By SWAN UK MEMBER, PARENT REP FOR NOTTINGHAM AND BLOGGER, JO BURT - itsallapickle.wordpress.com
I’m at a cheer leading competition with our non swan. Our normal healthy neuro-typical nearly 18-year-old child. She still wants me here at competitions all be it in the back ground to celebrate when it goes well and pick up the pieces when it’s not gone so well. And although hanging around an arena for 10 hours to watch her complete for three minutes may not be what I would choose to do with my Sunday I’m happy to do it….cos this is what ‘normal’ mums do isn’t it? And it’s nice. We get to spend the day doing something that is all about her. No compromise cos it would be too difficult to do with Jacob. I can chat to the other mums; I have some lovely friends here (shout out to all cheer mums! No wait actually all parents hanging round a gym, pitch, ice rink, swimming pool or show ring! )
I take some time away from the noise (and it’s loud) for coffee and a bit of work on my blog. I’ve left the boys together to do boy things. So not that different from a normal family on the outside. But I still feel bad. Its hard work taking care of Jacob on your own. Maybe a little easier for the old man simply because he’s bigger but mentally its taxing and it’s not right that he should have that on top if being the bread winner of the family. We couldn’t bring Jacob to competitions; It would be far too overwhelming and he simply can’t hang around and wait! It was only a couple of years ago that both the old man and I got to see Charlotte compete together .
But you know these are just the cards we’ve been dealt, just one of those random things that happens. I do sometimes wonder what life would have been like if things had been different and he was a regular child. The “what if” pops up now and again. Usually during respite care. When he’s not here I get a glimpse of a normal life.
I know a lot of things would have been different. I would have gone back to nursing and quickly have been sucked back into courses and more responsibilities. If I’m honest I really miss it and I’m reminded of this talking to a friend today who works in healthcare. I would probably be just as stressed but about different stuff. I certainly wouldn’t have the appreciation of the small (or now not so small) stuff. As I’ve said before, our son is healthy and he is happy. What else is there? And as the big one gets stressed out with A levels and Uni and “your whole life depends on the next few months” talks at school, more and more I seem to be saying ” it’s not the end of the world”. If you had told me 15 years ago I would have a severely disabled child, no real career because of him but not only would I (eventually) cope but find fulfilment in other areas of life, have some really good friends, be happy…and still be married… I would have said that was impossible. If I hadn’t been dealt this hand I wouldn’t be the person I am today. I wouldn’t have been working where I am, have made new friends, had the chance to have horses back in my life – something that has meant so much to me (blog to follow).
But does that mean it was meant to happen and all about “fate”? Absolutely not! There are so many turns our lives could have taken and so many tiny coincidences that are completely random. We decide what we do with all these chaotic events in our lives and make a life around them, try to make the best of the good stuff and cope with the bad. It certainly wasn’t fate that gave us a child like Jacob cos we could cope with it! Sometimes we don’t’ cope so well. But it certainly is what you do with what has been given to you that makes you what you are.