There's no place like home

(Doorstep polaroid taken by Caitlin at Holly Cottage last month) 

Hi, its been a while! I see I last posted in May, mid lock down. Well we are still pretty much, like most people, on the Corona-coaster, except it has slowed down a bit and changed direction. Normal life seems like a distant memory, as does shopping and going out to meet friends or going out for dinner. But there are chinks of ordinary life re-appearing. We have had some socially distant visits from family around Elin's 12th birthday. It was good to see other humans (It had started to feel like Lord of the Flies in lockdown and I reckon Paul would have cooked and eaten me first, given my covid waistline would probably have sustained him nutritionally until the Autumn). We have been to the supermarket once or twice. Oh- and we have moved house.
Yeah, moving house while socially distancing in a pandemic with Elin wasn't easy (we didn't use removal firms, just moved everything ourselves over an elongated period using our own cars) but it's done now and we didn't just move house, we moved lives.
The new house, our house, is Elin's house. Literally and figuratively. It is designed for her and it is all for her. It is her compensation for everything she lost during her birth. It replaces nothing and yet it enables everything. The new house gives Elin the very best quality of life we could wish for. She is able to access each and every family room for the first time and has her own therapy room/sitting room and hydro-hot tub. She can watch her Disney films and musicals on a decent screen she can actually see without having to go to the Odeon- and the bonus we have our own fully equipped disabled toilet here too (and the Ben and Jerry's is cheaper!!) She has her own patio she can wheel straight out onto in the morning to start the day. We have a storage room for all her toys and equipment meaning they are always on hand instead of having to root for them or traipse to one of our sheds. She can join us for meals in the kitchen (the first time we had breakfast at the table together, in our home home, was an extremely special moment). In the cottage Elin had one room and a wet room. The limitations of this really hit home since we have been stuck in isolation. No room to even wheel her around anywhere. She simply could not access the living room or kitchen at all. We had a beautiful garden thanks to Paul, but getting her in it- not easy. EVERYTHING here is easy. Wherever we go she comes with us. If she isn't having a good sitting day, she has an achheva-bed that can be wheeled around instead. Or, she can sit with us in a choice of rooms, which are light and airy and have a beautiful view. It makes a difference. Actually it doesn't just make a difference, it's changed her life and ours as a family irrevocably.
In the new house, there is also room for family to stay comfortably. This means Elin can be around all her brothers and sisters and nephews and nieces in her own familiar space for the first time. People can visit without having to sit perched on a tiny sofa in her bedroom (where we spent our entire lives). In changing the environment for Elin, the opportunities for her have been opened up beyond our expectations and we are grateful every single day that she has been afforded the opportunity to live somewhere designed especially for her every need, which we know is a luxury lacking for a lot of children in her position, and something we wish with all our hearts could be a universal privilege.
On that subject this house brought a heavy whack of a rare type of stamp duty- guilt. The house is for Elin, ergo, we would not have need of the house if Elin was not so severely disabled and had not been so badly injured due to the catastrophic mis-management of her birth. To say this predicament is a double edged sword is an understatement. Elation tinged with shame/guilt/truama/regret is a difficult emotion to process. I say this not to make you feel we are unhappy or ungrateful, we are the opposite. We are beyond happy and thankful every single day that Elin has been lucky enough to receive what she deserves in terms of a living space. A space that genuinely is changing her life as we speak. (We adored the cottage, we had been there 18 years. I moved in when I was 21, the walls have witnessed my entire adult life, we never saw reason we would ever need to leave. But the 22nd July 2008 heartbreakingly marked a ticking clock of realisation that our beloved cottage would one day no longer be a place we good realistically/easily inhabit) However please also understand we can never shake the feeling that something so wonderful has come off the back of something so, so awful. It's a very complex feeling, to have something amazing because the worst thing imaginable happened to Elin. But it is a feeling we are learning to embrace and deal with and hopefully one day put to bed. Because we know, that none of this truly compensates for anything Elin lost. I would live anywhere, in a tent in someones garden or in the worlds smallest most cramped  space if I could hear Elin's voice. If I could do the ordinary mum-daughter stuff with her. If we could live a life without medications and hospitals and equipment and fear.

