Guess who's back?

This weekend should have been the Amy and Friends' Retreat; a time where we get to see our second family. This second family is made up of people from all over the world, those with CS, their families, volunteers, doctors and so many more. This year is the first conference without the name sake, Amy Garton Hughes.

I am going to start this post by saying how thankful I am for Amy and her family. If it wasn't for you, we wouldn't have the support and understanding of Cockayne Syndrome that we do now. We would be alone on the journey. Thanks to you we have met other families, shared knowledge, hugs, laughter and tears. This weekend instead of the usual gathering, we have been taking part in a 'Virtual Conference' over Zoom. I would rather be there with everyone, but I suppose Zoom will have to do for now.

We still have the last part of the retreat to go through, the hardest part, we have a song. To remember, reflect and cry, a lot. It's something you have to understand and be part of to know how overwhelming it is. Which is why I am typing this now and not later on.

I know I haven't posted for a while. Like the rest of the world, COVID-19 has taken a dump on my mental health. I feel like, as stupid as it is, I was finally figuring out balancing life, I was making time for Terri, my family/loved ones and somehow managing time for work, exercising and myself. Then Corona happened and I gave up. Getting back into life hasn't been easy, and to be honest by the sounds of it we've done two steps forward to be thrown 10 steps back.

Terri, as per usual, is the light. The one thing in the world that makes everything just right. Even today, she came into my room at 3am because she wanted me (which is fine, I'd have her in bed with me every night if I was allowed) except she didn't get back to sleep, because she was in pain. Even then, I was happy. Every now and then through the night she would stroke me and give me a kiss, as if she was looking after me and not the other way around. Shout out to my Mam for doing this most nights for the past 17 years and 9 months - I do not know how you do it.

After spending time listening to and talking to the other families, you just realise even more, she is a gift. I have cursed Cockayne Syndrome time and time again, I have watched Terri and her friends go through so much, and still they are able to give so much love to everyone around them. Those who support Amy and Friends are more so the reason I am writing now. During a chat, they mentioned my writing and said I should keep going, so here I am, and I feel better for it already. Thank you, for not only caring for the children, but for all of us too.

So for now, this is just a catch-up, a thank you to Amy and the legacy you have left and a thank you to Terri. Thank you for being my all, even when I feel like I have nothing at all.

xxx