Monday, 21 March 2016

She aint 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 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 roomed 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!

Sunday, 6 March 2016

A Mother's Day Story

Once we had established which local library was open, my mum in her usual style, had Mojo wrapped up, in her wheelchair and 'out of my hair' in minutes. I was left with a golden hour of alone time. My mum has been doing this since Mojo was born. Whether it was giving me time for a bath, a sleep or a battle with a DWP form she's always been there. It helps that Mojo is such a good shopper, the two of them wander around the shops admiring and choosing. They love each other's company.

When they turned up later with a huge pile of library books and ear to ear grins I knew it had been another successful trip. 

In the library they had found the perfect book. It was about a little girl shopping with her Granny. Shopping for a present for Mummy. It was one of those occasions when a book reaches out to Mojo and she had the story/signing verbaitum within one or two reads. Now I must warn you that in detailing this story there will be significant spoilers for the gorgeous story 'A Present From Lulu' by Caroline Uff.

It's a beautiful picture book with big print writing. It opens with Lulu shopping with her Granny, thinking about what her Mummy might like as a present.

Now 'thinking' is something we do a lot of in this house. We think before we make choices. When the act of pointing takes the kind of effort that the average person would have to expend to, lets say, run up a flight of stairs, thinking carefully is an important mechanism to make sure we know what we want to say, or choose, is the right thing! Mojo and her sister both do the same thinking sign, finger to the mouth, hmmmm, classic thinking posture. They have learnt it from me and their doing it has exaggerated my own use of it. It doesn't speak well of my parenting, or my waistline, that frequently my youngest points at the biscuit cupboard and does the 'thinking' gesture. (It doesn't speak well that we have an entire biscuit cupboard but I digress).

As the book continues, Lulu and Granny explore the shops ruling out various options, cuddly toys, books, chocolates, sugar mice, smelly candles, floaty scarves and sunglasses. Finally Lulu finds a sparkly necklace which is 'perfect'. The book ends with Lulu giving her Mummy the necklace.

During the few days that my mum was here the two of them read that book so many times with Mojo anticipating each page, each prospective gift, with total joy.

A few days later there was much whispering and giddiness before the two of them embarked on another shopping expedition. This time they returned with a brown paper bag which was handed to me with tremendous pride.

My mum had taken Mojo to a shop which sells candles, scarves, chocolates, cuddly toys and sparkly necklaces. They had brought the story to life. Inside the brown bag was an organza bag with a tissue paper parcel inside.

Over a glass of wine later that night mum explained how she had lifted each tray of necklaces down to Mojo's height so she could pick one. She chose mine from the first tray and while she looked intently at each following tray she went back every time to the first one with the long gold necklace and blue sparkles. That was the one for me.

When my mum took her to the shop she didn't do it for me. She did it for Mojo. She didn't even do it alone it was completely conspiratorial. They did it. Together. For me.

It's present that means so much more than the gift itself.

When I write a Mother's Day card to my mum I find myself thanking her for the train fares and the babysitting, the housekeeping help and the all encompassing 'everything'.

In our case I think that everything covers a little bit more than the physical helping and the emotional support. It covers being the foundations underneath my own mother/daughter set up.

Mojo can't use words to tell me she loves me she uses signs and looks and carefully thought through actions and I know, I feel it.

I can and regularly do, say 'Thank You' and 'I love you' and I write cards and buy presents but I still find I can't articulate how deep that gratitude is. So like my own daughter I will just try to use actions and signs and maybe blogs to try and express my gratitude and my love.

Happy Mother's Day.