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!!

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.