Looking after my daughter is very difficult. She is an incredible person and I am so proud of the woman she has become, but she has a disability that has seriously controlled her life. She’s not allowed to drive which means she has very little independence and is scared to be by herself in case she has an episode in a life-threatening situation. I’ll admit that this isn’t how I imagined what my life would be like as a mother and oftentimes I wish it were different, mostly for my daughter’s sake. I feel like she’s suffered so much and even though she certainly makes the best of a bad situation, I know she struggles.
After her last episode, she injured her shoulder. She had to visit a shoulder surgeon in the Melbourne CBD to get it checked out, and then she ended up requiring a rotator cuff repair. I felt so bad for her. It was a better result than having to get a shoulder replacement, which would have really upset her. She was already devastated that she had experienced another episode. She didn’t need that extra stress in her life.
I was personally worried that she had damaged her scapula. I’m no doctor by any means, but I had damaged my shoulder once before and the way she was describing it reminded me of when I had to get a scapula fracture fixation. I now have all these metal plates and screws on my shoulder, and I always have to declare them when travelling on an aeroplane or going through metal detectors. It’s quite annoying.
Truthfully I just want the best for my daughter. I hope that she doesn’t have any more episodes or need any more surgeries. I just want her to be able to live her best life and do what she needs to do. I want her to be happy and healthy for the rest of her life.