This is us

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Hello! Remember us? Yes, we’re still here (not the here of that photo above though, that was at the Green Man festival in August when Dilly and I desperately needed haircuts and Ted had the coolest shorts on site).

I don’t feel like I can say anything further on here without some kind of catch up. So pretend we’re old friends meeting for a drink; we’ll get the headlines out of the way so we can get to the real stories more quickly.

Having two small children of roughly equal dependence, even though one is, say, six months old and the other is three and a half is pretty all-consuming and exhausting. It hasn’t left much time or energy for anything except living and caring (getting the children fed, bathed, rested, going to the park, reading lift-the-flap books, stopping the house permanently looking like we’ve been burgled etc etc).

It totally took over my life. Not in a bad way. Not at all. Well, actually, it is bad sometimes in the middle of the 73rd night-time wake up or when it’s 5pm and you are all hangry and all three of you are in tears but the dinner isn’t cooked and you so desperately wish you weren’t the adult in the room so you didn’t have to try to make it all right. Or when you realise you haven’t read a book in three years or spoken to your friends on the phone for months and everyone now knows it could take six weeks for you to reply to a text – or is that just me? Those days are ebbing away though.

The balancing act of the two smalls is only just becoming easier for me. It has taken two years to fully emerge from the fug. Dilly has always been very independent but just recently she seems to have taken a mental leap and is much more able to reason with (within reason, ha). For almost all of the past two years I have on some level been extremely anxious about being alone with them both. It’s not a nice place feeling like you can’t handle your kids alone, but for a long time I couldn’t. Or I could do it – I can do most things I put my mind to – but it was no fun at all and we would either all be in tears or I would very quickly lose my peaceful parenting head and become shouty mum followed by very guilty mum. Bah. Bath and bedtimes were the most tricky as Dilly and Ted needed the same level of care and feeding and nurturing at exactly the same time and neither could wait. Once they were to too big and heavy to go into the double buggy, I couldn’t even take them for a walk alone.

Everything’s a phase, though, isn’t it? Dilly’s independent streak is a huge blessing and she has slowly but assuredly assumed the role of the older, more capable child, despite being three years younger. We can now go back to me taking them on outings and doing solo bedtimes because she can take care of herself just enough to mean I can manage Ted’s needs. Speaking of my gorgeous boy…

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Ted is now five; he’s at school and loving it. He has a few little buddies and tales of their friendships warm my heart and makes my eyes a bit wet on a regular basis. We have implemented a strict ABR routine before school and it’s paying off hugely in his improved mood, sleep and head control.

Ted has also taken some huge leaps in this time – he no longer needs to watch an iPad to eat his meals, he doesn’t cry on every car journey, he has trialled and abandoned several different drugs for sleep, unwanted movements and constipation but seems happy on omeprazole for reflux so we are leaving it there. He has experienced his first emergency admissions to hospital both in 2016 – once for a big and scary seizure, once for dehydration after a stomach bug – but he remains largely healthy and is currently happier than he has been in a long time.

The NHS have admitted full liability for causing his birth injury (I think I may have mentioned this before) so a legal case rumbles on in the background of all of our lives. It’s been going almost about five years so far. Like most things, the downs – multiple appointments, meetings with health professionals, millions of questions, expert reports, to-ing and fro-ing and a microscope hovering over many aspects of our lives – are balanced by some very welcome ups – namely more and better equipment than the statutory services can provide, and more plentiful care for Ted, thus easing the pressure on us and resulting in us feeling a little more rested and a little less frazzled. Sometimes.

We continue to try to embrace new experiences rather than be put off by the difficulties of disability. We took our first family holiday to the sun and it was such a success we can’t wait to do it again. Ibiza never lets me down, whether it’s raving, yoga or family fun. So, SO, good.

As we start to emerge from the coal-face of grafting for our tiny, needy children, I’ve been beavering away on other projects (see my Happy Mums Club blog or follow me on insta if you’re interested in talking about parenting, happiness, self-care and all that jazz). Despite being busy getting those other sites off the ground and retraining as a social media manager with Digital Mums, my thoughts kept coming back to this blog.

The Treatment for Ted name doesn’t quite sit right with me these days as life with Ted is so much more than his treatment and we have stopped fundraising for it. However, my heart is here in a lot of ways. I have certainly spilled its contents onto the virtual pages several times over the years. It’s my established space for talking about Ted, our family and disability so it makes sense to continue for now. Who knows,  if I can blog more frequently than once in two years, or however long it’s been, I could even justify a change in domain name….

 

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