Dear Mum,
I want to say I’m starting to understand, not fully, but ever so slightly how you must be feeling. You have and always will be one of my greatest heroes, you have and continue to live your life the way you want to, except now it’s changed. It’s changed in a way all new things start, unexpectedly. It’s the same way you met Dad but not a nice surprise instead it’s completely out of your control. It’s like when you decided to have your children, you can’t prepare for the journey of starting a family, but this isn’t exciting. A lot of things that might happen you know about and try and prepare yourself for and make sure everyone you love is still happy, healthy and safe. But this is a cannon ball out of nowhere without a warning. I know you sit down sometimes and think why? Why do I have to be the one not diagnosed? Why should I suffer by waiting for the time bomb to go off and watch this disease take my family. Who decided that they had the right to plant this disease in the one I love and possibly my three children. The three people I help create and the only people I answer, but this time I can’t give them what they want to hear. I can’t tell them their Dad is going to be ok and so will they. I wish I could take this pain away somehow. I think the only blessing in this is the timing and being a mum now I understand your frustration, your anxiety and helplessness. I also know that there are many things about Huntington’s Disease you didn’t mention and now I know why. I’ve now seen the facts but also the reality of people’s lives living and caring for those suffering with HD. I feel my eyes starting to fill thinking about my family’s future and think how much time do we really have together. I’ve heard the stories of those who have watched their partner, parent of their children die due to this illness. Then having to recover knowing full well that their children will or might be next and they can’t stop it. But what I have learnt and I want to tell you is we are NOT ALONE. We are not the first family to be dealt this card or the last. There will be more until their is a cure. But there is HOPE. I’ve been lucky to find and talk to people who make the greatest of memories knowing that time might be against them. They are POSITIVE, they STILL SMILE and they are STILL A FAMILY. So in those dark moments and those minutes your mind run away with what might happen, remember that one thing will never change, WE ARE STILL A FAMILY and so lucky in so many other ways for having each other. We will get through this.
Love you always,
Your Charlie
XXXX