Even though twins run in the family, it still came as a shock to Rajbinder and her husband, Manohar, that they were due to welcome two new additions into the family.
“I just didn’t expect it to happen to me,” said Rajbinder. “I was quite overwhelmed when I was told and then so excited. Manohar wanted a boy and I wanted a girl, so when we found out it was one of each it was so exciting.” After a straightforward pregnancy, the couple welcomed Arjun and Gurleen into the world – on their grandma’s birthday. “It was a double celebration for my mum!” Busy family life began, as the newborns settled in at home with older brother Yuvraj, who’s now four.
It wasn’t until the twins were around three months old that Arjun started to display worrying symptoms. “He started to have seizures so I took him straight to hospital,” said Rajbinder, “they did numerous tests and we were referred to Great Ormond Street Hospital.” Arjun was diagnosed with epilepsy and hypoxic ischemic encephalopathy, a complex condition that affects development, cognitive and motor skills and neurodevelopment. It was a lot for the family to take in. “I can’t remember when we slept, we’d try getting an hour during the day when Arjun slept, but he hardly did due to the seizures.”
Over the next few months Arjun was in and out of hospital. “I’ll be quite honest, it was hell, especially when you’ve got newborns and a toddler who are getting colds and picking things up. The first few years were constantly like that, especially during winter. I had days when I just cried because I was so tired.”
Not only did the family have to try and cope with the physical demands and pressures of Arjun’s condition, but also the emotional effects on the whole family. “Arjun hasn’t been able to have a special bond with his twin sister; we had to keep them separate when he was younger because of risk of infections. I feel his twin has missed out on a lot, which is sad, but the happy bit is we’ve still got him.”
Arjun was one and half year’s old when the family was referred to Shooting Star Children’s Hospices. “We were like zombies, so overtired, living on coffee and snacks. We were trying to ween Gurleen, Arjun’s sister, and she was trying to crawl and stand up, whilst Arjun wasn’t able to do any of that. It just felt so isolating, but I thought he’s the one suffering – he’s the one going through it and we needed to get him the best support.”
Initially the thought of a children’s hospice was a daunting one for Rajbinder. “At the beginning it was quite scary. I wasn’t ready to know about it, but our key worker sat down with me and we talked it through. It was quite disturbing to think about, but I knew I needed to face reality. When we came with Arjun, they showed me around and I saw how well the children are looked after and thought there isn’t anywhere else I could send him where he’d have such special care.”
Arjun regularly attends day care at Shooting Star Children’s Hospices’ Hampton hospice. “When he comes to Shooting Star House he’s so happy to be here. He’s visually impaired so loves the sensory room. He’s developing at Shooting Star House, he loves it. They do lots of stimulating things with him, it’s the only time he’s awake! The team are just amazing, if it wasn’t for them he’d be stuck at home – we wouldn’t get out of the house.” The time Arjun spends at day care also gives Rajbinder the opportunity to do everyday things. “When he’s at Shooting Star House I can do normal things like the shopping as he can’t be left alone when he’s at home. We’re so lucky that he can come here; we don’t have to worry if he has any seizures as the nurses are brilliant at what they do and so hands on with him. They experience tough things, but they’re all just so hard working and strong. They give 110%.”“He hardly sleeps at Shooting Star House because he’s having fun – something he doesn’t have that much of at home as it’s so full on. He’s socialising and developing with other children and his personality is coming through because he’s so comfortable. There are no guarantees in life, you just have to make the most of the time you’ve got with your family and keep positive, and Shooting Star Children’s Hospices has proved there is a light at the end of the tunnel.”
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