Recently, I have been spending time The Treehouse. I’m currently doing a photography workshop which will become an exhibition challenging the way people think about the word ‘hospice’ although, the details of this; my thoughts and feelings will be a post for a different day. My reason for mentioning it is because the nurses are caring for Freddie to enable me to take part in the course. It’s a nice set up. I’m in one room, with a group, taking part and Freddie is in the main building having a lovely time playing. I know he’s having a lovely time because I go through to check on him regularly.
Anyway, once this particular session was over I went through and the nurses told me Freddie needed a nappy change. (I’m not sure who is aware but once a child reaches around 15kg hoisting equipment is required for medical professionals to move them around so that they don’t do themselves any damage. Health and safety and all that). Which I didn’t think anything of and left them to it whilst I nipped outside. When I returned they were fitting him for a ‘new’ hoist. They had tried him in a sling earlier that day but didn’t feel it was safe because he was trying to sit up and wriggle free (sounds like my boy) so they wanted one with more straps to secure him.
I patiently waited and watch. You see, the plan is, next year we will be having our house adapted so Freddie can live downstairs (don’t even get me started on how I feel about him only being able to access one floor of our house), part of that means hoisting being fitting in his bedroom and bathroom. He’s never used or been exposed to hoisting before. He’s well over 16kg now but because we’ve always care for him at The Treehouse it’s never been necessary. As caring for him is becoming increasingly difficult for us we are beginning to accept we need more help, but in order to get home help he has to have hoisting fitted first (for the previously mentioned health and safety issues).
I didn’t know how Freddie would take the experience. They were singing and referring to it as a ‘swing’ to make it more fun, although he didn’t really seem to buy that and immediately looked unhappy.
He was fitted with a size four and which has Velcro fastening around his waist – which he undid! I watched him get more and more upset as he was looking at the nurses with disgust and looking at me with the most desperate eyes not understanding why I was allowing this. I heard him moan through a nappy change then watched him be wheeled back to me, in his Swifty, as soon as his eyes found me he opened his arms and had a huge smile. Obviously I took him out and we had a long cuddle.
There is something extremely unnatural about watching your child being hoisted. Every inch of me wanted to hug him and carry him. My maternal instinct were screaming that it just wasn’t right. For our children we have the inclination to nurture; to hold them close and protect but he seemed so exposed and even more vulnerable in there. There is nothing nurturing or loving able being hoisted, that is a fact. I think, because he’s so developmentally delayed, I still have the instincts of a mother to a new born where he’s concerned.
The reality is I want him to be able to navigate his world himself, to not have to need all this equipment. Then, if that’s not possible I want to carry him, cuddle him and reassure him it’s all okay but rationally I know I can’t do that forever. It’s so difficult. It’s another navigation through this world that we never wanted to be a part of, yet here is where we find ourselves. Every time something new comes up I find it difficult to adjust. I know I will, because I have to, there is no choice in the matter and our backs are already suffering for carrying him around.
Navigating this world is so tricky in various ways. My wants and Freddie’s best interests aren’t always the same, and I do accept that, I just find it hard. Eventually I get use to every turn we take in this journey but when a new route presents itself it always knocks me back again. So, here I am, knocked back (again) at the reality of what will be coming next.
