…and they all want a bit more of mum’s time, even the 3 grandchildren who have moved back home with me. Going to Beaulieu for a weekend gave them a chance to go to a water park. They were so happy to see me after their break!
Meet a couple of them….
Hello, I’m Lotte, Ethan’s funniest sister.
I’ve been told that I’m not allowed to make him laugh too much anymore, as the last time I did, he got so excited flapping and squealing, that he had a seizure! OOOPS!
…And, I’m Ethan’s sister Tish!
I love my brother very much…
And I know he loves me just as much!
I do have a lot of time for Ethan, although it can be very hard
living with him…(especially having lots of uni work to do!)
I suppose I don’t live a normal life, living with a disabled brother. Locking up almost anything which could be a hazard (yes even the bagels in the bread bin!).. You see we have had to resuscitate Ethan several times due to choking, so it’s always important that someone sits with Ethan during meal times (even for a slice of cake).
…but Ethan’s condition is so unpredictable, my family and I would often wake up to find the ambulance taking Ethan and my Mum away (sometimes over the whole of Christmas).. which was hard as we never knew whether he would come back. But Ethan always seems to surprise us! And always comes back with a loving smile on his face, to his big family and all his friends at Beaulieu House.
Ethan needs two people to care for him, especially when he is wobbly on his feet, distressed and anxious or may have a seizure ..But most of the time Ethan only wants me .. (lucky me?”!)
That’s where Beaulieu house help, they give me precious time to spend with my family each week.
Ethan’s need for 24 hour care prevents us from doing lots, almost like prisoners within our own home. Even leaving Ethan unattended for 2 minutes to pop to the loo or answering the phone can result in all kinds of mischief (like finding he’s escaped out of the front door, or finding him drinking liquid from the loo brush holder! YUK).
Since early childhood I had wondered what it would be like to go for a family holiday, where we could all just…and not be on constant supervision. Or perhaps have a meal out with Mum! But hopefully with enough fundraising, Beaulieu can offer a family like mine this type of support.
So that is my family!