Brendan Bjorn spent 2 nights in hospital earlier this week to undergo a series of tests in advance of scheduling a spinal fusion operation. The results of these tests will determine if he can safely tolerate such a long, intensive, difficult operation. I pray so, because the alternative to a spinal fusion is horrific…letting time take its course while he would continue to slowly be crushed internally by his ever-twisting spine. Please, re-read that last sentence and let the thought of that soak into your mind. If you do that, you’ll get a glimpse of the nightmare that constantly repeats in my own mind.
One of the issues that arose in discussions with various medical staff was after care and our current housing situation. Yes, if you follow this blog, you know that we only moved into this rental home last month. However, I quickly discovered his bedroom is too small, and that the layout of his bedroom in conjunction with the wet room, doorways and hall, don’t work with a floor hoist, which is what I have. He needs a ceiling track hoist system, full stop.
The floor hoist I have is once again useless because of where we live, which means I continue to lift him as needed. I have chronic back pain as it is (thanks to degenerative discs) and have learned the hard way that I cannot safely carry him from his bedroom to the wet room. So, he will no longer get the proper showering a wet room provides. I will have to give him bed baths for now, and that rips me up inside because he needs – and he DESERVES – to be showered properly.
The medical team made it very clear to me this week that once he has the spinal fusion and is at home recovering, a hoist is 100% mandatory. I will NOT be able to or allowed to lift him on my own without a hoist. The danger is far too great. As well, he will need to have access to a proper bathing via a shower trolley in a wet room. As I said above, I can’t do that in our current rental house because I can’t carry him safely.
So, where does that leave us?
It leaves us needing to move into a FULLY SUITABLE HOUSE.
Brendan’s medical team, disability team, and various people in politics are all working on letters to appeal to the County Council for this urgently required housing. As I seriously doubt there is any such house in their supply, I would imagine it would mean the coco acquiring a bungalow currently for sale and making any modifications, if needed. But will they do that? If so, how long will it take? I have to ask because my son’s life hangs in the balance. My son’s life is literally dependent upon having the proper house. I’m going to repeat myself…
My son’s life is literally dependent upon having the proper house.
It’s not that I want a mansion on the hill. It’s not that at all. I just want to save my son’s life, for as long as I can, and make it the best it can be while I am blessed to have him in my life. If I could qualify for a home loan, I would buy my own house in a heartbeat! And frankly, I want to do it on my own! But, banks won’t consider Carer’s Allowance, DCA, et al, as income. It is welfare. I hate that word. And I hate that as a full time carer being relegated to welfare, it therefore resigns us to poverty, no future savings, no stability, no security, and no sense of self-worth for having once-upon-a-time worked my way through University and then through graduate school. No, none of that means anything anymore, nor does it do me any good.
Today, it is all about struggling to survive and fighting for my son’s life.
I sit here this morning feeling lost, tired, and lonely. At times, the disappointment I feel in myself for having not been able to provide the needed home for my son – for both of my sons – is overwhelming and I go to a dark place emotionally. This is the raw truth of it all. It isn’t always a journey of hope and positive thinking, although I try my damndest to make it so. But this week, it isn’t. No, lately it is all about struggling to survive and fighting for my son’s life. My beautiful, precious, amazing angel of a son, Brendan Bjorn.