People often say, "What I'd do to go back in time, to my teens/twenties".
I absolutely wouldn't (apart from to be able to see Helen Freezer every day of course!).
My teens and twenties were a real mixture of times; times of awkwardness, heavy drinking, zero self-respect, slovenliness, sleep (lots and lots of sleep – all day sometimes til 5pm), coupled with times of amazingness; incredible friends, Hat Parties, recklessness, excitement, squealing til we wee’d, and hours and hours and of dancing.
I reeled between real, debilitating lows and super duper highs of feeling and emotion, without any control or self-knowledge, which, I guess, has improved a little with time and age.
In my twenties, I could never have imagined the journey I would take within the next 20 years of life, those youthful highs and lows pale into seeming insignificance with the stuff I’ve been dealt over the past couple of years, but actually they have paved the way for self-acceptance and fulfilment.
As I always say, it’s not a competition as to who can have the rubbishest time.
It’s just that sometimes, my ‘stuff’ seems so completely overwhelming that I can’t cope. But I do. That’s what Duchenne Mums do. We cope. We get on with it.
We’re just about to move, we’ve found somewhere which will be suitable for Samson’s future, with a downstairs wetroom and bedroom. It’s just about within our budget without completely financially crippling ourselves. They say that moving house is one of the most stressful experiences, but actually it’s pretty OK. It is what it is…. Literally. I’m so well experienced in building a crack team around me to get stuff done. I’ve got an amazing agent that is on our side, a conveyancer who is quick, detailed and amazing, I’ll get it all done, and I’ll sort it. Because I have to.
The power that I've built over the last 3.5 years is what keeps me going, keeps me advocating for Samson, for Leo, for Rosie; to try my best to make their lives OK. This power is, in itself, quite overwhelming sometimes. It comes from such a deep place that I never knew was there.
In the Duchenne world it makes me cope with every day. In the 'normal' world, it makes me feel like I can take on anything. It creates this confidence which is borne out of knowledge of the very depths of life and death, but reborn from hope and positivity and love.
I may be as wide as I am tall. I look different to other ladies. I have shaved hair #2 and wrinkly eyes. My tummy sags under my jeans. My bingo wings shake when I cheer for my kids. But you know, I am so proud of this body, my mind, my emotions and the Duchenne shit I go through that I wouldn’t wish on anyone else, ever.
I know I eat to push down my troubles, but I acknowledge that and accept it is a negative. I embrace the larger than life person that creates, and respect my friends who see past the outside to see my actual self. My outside may not be ‘healthy’ but it’s damn more healthy than hating who I am, striving for something I’m never going to be or wishing I was in a different body.
In order to face this life head on, to lead the charge, to steer my amazing children, to nurture the wonderful Duchenne families I have the privilege to work with, my outer exterior pales into insignificance.
The fat, the flab, the shaky tummy, the wobbly arms. They don’t matter. What matters is ME.. my soul.. my love.. my care for what I do. And please, whoever you are, whatever is going on in your life, whatever drags you down…What matters about you is YOU…your soul… your love and who cares for you. Please don’t forget that.