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. 

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