The Difference

The Difference

The difference is as clear to me as Gaydar. I can see it as soon as it happens. I want it to be Not True.

I want it to be my imagination.

But as soon as I detect that look, I feel queasy.

Some of you know me as Fairysparkle. I used to have a blog called Miss Fairy's Waffle at http://rhodiola.blogspot.co.uk/

I used to be able to access that (ironically), but now can't, due to fuzzy memory as to how it got set up in the first place. I have had many folk since saying, ooh, see that mad story you've just told me, you should blog about it.

Blog's take time. They take imagination. They take angst.

We had plenty of angst going on. I have jumped several years since then and although I'd like to think time has been kind, and I look not a jot older, there have been some lovely moments and some crashing lows, which means time sent us a mixed bag.

The biggest high was getting pregnant. Of course getting married has been fantastic, but this was like a whole load of icing on the top. Long story short, it took time till we found our wee baby. It was like he was hiding and we had to unlock a whole bunch of stuff to find him. When we did, it was like the deepest joy had finally found it's place and settled in, just where it belongs.

Whenever I post about our baby, my heart constricts.

It tightens because I know how much we longed for a child.

It was desperate. It was like living on a knife edge. It was like mourning before we began, because like I said, it took a while to find him. It wasn't till the very last minute we saw that all the hopes we'd poured in this pursuit actually had a purpose. So, I know, that there are hearts out there that beat every single day crying - where is my little one? I know, that even reading the word 'pregnant' can make a stomach turn. That there is a well of gratitude alongside the angst that spurs me on. It makes posting negative news very hard. No matter how sad or tough a situation is, I do know that we are very blessed. We got to meet our little one, and we will never forget the tears shed whilst waiting. Longing to parent is one of the vilest pains a person can endure.

I live on another kind of knife edge too. I live with chronic ill health. Life long disability. Life long misunderstanding.

I used to work in childcare. I was responsible for well over a hundred children over a six year period, first as a play worker and then three years in management. I was pretty poorly all of the time. My mobility was never great, and I ran on so little puff I have no idea how I managed it. Just before I got married, my legs went from wobbly to cr*p.

I was swimming every fortnight, and walking as far as I could daily and then over a period of months, I became housebound. I have no idea what made my mobility deteriorate, although there were factors that triggered a relapse that I can identify. Didn't explain why this time the relapse took away whatever makes legs go and this time my mobility did not return.

I have very, very limited mobility now. I can shuffle around a small flat with a stick, and a prayer as I also can collapse with fatigue with or without warning. My head is full of concentrating to get from A to B. I have literally no idea what walking without concentrating is like. I also have no idea what it feels like to walk to the local shops. Or to the end of my garden without fear. It's like this time, the legs went, and I lost the memory of walking along with it. Even in my dreams. Without a wheelchair, I am stuck. Housebound. Trapped.

The rest of me switches on and off in availability, and it hurts in various places all of the time. 24/7. No idea what energy and vim and co-ordination feels like. Or not hurting.

I  therefore have experience of  carrying out childcare whilst having an invisible but very real disability. Now I am a parent with an obvious disability. I have swapped. You can see me, coz I has a big wheelchair stuck to my a*s. A beautiful chair, and one that runs on electricity, but none the less, a fricken mobility aid.

And that's what makes the difference. I know how someone looks at me standing up and looking 'normal'. I now know how they look at me in a wheelchair.

So, it's a shock to realise that it really does happen. Being a wheelchair user has led me to seeing a look that instantly lets me know I am one of 'them'.

Not that invisible disability is easy. Oh my gosh - it's awful. It's just that this look opened up a different world.

So now, with a six month old son, and a heap of cr*p treatment, I decided to create SOYA mums/dads. Coz sometimes you just have to find yourself a new label. Other than - ooh, but you're just like normal like "other" mums. Except, you're not.