Luck favours those who believe they are lucky

"We never taste happiness in perfection, our most fortunate successes are mixed with sadness." - Pierre Corneille.

Alba had her first respite session today. It's something we applied for last Spring when we were on our knees, in the dark depths of not knowing up from down, or how we'd survive the next hour or two let along any longer. I wasn't sure if it was something we still needed, but I've learnt not to turn down help. She will have a few day time settling in sessions, then we can move to overnight stays if we need it. It feels odd to leave your child in an unfamiliar place with unfamiliar people at the weekend, so you can have a break. But we're lucky to have this support on hand so locally.

Lucky. A word that surprisingly comes up a lot when discussing Alba. Lucky to have a special school on our doorstep, lucky to have people who care enough to raise money to help Alba, lucky to have such flexible and understanding employers, lucky to have a good relationship with our Paediatrician, lucky to get her seen by the Rett clinic in London...Yet how unlucky are we to be here in the first place? It's funny how your perception of life changes. The things that are good, positive or you're thankful for. Things you may not bat an eyelid at in a different life.

I met someone last month who has been through a long haul of horrendous treatment for cancer. She told me how fortunate she was to live so close to the specialist cancer hospital in London and to be cared for by top consultants. Fortunate to receive cancer treatment? Sounds weird right. But we laughed. We laughed at how you value these things so much. How you consider it good, amazing to received treatment and therapy for things you'd never even have dreamt you'd have to deal with.

Dropping Alba off today hit hard. There were some really severely disabled kids there. And I sat in that room with her on the mat, surrounded by sensory toys, medical equipment and seizure plans and I felt lucky. I felt lucky to have Alba as she is, able to do all the things she can. I know most of you will have thought at some point ' God I don't know how they do it...I'm so glad my kids are ok....Aren't I lucky not to have to deal with that?'. And that's fine. I would too. And in fact today I pretty much did. I looked at those other kids and I was so grateful that Alba had been able to walk into that building with her walker, that she would be able to sit reasonably unaided at lunch and feed herself food, rather than being fed through a tube. I'm under no illusion that Rett could take these things from her at any time, but right now she's got them. I would never pity another family in a situation worse than us, as I'd hate to feel that people pity us. I admire those parents for powering through. I admire them for excepting help and for loving their kids. And I hope that sometimes they feel lucky or fortunate too. I imagine they probably do. Dealing with something like this really makes to reevaluate EVERYTHING and you see the beauty in the mundane, the boring and the darkness.

Alba had a good day. She played with the dolls, read some books, did some baking and watched some TV. I'd do anything to be waving her into ballet class or swimming lessons on a Saturday morning instead. But aren't I lucky that I've got her 🖤