Last Reviewed 4/03/2020
‘Time is a healer’ doesn’t the old cliche say? On 19th February 2014 I was told my baby son had muscular dystrophy. I remember everything about that day – the train journey to hospital, the feeling sick with nerves, what Fraser was wearing, what the clinic room looked like. I remember every little detail about that day, up until the moment that I asked if my son would die before me and not being given an answer, then I remember nothing at all.
It’s hard to look back on that time for reasons I’ll allude to as I type, but I can recall the grief – I was overwhelmingly drowning in it for weeks and months after diagnosis. I thought of nothing else but losing my son. I would think about it day and night, it consumed my every thought – when would it happen and how? Would I be there as my son took his last breath? How old would he be? I often wondered if it might even be a relief because then he would no longer have this awful life with a wheelchair, because surely that was no life at all, was it?
I was fixated on the wheelchair for a long time – I categorically did not want any child of mine to have a wheelchair. It was just not something that my mind could comprehend, there was no place for a wheelchair in my naive, socially-perfect perception of life that I had mapped out for my family. I didn’t want my son to be a man with Duchenne, I didn’t want a life like that for him, and selfishly, I didn’t want a life like that for myself. I felt this way for a long, long time until something changed within me, a lightbulb moment or an epiphany some might say.
Revisiting those feelings and writing them down makes me realise that yes, time is a healer. In all honesty I feel very shallow when I think back to the mindset I had. It couldn’t be any further from the outlookI have on life now – but I didn’t know any different and I was a lost and broken woman, there’s no doubt about it. Today, the woe has subsided and in its place has grown a woman who sees life through a whole new set of eyes – better eyes. I will always chase that treatment for my son because survival is human nature, but with time comes acceptance and with acceptance comes healing. My son will always have Duchenne, I’m at peace and I accept that now. But as well as having Duchenne my son also has a life and this is HIS life, not mine to make judgement upon. He is happy, I am happy and life really does go on. I no longer recognise the girl I spoke of above, someone who hadn’t experienced disability, someone who thought everyone lived until they’re old and grey and presumed that life always had a storybook ending. That girl has gone, the world doesn’t always follow a ‘once upon a time’. And the wheelchair? I don’t even give it the blink of an eye. Why was I so afraid of a seat with four wheels? Why was I so single minded about what I thought perfection was?
It’s my job to teach my son positivity and that’s fairly easy to do when you start to believe it yourself. Yes I’ll always wish his life was easier, I think that’s allowed, that’s a practicality. But would I wish to change the life I have now (which has been enriched with humbling experiences and meeting the most amazing human beings I’m proud to call friends), with my old life (where I believed 2.4 children, fancy holidays and a nice car were the things that brought happiness in life)? The answer is no, without hesitation, without question.
I’m proud of how far we’ve come. You can let a diagnosis destroy you, or you can face it head on. One thing that has remained constant through all of this is that I have a boy who loves me, and I love him in return with all of my heart. I’m blessed to be his mummy and have this different life – and in our reality this life can be perfection, it just takes time to see it.
Shelley Simmonds is an expert patient advocate and campaigner, having trained with EURORDIS in 2018 and now undertaking the EUPATI course for 2020. She is a speaker and writer through her online social media community, Fraser & Friends, set up to share experiences of living with a disabling rare disease to educate and support others.