I would trade the footprint of this amazing house for a footprint of Elin's in a heartbeat.

So the guilt has to stop because this does not make everything ok. We were so happy in our cottage and we would have managed and we would have been happy forever because we were together. But it would not have been right for her. It would not have been easy, it would not have afforded her what she deserves. What the move has done, is it has made Elin's time on earth the most comfortable and the best it can be, whilst we borrow her from the universe, whilst we show her every single day what is possible for her for as long as we can. She deserves absolutely nothing less. She deserves the world. We can't give her the world, but we can give her this house and our love and family time and joy and anything else humanly possible. We have a proper home for her now and it's been a long 12 years in the making. It was worth the wait.

There's no place like home.

Home cinema screen in Elin's therapy room. Favourite films with big sis in the comfort of her own home! 

Getting a really big girl (snuggles with Mummy in her new bedroom)

Look at me in my new house!

At the breakfast table. A simple joy most families take for granted.

Watching her projector from bed :-) She never had a wall to project onto before! 

Happy 12th Birthday Elin

Elin's patio. Chilling with Daddy.

Playing with birthday balloon and space blanket. 

Looking out of her therapy room patio doors whilst relaxing on her acheeva.

Loving her fish lamp!

Trying some switching. Good girl!! 

Covid style afternoon birthday tea with just close family members.

Daisy daisy.

I wonder where Elin is off to??

Oh, HELLO!!!!! 

"If I ever go looking for my heart's desire again, I won't look further than my own back yard. Because if it isn't there, I never really lost it to begin with. No matter how our homes look, we people of flesh and blood would rather live there than in any country, no matter how beautiful, because that is where our family and our hearts are..... and Oh! Aunty Em....theres no place like home!!!!" 

Frank L. Baum

The Wizard of Oz, published 1900. 

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

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.

Ring out the old....

Hope everyone had a great Christmas! Elin sure did. Without wishing to cast the inevitable curse that comes with grandiose statements, I've got to say I think it was her best yet! Aside from a bug she was always bound to get, which thankfully disappeared well before Christmas, Elin has been the happiest, healthiest and most relaxed we've ever seen her. That is ALL we ever want for Christmas.

Its surprising, looking back through my posts, how many Christmases didn't work out so well for Elin. I have just realised that three years on the run we had a stint in hospital over Christmas and in other years, she was either coming down with a bug or getting over a bug on the big day itself. One Christmas Eve, a seizure landed her on Children's Ward. Another year she had to stay at home with me whilst Paul did our annual London Christmas visit because she was too ill to travel.

The reason this is surprising to me, is that I don't really remember them. They haven't stuck in my memory as you would presume they would have. As we enter a new decade, I thought it would be nice to reminisce about my ghosts of Christmas past before I sat down to write my Christmas blog post and the only imagery I could conjure up in my minds eye was joyful. I remembered Elin laughing at the wrapping paper on her presents, Christmas balloons, her school concerts, visits from family, cuddles with friends by the Christmas tree, outings to shows and concerts, meeting Father Christmas, I even remember her various gorgeous outfits over the years! But until I really, really focused and checked back through this online diary of mine, the bad times (of which there have been many it seems!) were strangely mute in my memory. 

This is going to sound as trite and glib as anything, but it has made me remember that truly, life and feelings and struggles and bad times are fluid, which is a reminder I really need sometimes.  I'm not trivialising these issues. I have been beyond miserable during these times. I still have really, really, hard moments and struggle to keep my anxieties and emotions in check, which I am not good at admitting or dealing with (but I'm working on that!) Sometimes,  I make lemonade from my lemons and sometimes the only thing I can do is chop them up and put them in a massive gin and tonic!! Unending positivity just isn't always possible.  However, when I look back on the important times of our life with Elin, like Christmas, I can STILL only really remember the good things. Despite the absolute agony of the bad times. I love the human brain for doing that, against all the odds and even when you are pre-disposed to overwhelming worry and anxiety,  it still tries its best to filter out the overwhelmingly painful stuff. Maybe it's partly our determination as a family to focus on the positive, although as I've said god knows that is not always possible, or maybe it's because we know that ultimately, as long as we have Elin happy and healthy and by our sides then the rest of the pain we experience will be muffled, if we can allow it to be.

