Sunday, 10 March 2013

Happy Mother's Day Shannon!

As you may have seen from the previous post, Shannon’s been struggling a bit with being a mum. Or, rather, struggling with being the mum of a disabled child. Or, rather again: struggling with the guilt and worry that comes with being the mum of a disabled child.

Which, as someone pointed out, is more evidence of a what a great mum she is. Because she does genuinely worry about all that stuff and does genuinely beat herself up about it.

That she doesn’t need to beat herself up is a given. Of course she doesn’t need to beat herself up. But she does and she will.

I think part of the problem with this is that we’ve both been pretty good at putting on a brave face and getting on with it. If you only know us from this blog then you might think that all we do is moan and get upset. But that’s not true. This blog is a specific outlet for that kind of thing. In reality, in our day-to-day life, we just get on with it. For instance, when we’re asked by friends how things are, we tend to reply: “Oh, you know, the usual.”

To be honest, I think that may be part of the problem: we don’t give ourselves enough credit for how hard all of this is. We take it in our stride but are occasionally tripped up. I used to think, when people said “I couldn’t do what you do” that they could. But now I’m not so sure. Being on Twitter these past three years has opened my eyes to how some people can’t seem to cope with even the most trivial upsets. The big babies. But then, maybe I’m being unfair – maybe Twitter is as much an outlet for their moaning as this blog is for ours. And of course everyone’s entitled to their problems and everyone’s entitled to moan. I appreciate that.

But – and this is leading somewhere- I genuinely believe that not many people could do what Shannon does. It’s not just the coping and the managing and the getting things done. It’s also the dealing with this not being what she thought motherhood would be. And dealing with the sheer fact and heartbreak of having a beautiful daughter who is severely disabled. Who will always be severely disabled. This isn’t the same as having a difficult baby or troublesome kids or whatever. This is for the rest of her life.

I wanted to write something for and about Shannon on Mother’s Day. But I didn’t want it to be just the usual dippy ‘best mum in the world’ stuff. Besides, what she has to deal with often isn’t just the stuff you’d normally associate with being a mother. Shannon isn’t just a fantastic mother because she’s great at all the maternal stuff. She’s a fantastic mother because she’s a fantastic person. And yes, this might sound trite but: both of our girls should be very happy and grateful that they have her for a mother. They could have had someone else. Someone not nearly as brilliant and as wonderful as Shannon is.

Thursday, 7 March 2013

Mother's Day (Shannon)

This Sunday is Mother's Day in the UK - and the whole mum thing is something I've been thinking, and worrying, about a lot lately. Not just lately, actually - I think and worry about it pretty much non-stop. Which is very annoying - like having Guilt FM broadcast through my mind 95% of the time. And playing loud too.

For obvious reasons, being a mum isn't how I thought it would be. Or how I thought I would be. All my life I've been good with kids - fun, patient, natural. I liked them and they liked me. It was easy, and yet being a mum isn't at all. It's really, really hard and although I do still feel natural, I don't feel like I'm fun or patient. And I move constantly in my feelings about that - from beating myself up for not being happier, more patient and more fun to resenting the circumstances that have made it so difficult to be all those things. There are so many, many times when I'm not enjoying being a mum, and that just feels wrong and awful. It isn't how I'm meant to feel.

I wasn't expecting this landslide of guilt every day - especially with Maggie but also with Alice. I don't put Maggie in her standing frame every day like we're supposed to. I don't do anywhere near enough physio with her. The same goes for her body suit, her sleep system, her splints, her communication. I think I just want to be a normal mum, and those things aren't normal. But not doing them will wreck her physically over time - and for all the guilt 'normal' mums have for their children, they don't have to deal with that.

But I do. And moving in these disabled circles, so many other mums do too. The last time we were in hospital to change Maggie's tube a severely disabled 11 year old girl was just across the way. She'd been in hospital for four of the last six months and she was dying, her brain was shutting down bit by bit. As much as I have to imagine with Maggie, I couldn't imagine that - and I felt lucky. Going to Quidenham often makes me feel lucky too. It could be so much worse - and I am so grateful that Maggie is as bright and responsive and happy as she is. That she knows we love her so, so, so much - and that she can express her love for us.

I know I'm a good mum to Maggie and to Alice, but I'd like to be better. I'd like for it to be easier but I fear it's going to get harder instead. And sometimes I'm not sure how much harder I can handle. They're such beautiful, wonderful girls, my girls, and they deserve the mum I was going to be.