My name is Diane, and I want to talk about what is actually like to be a disabled parent in 2018. I have osteoarthritis and osteoporosis in my entire body, plus anxiety which comes from the conditions which make not just my life difficult, but my younger children’s lives hard as well. We make comprises on most things, especially when out. I have five children from 26 to 6, for the last 9 years, my life has been changing to accommodate my health needs, so I can actually cope with raising the younger two. But this comes with constant comprises, some of which you don’t think of. Sure, there us the easy ones like parking when out, because I have a blue badge so we never struggle to get a space! Going out with my children takes planning and always my needs first, even a trip to the beach means I worry about things normal parents don’t. Such as access to the beach, can I get on to the sand, can I walk with crutches on it (no is the answer, not easily), can I sit on a chair and get up again? (No I can’t.) So I opt to sit on the promenade with a book whilst my children play with daddy and if I am lucky I might be able to watch them.
It’s not just beach trips we comprise on, Halloween is another one. I can’t walk far enough to take my daughter trick or treating, so it’s her elder sister that takes her. I stay at home where I am safe because when out, I can fall and this is traumatic not just for me but for the kids because no child needs to see their parent in pain, discomfort, or on the floor unable to get up. Regular mums don’t have to take another person with them out shopping or on days out with kids. I, however, have to because I can’t carry bags, it’s tricky with crutches or in the wheelchair. I depend on someone to help at all times, nothing is easy everything takes effort. My children are super aware of my condition and accept mummy can’t push them on a swing, get in a pool, they see me in pain, in hospital after a fall and they never complain. They have an awareness beyond their ages of disability, they know mummy can’t even attend their school assembly without making sure of every little detail before agreeing to go. Because they are growing up with me, they don’t get fazed by disability out in the big wide world, they don’t stare, they accept other people’s problems and don’t ask questions.
Some people ask me if I feel guilty for having the younger two so late in life and making them go through life with a disabled parent. I don’t think being aged 38 & 40 when I had them us so late, I didn’t have the problems I do now and sometimes I do feel guilty. When I can’t take them out when I have to watch others help my child because I can’t, but I am blessed with an amazing family who supports me and help raise the younger two. Who have to watch me say no I can’t come especially when the weather is bad and my anxiety at falling when out is so high it stops me going out for days on end, so they either have to stop in or daddy takes them out. There is also chronic tiredness that happens when it’s too much effort to do anything except sleep, which means they see the signs and know mummy is struggling. There are things I can do, I can watch endless amounts of youtube videos with my daughter of kinda eggs being opened! I can watch TV from the safe space of a sofa with them. I try to always try and go out with them. Go and support them at school no matter the pain/discomfort it brings me and means more rest!
Yes, there are perks if you want to call it that, we don’t queue, we get priority boarding on an aeroplane, for Disney we will get fast pass but I would swop it all for just to be able to go out independently, to be able to pick my child up and take her out. My condition means I am probably never going to improve but I am not ready to just dug on the sofa and watch daytime TV, so I will continue to try.