Eight years ago, when I was six months pregnant with you, my first born child, my sister (your aunty) gave me a blank book.
She had had her own first child seven months earlier, and in the front of the book she wrote that it was a journal for us to record those special early moments, as we embarked on the greatest adventure.
I did write, often and rambling, full of joy and awe and absolute happiness, for the three months before and two years after your birth.
I made it a tradition to write on the eve of your birthday, of the new year, and of Christmas, and as many times as I could in between, trying my best to capture those precious moments of your growth and of that great adventure.
And then there was a gap. Between your 2nd and 3rd birthday. A year in which I was simply unable to bring myself to open the book, far less to write in it.
My entry for your 3rd birthday is still painful to read. It tells of dark and difficult times, the year of your diagnosis.
After that entry, the journal ritual became a little bittersweet: birthday entries about how incredibly loved you are and how captivating your smile is, but beneath that, the inevitable sorrow of all the things I couldn’t write.
All those things I had assumed I would be recording, but wasn’t. Yet I kept writing. I felt like to stop would be to admit some kind of defeat, or to suggest that somehow now your growing life mattered slightly less to me, which couldn’t have been further from the truth. Besides, I clung (cling) to the hope that one day you would (will) read it all yourself.
But when the completion of the pages happened to coincide with your 5th birthday, I have to confess I was relieved. The ritual could stop. I could stop spending the late night hours before each birthday trying to scribble happy thoughts through blurry tears and smudging ink.
There are no pages left to fill in that journal, but it is the end of the year, and I want to write to you again. In the almost three years since I last wrote in that book, I have written plenty for other people about you, about Rett, about daily life and endless challenges. A lot of the time, it’s not good. Much of the time, it’s about lost hopes and dreams, things that have not happened or things I wish could. It’s been about battles, losses, things unlearned and things out of reach.
But this is not about those things. This is about things learned, things grasped, things gained. Things found and things created. This is not about Rett Syndrome, this is about you, my Hannah, and how proud I am to be your mom.
A few days ago, I stood in a room at the wedding reception of two remarkable people whom I would almost certainly never have met had it not been for you.
One of whom was one of the very first people to come into our “special needs” lives, long before diagnosis, and for you it was love at first sight. You still fold into giggles when she’s in the room and have difficulty remembering to breathe through your all-consuming smile whenever she’s around. She loves you right back.