I know this is not specific to us. I know that when it boils down to it, nobody really cares about presents or turkey or Christmas trees. All any of us want is our health and for the health of the people we love and to get to spend another Christmas with them. I am unbelievably lucky to have some utterly amazing friends and family surrounding me, none of whom I could navigate this journey without. On new Year's Eve this year I will be wishing for a healthy 2020 for everyone we know and love, everyone who cares so much about us and everyone we care so much for in return. It is after all the ONLY thing that will ever really matter. 

Happy New Year folks. Dina Caroll said it way better than I could:

"Ring out the old

Bring in the new

A midnight wish to share with you.

If you're with me, next year will be

The perfect year"

See you in 2020 everyone!!

In Praise Of Relaxed Screenings

“Relaxed Screenings” or as they are sometimes called, “Autism Friendly” screenings at cinemas and theatres have been widely around, a quick google search tells me,  since about 2011 (although if you think about it, it kind of beggars belief that it took so long!) These screenings have subtle changes to the cinema or theatre environment, which means that people who have sensory difficulties have a more positive experience than they would in a traditional cinema setting. Changes include:

-Lights being kept at a low level

-Lower than usual sound levels

-No trailers or adverts-just the film

-Allowance for increased movements and noise.

These screenings haven’t been something we have always felt the need to bother with. Elin has historically been ok at the cinema and on the rare occasion we might have taken her to the theatre, enjoying the experiences without over stimulation. However as she has matured, we have discovered this not to be the case. The adverts and trailers (which these days seem INCREDIBLY loud-or am I just getting old???) upset her. They make her jump and the surround sound disorientates her. The noise triggers her dystonia and before the event has even started, she is struggling to focus.  The pitch black makes it hard to manage her physically and tube feeding or medicine administration is especially difficult.  Just recently, a new problem has reared its head for us. That is, that when Elin becomes over stimulated or over excited, she gets very, very noisy. She starts laughing so hard it can turn into squealing.  This is actually a lovely reaction and shows a high level of awareness, which is great. But, did I mention …its NOISY. This is problematic if it is prolonged, or regular throughout the showing, because it’s so distracting for other audience members.  Now, I’m all for allowing Elin to express her joy, of course I am. I will fight Elin’s right to equal experiences despite her disability to the death. But true equality has to be equality for all. So when Elin gets really, really, noisy for prolonged periods in a cinema I can start to feel uncomfortable. I don’t want to interrupt anyone’s fun. More importantly, I don’t want Elin to be seen as an annoyance or a problem. I also understand that these events are not just a special experience for us, it a special (and often expensive!) experience for all other families there too. I don’t believe in Elin’s right to enjoy herself at the expense of the enjoyment of others. It pains me to say it, but it just doesn't feel fair.

So after a particularly difficult visit to see “The Lion King” this Summer, where we ended up having to leave, due to little foghorn Drake, we decided that where possible we would only access relaxed performances from now on.  How lucky are we that this is an option for us now? True inclusion can mean I think, not lumping everyone together regardless of ability to allow them the ‘same’ experience, but providing tailored versions of that same experience in order to allow appropriate opportunities, choice and options.  Bravo to those venues around the country for realising this.

This weekend we have been to see the Disney film of the year and highly anticipated sequel “Frozen 2” . I was really excited because I had such good memories of the first one, Elin had loved it and it was six years ago when our trips out would more often be misses than hits, so it had meant a lot to have a successful trip out. We spent, like most families, the next few months listening to the soundtrack on repeat and Elin couldn’t get enough.  The great thing about Disney films are the musical numbers and advanced graphics. They are meaningful to Elin and tend to keep her engaged way more than any other kids films out here. I’m pleased to report our trip echoed that of our trip six years ago. She absolutely loved it and sat in her chair the whole way through the film, laughing loads. She didn’t just laugh at the film, she laughed at the other children audibly enjoying their experience too. When she began, as she was bound to, getting a little over excited, we didn’t feel any of the stress of previous performances that she might be distracting other people.  It didn’t matter.

By introducing these special screenings and making some simple changes to an ordinary format, the Odeon (and other participating venues, of which our personal experience extends to Chester's ‘Storyhouse’ theatre too) have given the opportunity for families like ours to have an extra-ordinary time. Thank you. Sometimes a small change can make a big difference.

