Today is Young Carers Day.
It took me a while to truly acknowledge that Owen’s sisters Beth 14, Lilly 10 & Florence 5 were infact Young Carers. In the main this was because I am so determined not to burden them with the task of looking after Owen, that acknowledging they do help care for their brother made me feel like I was failing them. This led to feelings of guilt.
What at the time I didn’t understand was, that in NOT acknowledging them as Young Carers I was failing them more.
This is our family life and no matter how much you try and shelter the harsh truths of it sometimes you can run but you can not hide from it. It will catch you up.
What is amazing is that I never force any of them to help, but they do, out of choice, out of love.
My most guilt and upset comes about how much they have to go through. They were there at the most darkest of days, they have experienced things most adults would crumble at. Even a small temperature can throw them into a panic. But again this is all out of love.
Practically they are amazing, they know how to comfort Owen, care for him and translate his non verbal cues.
They know what to do in most circumstances. A great example of this is ss follows…. Owen has a really scary habit of trying to pull out his feeding tube out whilst on his milk. He sneakily moves his blanket covering/hiding the tube, gets his hands under the tube and forces his body into extenstion and lifts his arms up. He has pulled out his Mic-key button before by doing so, leading me to swiftly but calmly replace his Mic-key button with a new one. Yes this was infront of Lilly. Now Lilly is only too aware he may do this again. Yesterday Owen almost did, his hands were under his feeding tube and in any second he could pull it out. Lilly and I saw this at exactly the same time, both jumping into action. Lilly got their first, move his hands away and tucked in his blanket. I was so proud, but Lilly just told Owen he was a trouble maker and went back to sit on the sofa to watch TV. I sometimes feel bad that I have to ask “Can you watch Owen while I pop upstairs?” “Can you play with Owen while I cook dinner?” but that is our life. Before Owen had his tube Beth witnessed a particular bad choking episode and unfortunately has witnessed many other equally scary things to date. She has also comforted myself when I have been feeling sad or worried about a particular thing. She is not your typical teen, yes she has her teen moments but she has not got that self centred thing most teens have. At times she is completely selfless. Florence, Owens twin has known nothing else. She has from day one (literally) been through everything alongside Owen. I’m sure she will continue to fiercely love and protect him, even if at times she finds him totally annoying. Especially when he laughs when she is having a diva strop.
It is crazy to me how much they understand and how considerate they are. In all honestly the running of the house is centred around Owen and his needs. The house is full with medical and therapeutic equipment. We often have strangers in and out of the house, Community nurses, OT’s, Physio’s etc. Do they complain, No they just see it as the norm, our norm.
I can and do also feel guilty about the lack of time I get to spend with them one to one, That our life is different to that of their friends. Days out, Holidays etc can not be freely made without careful planning. But this is not my problem this is society’s problem. So all I can do to solve this one, is keep campaigning to try and change a tiny bit of the world not just for Owen, but for all of them.
In some ways I hope their experiences will help shape them into the most amazing adults. But for now I really do hope they know how proud I am of each of them, how much appreciate not only their help, but their compassion and empathy. And that all four of my children are all well and truly loved equally.