Wednesday, 31 August 2016

Independance Days

Currently in my (not enormous) kitchen I have five modes of child transport.


In fact of you count the old one hidden in a cupboard you could make that six.

There is so little floor space that making a brew or reaching the bin involves a crystal maze-esque feat of physical agility. Still I can't bring myself to care that much because the latest two additions which have pushed us from buggy park status to full on Mothercare showroom have brought with them so much joy that fretting about floor space seems ungrateful.

I've talked before about Mojo's impending adventures with independence and over the glorious long sunny(ish) days of summer many of those dreams have come to fruition.

First came the Bugzi.

Watch me go...
My husband equated it to watching Mojo take her first steps. It was the first time she has ever been able to hold her head up and purposefully cross a space under her own steam. The Bugzi is a charity-provided electronic chair operated by switches (forward/left/right) it is truly remarkable.

Once she had worked out that she was in control, the first thing she did was head over to a table of things she wasn't allowed to touch! Its a weird parental juxtaposition to be so wholeheartedly cheering mischievous behaviour. Meanwhile back at home our house isn't really equipped to allow her to use it BUT once it gets in the school corridors....well, that mischief will certainly abound.

 Then, only a week later a very exciting delivery arrived at our door.

It was the streamers that pushed me over the edge. Often with adaptive equipment it's ugly, big, inelegant and functional. Aesthetics are obviously not a major concern when designing for NHS equipment. Mojo's new trike, however, is nothing short of beautiful. It is brightly coloured (in her choice of pink) it features a picture of a kitten. It has a little bell. The silver and pink streamers, some with 3D stars on, are attached to the bike by multi coloured butterfly badges. A bag at the back, which holds all the tools and straps, proudly displays her name on a registration plate. It's just, just perfect. It makes my heart sing that she can go out to do something she loves on her very own bike which is just as beautiful, if not MORE beautiful, than the bikes she has admired for so long. All of this AND she is essentially doing an hour of intensive physio without even realising it.

The last of our vehicular discoveries is, thankfully, not housed in my kitchen. This one was discovered by the beach in Mawgan Porth a beautiful Cornish beach resort which has been the destination of our family holiday every year since my mum retired and took us all to Cornwall to celebrate, we loved it so much that we all go back each year to spend time together. Its my happy place. Getting Mojo onto the beach has always been a faff and the older (heavier) she gets the more difficult it is becoming. It's not just her we need to get onto the beach it's also something for her to sit in that can hold her upright (folding beach chairs are useless) so we find ourselves with an enormous amount of kit for even a short beach play. Imagine then our joy, when sitting outside the surf shop was a beach wheelchair available to borrow for an optional small donation. My ingenious husband realised that the heavy floor sitter we usually wrestle to the beach fitted perfectly on the wheelchair and before I knew it, we had what can only be described as a beach throne and Mojo drifted across the beach waving at the crowds and laughing until she got hiccups. SO brilliant.

The importance of achieving more independence for Mojo cannot be overstated. Ever since we were able to look past the life-limited label and allow ourselves to embrace at least the idea of a longer future, our aim has been to ensure that Mojo is equipped to get the most out of life. Not for our sake but for herself, to dream big, to aim high, to ignore 'expectations' and roll her own path. Every inch closer to the goal of independence in whatever form it will eventually take, is a cause for celebration.

So now as we find ourselves days away from the start of Reception we know that she is completely ready for whatever that will bring!

Tuesday, 2 August 2016

Yes I Can

Today is the 2nd August. The 5th anniversary of the day our lives were forever changed by Mojo's diagnosis.

I started to write a post that was a letter to myself five years ago. What would I want her to know?

I couldn't find the right words, I was going in circles. Part of me wanted to say 'everything will be okay' but that isn't true and certainly wasn't true then. I wanted to tell her all the things her baby is going to achieve but I was worried she wouldn't appreciate them without the strive to get there. I was worried she would only see the implications of what she can't do. I found myself wanting to protect 4 year old Mojo from 5 years ago me's judgement. Let's be honest I over-thought it. Massively.

So I abandoned it and instead offer this Olympic themed story for this year's Diagnosis Day.

When the Olympics were in London 4 years ago Mojo was only tiny and we took her out to see the
London 2012
torch parade and had her photo taken with a Paralympic torch in Sainsburys (as you do). I found the Paralympics fantastically inspiring. The Channel 4 coverage led with the slogan 'Meet the Superhumans' and even though we were only just beginning to learn what Mojo was capable of it stuck with me, she was a little superhuman in training.

When the advert for the Rio Paralympics was launched recently with the soundtrack 'Yes I Can' it felt amazingly appropriate for the next stage of her development. I just love it. I love the music, I love the strength of the imagery. For Mojo, and other children like her who are just starting to explore the world for themselves I love the message this gives them about limitations and achievements. (Link to see 'Yes I Can' trailer). We met our little superhuman four years ago and in a world where she was told she couldn't before she had even taken her first breath she resolutely and loudly proved 'Yes I can'.

At the end of the school term Mojo took part in Olympics week. Each child was given a bespoke Olympic challenge to complete as part of the event. When the sponsorship form arrived home in her bag I was a bit taken aback. I will 'roll for 5 meters on my own' it said. This time last year that would have been an impossible dream. Only a few months ago she hated lying on her stomach and was unable to roll from back to front independently. The effort, determination and bloody mindedness that has brought her to being able to attempt a challenge like that is completely beyond me. My amazing superhuman. My girl. It might seem like a very mundane achievement but it is truly a remarkable feat of endurance.

On sports day we watched as she wholeheartedly competed in team games with her schoolmates. The concentration as she knocked down skittles, carried buckets and threw balls was breathtakingly beautiful. Those few hours watching the children competing, achieving and enjoying every moment were amongst the most life-affirming I've had. Children I've only ever seen in their wheelchairs making spectacular, emotive, efforts to take part in their walking frames. The atmosphere of support, encouragement and unadulterated pride was palpable. My very favourite photo of that day is of Mojo taking part in a skittle relay, her teacher is pushing her chair and she is reaching out for a skittle to knock down. She is in focus and the background is slightly blurred but what you can pick out are the arms in the air and the open mouthed encouragement coming from each of the spectators, some friends, most strangers, all shouting her name, all willing her on. Lump in throat time.

It might not be the real Paralympics but it might as well have been for the joy I felt.

On the last day of term I collected Mojo and she was holding a certificate, a special recognition award for her consistent achievement in communication and physical development this year.

'That's lovely sweetheart' I said

'We only give out a few of these you know' the headteacher said.

I think she thought I was being dismissive, when in truth I was trying to hold it together. I did so until the drive home when I sobbed with such happiness and pride and love for my remarkable daughter.

5 years ago today they said she can't, she won't.

'Yes I can'

August 2011
August 2016