It has been a while since I last blogged. A ‘memory’ came up as its mental health day and I stupidly read the blog attached to it. This was written years ago and I look back and want to give myself a hug. I hadn’t even been through cancer then!

Reading my past helps me deal with my future. My worries back then were about William’s ambulance: whether he would fall or be knocked. Could we do any more to keep him walking? Could we find another way to support him? Is there a cure?? I know we did our best, but you always think you could do more.

Now, William can not walk – so that fear has gone right? Nope! It’s just replaced by others, more intricate ones….when will he lose the use of his arms? When will he not be able to feed or drink himself?

The fear of him becoming non-ambulant was big and real. The consequences of it were not known back then…cleaning, clothing, drying, toileting, hoisting, lifting…. being a full time parent carer.

That said, he’s such a determined lad. He has taken to being non-ambulant far better than we could’ve hoped. He takes life in his stride. He has the most wicked sense of humour. He loves cars & gaming to the extreme. He is a beautiful soul who makes anyone who talks to him smile. He knows he is safe. He knows he is ok. My favourite line of his when I’m feeling down (apart from I love you) is “ah I love my life”. How can a boy who has been dealt so much keep coming through each new obstacle and still say he loves life not be worth loving and living for?

I always say he’s my hero but, he truly is. His sister is up there too, she is the most beautifully inclusive supportive girl out there. They are lucky to have each other.

I will always fear the inevitable of Duchenne for my boy, that will never leave me. But, I am learning to live for him and not the condition. I am not a scientist; I can’t find a cure. I don’t need to compare him to other duchenne boys; he’s mine and he’s unique. I’m learning to live in our bubble and enjoy what life brings. Memories are not always easy to look back on, but making them is worth it at the time.

Take care of yourself every day. Anxiety is real. Talk to your friends and loved ones. Take the pill if you need to. Step back and make changes when needed. Look after you and those closest to you, because really that’s all that matters.

#worldmentalhealthday #sendparent #duchennemum #duchennemusculardystrophy #cancersurvivor #breastcancer