Logging in to write this, I see that I last posted something 287 days ago (!). Apt then, that I’m here to fill you in on just what the hell I’ve been up to, as, clearly, it wasn’t blogging.
This was the year that…
- Ted started HBOT at our local MS Centre. They have been so welcoming and the therapy has had a huge impact on Ted’s wellbeing. Two or three sessions a week means he eats better, sleeps better, even poos better (sorry, but constipation can be an issue for brain-injured kids and those with low muscle tone). We love it so much we are currently thinking about investing in a home chamber.
- I went to a meeting with some of my fabulous fellow HIE mums to discuss a top-secret project (will tell you more about that in 2016, I hope).
- I got a horrible stomach bug that swiftly morphed into morning sickness. This meant I was basically vomming from February until about April. Pretty hideous at the time but the end result was completely worth it.
- Our house was made more Ted-friendly, thanks to a great OT and a DFG (disabled facilities grant). The work took three really quite stressful months as I juggled builders, tradesmen, therapies, appointments, pregnancy… And all without the restorative powers of tea. I literally couldn’t stomach it.
- We stayed with my endlessly generous and patient parents while our house was a dusty building site. When we moved back in we had a new kitchen-diner (not part of the DFG), wider doors, a downstairs bedroom with an en suite bathroom for Ted, new flooring (we paid for that) and generally a house that will work better for us for the foreseeable future. And the council paid £20K to make it so – quickly, too. For that we will be eternally grateful.
- We discovered Ted has a minor peanut allergy, and needed a trip in an ambulance to the RUH in Bath. As well as Ted’s distress, Rik and I missed the chance to got for dinner for our anniversary. The upside, however, was that we realised Ted was old enough to appreciate films – seeing him giggling at Bee Movie on the children’s ward almost made up for the drama.
- We were on the usual treadmill of appointments – physio, OT, speech and language, Portage, paediatrician, neurology, neurodisability, a feeding clinic, an aborted videofluroscopy, orthotics, orthoptics, chair assessments, buggy trials, visits to the dentist, the cranial osteopath, the homeopath, a look at the Bobath Centre, assessments for Snowdrop and ABR, HBOT, vaccinations. And that’s just off the top of my head.
- Ted’s sitting balance improved and he inches slowly towards better head control and improved function all over.
- Rik got a new job, which means working in the shed, more time at home and I don’t have to do the whole Monday to Friday, lone parenting thing any more (phew!).
- Ted turned three – and despite being due at that very time, his sister had the good grace not to steal his thunder by appearing on his birthday.
- Miss Bedelia Florence Haines arrived. Twelve days late and a little 7lb 8oz bundle of dark-haired perfection. Thanks to a lot of soul searching and some hypnobirthing, it was a beautiful, swift, healing, pain-free experience. Which has been completely the opposite of my adventures in breastfeeding…
- We received an admission of liability from the NHS over Ted’s brain injury. I’ve not been able to mention much until now, for legal reasons, but it all could and should have been avoided if the midwives had acted upon the clear signs that Ted was in distress. There’s so much I could say about this but I won’t. Not here. We’ve had a formal apology and will be fully compensated in due course – ie several years’ time – so Ted will always have what he needs, which is a relief to say the least.
- A few car journeys where Ted has not only not had a meltdown but he has actually been quiet and (whisper it) happy! I won’t go so far as to say we are out of the woods with his horrific travelling, but I hope this is the start of better times. Then we can be less reticent about venturing further afield with our visits. (Somewhat inconsiderately, not all of our friends live within the designated safe zone: a 2.5hr radius of our house.)
- Finally, and best of all… Ted learned to laugh; big giggles and proper belly laughs – and not just because we were tickling him. He laughed at slapstick violence in movies (like Despicable Me), people dancing, splashing around in swimming pools, hair swishing, sock throwing, balloon kicking, being bounced on the trampoline and spun on the roundabout, grandad’s botched attempts at Makaton, playing What’s the time Mr Wolf?, Pirates walking the plank on Swashbuckle (and dad recreating it in the kitchen). What a beautiful milestone to achieve.
It’s been a mixed year, of course it has. There have been many stresses, lots of tears (mine and Ted’s), plenty of bickering, money issues, birthing fears, family dramas, friends having tough times, an ill-advised and extremely traumatic 10-hour car journey to north Wales, and a hell of a lot of sleepless nights.
There has also been joy, laughter, a delightful change in our family dynamic, a holiday, a festival, a wedding (well worth THAT drive), a country house pre-Christmas weekend with very dear friends, plus ongoing gratitude for our wonderful support network, fabulous fundraising friends and for Ted’s continued good health. The good times have outweighed the bad and we move into 2016 as a happy little family ready to face what life wants to throw at us this year.
Thanks for reading and happy new year x