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)



Friday, 20 March 2020

What a wonderful world.

Hi all! Well, theres nothing like a global health pandemic of epic proportion to provide a bit of inspiration for a blog post is there??!!??
It's been ages since my last post. I can't really articulate why I just haven't felt the need to blog lately, I love blogging but I only write when I feel completely compelled to, sometimes a post will just sort of flash up before my minds eye and I know I have to write it. If that doesn't happen, I try not to push myself to write because I know posts will end up sounding contrived and I don't want that. I guess I just haven't had that flash of inspiration for a while.
However, it's fair to say I can imagine the whole world shutting down has provided many of us with reason to emotionally reflect more than usual and of course I am no exception! Predictably I've been something of an emotional wreck!! WHAT a crazy time!! I think I was living in a little bubble until the weekend, when it slowly began to dawn on me just how bad/serious this situation is. Elin's school had been fantastic in their efforts to keep her class safe but we took the decision to take her out of school on Tuesday. Home schooling it is!! But I  think one of the most difficult things about this slow realisation of what this means for our country is how much we are worrying for other people. Elderly/vulnerable relatives and friends, those with underlying health issues, those working in the entertainment industry or gig economy (Caitlin and most of her friends), those taking their exams, those trying to pay rent or mortgages with no income, those who will now be incredibly lonely for a long time, those having operations and appointments cancelled, homeless people, those in care homes like my grandparents who can no longer receive visitors, our friends who are teachers trying to keep schools running for children of key workers who have minimal staff and resources, the health and wellbeing of Elin's little friends...the list goes on and on. For someone prone to worrying and anxiety it's not the best of times and sleep has evaded me all week and I know it will have done for many of you, too.
Of course, my most acute worries are much more closer to home. Elin. She is in the vulnerable category. The only way I can deal effectively with this worry and still function is by holding onto the positive and luckily, that is something I know how to do in abundance!! Elin is healthier than she has ever been. She has a strong chest with no history of infection. She has never had any respiratory issues. She has never needed Oxygen. She is four years without a hospital admission. We are in an extremely positive position. We are taking every sensible precaution possible, isolating her to protect her (aside from the odd walk for fresh air -so lucky where we live we can go for a walk easily without seeing a soul!)  and also holding onto the fact that thus far, children don't seem to be getting it. In short, we are trying not to panic.
The thing that really moved me to write this blog post today though, was the way events like this can so amazingly bring humanity together. That's what I'm trying to focus on. The posts and videos online of people cheering each other up, helping each other out, volunteering to help those less fortunate etc etc have had me in tears. More than this though, on a personal level, we have had soooo many offers of help since the weekend. I can't thank those enough who have texted us to check that Elin is ok and say that should we need to self quarantine, they will bring us what we need. In some cases it's been people who we don't even see very often, as life so often gets in the way. Yet they thought of us, they thought of Elin. This is proof of what we have always known, that when push comes to shove people are good, humanity is kind, there are many more good hearts in the world than there are people shoving old ladies over in Tesco to get the last loo roll. I was let into the club of people who know this, who see the world on a different plain of importance on the 22nd July 2008 and I have never left. A world where these amazing children of ours unite us with their brilliance.  I'm not trying to pretend everything is perfect and wonderful all the time, regular readers will know that. But lets make some lemonade here.  There has never been a time of crisis either personally or generally where we have felt alone. You see us and we love you for it. Thank you.

Some pictures of Elin working hard in Ysgol Holly Cottage so far to make you smile:-)
Nobody knows more than us the importance of good health, I guess that's what we have to try and keep in perspective in these massively troubling and worrying times where it also feels like everything good or fun has been cancelled and we might not see friends and loved ones for weeks! Please just stay safe everyone and keep in touch :-) Also please remember no matter how well you feel we all have a communal responsibility to stop this thing its tracks. Be wise, be cautious, be sensible, be selfless. See you on the other side.

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