Hello lovely people.
Today is Eira’s 7th birthday. Anyone who has followed our story over the last couple of years- from leaving our home in London to traveling through Sri Lanka, Thailand and Bali; settling in Bali and then, a year ago, dealing with every parent’s worst nightmare when Eira had a traumatic brain injury– will understand why her birthday is a lot more than a day of joviality and cake and presents.
We are so, so, so lucky to have her here with us.
Before her accident I thought I appreciated my kids. I have always loved being a parent; there’s nothing I’d rather do and I’ve spent my whole adult life as a parent after having Esmae at 21. I was exceptionally lucky to enjoy parenthood from day 1 and if someone had asked me ‘do you appreciate what you have’ I’d have said yes in a heartbeat.
There are few things that change perspective quite like the prospect of losing a child, and it has been a very conscious and real, gut-deep, ‘oh my life we are so lucky to have her’ appreciation that has been with us every day, multiple times a day, since she fell while in Bali.
On the night of her accident one of the main things in my mind was giving her something to think about and look forward to. While she was unconscious I talked at her non-stop about the dinosaur birthday party she had been planning (since her last birthday 9 months earlier!) and all of the games and decorations and food she was going to have.
She’d been very precise in what she wanted and it was the best thing I could think of to give her something to hope for and fight for and wake up for- although thinking back, I am fairly sure she woke up so that she had the option to tell me to zip it for one second and let her get some rest instead of chewing her ear off incessantly!
When Eira woke up and was talking, one of the things that was the most devastating was that she had forgotten about her dinosaur party that she’d been planning. When I eventually asked her what she would like for her birthday a few months off, she said a ‘butterfly party’, which is about as far from Eira’s style as it’s possible to get, and it was like being punched in the stomach.
I can’t remember when the dinosaur party came back into view but I do remember it being like a huge illuminated arrow that we were fully getting our child back and despite the chaos of moving back (her birthday was a couple of weeks after landing back in the UK and amidst a million doctors’ appointments) I really wanted to make sure she celebrated her birthday properly.
It was an extremely special day when, exactly one year ago, we threw her her dinosaur party with toy dinosaurs in ice eggs to ‘hatch’, an overenthusiastic Patrick dressed in an inflatable dinosaur costume (some kids loved it, some were scarred for life) and the most incredible birthday cake made by a dear friend. It was like the hope and possibility that we had clung on to- getting her to her birthday and celebrating it exactly as she wanted- was fully realised, and it was amazing and overwhelming.
In the past year Eira has had a lot of challenges as a result of the accident. For months she would have quite severe bouts of random illness that the doctors still haven’t really put their finger on as to a diagnosis, other than an autoimmune issue. She was in and out of hospital with sickness, dehydration, lethargy and a bizarre and horrible symptom where her skin on her hands and feet would peel off.
Trying to communicate between the UK hospital we came back to and the notes we have from the hospitals in Bali has been frustrating to say the least, mainly because most of her notes were in the local language and too basic for the doctors here to work from. We were very thankful to be able to talk to some of the top doctors in paediatric neurology and neurosurgery who gave us clearer feedback to give to our local hospital, and we are incredibly thankful to live in a country where excellent healthcare is free.
Having seen what most people have to deal with re healthcare (many of the locals in Bali sat outside all day in the hot sun with their babies, waiting to see a doctor) this is something we will never take for granted. It didn’t stop my frustration (ok, absolute rage) when we were told that they had ‘missed’ an infection that potentially affected Eira’s heart, but frankly we are in one of the best places in the world to be ill so that is something to be grateful for.
Eira had a heart scan recently to investigate the results of the infection and possible Kawasaki disease and the results were that one side of her heart is enlarged; however they said this could be (my brain has gone blank for the term but basically) an anomale that she may have had before her accident/infections. She has got another heart scan in a few months and we can always go back to hospital if anything changes in the meantime.
Her skin peeling and unwell episodes have gradually got less frequent as she’s healed over the last year which has been extremely encouraging as the long-term effects of a TBI can include all sorts of weird and horrible conditions; all I can say is I am gobsmacked, daily, at how lucky she has been. She is completely functional, bright, hilarious, has a very unique and dark sense of humour, is exceptionally organised and absolutely loves her classes and Beavers groups.
She is a gorgeous sister and loves to help Elfie with her teeth and getting dressed, and is very affectionate (especially towards me, yay) and loves a cuddle (but playfighting, always, with Patrick!). She’s recently got into Harry Potter and a quiz online told her she was perfectly suited to Hufflepuff, although I was under strict instructions to only purchase Gryffindor merchandise if any, for her birthday 😉
She has a ‘special friend’ (she would say boyfriend) who she sees every week and they are adorable to watch, spending hours on hours building Lego quietly together. For her birthday treat the two of them are going on a date to her favourite ‘cowboy’ restaurant (Smith & Western) and are sitting at a table on their own, not with us Mums, obviously.
She loves practical tasks, recently bought a woodwork kit from a charity shop and knocked out five or six projects (a tank, a plane, a boat, a robot and more) in a few days. She is buying herself a sewing machine and a carry bag for it with her birthday money (you never know when you might need a sewing machine with you) and- her most exciting thing- is getting her ears pierced today.
Eira is astounding, and we are so glad to be celebrating her 7th birthday with her today. The last year or so has been really tough- dealing with a poorly kid is no joke, let alone while trying to resettle your family and completely realign your future plans. Striking the balance between portraying reality and not sounding like I’m anything less than insanely thankful she’s here, is very difficult when you run a public blog and I hope I tread somewhere along the right lines.
I tried to write an update around the anniversary of her accident (29th July) but couldn’t finish it; looking at the photos from around that time is horrid and it’s so easy to go into a negative tailspin when thinking about it all. I’d like to say a HUGE thank you from the bottom of our hearts to all of you who read and follow and support us, your thoughts and prayers in particular had a huge huge impact in helping us feel supported and hopeful, and this was more valuable than I’ll ever be able to articulate.
If you’d like to say Happy Birthday to Eira please comment below and I’ll show her this evening, I know she will love it!