His Name Is Jay

From left to right: Jay, Tye, Tabitha, and Zak trying to get a good Christmas photo. (Image: @one4kazz)

15 years, 10 months, and 24 days ago, my Mum had to have an emergency cesarean. She was pregnant with a set of identical twins. The doctors told her it was because they had to save at least one of them. One of their heartbeats was on and off. Of the two that were cut out of my Mum’s stomach, one of them was diagnosed with an extreme case of cerebral palsy. They were named Tye and Jay, and they had to be hooked up to all sorts of support to help them survive. Jay had to spend the first four months in hospital, and Tye had to spend three. Both were the size of my Stepdad’s hand.

They were both prone to getting infections, so they were kept in an incubator, and the only way I could physically touch them was by putting my hands through two holes. As a five year old, it was a confronting experience - but only because I had never seen it before. They were my younger siblings, and I was there for them. 

Jay and Tye when they were younger. (Image: @one4kazz)

Having a brother like Jay is exciting. Since meeting them in hospital, I grew a newfound appreciation for people and life. For the first year of Jay’s life, he needed a constant oxygen source - which meant when he left the hospital, we were given an oxygen tank for him. I was ecstatic to have siblings. It meant I could crawl into their cots when it was sleep time and read to them. 

Jay can’t see, he can’t walk, and he can’t really talk unless we get him to sound out some super simple words. He also can’t eat like we do. He is given water and blended up food through a tube, and he is given special milk to keep his bones strong. I still remember learning how to tube feed him and being told it was important to follow the procedure. 

Whenever Jay gets sick, he gets super sick, which means my Mum or Stepdad has to take him to the hospital. When I used to live with my family, it was ideal for us to keep our distance from Jay if we were sick, to reduce the risk of him catching anything. When he vomits, the nurses have to connect him to an IV drip to administer liquids that stop him from vomiting - because he will keep vomiting, even if there’s nothing left in his stomach. 

He also has a shunt in his brain, which means that when he’s in a situation where he’s sick, he needs to be taken care of so carefully. The shunt is a narrow tube that goes from his brain to his stomach, allowing cerebrospinal fluid to travel rather than build up in the one area. I’ve seen my brother go to the hospital even when he has something as simple as a fever, because of the life or death risks. 

One of the most amazing things about my brother is that he would know who it was walking down the stairs in the mornings. If it was me, he would blurt out ‘kuk kuk’ (my nickname), if it was his twin he would say ‘tyeeeee’, and if it was my youngest brother, he would say ‘zakky’. 

Another amazing thing about him is that throughout all the scares we’ve had with him over the years, including death scares, he smiles and laughs. When he comes out of surgery, he goes straight to throwing the blankets around in the most innocent and playful way, and he’ll yell out to his Mum or Dad. 

Jay is the strongest boy I know. Despite the fact that he can’t see his family, he knows who’s who. Even though he can’t walk, he can sit himself up when we give him floor time, and he helps us clothe him. While he can’t eat solid foods and ingest things through his mouth, we let him try yogurts and ice cream, and he’ll just push the spoon away though and laugh. Although we can’t always communicate, he’ll try his best to say ‘I love you’.

Jay on holiday in Coffs Harbour. (Image: @one4kazz)