On parenthood 

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Ted: the boy that made me a mother and turned my world upside down in so many ways


Neglected though this blog is, I love to write. But I often need a kick up the bum to do it. So when I saw a competition on the excellent Motherland site, I knew I had to enter. I had a good feeling about my chances and it turns out I was right. I won third prize!

I’ve shared a lot on this blog but there are things I’ve never admitted. I feel awful for saying that at one point I wish Ted had died, but it was the truth. It was a fleeting thought in a very dark time and was tied up in the shock and grief of a ‘severe cerebral palsy’ diagnosis, but I would never wish it now. It shows how twisted up I was that I saw it as an easier option. My heart breaks for the many parents who have lost children to the complications of HIE and disability.  Hopefully admitting such a painful truth will help others understand the depths of despair you can be in, but I am truly sorry if it offends or upsets anyone. 

If you’d like to read my musings on the peculiarities of our particular brand of parenthood, see the Motherland blog here.

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Goodbye 2015 – what a year you were!

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

Focus on therapies

I’ve been meaning to start a weekly thing on therapies for a while now. And in true tardy fashion (er, that New Year’s resolution isn’t going so well), here it is! Well, the intro for this regular slot, anyway.

Ted receiving ABR

Ted receiving ABR. How snuggly?

Here at Ted HQ we do, or have investigated, so many ‘alternative’ treatments for brain injury. I not an expert on all of them but I do have plenty to say on the ones we’ve used. I’m often asked about them by other special needs parents so I thought it would be good to share our thoughts and experiences here. Plus, of course, anyone who has donated to Ted’s fund (and therefore helped pay for these treatments) may also be interested in where that money goes and whether what we do has any impact (it does!).

Doreen working with Ted at an ABM session

Doreen working with Ted at an ABM session

Many of these treatments are not well known or very niche, or run as cottage industries with a tiny workforce driving them. They may be highly effective but there are no clinical trials to prove it. That can put parents in an awkward position.

We must rely on our own research skills, on word of mouth and on anecdotal evidence to decide whether a treatment is worth taking a punt on. It’s a tough call when there are no stats on something’s efficacy or safety. No one wants to be ripped off or sold some kind of snake oil treatment (and believe me there are lots of unscrupulous people out there who will claim to ‘cure’ cerebral palsy and a host of other incurable conditions).  But worse still, you could risk the health, possibly even the life, of your child.

That’s one reason why it’s vital for us to share our info and pass on our successes and failures. I can’t promise that your child will react the same as Ted to a treatment but I wouldn’t recommend anything I thought was unsafe.

The crazy HBOT hood

The crazy HBOT hood

So gradually I’ll be covering all the therapies we do and maybe getting some guest posts on the ones we haven’t tried yet. Expect mutterings on ABR, The Anat Baniel Method, Snowdrop, HBOT, Cranial Osteopathy and Homeopathy, at least.

Hopefully, somebody somewhere will find this useful. Watch this space…

 

Clear communication

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Ted is non verbal. That means he has no words. But that doesn’t mean he can’t communicate. Far from it.

He makes choices by looking at things, and he has a wide range of expressions from super excited to heartbreakingly sad.

But recently, he has been using sounds to communicate his feelings. It began with whimpering when I started reading a book he didn’t want at bedtime. This is such an exciting development – or it was until he used his cries to make me repeatedly read Spot’s First Christmas (still going strong as the pre-bed book of choice).

This video takes it a step further – he really shows clear understanding of a word and concept.

I know he gets it because I can stop him crying with the word ‘DVD’. It makes me proud and alarmed all at the same time. (We watch a lot of DVDs but it’s for therapy so I’m OK with that. Mostly.)

Feeding tube awareness week

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Yep, I didn’t know it existed either. But it’s here.

And it’s a great excuse to share some pics of Ted when he was really teeny….

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I don’t have much to say on the subject per se, but I’ll waffle on for a bit anyway.

That NG (nasogastric) tube saved Ted’s life in the beginning, when he was unable to feed.

His brain had taken such an insult at birth that his sucking and swallowing reflex didn’t kick in for a while. In fact, at first it was completely absent – which is extremely worrying, as the speech and language therapist stressed (don’t be fooled by the name, they deal with infant feeding too). It’s a reflex. An innate capability. When it’s not there, it’s a big concern.

I can guarantee that news alone is enough to keep you awake at night crying about your child’s terrifying future and how this means he will end up in a wheelchair (which is exactly what I did on that cold October Wednesday night).

The funny thing is, Ted did learn to suck and swallow, albeit slowly. We have a few agonisingly dull weeks of him mainly being too sleepy to bother drinking at his allotted time slot of every three hours on the half hour. Yes, NICU is that regimented.

We took him home with the tube – it was that or stay in hospital and that became less appealing each day. Ted finally dispensed of his NG about two weeks after getting home. It was a short-lived but necessary evil. Emphasis on the evil.

Aside from the good, ‘keeping my child alive stuff’… Ted’s cheeks got sore under all the tape, which I also used to resent for totally dominating his beautiful little face. It was hard not to attract stares from people. It was horrible expressing milk just to put in a syringe. It was even more horrible to have to repass the tube when it gets pulled out – this happens A LOT. You have to make sure it goes into the stomach, not the lungs, and fight your instinct not to upset your child or cause him pain. All while you pin him down and subject him to this deeply unpleasant act to the soundtrack of him screaming blue murder. BUT it gave him the space to learn to feed.

Feeding has not been without its struggles but two years on we are in a good place with milk and purées now. There’s a chance that Ted may need a gastrostomy (a tube straight to his stomach) in the future, to supplement his nutrition, but I try not to dwell on that.

