This past weekend, I went to the Action Duchenne Conference in London, learned a little and met a lot of lovely interesting people; members of my Duchenne family that I have spoken to often but have never had the opportunity to meet. But even with all that went on over the weekend, the thing that has me thinking the most since I came home, is the conversation I had with the driver of my black taxi on the way to the conference on the first day.

The driver was a lovely, chatty man, who sounded like he had just walked straight off the set of Eastenders – The type of conversationalist who wants to know where you’re going, what you’re doing there and why you’re doing it. So with plenty of time to chat while sitting in the London traffic, I told him all about Duchenne and Luke and my family history. He told me that one thing that should come out of it all is that while most people are so busy with life, they forget to treasure each and every moment with their children, I would never do that and that I probably am always aware of how precious time is with my kids and probably do more with them because of it!!

I’ve been pondering this for days and I have to say I’m not entirely sure that I do. I know that I should, I know that each and every second is precious with both my children. But do I really realise the gravity of the situation?

For 3 days a week I leave my children to school and to their granny’s. I don’t see them again until after 5 and then I’m so busy with making dinner, ironing clothes for the next day, doing homework, cleaning up and getting the boys ready for bed, that for those 3 days I barely stop to think that I will never get these couple of hours I have with my boys back. No different to most working families except most, thankfully, don’t have a life limited child. Could I really do that if I fully recognised just how precious my time is?

When I’m not working for a living, my head is always so consumed with all the things I am doing to save Luke – fundraising, researching, campaigning, creating awareness…  that I wonder am I spending so much time trying to save him in the future that I forget to live for the moment and enjoy him today. And by doing that am I robbing him of opportunities to have lived a full life with so many happy memories that, when he finally succumbs to Duchenne, he will take his last breath having lived a full life where he was encouraged to achieve everything he wanted to?

For all mums, splitting your time between working and raising kids is tough, add all the stresses of raising a sick child, fundraising, hospital appointments, medicines, researching all the ways you may be able to help your child, acknowledging and dealing with the fact that in reality you may not be able to save him, having to fight for higher standards of care that could add years to your child’s life, and the pressure of trying to create an image of ‘business as usual’, then how do you possibly find the time to make the most of the time you have?

Part of my paid employment is to encourage women into self employment/ employment so I have read the research and understand the benefits that having working mothers have on a child’s development. I have a great education and I don’t want to waste it but I really struggle with justifying the time away from my boys when one of them is on a timer. Soon he won’t be able to climb, or get off the floor, or walk, or breathe for himself. And sooner than I would ever want, this disease will take him from me. I have been lucky in that my employer has been immensely supportive of my needs as a special needs mum, but I just can’t help but feel that if I have to work, I really should be doing something that will add more meaning to my children’s lives. I should be doing something that in my heart I feel adds value to the lives of the people around me – in my home, my family and my community, while also allowing me time to actually live life with my children.

I don’t know yet what the solution is. But I know that my focus now is to work on finding that solution, something that will allow me to make use of my education and skills to provide for my children while also giving me the opportunity to fully realise the value of every second with them.

The driver of my black taxi will never know it but he has been a major player in my new ambition to change my life, to acknowledge the priorities and to dedicate myself to ensuring that both my children – my life limited son and my healthy son who will also grow up dealing with the affects of DMD on his life, have a fulfilled life, one where they are encouraged to dream big, achieve big and love big.