Date published: 14 December 2022 by Katie Inglis
Mum, Siobhan, shares her experience of bereavement, and the support Rainbow Trust offered her family during a traumatic time.
“During the pregnancy, we didn’t know anything was wrong, we just knew she was small. So, I had to be induced at 36 weeks.”
Just 6 days after Siobhan and Jonathan’s baby daughter, River, was born, she was diagnosed with Edward’s Syndrome, a rare and serious genetic condition. River was the first baby to ever get sent home from James Cook Hospital with Edward’s Syndrome. Siobhan and Jonathan also have three other children: Gabrielle, 9, Thomas, 13, and Willow, 4.
After she was discharged, River spent the 5 weeks of her life between home and Zoe’s Place, a baby’s hospice, where Siobhan, Jonathan, Gabrielle, Thomas, and Willow, could spend time with River, have family photos taken, and where River got to enjoy time in the sensory room.
“She loved being in the sensory room. And she knew when you were talking about her – she was very nosey! She’d look straight at you!”
“We were gifted a holiday for when River was here, so we could all go and spend time with her, as we didn’t know how long she had. She sadly passed before we got to go. But we still went – they told us to go and just spend some family time together. That’s when we explained everything properly to the kids and sat them down and explained everything”
“We’ve all coped in different ways. My littlest is only 4, so all she knows is that River is up in heaven in the sky playing with balloons. My son struggled a lot. He started acting up more than usual. To help him cope, he carried River’s coffin at the funeral, which helped him a lot. Gabrielle was alright, she didn’t really understand fully – she did get upset but luckily, she had all her friends around her at school and they helped her. My anxiety got really bad, so I couldn’t go out much which was hard. Dad chucked himself back into work too to try and cope. He focused on doing the business – he just tried to do what he could to take his mind off it.”
“But we all struggle daily – we’re always thinking about her or talking about her.”
Siobhan and her family have been supported by Rainbow Trust Family Support Worker, Jen, since River arrived.
“Jen took the children out to provide them with some sibling support – they’d do activities and go out together. Then once River passed, Jen takes them out to fun things and keep them occupied. We do a lot as a family anyway, but it’s just nice for them to go and have a break away from everyone else and not constantly be with us and it’s nice for them to go out with Jen. They love playing with Jen. They absolutely love it; they’re always asking me when Jen’s next coming!”
“Jen’s been absolutely brilliant, and she said if the kids ever need to speak to her about anything, they're always more than welcome to do that. I’m not sure if they have yet, but she has said if they ever want to ask anything, she’s more than happy to support them in that way If they need it.”
Siobhan also explained how Jen’s support has taken the pressure of herself and Jonathan as well.
“It gives us a bit of a break because we don’t get a break. So it’s just nice, because we get a few hours for just us. And especially just after River passed, we never ever got a break from anybody, because we always had the children. I think at one point we needed the break, because we couldn’t even process it ourselves properly because we had to be strong for the kids. When Jen took them, we got to support ourselves and have a bit of a breather.”
“People assume that if you are grieving, then you should always be upset but you can’t always be upset. You’ve got to be able to still do your normal everyday things. People just look at you as if you’re daft sometimes because it’s a different way of grieving and people grieve in different ways - they're just not understandings that people do it differently”
Siobhan shared how friends and family can best support a loved one going through a bereavement:
“Just be there for them because it’s hard and you need support. If you haven’t got any support, you struggle. Luckily, we had a good support system around us, so we were alright. But some people don’t have that, and you just need them to be there for you. Our friends stayed with us the night River passed away, they didn’t’ leave our sides. Then they were down every day to make sure we were okay. Just doing different things with us - it just helped change the atmosphere.”
Siobhan’s message to any family who are struggling with grief and want to reach out for support:
“Talk about it. Don’t bottle it up because it gets worse. The support that Rainbow Trust provide is brilliant and they help you an awful lot – the kids absolutely love it. If you’re struggling, speak to someone who can help you reach out to Rainbow Trust. Don’t be scared, they are there as soon as you need them”