"Frozen 1"  2013        vs         "Frozen 2" 2019

A magic celebration

I’ve blogged many times about how much I love Autumn. Part of the reason for that is because it contains Halloween. I have always loved Halloween, I’m not even sure why. Maybe it sprang from a childhood obsession with “The Worst Witch” (books and film equally) or maybe it’s because the decade I grew up in, the 1980’s, was when Halloween really started to take off as a ‘thing’ in this country and anything that came from America and was mentioned in my "Babysitter's Club" and "Judy Blume" books was by default, exciting.  By 'taking off as a thing' I don’t mean fancy costumes readily available in every supermarket, extravagant decorations everywhere you go and picking your own pumpkins in those stunningly instagrammable fields that every garden centre now boasts at this time of year. I mean making your own witches costume from a heavy duty bin bag, begging your Dad to whittle you a broomstick from a tree branch and getting a buzz from coming home in the dark after dancing up a sweat to “Thriller” and “Ghostbusters” at the Halloween disco in the school hall.  There is something tremendously nostalgic about Halloween for me and that’s before you factor in my morbid fascination with anything supernatural . Maybe I also love it because it coincides with the clocks changing, the advent of Winter and dark, cold nights, coal fires and an overall sense of cosiness the Scandinavians wholeheartedly embrace as a way of life called  ‘Hygge’ (perhaps I can blame my scandi paternal bloodline-my maiden name is Erlandson- for my adoration of Autumn and Winter?)

Like anything I adore, or get excited about, I want to share it with Elin. Like anything I want to share with Elin, I can’t. Not in the conventional sense of ways I see other parents enjoying with their children in any case. Trick or treat is meaningless to Elin. So is “The Worst Witch” and all the other things that make Halloween meaningful to me.

A couple of times, a few years ago, I tried to force my version of Halloween. It’s not until you are pushing a dystonic Elin through the cold damp streets trick or treating for things she can’t eat that you realise, with true horror, what you have always known. Elin’s experiences cannot be based on what you wish they could be, or what will make a cute photograph for the album. Her life experiences have to be based only on what is meaningful to her. Anything else is selfish, understandable-yes, well meaning- yes, but ultimately selfish. It’s a bitter pill to swallow (I still find watching other children experience common celebrations like Halloween in the regular way difficult. I don't expect that will ever go away) but since the very essence of parenting is sacrifice, it’s a no brainer. I am ashamed now, of the times over the years I may have forced experiences on her that she wasn’t going to enjoy, just so I could experience them as a Mum, but only time could bring this revelation to my door and only time could make me ready to accept it.  This epiphany is joining my list of 'things that have become easier to deal with' as the last eleven years have passed by.

Today, with Paul in London until tomorrow helping Elin’s big sister move into her new flat, Elin and I had an appropriately “Hygge” Halloween. We wrapped up and went for a crisp Autumnal walk before the sunshine disappeared. When we got home we blew up some light-up Halloween balloons to bat around (Elin finds balloons hilarious), we drew the curtains and played with our ghost-shaped fairy lights and glow in the dark glowsticks and bangles. We listened to Halloween music (thanks Amazon). We toasted marshmallows (Elin licked them and DEFINITELY enjoyed!), we cuddled up and watched the animated “Hotel Transylvania” together on the iPad and we read “Meg and Mog” before bed. It wasn’t what I had in mind when I imagined celebrating my love of Halloween with a pre-teen daughter.

But it was perfect.
As I flipped the calendar tonight I realised during all the naval gazing about Halloween today I had somehow managed to forget this now means we are in to November. This brings another celebration. Not for anyone else this time though, for us. The end of October marks four full years since Elin was admitted to hospital for anything.  Not one overnight stay since October 2015. Wow. I would have given my right arm for that when Elin was a baby. I never would have believed it was possible. So that, above the traditions and the costumes and the trick or treating and the pumpkin patches and what we do and don’t do, THAT, then, it turns out, is the true magic of our Halloween and we are so, so grateful for it.

Have a spooktacular time, folks.

xxxx

Blissfully captured.

