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.


  1. Oh honey, all of the best mothers feel that they are not doing as well as they could, or should be. We all start out with these expectations and intentions and then we have that first baby and get hit with reality. It's hard even when your child is born with no special needs, when there are extra problems, especially unexpected ones it can feel impossible. If your kids are as happy and healthy as you can help them be 80% of the time and you are doing the best that YOU can do 80% of the time then you are doing an AWESOME job.

  2. Shannon, you are so articulate and honest. I read what you say and it's as if you've read my mind. That probably isn't very helpful to you; I wish it was. It's very hard to describe to anyone outside this hellish club we both belong to. I have cried this morning for the very same reasons yet I still haven't put Tom's splints on. Instead he is rolling around on the floor in a very "unphysio" fashion. But that is life. You do what you can when you can. I constantly compare myself to other Mum's of disabled children and beat myself up about how little I do in comparison. But then I look at my family life and think, well, hey, Tom has as "normal" a life as I can give him. He gets chucked down a snowy hill on a tea tray in a way that would make physios squirm. He watches ooodles of crap telly and he gets jumped on/ over / around by his brothers and whatever other kids and animals happen to be around. He doesn't get hours of physio and he screams if I attempt any form of communication or "school" type work with him, which is my excuse not to do it. I feel like a crap Mum. Nothing like the person I envisaged I would be. And, if I'm honest, I resent what has happened. But then, like you, I know that there are always people in more "difficult" situations. Maybe. And there are nice times. And for the record, ignore people who say it gets harder. It doesn't. It just changes and you adapt. Come to Notts and join us some time in the crap, no physio house. We could make things even more "un-pc" by drinking loads of wine... then, perhaps, in our drunken state, we will remember who we really are and that infact we are FAB MUMS! Sometimes. Just a little more challenged than the majority. Rant over. No order or organisation to this!! Lots of love Helen xxxxxxxxxxx

  3. Rogue apostrophe above!!! Paul will smirk!!! Helen xxxxxxxxxxx