As a mother, there is nothing worse than seeing your child in pain. To knowingly create distress in your child is heart breaking. It kills me every time we get a test done. Every time something is done and it hurts him.
I want to hold him in my arms and protect him from the world.
I feel so alone, but in reality I’m not. So many parents go through this. So many parents want their children not to hurt and be in pain. They wish, hope and pray for their children to be better.
I have written my son’s story to share his journey and what it’s like to be diagnosed with rare diseases as a toddler. I want to also to share with other parents who are hurting and suffering along with their child, doubting themselves, wondering if they are doing the right thing, feeling like the worst parent in the world.
You are not. You are awesome. Most important, you are not alone.
When I was born, everyone noticed I had an eye that didn’t look right. I was referred to an ophthalmologist and saw him when I was two weeks old. My mummy was told that I had a coloboma and would be blind in my left eye.
When I was 18 months old I was very sick. I couldn’t walk, I could crawl only a little bit, but would often stop and cry, it was so hard. Mummy took me to the hospital. I had to see another doctor a few weeks later. She saw that I was still struggling to walk properly with my right leg and so I had an MRI scan. I had an anaesthetic and I was very angry and confused when I woke up. I smacked the nurses and my mum but I was eventually allowed to go home and rest.
I was told every six months until my last visit that the problem with my eye was a coloboma, but now the doctors say I have a morning glory disc anomaly.
On the same day I was told my diagnosis changed, I had to see a brain surgeon. He showed mummy pictures of my brain. He pointed out one bit over and over again. Going to hospital for more tests I was upset and confused. I didn’t like the medicine they made me take. Mummy kept saying ‘I’m sorry bubba. I’m so sorry bubba!’ I don’t know why. It was cold, I was confused! They wrapped me in a blanket tight and put a mask on my face, I hated it! I fought hard against them, but I went to sleep. I felt Mummy kiss me and tell me she loved me. I heard doors closing then… nothing.
They look at all the blood vessels in my brain to see if I have anything that needs to be operated on. The special brain doctor was worried I have an arteriovenous malformation. I woke up very cranky and upset again. I don’t know why people keep looking at me. Why they are looking at my leg. I want them to stop but they keep coming. I was finally allowed to go with mummy and grandma!
It was a few weeks later when I saw the brain man. He said I didn’t need surgery and he’s not sure what’s wrong. We are referred to a neurologist. We see doctors for my eye, and other doctors, I don’t know what they do.