Admittedly it’s not like me to post a blog that doesn’t resonate with all the hope and positive beliefs that I try so hard to cling on to. But I am human and being positive all the time is hard blooming work and sometimes you just hit a brick wall. And lately I just can’t help thinking that no matter what I do, it will never be enough!
My baby is getting worse! Every single day his muscles irreversibly waste and every single day is a day closer to that inevitable end that I try so hard not to think about. That end that I have spent the last 5 years of my life trying to fight but right now, my fight seems to have gone off and hidden somewhere and I can’t help feeling that no matter what I do it will never be enough.
I need to work, I simply don’t have the financial capacity to dedicate my time fully to saving my son, believe me, if I could I would! But I try. My days and nights are spent reading, writing, researching, thinking, never letting the ultimate goal stray too far from my mind. In turn precious time with my kids is sacrificed but to what end? What good am I really doing? My son still has Duchenne, I’m still going to lose him and Coen is still going to lose his brother and all the while my kids are living with a mother who is so stressed out she barely remembers her name some days. All this and it still isn’t enough.
I try and try to break barriers for creating awareness of this vile condition that seems like a curse on my family but 9 times out of 10 my pleas fall on deaf ears! I know that there are so many deserving causes out there and the people we need to help us create awareness can’t possibly support them all. But my child will die, that is a fact. Government investment in research is minimal because his condition is rare (not all that rare if you ask me), celebrities want to attach themselves to big name charities with plenty of support because, well let’s face it, that’s where the publicity is, and large regional and national events like marathons still tend to support the larger charities because that’s what’s safe and that’s what people know. Surely it would be more beneficial for them to support rare disease – and I’m not just saying Duchenne – but most rare diseases have extremely limited investment in research (if any) despite the significant number of rare diseases that are terminal. So no matter how many times I go barking up that tree it will never be enough because my voice simply isn’t loud enough!
There are many attempts throughout the UK to improve things like care, access to trials, improving quality of life but because I’m so detached sitting over here in sunny NI I simply don’t get invited and if I do, the financial and home life cost is just too much to be worth the trip for a 3 hour meeting (a 3 hour meeting that means not seeing my kids for about 36 hours – remember one of them is life limited – that’s 33 hours of wasted time). So I try my best to do what I can from here which, let’s be honest isn’t a big pile really, despite the time effort. So again no matter what I do it will never be enough!
I’ve changed my career but that is not enough either. I’ve tried to improve things in NI but that is not enough either. I’ve spent countless hours doing everything and anything that will help but again it’s never enough.
I am giving my boys memories to look back on though and trying my best to make them happy and I hope when they look back they will say it was enough because it’s about the only thing that seems to be right now!
I’ll pick myself back up tomorrow and will be full of positive beans again, but welcome to the world of Duchenne