On the 15th of November, I went to a conference all about Duchenne Muscular Dystrophy run by Action Duchenne, a charity who have offered me a huge amount of support since Sebastian’s diagnosis.
I spent the weekend attending sessions about every aspect of Duchenne, from physio demonstrations, advice on housing adaptations to a session about the affect on healthy siblings.
Before Sebastian’s diagnosis if someone else going through this had told me they were doing this, what would my impressions been? A weekend of having the diagnosis thrown in my face? A weekend of grief stricken parents crying? A confirmation of everything that is awful about Duchenne.
My feelings now? I love it. And here’s why.
When Sebastian was born, a slight paranoia I had about feeling lost and lonely and spending my days alone with a crying baby meant that instead I threw myself into baby groups, baby massage, baby swimming classes. I had done NCT classes.
I was very lucky that while many struggle with those early days, I finally felt like I had found who I was meant to be.
Not in the baby groups - let’s be honest, no one find themselves by awkwardly singing nursery rhymes with people they barely know to babies who are too little to care.
But in everything motherhood gave me. I believe that my happiness lead me build a strong network of fellow mummies.
And I’m not going to lie, the nursery rhymes may not have floated my boat but there is little doubt that the shared experiences of early motherhood, with its sleepless nights and life changing love, were powerful.
Two and a half years in, pregnant with number two as many of us were, Sebastian’s diagnosis pushed me out of a club of which I had so fiercely loved being a part.
That isn’t because I am no longer welcome. To this day, some of those people count among my closest friends.
In fact I could not be more welcome, yet at the same time I no longer quite fit. My world turned upside down and it can never be the same.
However hard I try to right it, it will always be off-kilter with the one I knew and I will always be off-kilter with the person I was.
Experiences are not shared as they once were and our journeys which started off in parallel are on very difference courses. I am not ashamed to say that I still miss that sense of belonging.
So rather than it being morbid or negative to spend the weekend with Duchenne as my focus, the opposite is true.
The power in that shared experience is multiplied and magnified.
Perhaps that’s because we all grieve it in our day to day lives and crave that sense of unspoken understanding, I will not have to explain the burden I carry.
It will be acknowledged without the need for words. I can share my life with Duchenne in all it is rather than feeling that it should be minimised, squashed into a corner.
I can let my brave face go. And there won’t be any nursery rhymes.
While the knowledge I gain from the sessions I attended will give me so much to take forward into my life, the true power is to be with people who understand the life altering moment that my son was diagnosed with DMD.
It is to know that there is still a club out there that I belong to.