Siblings – Georgina, Danny and Elise

We asked people who have a brother or sister with TSC to share their stories. These were published in the April 2018 issue of Reach Out. Thank you to each of the siblings who volunteered to share their stories with us.

Georgina’s Story

I am 23 and my younger brother Jacob is 21 and lives with Tuberous Sclerosis Complex (TSC). I am studying at university, in my final year of music therapy, combining my love of music and psychology. Jacob works at Bedford Industries, an Australian disability enterprise, in their packaging team. We grew up in Ballarat and now live in Adelaide.

Jacob is the life of our family. We’re generally a shyer group of people, but Jacob can make conversation with anyone. He brings so much joy and an almost child-like innocence that has stuck with him even as he’s grown up. Everyone thinks the world of Jacob and he makes friends really easily. Even though TSC has caused Jacob many challenges, we feel very blessed to have him.

The major impact of TSC on Jacob’s life is his intellectual disability. He has some more advanced social skills, but isn’t able to read or write or do basic mathematics. Of course, he also has the physical signs of TSC and sees lots of doctors to monitor how the tumours throughout his body are growing. He had brain surgery about 10 years ago, but everything else has been under control, which is great. Jacob takes it all in his stride.

Although I have nothing else to compare it to, I think being Jacob’s sister has made me more understanding.

From knowing Jacob and his friends, I have a different perspective and am more natural with people who are different.

Growing up, I don’t think I really knew that our family was different until later in primary school. We’d be out in public and Jacob would just start singing. He’s always been a free spirit. People would walk past and think it was bizarre, but we’d just think, ‘That’s Jacob and he’s having a great time.’ I can remember being with a large group of friends from our church and Jacob decided he was going to get up and perform a song, possibly not the most appropriate song choice of, ‘Don’t cha wish your girlfriend was hot like me’. Everyone knew Jacob well and, although it caught everyone off guard, we generally just let Jacob be Jacob and all enjoyed his singing and dancing.

Of course, life wasn’t always singing and dancing. One of the hardest things is when my patience is challenged. Jacob can be very fixated on things, such as his current obsession with flags. It’s just so intense and relentless and it’s been an obsession for the last 10 years. It’s harmless enough, but it does get tiring.

I can’t ever remember feeling like my parents gave Jacob too much attention or that they didn’t help me enough. If Jacob needed someone with him, it was often Mum with him and Dad would spend more time with me. My grandparents also played a big role and if Jacob needed both Mum and Dad then I would have a great time with Grandmother and Grandad. They’d also check in with me regularly and make sure I was ok. Even if there was a physical distance, calling and having a chat showed me they were thinking of me and they loved me.

I know everyone is affected differently, but if I had to offer advice to someone else with a brother or sister with TSC, I’d tell them to be open to what their sibling can teach them. For me, Jacob reminds me to enjoy the small things, to not be too quick to judge, and to be more loving. Even though it does come with many challenges, there are definitely gems that you can grab out of your situation.

Danny’s Story

My name is Danny and I am 13 years old. I live in New Zealand and enjoy hockey, swimming and playing computer games. My younger sister Rylee has Tuberous Sclerosis Complex (TSC). We found out when she was 2 days old and I was 3 years old. I didn’t really understand at the time but I knew that Mum and Dad were very worried.

TSC means that Rylee’s brain works differently. She takes longer to learn new things and gets really grumpy when she’s not happy. When she was younger she would sometimes get so angry that she would hurt me, but it’s been better recently. She also used to wake me up in the middle of the night when she had trouble sleeping. She just couldn’t understand why I did not want to get up and play at 3 o’clock in the morning and shake me until I got upset and my Mum came. These days she knows that she has to stay in bed and play by herself until it’s time to get up.

Having a sister with TSC has meant I have learnt to do many things differently. I had to learn how to play differently with Rylee. For example, when we play hide and seek I can’t go and find her straight away.  I have to pretend to take longer even when I know where she is hiding. I don’t mind doing this as it makes her enjoy the game more and it is cool to see her happy and laughing while I pretend to look for her. We do enjoy being together and I’ve even taught her how to play Minecraft, a computer game where you mine for materials and then build things. We have our own Minecraft virtual world where we play together and she builds some really crazy things! This is one game that she can play by herself and I don’t have to worry about her not knowing what to do. I find it a really special thing to share.

