I’ve noticed recently that the response I’ve received when I’ve told anyone about Tilly’s genetic condition and her resulting ‘special’ needs, has been a sympathetic one. Generally, something along the lines of “oh, I’m really sorry to hear that.”
I want to write a post to ask you , please, don’t feel sorry for us. Please feel happy and delighted that we have been gifted with the most wonderful, loving, strong-willed, brave and beautiful little girl. Just in the way that you’d respond if I told you about Elliot, Tilly’s ‘neurotypical’ little brother.
Don’t get me wrong, it has been a more difficult journey in so many ways than the one we’re going through with Elliot, and at times I have really struggled, with many tears and tantrums to get myself through it. The journey will continue to throw obstacles in our way, with battles to be won, difficult decisions to be made – but these obstacles are mainly a result of the system we are forced to deal with. It doesn’t change who Tilly is, and doesn’t change how we all feel about her.
For a little girl who is unable to talk, she brings love and joy to so many people. And none of those people feel sorry for her – they love her for who she is, appreciating and rejoicing in every little step she makes in her development (of which there are many at the moment!). When those sparkly eyes of hers connect with yours, it is such a special moment. She is able to communicate with you on a level you didn’t even know existed.
So, please, don’t feel you need to say sorry. Instead, ask me about her – she’s one of my favourite subjects so I’ll happily tell you all about her. Alongside her little brother Elliot, she is the most special and wonderful human being I have ever met.
If you’re lucky, maybe one day you’ll meet her and be able to enjoy some of the Tilly magic too.