The last two weeks have had a beautiful synchronicity (though I suppose that’s not really the right word as I knew both events were happening).
I have had the honour of meeting two lovely mothers and their sons who live with Hunter Syndrome just like my Pudding.
Last week in Manchester I met up with C and her little boy who was diagnosed in July, almost a year to the day after Pudding. A few weeks after they heard the news, our specialist nurse put us in contact with each other. I’ve done my best to support her through this difficult time, letting her know what to expect and how we’ve got through the first year. I know she has also appreciated having this blog to read – making my decision to write it even more worthwhile.
It was fabulous to meet her and give her a hug in person. Her boy is a little sweetie and enjoyed playing hide and seek in the ward curtains with Pudding. What she probably doesn’t realise (though will now!) is how much I too have benefited from my contact with her. It feels a little selfish but it’s as if I’m going back a year ago and telling myself the things I needed to hear, partly rewriting the horrible time when we felt so alone and isolated.
The old hand
Then this week I flew to Ireland to meet Geraldine and Ethan. I stumbled across Ger’s blog a few months into our own diagnosis journey, left a comment and was welcomed wholeheartedly. She introduced me to the online community and was the first person I could turn to for advice.
Since then, we read each other’s writing and message a fair amount so I felt like I already knew her. We had one and a half days of wandering around her lovely hometown, drinking in the sea air and being blown along the prom, eating, shopping and talking almost non-stop. She was just as kind and funny and generous as I expected. And of course I got to meet her boys.
I thought I knew what to expect when I met Ethan. He had more language than Pudding when he was little and was a whizz at jigsaws. But he wasn’t diagnosed until he was gone five and then they had to battle for six months to get enzyme treatment for him. Sadly he wasn’t able to join the clinical trial that Pudding is on. Now he’s 14. I knew his fingers would be curled in. I knew that he was using a wheelchair more and more. I knew that his language had mostly gone. I knew that swallowing certain foods was becoming more dangerous. I knew that he likes his own space and can hit indiscriminately. Mostly I worried that I wouldn’t know how to interact with him, but I needn’t have done.
When he came in the door, Ethan made a beeline for me, took my hands in his gentle ones and looked directly at me. What I hadn’t known was how beautiful his eyes are and how much he still wants to communicate even though MPS is robbing him of so many things. I was privileged to sit on the couch to eat toast together and watch The Simpsons. I stroked his back and felt at peace.
Deep down I have always been scared that if Pudding got to the later stages of progression in Hunter Syndrome I wouldn’t know how to connect with my own child. That I would be too horrified at the changes to recognise him and love him still. Ethan taught me a valuable lesson – that he is still very much there and lovable. I am so glad I got to meet him.