You & Me Song

It was my birthday at the weekend, my 15th with MS.

I don't normally tend to acknowledge my MS alongside celebrations for my advancing years, but this year I did think about it.

Things have changed since my last birthday - the result of two relapses within seven months - and the difference between my 43rd birthday and 44th were clear to me.

I went out for dinner with friends the night before my big day. This proved more of an issue than it would have previously - I needed help fastening jewellery, I couldn't wear the higher heels, I struggled with the cutlery and I was limited to only ONE celebratory gin.

Given the evening out before, there was no huge party on my big day itself. I knew I'd have to spend the day itself quietly. So I did.

The day after my birthday my husband and I booked a day off work and went on a day trip to Stratford-upon-Avon, one of our favourite places.
Stratford was as delightful as ever; the cafes, the shops, the RSC and the swans.

But it's clear that I'm struggling now to do the walking along the river like I used to, to consider booking a play without worrying I'll be unwell or even manage to be much of a conversationalist by the end of the trip. Poor hubby.

I realise that progression is inevitable in MS - just as I'm brutally aware that comparison is the thief of joy.

It's very, very difficult with a progressive disease to not think back to how things were - before diagnosis, five years ago, last birthday. But it's not useful, not healthy and certainly not helpful.

So while I'm not sure how my 45th birthday will be, I can only keep the words of the bard himself in mind: "With mirth and laughter let old wrinkles come."

:: You & Me Song by The Wannadies

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