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?!!??

Hmmmm.

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)

xxxxxxxxxxx

A Manual For Heartache

                                                    

Years ago I read an article about a condition which is prevalent in parents of severely disabled children, 'Chronic Sorrow Syndrome' , which really resonated with me.

Chronic Sorrow is the presence of recurring intense feelings of grief in the lives of parents or caregivers with children who have chronic health conditions. It runs alongside your everyday life, you may not be fully aware it's there a lot of the time. It’s like a virus running alongside a programme on your computer. It’s each time you have to attend yet another medical appointment, its each time you watch your child struggle or worse lie in a hospital bed for days, each time a friends child reaches a milestone your child never will. Its seeing children the same age as yours in the street and feeling the massive chest blow of comparison. Its filling in endless forms, its finding more space in the house for more specialist equipment, its ordering the nutritional liquid feed which is the only thing keeping your child from starvation, ordering repeat medication at a rate of knots, homing specialist syringes and feeding equipment in the kitchen. It's selling your beloved car and getting a mobility car. It's having tracking hoists running along your ceilings. It’s looking for a new house when you never want to leave the place you call home. It's seeing nothing but a black hole of uncertainty past education where University and adult life would have been. It’s a calendar so full of appointments you can no longer read the dates. It's watching Elin suffer when her dystonia takes hold. It's saying goodbye, as we have had to do again this week, to another beautiful little friend of Elin's and watching amazing parents you have befriended in your joint despair having to cope with the very worst possible case scenario imaginable. It’s having to face the thought of your own child’s death. It's a never-ending oppressive thoughts that can sometimes get the better of you.

My friend Anna bought a book for me recently that has helped me to see this kind of 'chronic sorrow' grieving for what it is and which provides advice on how to deal with bereavement of any kind, as well as touching on different kinds of  anxiety disorders and depression. 'A Manual For Heartache' by Cathy Rentzenbrink focuses on dealing with loss and grief and the ensuing feelings of anxiety and depression that sometimes never go away after experiencing a life changing incident. The author's 19 year old brother was involved in a car accident when she was 17, but lived on life support for the next eight years before he died.  Her first book 'The last Act of Love' which I haven't yet read, charts this part of the story and then this book  describes how the author has subsequently dealt with what happened and forged a life in the wake of her devastation.

I would recommend this book for anyone dealing with any kind of grief or loss, or tragic incident, however long ago in your life it occurred. Mostly what she writes is common sense but there is something very comforting in reading what you know to be true written down in a simplistic, logical way by someone else who has been through something unspeakable. The writing comes from a place of bleakness, but turns into a tender appreciation of life’s beauty.

At one point she thinks of Nancy Mitford saying that though life is often dull and sometimes sad, there are currants in the cake. “Look for the currants.” Ultimately, we might never fix our broken hearts, but we can still live, and our hearts can grow and appreciate life’s wonder. That is the feeling the reader is left with. 

I found this book comforting for many reasons. I'm not sure how useful it would be in the immediate aftermath of something horrendous, where even the suggestion that a book could help you get through it would probably seem laughable. But for me, I think I really would have benefitted from reading it in the early years following Elin's birth, during my grieving process for the daughter that was never born and whilst I was trying to negotiate what I now understand to have been pretty severe but undiagnosed (largely because I wouldn't talk to anyone about it) Post Traumatic Stress Disorder whilst trying to care for a very sick baby.

Grief is such a strange beast isn't it. It is almost entirely universal but affects everyone so differently. No one-way of dealing with grief is correct, but I was glad to discover that the classic 'five stages of grief' are no longer really being referred to in psychological circles, since the more modern realisation that grief is a fluid, chaotic crazy mixed bag of emotions that sometimes never actually ends.  Thats good, it means anyone suffering does not have to feel like it is time they 'moved on' or 'were over it'. Sometimes we just have to learn to live with what has happened to us and accept we will never quite be the same. 

Obviously I am a "look for the currents" kind of person.  Or at least I am now, perhaps less so in the immediate wake of what happened to Elin. It takes a long time to come to the conclusion that you can't change your loss and so the only way forward is to accept it. But very occasionally, even after all this time, the loss will resurface and can be almost as ferocious as it was initially. Apparently this is common and known as a 'second drowning'. I think I have experienced this once or twice in the past nine years. The times when you are struck dumb by the magnitude of what happened and it's a struggle to get out of bed. The way your heart aches for the child you almost had and then aches with guilt for the betrayal of Elin as she is now by feeling that way. 

Both the article on Chronic Sorrow and the book have helped to re-focus my attention on managing my thought processes lately. They make you realise it's not just you, it never was and it never will be.  The phrase "Do not ask 'why me?' but rather 'why not me?' " is a simplistic but effective way of thinking during black moments I think. As I grow older, so many of my friends confess suffering from anxiety or depression or, PTSD or Post Natal Depression or even just ongoing worry about things which they can't control. I am glad we are able to openly talk about this stuff, as we may not have been years ago. So I share this information in the hope that we can all, whether navigating tragedy or not, somehow take back a little bit of control for ourselves by not being ashamed of looking after our mental health the way we would our physical health. We all know it's just as important. 

As the author of 'A Manual For Heartache' writes 'Something that always consoles me, that never fails to throw a chink of light into a dark day, is remembering that others have walked this path before me. Even as your heart breaks and aches and you can't imagine how you will ever feel better, you can know one thing for certain. You are not alone"

Such a simple yet powerful and important message.

Xxxx