A gastrostomy used to be one of my worst fears, after CP and epilepsy but, hey, we’ve embraced those already. I’ve made peace with it now. If he needs to be a tubie, it’s because he needs it to survive. And that’s OK. That’s more than OK. I just need to remember that it’s really quite miraculous that people can be kept alive with a tube. The alternative doesn’t bear thinking about.

I’m totally OK with the wheelchair thing now too, by the way. When you have a two year old who can’t quite hold his head up, why worry about something like walking? I don’t mean that flippantly, I just don’t need the unnecessary stress!

Hello to 2015

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The trouble with a neglected blog is that when you do get around to that long-awaited post, it’s hard to know what to say. The weight of expectation sits heavy on my shoulders. In my head there is the pressure to deliver the kind of blog it’s worth waiting four months for. Or I could just get on and write something, just so you all know for sure we are still alive.

Ted enjoying messy play

Ted enjoying messy play

Given that I haven’t blogged yet in 2015, sharing my goals for the year is as good a place as any.

My new year’s resolution is ‘get organised’ (and yes, the irony of announcing this on 8th February is not lost on me. I did have it typed out in January but the time to upload it escaped me).

Rather than a list of specific ‘must-dos’, I figured that if I apply this mantra to my entire life, the goals that are floating about in my head will naturally fall into place and I can achieve great things. Or ordinary things. I just want to achieve something. One thing. Anything.

As a consummate procrastinator with a history of utter disorganisation, my existence is a constant battle between the tidy, ordered life I crave and the chaotic reality of unanswered emails, unreturned phone calls, piles of unfolded laundry and so on.

Prime example: it has just taken me THREE MONTHS (more if you think we did an assessment for it in August) to order Ted’s new special needs buggy*. Yes, I needed to check we had enough money in the fund and decide on the colour of the accessories. But still!

In my defence I think part of this procrastination was to do with acceptance. I know Ted is disabled. I know he is not like your average two-year-old. I know this isn’t going to go away. But maybe part of me wanted to hold on to the Maclaren just that bit longer because it’s so normal. It’s easy, it’s light, and people just treat Ted like any other kid when they see him in it. They probably think he has awful posture but at least it doesn’t scream special needs. Or take a weightlifter to put it in the boot of the car.

These are the things I hope organisation will bring my way:
A tidy house in which things have a home instead of living wherever they have landed
A decorated house (on first glance my house looks fine but trust me, there is SO much DIY to do)
All Ted’s paperwork filed away so I don’t have to look at it in the corner of my bedroom
A garden devoid of brambles with a thriving veggie patch
Time to exercise
A growing, popular useful blog – watch this space. Literally. (Please.)

Hope your year is already proving to be a good one and that you are steaming ahead with your goals and getting things done. And if not, the whole New Year thing is only an excuse anyway. You can do it any time.

*The company have now said we can’t have the combination of seat and base that we want. It’s such a boring and complicated issue but hopefully I can be a bit more organised and it will take less then three months to sort out this new hiccup.

Ted turns two

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What a few weeks it’s been! Ted had his second birthday (much less depressing than his first) on 7th October and, like the Queen, had two celebrations.

Well, three really. Two huge shindigs and a little tea party for the Warminster crew on the day itself.

Mr Tumble would be proud

Mr Tumble would be proud

The star of the show was this wonderful spotty Mr Tumble cake – Ted’s love for Mr Tumble knows no bounds – a thoughtful gift that tasted uh-mazing. Sadly, Dad was working away in London so we tried to take some photos to commemorate the happy day… Didn’t work out well

'Happy' birthday Ted

‘Happy’ birthday Ted

Ted’s going through one of those times when the sight of a camera or phone makes him very sad. It’s heartbreaking, funny and adorable, all at once.

We’ve also had a ton of appointments. In the past couple of weeks Ted has:

  • had his first official haircut (rather than the terrible mum trims I give him)
  • met his new Wiltshire paediatrician
  • been up to London to see a different paediatrician for his two-year developmental check
  • seen the special needs dentist
  • had much-needed cranial osteopathy with the wonderful Christian Sullivan in Bradford-on-Avon. (As a side note I can’t recommend this guy enough. Ted was like a different child after seeing him – he hadn’t been since August and with teething and reflux he had been really agitated and difficult to settle. SO MUCH BETTER after half and hour with Christian)
  • plus all the usual swimming, rhyme time, Steeping Stones, Portage…

That’s just Ted’s diary. We’ve also been busy throwing said parties for Ted, having new carpets fitted upstairs, painting the bannisters, choosing fabric for new blinds, having a replacement window fitted, getting quotes to do work on the house, trying to work out what to do with the downstairs that meets Ted’s long-term disability needs as well as creating a house that flows and works for a young family, seeing our legal team to thrash out whether we are taking action against the NHS for Ted’s injury (that’s all I can say about that right now).

All that doesn’t leave much time for blogging, sadly. But thanks to those who keep checking back to see if I’ve posted and those who have left such lovely comments. We have some weekday help with Ted now so I hope I can post a bit more regularly. Until next time x

The perils of doing too many things at once

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I am a terrible multitasker. I try. In fact, I constantly juggle several tasks at once. But I just end up either not finishing them, or doing them really badly.

I’m prone to doing things like trying to feed Ted while fielding questions from my dad about painting my bannisters, plus publishing a half-finished blog post in error. My email subscribers will know exactly what I mean about that.

Sorry about the random, words-lite update hitting your inboxes. A proper post will be up soon…