Days go by now when I feel entirely normal. I still know what’s looming over us, but it’s like I can process it somewhere else, a part of my mind that is separated off and unemotional. Other days, like today, it threatens to overwhelm me again. Hubby is back at work today after a week and a half off dealing with this emotional bombshell, and I went into town after dropping Pudding off at playgroup. I expected to feel relief at the return to normality, and my usual lightness of spirit at being out the house with no children in tow. Instead, after getting what I needed, the cloud descended and it was as much as I could do to drag myself to the bus stop and get home. It is like all the life and joy suddenly gets sucked out of me. Partly I think it was Pudding being ill yesterday – nothing much, a lot of whinging, off his food and sulphur burps. But whilst he still can’t express what he’s feeling it’s hard to comfort him or know what to do. And I know it may get far worse than this.
There are lighter notes though. I’ve hesitated to tell many people about what is happening; partly because I am afraid of my own emotional response to sympathy, and partly because what do I say when it is all so up in the air still. But I did talk about it to another mother at playgroup last week, and I am so glad I did. Her eldest also has a rare genetic condition and they don’t know what the future will hold, but they’ve lived with it for almost 13 years now. She told me that the way she gets through it is to focus on the positive, day by day. Would be trite coming from anyone else, but from someone who knows what they’re talking about, it gave me hope that I can do the same.
I also spoke to someone from the MPS society which helped. They couldn’t really give me much information at the moment – I’ve read most of their website already – but knowing they are there is so reassuring. She listened quietly and patiently while I got emotional, and then told me what they can offer. She also said I can ring any time even if it is for a rant or a cry. And she said one thing which strikes me now as very wise – Pudding is the same little boy that he was two weeks ago, and enjoy him for that.