My Sister is a Light

Well I have spoken about my own story many times, and how it leaves me uncertain, I have been very careful to leave out deeper insight on my family. And well I won’t be dishing out any secrets or scandals (we aren’t that exciting of a family), I didn’t think I would speak too much about them.

However, the entire point of ‘The Thoughts of an Uncertain Mind’ was to create a blog were I can write about anything and be honest about it. Which has been a wonderful exercise in developing my own voice. And I like to think it’s helped to inspire many of my readers as well. Especially when we often consume a lot of media based in fantasy rather than in reality. And that need to escape into fantasy often grows as the world becomes a darker and scarier place. But I believe that there is something beautiful in remaining relatable and real even in times of intense dreaming and imagination. Which brings me into a huge subject of worry any pain; my sister.

I love my little sister. She is a beautiful light within the world and she makes me laugh. I would do anything for her. But now that we are grown up and I see more to her disability, I find myself panicked. And I wonder if my parents go through it as well. My sister has been special from the moment she was born, in the joy she brings to the family but also in that she is special needs. I grew up with telling people she is special needs, and I am not sure if this is even the best word from it. But I find myself shy away from words like disability and handicap because people tend to be critical and prejudice with them. Plus I don’t have a good name for what my sister has. Yes there is a medical name for it, but it’s long and I often cannot remember it. I’ve mostly translated it to, we don’t really know the full extend of it. Which does tend to be the case for a lot of illnesses and conditions outside the norm. But she is in a wheel-chair, she does not talk, she has seizures and does not have fine motor skills. She will never be able to live on her own or take care of herself. But I will be very clear when I say my sister is not broken.

But she worries me. I realize that since I am older I may be able to see it more and it’s harder to hid it all. But I do remember a lot of my time when I was a teenager. And from my eyes, it feels like the seizures are getting worst. Sure there are days where there isn’t anything, but there are times were there are multiple a day and they last so long. I know I am not a doctor. So I don’t know how this relates to her health, if it is damaging her brain or significantly hurting her quality of life. It’s hard to really quantify it some days as well because I see her good days too and she is so happy. But I worry constantly. And I worry that my own choices in life will ultimately come to effect her if I am not stable and sold to take care of her. I love her but I find myself scared sometimes to let someone else in. Because to me she is a part of the deal. Because I am the one who will one day look after her well-being. I have always had that notion that I would. And as an older sister, I have always been honored to take the roll. Even if it’s been exhausting, even if it meant I was more of a stay at home teen. After all she is my little sister. Being one of her caregivers has always been one of my roles.

But now I am older. Now my parents tell me not to worry so much. That they will take care of it, they will have her set up long before they are gone and that I have to live my life. And well that feels so freeing in many ways. It makes me feel strange inside. That was always a part of my life. I was the back up. I took care of her so they could go on dates, get groceries, and sometimes for a bit after school if the aid work needed to leave before they got home. And in some ways I liked it. It got to be me and my sister at home. Her giggling and getting excited that I would come downstairs to hang out with her and dance around to music. I’d sing to her, read to her. But I also was there to change her diapers, feed her food, sit with her when she had seizures. Sometimes I would have to get mum up in the night when she’d have them, sometimes I would try and take care of it myself. And there isn’t a way to sugar coat it. It was scary. And some days as much as I loved taking care of her, I hated it too.

Some days having to make food and feed her was a pain, and I was worried she’d choke. Getting her out of bed was hard. And changing diapers was unpleasant. But I did it the best I could. And so when I am faced with the new prospect that it’s going to be set up, that I don’t need to move home, that I do not need to be so worried that I will need to financially support her and care for her. I have two worries; one that I have failed my parents or that they want to make sure we are both covered for the future, and two… they like me worry if we will outlive her.

And I’ve said it. The biggest shittiest fear I have about my little sister. And I know it is realistic of me and it doesn’t make me horrible to think that way. But I know the question has upset my parents in the past… what is her life expectancy?

Like anyone, the answer is, we don’t know. She could outlive all of us. She could live a long beautiful and happy life. She could be a joy and love that we have to say good bye to. Because the reality of it is that life isn’t promised to anyone and there is no guarantee that just because you are older you get to die first. And I suppose it makes me feel messed up in away because I don’t think people just sit and wonder when their family will die. And yet I worry about it all the time. Especially about my little sister. Because it’s not something I can take from her. I can’t give her one of my kidneys to change it. But I also don’t think I could change her. Because she is so beautifully her as she is. So even though I find myself worrying more and more about her health and find myself uncertain about the things I cannot control, like time….. I know that she is going to be a huge beautiful light in my life.