Protection

It’s our daughter’s tenth birthday this week.

Somehow she is managing to spread the double digit celebrations over four days like some kind of minor celebrity. I'm not quite sure how we have come to this arrangement.

We're celebrating with a Harry Potter/Doctor Who themed tea party for school friends, a frenzied girlie sleepover for out-of-school friends, a chummy curry out for a close pal and an indulgent grandparents chippy tea.

And after all the cake has been eaten, presents unwrapped and cats disentangled from the streamers, we'll do that lovely reminiscing about her birth story thing.

And the story is lovely. Mostly.

It goes like this: I knew I had MS, I’d had it for almost five years when I became pregnant. I told every medical person that needed to know. And some who perhaps didn’t. I was under a consultant, I was being checked regularly. Everything looked fine.

And then, from absolutely nowhere, I developed gestational diabetes. At which point everything changed and I went down a very medical and monitored route which resulted in 20 hours of labour and an emergency caesarean.

But, she arrived safely and all was fine. Well, until the anticipated post-birth relapse which took all feeling from the waist down. But six months after that everything was fine. Mostly.

She has always grown up knowing mummy has an illness – we haven’t hidden it and often it’s impossible to anyway.

She’s played with my walking stick (“Look, I’m being a granny!”), my eyepatch (“Arrrr, I’m a pirate!”) and brought me cups of tea with the guiding hand of hubby when I’m too zonked to do anything but breathe (“Here’s your drink mummy!”)

So among the fumbling hands, the just too tired to play and the visits to hospital, we’ve introduced the meaning of MS on an age-appropriate basis. Or at least we hope we have.

And all the time we’ve been conscious that she is only little and multiple sclerosis is not only a very big word, it’s a very big disease.

It’s an extremely fine line. Honesty is crucial but too much is scary, responsibility is empowering but too much is overwhelming, empathy is a skill but too much is a cross.

Like a lot of parenting, I don’t know if we’ve got it right. I don’t know what she really thinks about it, how it will impact her either genetically or emotionally, or whether she’ll ever resent her childhood.

I don’t know if when she’s older, she will look at me and see a granny or a pirate or someone who needs her help more than either of us ever wanted.

It the end, all we can hope is that we’ve given her enough love, helped her develop enough resilience and protected her enough within the reality of what MS means for us as a family.

:: Protection by Massive Attack with Tracey Thorn