I’m sat down on a Friday morning having a coffee and a pan au raisin after getting my nails done – kid free for 2 hours! These things are not now in my life too often and I call them pure luxuries.

I found it interesting, when I presented to The Rotary last week about my life, DMD & William, how one lady came up to me after my presentation and was concerned about ‘me’. I don’t really think about myself in this whole craziness I call life, my focus now is my family and duchenne. She asked me what I do for myself – I said I go to work, have good friends I meet up with and have my family. She again said ‘what do you do for you?’ – nothing, mind went blank! So she told me to go to the spa! 😄

It was lovely to be asked, but I actually confused myself by not being able to answer. I do go out with friends, me and matt go out but, I suppose it’s so rare I’ll do something just for me – I’m sure I’m not the only one.

When you have your to-do list burning away it’s hard to stop, especially when that list involves duchenne matters.

Now, I was asked this in possibly one of the busiest weeks of my life due to organising William’s huge fundraising dinner event on that upcoming Saturday. (That went well, wow the support was just immense!)

What I have done very recently is make a big decision and step down from being Chair of our local pre-school. This takes up many hours of my life and what with kids, paid work, Action Duchenne trustee work, duchenne itself, hospital visits, chasing appointments, running the DWAD charity – I decided I probably did enough.

I’ve done 29 months as chair for the charity pre-school – I started on the morning of the day that I had ‘the call’ that my son was urgent care at GOSH. Now, lots of people would’ve sacked it off, but I can’t, I’m not someone to let people down!

It’s taken me over 2 years to finally say ‘actually I can’t fit it all in and stay sane’. (I am staying on the committee though!!)

So back to ‘me’ time and the irony of my boy now being ill and off school – those couple of hours a couple of times this past week actually taken away from me. But, they are replaced with special time with my little boy, albeit an ill boy! I totally forgot that steroids (joy) mean my boys immune system is not so strong – so a cold leads to flu like symptoms leads to inflamed ear leads to antibiotics.

It’s another event in our lives. My ‘me’ time again gets taken up with my boy and duchenne.

Don’t ever forget that in the back of my mind, every day, is a reminder that my time with my boy may be ripped away earlier than I want. So, I will take away all the ‘me’ time I have to have more ‘William’ time day in day out.

Help us fight the fight and make my boys life special.

💙👊💙