Because we go to a small school, Rylee and I are in the same class. This is ok, because a lot of the time she’s doing her own work separately from the rest of us. But if Rylee gets hurt then people do ask me for help. Sometimes this worries me as I won’t be at school next year and I won’t be there to help her. I explain to the kids at school that Rylee learns differently and that she has a bad temper. Some kids understand it, but others, especially the younger kids, don’t. I have 2 best friends who really do understand Rylee and enjoy playing with her. We even share our Minecraft world with her and give Rylee her own space to build in. It is important that my friends accept Rylee for who she is. I don’t think we would be friends if they were mean to her like other kids are sometimes.

At school last year, I gave a speech about what it was like growing up with Rylee and her TSC. I told the story of how she made up her own words to New Zealand’s national anthem. Instead of singing ‘God of nations at thy feet’ she would sing ‘Mother nature, 1, 2, 3’! That got a few laughs from the audience. It also felt good to share with people how tough it can be for my sister and that they should walk a mile in her shoes. I am very lucky I don’t have TSC.

Sometimes I do feel left out because of Rylee’s TSC. When Mum and Dad took her to Brisbane for a hospital stay I went to stay with my grandmother. I didn’t like feeling left out of their trip. But generally Mum and Dad do a good job of treating us both the same. There is one exception – because Rylee doesn’t understand money yet she doesn’t have to save up to buy things like I do. When I buy something with my money Rylee often gets something bought for her. This annoys me a bit.

I think being Rylee’s brother has made me more understanding of how people can be different. There are 2 other kids at our school with learning disabilities and lots of kids leave them out or get angry with them. I know they are different and I am much more patient with them.

Elise’s Story

I am 15 and in Year 10 at school in Brisbane. I have 2 younger sisters, Dayna and Evie. Dayna has Tuberous Sclerosis Complex (TSC). In my spare time I enjoy dancing and reading.

TSC has a big impact on Dayna’s life. She needs to be helped with everyday tasks such as showering, dressing and eating. She attends a special school that is 45 minutes’ drive from our house. Dayna was very slow to walk and crawled for a long time. Even now she can’t walk for long periods and is still in a stroller. She has around 40 seizures each day, most of them minor. Her epilepsy medication means she has problems controlling her temperature, so we always need to have air conditioning. If she gets too hot Dayna can get really angry and also start having seizures. That’s stressful for everyone.

One of the biggest impacts on my life is that I don’t like being away from home for very long. When I was younger and went on a sleepover I would start panicking and worry that Dayna may need to go to hospital and I wouldn’t be there to help. These days I can be away from home, but I manage by staying in frequent contact and reminding myself that, even if something happened, there wouldn’t be too much  I could do. My friends are very understanding. Most of them have met Dayna and love her – everyone usually does!

Dayna is really happy 95% of the time. She’s fairly easy going. I am one of her favourite people and she’s always hugging me. We like watching TV and going to the park together. She’s my best friend.

Dayna has a group of friends that she’s made at  school over the years. I have met some of their families and I enjoy talking to the other brothers and sisters in that group who understand what it is like to have a sibling with a disability.

For our family, it can be hard for all of us to go somewhere together. If Dayna is upset, then all or some of us may have to leave wherever we are to look after her. This is a contrast to my friends, who talk about going out somewhere together as a whole family.

I think being Dayna’s sister means I have more initiative. I help Dayna with medication and showering each day. That might sound like a lot of work, but I enjoy doing this and Dayna is easy to hang out with.

A few years ago we decided to get a dog for our family because we thought Dayna would be really good with a dog. My Dad took all 3 of us to the rescue shelter. While we were there Dayna had a meltdown. Everyone else in the shelter was staring and glaring at us, not understanding what was going on. I took Dayna’s hand, picked her up and took her over to the cage to give her something to hold on to. The one dog that was not barking at Dayna came straight up to her and licked her hand. Dayna calmed down completely. That dog is now called Goderick and he’s a much loved member of our family.

If I was talking to other people who have a brother or sister with TSC, I’d tell them to focus on trying to understand their brother or sister. Everyone with TSC is different but they all have their own likes and dislikes. Taking notice of these things and figuring out what can upset them can be really useful.

My parents encouraged my sister Evie and me to do activities outside school that they can go with us to. Evie does gymnastics and I dance.

When I think about the future I hope I will never be far away from Dayna. I know that she’s going to be ok.