switch off for a little while and recharge my batteries. This is often what keeps me sane as any Duchenne/ ASD/ SPD single Mama (or Daddy!) knows only too well. This has obviously not been possible since lockdown so I've been on (what feels like) a permanent bad cop shift, without my good cop sidekick for back up.
Physically, Jayden is suffering since lockdown began. He has a standing frame at school which he was going in every day, to help keep his spine straight and prevent compression fractures. He hasn't been at school for 11 weeks, so when his physio said in week two of lockdown that he could get a standing frame delivered to the house I jumped at the chance. It was delivered no problem, but they had forgotten to include a charger and holding straps so it's still sat there. In my front room. Never been touched. Countless phone calls later and I'm informed the vital parts may take another 12 weeks to arrive. His legs are already tightening up and he's never tolerated gaiters, so I think by the time those parts eventually do arrive, his leg contractures may be at such a point that the standing frame will be pointless anyway. The frame is his best fighting chance against the need for possible spinal surgery in the future.
Physically, I've been running on empty. I don't have carers in for Jayden, never have. I don't feel we're 'there' yet. But looking after him 24/7, with no school and no Grandma to break up that caregiving responsibility, is relentless and is taking it's toll. I tend to not use our ceiling tracking hoists which we had installed at home last year, and just transfer him myself when necessary. Partly because I haven't been ready to face that next step in our Duchenne journey but also because it's such a precise and laborious exercise, I could have moved him myself ten times over in the time it takes me to hoist him once. My body, however, has had other ideas and after pulling my back trying to put him in his chair this, combined with the daily pain of living with stage 4 endometriosis, forced me into using the dreaded hoists for the first time. I felt like an enormous failure that I could no longer even move my own child from his bed to his chair on my own and this set me off on another downward depression spiral, which I have experienced on and off, since Jayden's diagnosis in 2016.
As the weeks have turned into months I find myself getting more and more mentally depleted. Jayden is autistic and has sensory processing issues as well as his Duchenne, so his world is very black and white. He loves something or he hates it. It's the best day ever or the worst day ever. I'm the best Mummy ever or the worst person in the world. Being on the receiving end of these extremes can be soul destroying and trying to reason with someone who is rigid in their thinking is very draining. As time has gone on in lockdown I've found Jayden's meltdowns have become more frequent and lengthy. He is definitely missing his friends and his Grandma, and it shows. My patience has definitely been tested to infinity and beyond, and I pick my battles carefully. The uncertainty of when lockdown will be lifted for those in the shielding community is something I try to push out of my head daily as it massively sets my anxiety off. I have been having weekly CBT counselling session over the phone to try and ease my anxiety and OCD.
With each passing day we've kind of fallen into a strange little routine, bumbling along as best we can. Fast forward to today. Day 77. The antidepressants which my doctor double dosed earlier on in lockdown, have now kicked in and I feel in a much better place than I did a few weeks back. I'm sat here, in the garden, trying to draw on the positives of this whole experience. I'm definitely not the same person I was on 19th March when we first went into isolation. I'm fatter for starters! But I also think I'm more patient, resourceful and capable than I ever believed I could be. I'm better at DIY than I knew (Dad would have been proud!), and I have even managed to read a book, cover to cover, for the first time in 3 years! Me and Jayden have a tight bond anyway so we probably couldn't get much closer but I know for all his meltdowns, he has actually liked being home. He's not a fan of school at the best of times. He loves being at home, with me, with our dogs, with his computer and all his little home comforts.
And THAT'S what I keep telling myself. However hard it gets, however bad today may have been, however many times I've closed my eyes and wished I was on a beach somewhere... Jayden is ok, Jayden is safe, Jayden is strong and he is here. That's what this is all for. Shielding him to keep him safe. However long it takes.