I never thought I’d hate the snow. I always loved to see it as a child and as an adult. Up until today really, ok I never liked driving in it but today the few inches we have had have really pissed me off. Why? Because it meant that my daughter’s school bus couldn’t get through this morning and she couldn’t go to school. That ordinarily would disgruntle me a little but I’d get over it, but today she was supposed to be going back after having been off sick for two weeks. Now I know children get sick and its all part of being a parent etc. etc. but it is somewhat different when the child has special needs. Obviously the level of need and its impact varies considerably from child to child but in our case, Fionnuala cannot walk or stand unaided. She cannot take herself to the toilet and has only a limited ability to feed herself. She has about 50 words and a few short sentences she uses correctly but a sizeable amount of our communication with her is by guessing what she is trying to day. That can be very frustrating for both of us.
Keeping her amused over the last fortnight has nearly driven me round the twist. She is not a hard child to amuse – as in there are plenty of things she likes to do – but what I have found hardest over the last fortnight is not the extra lifting and carrying (and my back is paying the price) or the extra nappy changing, feeding etc. combined with lots of nose wiping and medicine administering. No it’s the lack of what I can only describe as headspace. Not being able to sit and read a newspaper article in one go because I have to sing Baa Baa Black Sheep again. Not being able to do my community work or historical research, not being able to listen to a radio programme because Fionnuala wants to watch CBeebies (and the house is not big enough for both to be on simultaneously), not being able to think clearly because I am being asked to read every 10 minutes (and it’s the same damn book every time), just not being able to read, write, research is driving me mad.
Being a wheelchair user means that taking Fionnuala out to play in the snow is not really an option. She can’t run around in it to keep warm, she can’t make or throw a snowball, she doesn’t understand what snowmen are about.
But it’s no one’s fault. It’s no one’s fault Fionnuala was off sick. It’s no one’s fault that the bus couldn’t get over the mountain this morning. But I don’t cope with it very well. After the last two weeks I was so much looking forward to F going today and when the bus escort rang to tell me they couldn’t get over the mountain I felt like screaming. I know that this is how things are and I know that I am lucky to have her here (and I really do KNOW that) and I know that her level of need is much less than some other children with special needs. I know all that. I also know that I have to just get on with it. Generally I do. I don’t have a choice of course, but generally I just pick myself up and carry right on. Some days it feels like it’s never going to end. I do wonder sometimes how other parents of children with special needs keep on going.
I am very well aware I am lucky to have such a beautiful adorable loving daughter, an amazing husband, a warm comfortable house, enough to eat, books to read, a good brain, access to TV and internet. I just want a little bit of headspace too. Today is not a great day. Hopefully tomorrow will be a lot better and I’ll be more cheerful and write a nice cheerful post. But there are days when it all just feels like crap. And today is one of them.
Its still bloody snowing.