She aint heavy….at least not yet!

 It’s officially spring! We have survived another winter. I know that sounds very melodramatic but back in September with winter stretched out before us like an obstacle course of sleepless nights, infections and potential complications, March seemed like a distant utopian place and yet…here we are. Our tally for this winter was one hospital stay and two serious infections none of which caused us any major drama so I’m calling it. That was a successful winter. High fives all round.

To prevent us from luxuriating in our success for too long our next hurdle has arrived. This one arrived very inconspicuously one Tuesday afternoon in the form of a routine home equipment review by our OT. I was anticipating negotiating a change of home seating system, given that Mojo has grown so much of late that her old chair was becoming unusable. I was prepared to talk about her bath seat and take advice on rotating car seats. All of which happened but the second stage of the meeting took me by surprise. We started talking about how much Mojo had grown and how much she now weighs. We talked about manual handling and I was casually asked if Mojo would be moving downstairs, to live in the front room. My instinctive thought was ‘ground floor in a street facing room on a road that we know is frequented by car thieves’ not likely! By the time the OT started talking about hoists, lifting equipment and moving an entire bathroom downstairs (in our mid terrace two bedroomed house!!) I was reeling somewhat.

As a family we have always, perhaps misguidedly, prided ourselves on our ability to live as conventionally as possible, We adapt our routines around Mojos needs but unless you know us well our lives appear very ordinary. We have encountered that feeling of difference since Mojo started using a wheelchair rather than a buggy but, more often than not, most people think the wheelchair is a buggy and we are regularly asked to leave it outside when we’re accessing venues and have to explain that it’s a wheelchair. Pre g-tube when we had NG tubes in and were out and about that caused us to notice our out-of-the-ordinariness but those periods were usually brief and quickly forgotten. It’s not that there is anything wrong with being different or having bespoke requirements of the world, it has just come more naturally to us to try and make life as conventional as we can.

Home is the place where everything has always felt easy, we are just us, we evolve and adapt along the way and it works, we are happy, home is our safe place. Asking us to move Mojo’s room to the ground floor feels like an invasion of our privacy. It challenges my most cherished faculty. My control.

I’d challenge you to find a parent of a complex child who isn’t a control freak. It’s what keeps us sane. We are gatekeepers, diary managers, nurses, financial advisors and therapists. We know best and woe betide anyone who infers otherwise.

It brings out the inner teenager in me when someone tells me I can’t carry my daughter up to bed anymore, or lift her out of the bath safely. I feel defensive and resentful. I get a bit ‘how dare you tell me…blah blah blah’. Then I take a deep breath and recalibrate.  They have a point. I’m 5′ 1 and 8 and half stone (ish).

The problem is not really a logistical one, it’s psychological. Having to live on the ground floor feels restrictive, claustrophobic (certainly in this house). I wouldn’t want to do it. Installing hoists and rails to our home to replace our arms and hands when moving Mojo feels impersonal and clinical. I reluctantly accept that having to adapt the house is an inevitability but it’s a tough one nonetheless, because it serves as a reminder that the future is coming and things are going to become much more difficult physically for us.

We must therefore find a way to move forward and adapt which includes meeting all of Mojo’s physical needs at home in a way that keeps home feeling like home and Mojo feeling like Mojo rather than a patient.

One thing that is clear is that this house isn’t going to work for us. Hello rightmove my old friend.

Oh and I joined a gym. Free weights anyone?

A pretty big tagline in the circumstances but worth a try, eh!


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