It's been so long since I last wrote to you this way that it feels as though I'm writing about a different child. I'm not, of course. You've just grown and changed so much over the last year or so that I struggle to even remember how you were before now. It's funny how that happens, with time all the milestones and stages blend into one and it seems impossible to imagine you being any way other than you are now and harder still to imagine a future you. Although now I think that may also be because your future is a little more uncertain than we thought now.
Recently we got some news. I'm inclined to say bad news but upon reflection I've decided that all news is just news neither good nor bad and our own take on it will dictate how we feel about it. I don't want to feel bad and I don't want you to feel bad so by any reasonable logic I should lead by example. While it's still to be made official at your recently neurology appointment you were diagnosed with diplegia and that leaves us with as many questions as the appointment answered. Some of them about the diagnosis itself and what it actually means but mostly about what it all means for you and your future.
As a parent I've been worrying about your future since you were just a blurry little spec being pointed out to me by a sonographer (and if I'm honest I'm not sure I could even make you out despite smiling and nodding along happily). And despite the fact that we've spent over a year now knowing that something was wrong (again! I'm starting to dislike my limitations within the English language. I'm so negative!) we didn't know what or why or how and it was very easy to hide behind your progress in physiotherapy and ignore the prospect of it being long term. Because long term presents itself as a worry for your future and most importantly for your happiness.
And now I've found myself talking about this when our year has been full of so much more, our days are full of so much more. Although in a way also shaped by your disability.
You go to nursery now, your paediatrician suggested it and wrote the relevant paperwork to get you this special place. Your disability gained you this opportunity but it doesn't hold you back in the slightest. You've been making friends in a way that fills my heart with so much joy when I witness it. You run and play with them and they slow down for you if you start to fall behind, the give you extra chances to kick balls and more time and patience while you climb the slide. They behave differently with you but only so they can treat you as an equal. Maybe I'm looking too far into it because you're all only two, but I see it, and it warms my heart.
This is something that we've worried about, me and your dad. We worry about you being left out or left behind or made to feel different as if there's something wrong with that. But between you and your new friends you give me the confidence that I've been struggling to find within myself.
You, my darling girl. You're so strong willed and resilient. You emit so much life and energy every day, exploring the world and challenging yourself. Pushing yourself to keep fighting to do what you want. When you wanted to dance you danced and twirled until you could do it without falling over. When you wanted to run you picked yourself back up over and over again until you could chase after your brother, and although you still can't catch him you never stop trying. You're learning to swim and jump and both are progressing far faster than I had expected and I know that that has nothing to do with me. Of course I'm here, always. And of course I'm holding your hand if you need me and I'll always be giving you support and encouragement but it's your will, your determination and your passion that are propelling you forward.
And you're moving forward swiftly in your own direction, which is currently swayed towards glitter, wands, tutu's, princesses (Elsa and Anna in particular), singing and lots of jewellery. I'll admit this is not exactly what I envisioned when I pictured having a daughter, I still can't do a French braid and buying dresses adorned with Elsa's face makes me weep a little internally. And yet watching you bloom I know that I wouldn't change a single thing.
When we got our news I cried because it wasn't fair. I cried for the opportunities that you may not have and the dreams that may be squashed before they can develop because limitations can dictate reality. I was sad for you and oh so angry at myself because I want to give you the world and I had failed you.
I'm still sad, because it is sad news although we still don't really know what it all means. But I know I have no reason to cry anymore. You are who you are and your are fabulous. And if I took away your disability I'd take away all the parts of you that you've built within yourself to push past it. I'd lose the parts of you that inspire me, give me hope and make me so unbelievably proud every day.
I'll love you always
Mummy
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