Living with Cerebral Palsy 🍋🍋

Friday, 22 May 2020

The Coronacoaster

Hi everyone! Hope you're all managing to stay safe out there! Someone sent me this today and honestly, it couldn't have summed up my feelings about isolation any better!! Its disorientating, frustrating, annoying, serene, calm, happy, sad, mind-numbing, scary and enlightening ALL AT THE SAME TIME. Who knew one day "Groundhog Day" wouldn't just be a film and that someday we would all be starring in our episode of "Black Mirror"?  
The first few weeks were actually ok. We are in complete self-isolation to protect Elin which means not even going to the Supermarket. It's beyond strange to not see another human being for days on end. We are incredibly lucky to have family support dropping off our shopping and picking up Elin's meds etc. We kept to a good routine with Elin (who has largely been AMAZING throughout) and of course there was all the lovely weather to enjoy in the garden. There were group zoom calls with family and friends, everything felt a bit of a novelty. We can do this!! We have so much to be thankful for and no real reason to complain, we've got this, right?!!??
Everything has felt a little trickier for the last couple of weeks. I REALLY miss seeing everyone and social interaction. Worse, I can see Elin is now really missing it too. I've no idea what she must be thinking and I feel so guilty at how mundane her days must now seem without the stimulation and hustle and bustle of school. She's had a few dystonic days which have been physically difficult and tiring but largely she has adapted very well,  I can just tell that she is essentially getting bored. I hate that the virus has taken away the progress she was making in settling in at Secondary school, which had so worried us for so long. I hate that she is already getting worse with her sitting and I'm so worried about how much ground she will have to make up when she gets back to school and a much more structured routine. I hate that she is missing everyone she loves without knowing why.
When I actually see friends again I'm pretty sure I am just going to cry over them and if hugging is permitted I won't be letting go. It wasn't too bad at first, with phone calls and Whatssap and group video calls and so much kindness and thoughtful gestures to remind us of how amazing people are in a crisis as if we didn't know (special mention to some local friends who did a drive-by the cottage with some little treats and a cheese parcel because I mentioned on whatssap that we had run out !!! You can't do lockdown without cheese). But can these things really be a substitute for seeing those we love in the flesh in the end?? It doesn't feel like it right now. I want to SEE those I miss. I want to hug Elin's big sister.  I haven't see my own sister, who works in a children's hospital, since February 28th. My oldest mate (since Nursery school!) had her first baby and I'm not likely to see him until he's way past the beautiful newborn stage. I won't see my grandparents in their care homes for likely months. I just MISS EVERYONE. Nothing feels normal and nothing feels right. 
This is the part of the post where I'm supposed to turn things round and say how I know how lucky we are to all be well, that we are grateful not to have work issues or other burdens to be dealing with. That we have grown as a little family during this time, somehow finding patience where they might have been irritation and learning even more about each other than we ever thought possible. That we haven't spent this amount of time straight at home with Elin since she was 12 months old and it feels good to get this quality time. That Paul and I are experts in being stuck inside, from all those dystonic early years, that we know better than anyone how to play the long game, stay positive, take each day as it comes. That one day we will look back on this time so so fondly, when it was just us, and wish with all our might we were back here.
All of that is true.
But it's also true that some days you just can't turn the blog post around, and that's ok. It really is. I have to stop being in the mindset that I should be feeling grateful/blessed/lucky 100% of the time, it's impossible. The lockdown guilt needs to go, everyone is coping with things that are hard to them personally, we are all in the same storm but we are most definitely not all in the same boat. In short and I know this is a massive cliche- but it's ok not to feel ok about this. And some days I really, really don't feel ok about it. It's hard. I'm sorry if that makes me weak but I'm finding it hard. Also, despite the absolute heart ache of missing everyone and the frustration that important projects are still unfinished (more on that in another post!) groundhog day gives you a lot of time to think and dwell. I've found myself obsessing over what happened to Elin again, I've found being locked down with her has somehow drawn attention and focus to what she has been through and what she was robbed of and how she has been affected. I've found myself thinking about what it would be like being locked down if Elin wasn't disabled, if she was the 'other' Elin, the one that slipped away when she was born. There is nothing to distract from unwanted thoughts, no friends to meet, no social gatherings to enjoy, no work to be doing. IT'S HARD. 
However (ha you knew I couldn't resist making lemonade just a little) as I've mentioned, being parents of a child with profound and multiple disabilities give you a good grounding for when the world unexpectedly implodes. It turns out, we have got this, we really have. I just need to give myself permission to admit when I'm having a crappy day without feeling guilty about it. I hope that you can too. Just be kinder to yourself, stop with the guilty feelings about how you "should" be feeling, or what you "should" be doing. Find one thing each day to make you smile. I've got an ace card to help with this. I have my girl. We've never been prouder of her. She is the rainbow in our cloud during this isolation time. So how can we be too morose about what we are missing, when everything we really need is here???
Please enjoy these pictures of Elin to cheer you up if you need it today. If you don't, brilliant! Maybe find a way to cheer someone else up instead, if you are able. Good luck with the Coronacoaster going forward everyone, because as we are all finding, it certainly is one hell of a ride!

(A personalised song message from Elin's big sister Caitlin who I think, like Dorothy with the Scarecrow,  Elin misses most of all)



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