Blimey it’s been a hectic few weeks. And there’s been plenty of good news, but to be honest, I haven’t had enough time or energy to wade through it and document it.
Instead, like I wrote last week, I’ve been making lots of to-do lists lately, because I am struggling to remember even the most obvious and straightforward of things. But these lists, while necessary, are also a bit overwhelming. A lovely reader of this blog suggested I get the Evernote app, which looks amazing. I need ios 7 on my phone first, though, and that means clearing a load of photos of the Boos off it. Why does getting one thing crossed of the list involve adding another 2? Aargghh.
But Good News Friday is different. It is the best kind of list and the one I need to write most: an aide memoir that reminds me that we’re not just bogged down in stuff. We have our battles – don’t we all – but we survive and thrive.
So here are some good news highlights of the past few weeks:
1) Sissyboo: I feel the lovely Sissyboo has been a bit neglected on the blog lately and I always worry that the complexity of her little brother’s needs, and the fact out Homestart support ceased at Christmas, means that she doesn’t always get as much Mummy time as she deserves and I would like. But I did manage to take some time time off over Easter and we had a couple of days out just her and I while her brother was at nursery.
This makes me feel guilty. But if he’s there, he’s getting his one-to-one support for a few hours, which means he has physio, standing frame time and speech therapy and being the centre of someone’s attention. When I have both of the kids it’s always ‘hang on a minute, Sissyboo, I need to get Boo into his chair’ or ‘hang on Boo, Sissyboo has spilled yoghurt on the sofa’. He gets plenty of time with me on his own. She doesn’t any more and it makes me sad. And while we all like going out together, there are things we can’t do with Boo, or are very difficult with him. Like the trip to Scotney Castle we did a couple of weeks back, complete with a rough and tumble nature trail that Boo’s buggy couldn’t have coped with, a trip around the (non-accessible) house and a run around the steep gardens. I can’t explain the sense of exhilarating freedom tinged with sadness I felt playing hide and seek with Sissyboo in the quarry garden, with its gazillion steps, smelling the beautiful flowers, knowing we will never be able to do that with Boo… But we had a good day. And we followed it with an Easter egg hunt with both Boos the next day.
2) My back: My back is shot. The GP called it Carer’s Back, which meant he both took it seriously but also saw it as an inevitable consequence of my life and therefore an occupational hazard. It has been getting worse for 6 months and in the last 2-3 has become excruciating at times. But here’s the good news. I got a physio referral. Yep, now I get to have physio too and make an extra trip to the hospital we call our home from home (urggh) each week! But my physio is lovely. She is practical and sympathetic in just the right combination. When she asked me what worried me most about my back pain and saw the tears well up in my eyes when I said ‘I am worried I might not be strong enough to look after my son’, she looked me straight in the eye and said ‘We’ll fix you’. And she is doing just that.
It’s a slow process. It looks like my bottom three vertebrae have become compressed through lifting Boo and there is a lot of inflammation. I have been taking prescription co-codamol, which I really want to get off, but it has helped and made the pain manageable enough to do the exercises and stretches she has given me. I need to get fit. I need to strengthen my core. Boo is not getting any smaller and I am in this for the long haul. But the back pain stopped me running, I put on weight and so I got into a vicious circle. I’m breaking that circle now and, although the pain is still there and still pretty bad at times, I too believe I am going to be fixed and that’s a good feeling. I’ve even snuck in a couple of runs and although neither felt good, they didn’t feel terrible. So that half marathon is still in my sights…
3) The blog: I can’t believe it and am sure things will change next month, but this month, for this first time ever, I broke into the Tots100 500 for the first time (I usually hover just outside). I know that this is largely down to the publicity we got for our Invisible Woman blog campaign, which was a group effort, highlighting the challenges involved for working parents of disabled children. So if I fall back out, which I will, I won’t begrudge this at all.
4) And then there’s Boo. Where to begin? He is coming on really well at the moment. He was tasked with recognising lots of verbs by his Speech and Language Therapist at the last appointment, and he seems to have most of them down now. He can recognise (most of the time) red, blue, green and yellow. We’ve also introduced 6 jolly phonics flashcards: ‘m’, ‘a’, ‘d’, ‘f’, ‘g’ and ‘b’. He now says ‘m’, ‘a’ and ‘b’ when he sees the cards and can pull the others out if you ask him to find them even though he finds the sounds hard to say. He now says ‘wa wa’ for a drink and in addition to his signature ‘hiya’ is attempting ‘hello’. This is all very exciting and keeping me and my laminator busy! (Yes, I have a laminator…)
Physically, his lycra suit is continuing to work minor miracles. He is standing straighter in supported standing and this is enabling him to step. He is trying a walker next week in physio. We thought this day was a long way down the line for us. But that’s how much he’s come on recently. I’m trying not to get my hopes up in case this isn’t quite the right one for him, but there’s a walker out there for him. I know it.
OK, over to you. I hope you have lots of good news to share too!