This is life with Duchenne.

Trying to live life to the full, filling it with joy to often mask the pain.

The experiences we are offered are often so amazing, so joyful, so gorgeous to see a smile on William’s face. We are always so grateful to receive so much love. Long may it continue for him. 💙

Behind closed doors we are having more lows.

Hospital has now become very hard. William is understanding so much more. He’s showing his anger. He’s showing his distrust. He’s showing his hurt. He’s crying, he’s emotional. No more can I take it as a positive time to spend together; it is full of heartbreak and so hard. My walks to get our lunch are full of secret tears.

When you don’t know whether any of it is worth it, when you’re plucking from the sky, it makes it so much harder. I’m not sure what to tell him anymore about why we’re doing this, why he’s going through the hurt and the pain each time.

You see a new drug become available that should have been something he could benefit from; but those that make the decisions took too long and now he does not meet the end points – it just brings you down so much more. How is this fair? Why do they choose if my son can take it or not? Why can’t we choose as parents?

I’ve lost the drive, the energy, the will to try and find a cure for my boy. So many failed or inappropriate drug trials. I just don’t have it in me anymore. When your energy is drained with caring, everything else starts to take a back seat. So, I have to accept that my son won’t get cured, that duchenne will keep taking his life. That duchenne has stopped his legs working, is taking his arms from him and his independence. Why do I have to have this life of constant hurt? What did I do wrong? What did my boy ever do to anyone apart from smile so goddam hard through total shit?

We will keep focusing on making William & Phoebe smile – because that really is all we can do now. The rest of his life is out of our hands. It’s heartbreaking and very hard for anyone to understand.

Unless you walk in my shoes, you’ll never know.

I hope you never have to.