My baby Gracie May was diagnosed with Rett Syndrome just before her first birthday back in October. It’s been 8 months and isn’t it funny how you think you’ve learned all you need to know to get on with your new life? And then you meet the most beautiful little girls who make you realise you actually haven’t got a clue. Yesterday was one of those days. We met other RS families for the first time ever. Luckily it was sunny because there were a few tears streaming down from behind my sunglasses and today I feel completely drained from the emotions of it all.
These girls are all so similar yet so different. Some walked, some could touch their nose if you asked them to (hi, Frankie!) and others were in a chair like Gracie. I didn’t know whether to grasp onto the hope that Gracie will ever walk like Lydia, touch her nose like Frankie or eat crisps like Amber. With all the unknowns, one thing I do know for certain: Grace is every last inch as loving and beautiful as Amber. And Amy. And Lauren. And Megan. And Frankie. And Lydia.
