By Rosie’s mum, Toni
We were referred to Sebastians Action Trust by our children’s community nurse in April 2023. Our daughter Rosie had just turned 1 year old and had been having seizures since she was 4 months old. Doctors were finding it increasingly difficult to control her epilepsy, and she was significantly developmentally delayed.
We visit The Bluebells once a week as a minimum. We attend the weekly sensory group on a Monday morning, and we often come along to coffee mornings when they are on. I usually attend the monthly “Chill and Chat” sessions, and we also love to come up and use the pool as Rosie is a huge fan of the water.
Being able to come to The Bluebells is a huge part of our routine. Without The Bluebells we would struggle to leave the house. There aren’t many safe places we can take Rosie due to her unpredictable health, but I always know that we can rely on everyone at The Bluebells (parents and staff alike) to look after us, make us comfortable, and give us the support we need to be out of the house. Coming to The Bluebells feels like coming home.
So hard to pick a favourite part (of The Bluebells). For me I would say it’s both the staff and meeting other parents, but I know for Rosie it would absolutely be the pool and the swing in the garden.
We’ve been lucky enough to have a Respite Break at The Bluebells 3 times now. We have always stayed in the upstairs flat as Rosie can still be lifted, but it is so reassuring to know that even when she gets bigger we will still be able to come and stay in the downstairs flat which has proper facilities for moving, handling, changing and bathing. One of our breaks was the weekend of Rosie’s 2nd birthday. We had our extended family come to visit us there for a birthday barbeque. We had lots of space and it was the perfect place to celebrate with us all together, making precious memories with Rosie. The Bluebells will be our main holiday destination for quite some time.
Our first holiday with Rosie was when she was 20 weeks old. She was still well enough to go away back then, but now we would find it almost impossible to go away without huge amounts of additional support. Having breaks at The Bluebells is currently our only opportunity to have respite breaks outside of hospice care.
We attend as many SAT events as we can. Easter, Halloween, Christmas in July, Christmas, plus the smaller more frequent groups such as the sensory group, coffee mornings, and monthly chill and chat evenings. We attend for lots of reasons, to see other families, to be supported by staff, and because the events are always so fun and give us such great opportunities to make lovely memories with Rosie.
We love events that are relaxed and that we can dip in and out of so Rosie can get regular breaks to regulate and we can meet any of her medical needs. SAT are always so aware of this for all families and are so supportive.
There are so many favourite event memories. The funniest event memory would probably be from Christmas 2024, when we were in the sensory room. Rosie took one of the Family Support Workers hand, and without warning, very rapidly bit her on the finger. Tanya took it like an absolute champ, and we all still laugh about it today. I also love thinking about the Easter event where Rosie got to feel the baby chicks soft feathers on her face, and when the new playground was open and we ate ice lollies in the garden. Sometimes it’s the little things that make our time with SAT so special.
We speak to many of the SAT staff every week. Knowing there is always someone at the end of a phone or a message offering a shoulder to cry on or help with referring to other services or charities is such a huge comfort. If I ever need help with navigating something I am unsure of in the SEND world, they are always my first port of call. I’ll often use the SAT staff to vent about things that are hard and frustrating, and I’m always met with empathy and sound advice, as well as signposting to other things or even other parents that might be able to help.
I’ve also spent a lot of time with the SAT counsellor Vikki, and I cannot recommend her enough. After seeing Vikki weekly for a period of time, I now book sporadic sessions with her when things are feeling tough. Having space to process the trauma of having a life limited child is critical to my mental health and without having this space to look after myself it would be a huge struggle.
Just to say that I am so hugely grateful for SAT, The Bluebells, the staff, the network of parents, and of course anyone who supports the charity in any way. We are so thankful, and so lucky to be a part of such an amazing support network.