I Hope You Know

Ten years old today. Ten. It’s a terrible cliché to say ‘where did that go’ and ‘hasn’t time flown’ and ‘I can’t believe my baby is 10’, but it is all frighteningly true. I wish that my birthday message to you could be one of unadulterated joy and celebration - this is what you deserve and it is true that ten years of you have brought us so much to celebrate. But I can’t say ‘I wouldn’t change a thing.’ I can’t say ‘I’ve loved every second.’ I can’t say ‘I can’t believe how independent and grown-up you’ve become.’ If I could say those words in truth, I would. If I could make them true, I would. I would take away the dark days within those ten years and I would celebrate the strong-willed, stubborn, fiercely independent neo-teenager I know you are inside. But I won’t lie to you. I suspect you would see straight through me if I did. I know you know that it’s not all been peaches and cream*. I know you know that your birthdays are bitter-sweet - a reminder of the milestones not met, of the memories not created, of the sleepovers not had and the almost-adolescent arguments not fought. I know you know that I over-compensate - that your birthday is the immersion in balloons and banners and fuss and frenzy and presents and parties and people that I make it, partly so that there is no space left; no space for the thoughts of what ‘should’ be on this day to creep in.

I read other people’s posts and messages on their children’s birthdays. I can’t write what they write. I can’t say that I’ve watched you be sworn in to the Brownies, or stand on stage and read aloud to the whole school, or that I’ve burst with pride as you learned your first ballet steps, or had to breathe deeply and wave goodbye as you’ve gone on your first overnight school trip. I can’t say that I have watched you develop friendships, find your own place, choose the people who will shape you and be with you as you grow into a woman. I can’t write that I have listened to you tell me your hopes for who that woman will be, or that I have told you that your dreams are yours for the taking, or that part of being your mum is to stand back and let you fly on your own. I can’t write these things, and I know you know it, and it hurts.

But here’s what I can write, and here’s what else I hope you know.

I can write that I have watched you cope with challenge after challenge, the likes of which would defeat most, and still come through smiling. I can write that despite your brain struggling to do what your body tells it, you have learned to walk, to point at things you want, to grasp your own drink, to pick up Pringles with the precision of tweezers and to hit a switch which can give you a voice. I can write that I have watched you walk to the front of your school hall to receive awards and applause from you peers and teachers, and that you have done so with a sparkle in your eyes and a composure which I, standing silently sobbing with pride at the back, have lacked. I can write that I have watched you captivate people and make them fall in love with you wherever you go and that I have stood back and seen how effortlessly and instinctively you just ‘get’ others. I can write that I see, in your eyes, the incredible girl you are and glimpses of the girl you will be when you are free, that I will do whatever I can to bring your dreams within your grasp, and that in the meantime I will not let you fall.

I hope you know that you simply could not be more loved. I hope you know that the heartache that came to us 7 years ago, is nothing compared to the elation and indescribable joy of holding you in my arms 10 years ago, and of being your mum every day since. I hope you know that you have cemented our family together in a way which I could never have imagined, and that you have brought people and love into our lives which I didn’t know existed. I hope you know that you have taught all of us – me, your Dad, your brothers, your family, your friends, your teachers – lessons about ourselves and about life which might otherwise have gone unlearned. I hope you know that even without a voice, you have spoken to us all and changed our worlds irreversibly. I hope you know that when I shout, cry, implore you to stop screaming or to go to sleep or to just breathe, it is not you I am shouting at or you I am angry with, it is Rett Syndrome and it is myself. I hope you know that for every time I have lost my temper or my patience or my attention, I am truly sorry, I am trying to be better, I will keep trying.

I hope you know that your laughter is like sunshine and that when you’re happy, I’m happy. I hope you know that those thoughts of what should be, these are not of what should be for me – you always have been and always will be enough, everything, all I could wish for; these thoughts are for the things I wish for you in your world and your future. I hope you know that, although I used to talk about grieving for the little girl I thought I had lost, you have taught me in the last 7 years that it is impossible and absurd to grieve when the little girl I have is precious, unique, wonderful, unexpected you. I hope you know that I carry a memory of your voice in my heart and it is the sweetest sound I know. I hope you know that your brothers love you unconditionally, that they would protect you fiercely and are better little men because of you. I hope you know that I am proud of you in ways that I cannot begin to express and I am proud to be your mum with every fibre of my being. I hope you know that the tears through which I type are tears of love and wonder and come from a heart which can barely contain all that it feels for you, my Hannah. Ten years ago, you made me into a mum, you gave me the most important, most precious gift I have ever been given, and you have been teaching me how to be better at it every day since. I am grateful to you every day. I am grateful for you every day. I hope you know that.

*’Peaches and Cream’ by John Butler Trio – a song we played for you every night when you were small, as we rocked you in our arms: “For she came, and landed in my arms, she filled my half empty cup.”

To find out more about Rett Syndrome or the work of Reverse Rett in speeding treatments and a cure for girls like Hannah, please go to www.reverserett.org.uk

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