Sometimes the things that once hurt the most become the source of most joy. I've got used to hearing about everything that Dominic can't do, and I can honestly say that I find it easier to stomach after 5 years practice than I did when I was more of a novice at this. It doesn't mean that I get any less satisfaction in proving people wrong though. You could say it's one of my favourite hobbies, not the most endearing of qualities admittedly, but I do think that the smug look suits me, so I try and wear it as often as possible. A couple of days ago I had far more reason than usual to feel utterly, sickeningly self satisfied, and, I caught it on camera. I didn't record my face, you'll be pleased to hear, but I did record the event that was giving me so much pleasure, and I'd very much like to share it with you.
Before you see the video, let me give you some background. Some of you may (or perhaps may not) have noticed that I've skirted around mentioning any medical issues recently. This isn't because there haven't been any – quite the opposite – but you'll have to bear with me as I attempt to build up the mental courage to disclose all the details to you as it will involve my having to grow a pair of distinctly hairy and bad ass balls first because it involves things that I don't want to face up to. However, you're probably not surprised (if you're familiar with Dominic's list of bodily 'issues') that, even though I rarely make reference to them, bubbling away in the background are constant hospital appointments, therapies, illness, medicines and the like that are in fact just the boring routine of family life around here. In fact, not long ago, we emerged blinking into the sunlight from a weekend stay in our local hospital thanks to a temperature. Yes, really, it was only a temperature, but it scared me enough that I forgot any notion of trying to muddle through it to save face at the children's school. Of course I'm under no illusions, and neither are my long-suffering offspring, that I am anything close to the slick, efficient and patient multi-tasking mothers that keep PTAs like my children's school's committee ticking along, but I do try. This afternoon was one such moment when I just happened to have a hall full of 60 plus children that I was meant to be looking after. I know that I could avoid getting myself into such situations and not volunteer to help out and no one would mind, but my pride and my desire to integrate my family into the school seems to make my mouth open and offer to help even when my head is flapping its arms around in disbelief. The result is that I ended up dragging my children from a school hall packed with children hurriedly saying "sorry " to the other grown ups I landed in it and made a hasty exit. Dominic has a hickman line you see, and so any temperature could be the sign of a very serious blood infection. So, with a cold dread spreading through me, and Lilia sobbing at her window, just to make me feel truly wretched, I drove Dominic to the Children's Emergency Department. Dominic likes to create the illusion of being well, in the same way I like to pretend that I'm a merely slighter swearier version of Mary Poppins, but despite his exasperated "I'm fiiiiiiine"s to the junior doctors, he was admitted until we could persuade the community nurses to look after him at home.
So, having just come out of hospital, I dragged my poor sickly child to an appointment that I had already cancelled three times due to other, more pressing appointments. I have to say that it's not one I normally enjoy as it's with the development paediatrician. He's a lovely softly spoken Irish guy, and I have nothing against him personally, but he is the one that put in black and white in front of me just how far behind Dominic was when I was first trying to come to terms with the vast array of issues that life had thrown at my baby. When I thought of him, I thought of being depressed, so I tried not to think of him very often, and see him even less. But this appointment was unavoidable. Having
bribed prompted Dominic to behave before we went in, I was hoping that we could get through it without feeling the need to cry as we re-explored everything that he couldn't do. My tactic was to just get in there first with everything that he could do. You can imagine, therefore, how wonderful it was to see the paediatrician, physiotherapist and occupational therapist's jaws hit the floor as I catalogued all the things that Dominic has achieved in the year since he left the hospital (yes, really can you believe that he ended his 8 month stay nearly a year ago now?!). The only disadvantage to this approach is that they then want to know details and I have to skirt over the fact that when it comes to children like Dominic, professionals don't always know best and all of the things that he is now doing, we have done off our own bat. Of course I'm not saying that you should ignore the professionals that are involved in your child's care, far from it; but trust that your contribution is as valuable, if not more valuable, than those health care professionals that are so part of our lives.
And this leads me to the point of my posting today. After we had seen the developmental paediatrician, we went to the main physiotherapy room where we saw a very nice man with a standing frame for Dominic to try. Dominic hates being in the standing frame, and I can understand why. Every last bit of him is strapped tightly in to a metal frame that hurts him and it's hard work, it's bloody hard work. Why would he want to go in it- unless we made it fun? To cut a long story short, I was told that nothing existed that could make it more fun. Luckily, the same instinct that sees volunteering for the PTA as an interesting challenge kicks in, in other situations, too, and I don't tend to listen when people tell me something can't be done. Below is the result…