For mental health awareness day tomorrow, a little story of how sometimes you have to face what scares you, until it doesn't anymore (but only when you are ready)

These photographs sat in a drawer in the spare room for ten years. This was my first cuddle with Elin without tubes and wires, when she was still in ICU following her birth, but had finally come off the ventilator. I was 26 years old and petrified. She was still very, very poorly. Paul took them because he noticed the July sunlight was shining through her cot-side window and the amateur photographer in him realised it would make a nice shot. It was a proper camera with a film and we had to wait for these to be developed. That seems crazy now. But, I'm glad they weren't taken on an iPhone. I really treasure that memory, of the photo's being taken on that big camera with the flash. It felt, for the most fleeting of seconds, like we were a normal family.

However, for the longest time, I could not display these newborn pictures. I just could not look at them without remembering the utter horror and trauma of the moments before they were taken and the moments that followed, and continued to follow for months (years). I loved the photo's, but I hated them too. They represent such a juxtaposition of hope and despair, of elation and devastation, of love and fear, of grief and gratitude.
Then Elin turned ten and something in me changed. Ten years is a milestone. It's a long time to be hanging on to trauma, denying a happy memory for fear of unearthing a million unhappy ones. For a while now, things had been feeling so much better. Elin has been doing amazingly well. Horrendous memories were definitely fading. I began to volunteer on the Special Care Baby Unit where Elin had been born, through the neonatal charity "Bliss". I had been Chairperson of the charity attached to the unit, Cherish, for many years by now, but that rarely involved visiting the unit itself and almost only ever involved conversing with parents who had long since left the unit with a recovering baby. This volunteering was different, it was to consist of going to the unit weekly and speaking with parents who were once in my position, right at the start of their journey as parents, some with very sick babies. It's providing an understanding ear to them in a harrowing time and hopefully helping them through, just by being someone there who knows exactly how they feel and has come out the other side. When I did my training with Bliss, I wondered if I would be able to carry out the role effectively, without re-visiting my own terrible memories of the first few weeks of Elin's life and letting them consume me again. I wondered if being there, immersed in the stories of others might set my mental health recovery from what happened to Elin (and I am always still in recovery) back a little. But somehow deep down in my gut I knew I was ready and that it was the right time to take on something like this. I had an urge to support other parents by doing something I think I would have benefitted from at the time we were on the unit all those years ago (though it has to be said the support from the amazing nursing team at this time was incredible. I never got over how wise them seemed, how easily they could comfort me. Nurses by trade, unpaid counsellors on the side)
The result has been one of the most rewarding things I have done. I've been volunteering for almost twelve months now and I have loved it. I think I was worried I may be transported back to one of the most difficult periods of my life -a period where we realised life would never be the same again, a period that was the start of 11 years of trying to come to terms with her ultimate diagnosis- in trying to help other parents. In fact, I couldn't have been more wrong. It's been so fantastically positive an experience. It's hard to explain, but it has normalised our time on the unit for me. I have seen incredible, amazing parents go through unthinkable things in the past few months. They have never failed to astound me with their strength, not a single one. I have been utterly inspired by them. These things happen and they happen again and again. It's life and it's how we deal with it that counts, because what else is there? It isn't, and was never, just me. We are not alone. The feelings I had, which I had been so scared to re-visit in keeping the photo's in the drawer, have been echoed back to me scores of times over the past twelve months in my role. It brought me a clarity and sense of peace I never considered when I thought about volunteering.
After I had been visiting the unit for a while, and ten years after Elin's birth,  I came across these photo's when searching for something else. Suddenly, I was really cross with myself for hiding them away. I made a snap decision to frame them and put them on Elin's bedroom wall. Now I look at them every day, we look at them together. Not once have I felt my heart pounding, or my stomach sickening, or my palms getting sweaty. I just feel joy. It's blissful to feel freed of the negativity that I once attached to these photographs so lovingly captured by Elin's Daddy. It took a long time, but I understand now that I had to be ready. It turns out that facing my fears, actively putting myself back into the environment that initially held such difficult memories for me and hopefully providing a little support to those trying to heal themselves, has helped heal me a little too.

"Nothing in life is to be feared. It is only to be understood"

Marie Curie.

Mental Health Awareness Day October 10th 2019.