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  • Writer's pictureSamson's Mum

Emotional toil, stress and appointments, appointments, appointments!

I read a really powerful blog* recently about the emotional toil we experience, particularly us women. I won't go into it now, as is definitely not my intention to alienate all you hardworking, dedicated, passionate men, like my DH who slog your guts out to get things done and contribute fully to the running of the household.

But the upshot is that us women usually bear the brunt of the emotional toil. Its the tax we pay for having busy, fun filled family lives and appears to be inbuilt into women after millenia of behavioural programming.

So, emotional toil means being in charge of things like, scheduling play dates for the kids, remembering friend's birthdays, sending cards, buying presents, organising the washing into piles, paying the window cleaner, sorting childcare (the endless holiday clubs' registration process.......), putting the washing away once it has (eventually) dried (must buy tumble-drier), replying to school trips, buying and labelling uniform, organising innoculations, babysitters, packing for the family to go on weekends away.....

Take a breath.....and then, the extra emotional toil Mums of children with Duchenne (like me) take on are things like; OT appointments, trips to hydrotherapy (mainly during school time, so absence letters to the school, arranging additional childcare for siblings etc), visits to the Children's Hospice, Consultant appointments, school meetings (CAF and updating new staff), physio appointments, meetings to measure for then fit orthotics and so it goes on, and on.

All of this, coupled with working is enough to make any sane person go completely and utterly bonkers!

Yesterday I messed up a hydrotherapy appointment and cried so hard I was screaming down the phone to one of my wonderful friends (a fellow Duchenne mum), "I try so hard, I just can't DEAL with it all anymore. There is TOO MUCH to do!"

A bit of back story...A couple of months ago I had been convinced I had my 1 year old booked into nursery, so took her there before heading off to London to work, to be told later that I hadn't booked her in and they could have gone over ratio (luckily, I have a wonderful relationship with them and they were understanding). I told them it wouldn't happen again. But, lo, 2 weeks later, the same thing happened. Somewhere in my confused, crammed full of 'emotional toil-ed' mind I had thought I had sorted it, but I hadn't. I had dropped the ball, twice.

Yesterday (when I scream-cried) I had realised in my work diary that I was supposed to be at EACH with the kids doing a Hydrotherapy assessment for Samson (something that parents of kids with Duchenne will know is like gold-dust). Earlier in the day, I had got my days wrong for their Mad Science holiday club (which was amazing by the way) and had asked the kind lady to reschedule it so I could actually work!

(I know, its doing my head in just reading this stuff!)

So, basically, it all culminated in me feeling completely useless (again) and being in an absolute state, dealing with this huge suitcase of emotional toil that blurs my vision and renders me completely insane (until a lovely friend, like the one yesterday, reminds me I am doing my best and that I've got a lot on my plate).

Its just that this disarray creates guilt.

You see, my middle child Samson (6) has Duchenne muscular dystrophy and there are so many things we as Duchenne parents need to make sure happen so that he and his siblings are well looked after and have the best life possible. These things don't just magically occur; hard graft, fighting spirit and a well oiled system make this possible. When the oil dries up (like yesterday) the scream-cry comes out and the proverbial hits the fan.

I really don't have a solution to this problem.

We've tried big family planners. DH is going to blow up a larger version of our family planner. But its the problem of diaries in phones, work diaries, planners, endless rescheduling of appointments, its all over the place and I can't keep up.

As for the emotional toil, again, I can't solve it. Other than to try to remember that there IS a lot to remember, take a breath and these things will get done, prioritise the important stuff and forget the peripherals.

I know - I'll get a PA. Any takers?

*Link to the blog I mentioned above

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