Tag Archives: disability

Positivity Isn’t Always the Answer.

I wouldn’t say I put on a brave face, but I like to think I keep a positive attitude, but again lately the mask is slipping. Another surgery in 8 days, more medication added to my daily routine. I am tired, I’m tired of operations, medications, appointments and keeping up a positive attitude. This next operation will be the 4th in less than a year and I’m tired of them and I’m tired of feeling the way I do. My life feels like week after week of sorting out mine and the kid’s medications, going to mine and the kid’s appointments, worrying about what is going on with mine and the kid’s bodies, the pain I and Robyn are in. This sucks.

There is nothing I can do to change any of this, and I know that but that doesn’t mean I can’t be tired of it all. It’s not like I don’t have a great life, I do. I have 3 amazing children and a partner who tells me every day that he loves me, I have amazing friends who are always there to listen. I don’t need more than that, but I do need less of the medical things. I would do anything for the kids, there is nothing that I wouldn’t do to help them and to try the medical problems they have from disrupting their childhood. I think having the same condition as them mean I know where they are heading, I know what might be coming for them. All the pain I have every single day could be their future and I hate knowing that more than anything in the world.

I spend a lot of time trying to be positive and actively trying to make the best of this situation for me and the kids but I’m really tired. The pain disturbs my sleep every night and getting out of bed in the morning is harder than you can imagine. I just need a break, mostly from my brain and the constant worries and planning of life around all the appointments. I talk to my friends a lot about the kids and my health and then spend a lot of time feeling bad for moaning at them and not having more interesting things to talk about. They are fantastic friends and listen and advise and I couldn’t be more grateful, but I wish I had other things to talk about, but all that stuff is my life. I am very aware that here I am complaining again but I have to get this feeling out or I will go crazy.

So, what can I do? I have no idea at the moment, September is a month of lots of changes the kids start a new year at school. Robyn started high school which caused her and me a lot of anxiety. She has already been bullied for her speech on her second day, her eyesight is declining all the time and she is having more and more problems with blurry vision. The pain in her legs is getting worse and her gastric reflux is causing her more pain her chest every day and there is nothing I can do. I try to keep positive for her and tell her I understand but all I can do is give her pain relief and worry about how much worse this could get for her. Can you imagine starting high school as a transgender child with eyes that are wobbling and turning in all the time, with a speech impediment and learning disabilities. High school is hard enough without all of that, I just want to take it all away for her. I’m her mother it’s my job to fix things for her but I can’t.

When you have children, you expect to worry about them, you expect it to be hard at times. I never expected the guilt I feel from not being able to make things better for them, I never expected to have to worry so much about their future. They may never pass exams or find it easy to get a job. Robyn will always find it hard to understand the world and the expectations of her from society. Her anxiety will make life so much harder for her and I can’t fix it. I am raising good, kind children but I worry that won’t be enough to make it easy to survive in the adult world. Positivity isn’t always enough; hope isn’t always going to be enough. So, in all honesty I don’t know where I’m going from here. I’ll keep trying to do whatever I can to make life as easy as I can for them all because that’s the best I can do. I’m not sure it’s going to be enough but I’m going to keep trying to have positivity even when I’m tired and I’m not sure if what I’m doing is going to help.