In 2002, having graduated and spent a couple of years trying on various jobs and pondering what an English degree actually qualified me for, I packed my rucksack and set off round Europe. The best thing I ever did (almost). The start of the journey which led me to where I am now, and a wealth of wonderful people, places and memories. I flirted in Paris, fell in love with Prague and moved in with Cesky Krumlov where I remained for two beautiful, sleepless, life-changing years. It was the best thing I ever did (almost), the middle of the journey which led to where I am now (the proposal I accepted was made in Krumlov), and a period of time I will never forget or regret.
Amsterdam, somewhere en route, was a great place and good time (not necessarily for the reasons you think). Italy, a few stops later, took my breath away: Venice, Verona, Florence and Rome, followed by a flight to Greece which should have been my final destination but was rapidly turned into a mere weekend stop, thanks to my overwhelming desire to see more of Italy. Of course it’s only my opinion, but against Holland, Italy had triumphed.
A few weeks ago I was privileged to be part of the beginnings of Reverse Rett’s parent support network for families newly diagnosed with Rett Syndrome. It was a day of sadness and hope, inevitably revolving a great deal around our own experiences of diagnosis and the lessons we have learned since. We spoke about the things we were told or read when our daughters were diagnosed, the things that helped and the things that would have been better left unsaid, or unread. It got me thinking about some of those things and how our perspectives on them have changed since those early raw, naive days. Which is where Holland and Italy come in.
Many of you reading will know the writing I refer to, many will have your own versions and reflections on how helpful the metaphor has been for you. For those who have no idea what I’m on about, to spare me the time and words explaining, here’s the link:
I was given ‘Welcome to Holland’ to read just a few months after Hannah was diagnosed and, fragile as I was, it did help. I don’t dispute that for a second, and I still think it is a beautiful piece of writing with a powerful, hopeful message. Certainly, I wanted to be happy to live in Holland. It seemed like the ultimate goal: to accept where you have ended up.
But as time has gone on, and as I have read several alternative versions and discussions of the piece, something has troubled me. And it’s not, despite what the travel journal above may suggest, because I basically do prefer Italy. Nor, as a previous blog discusses, is it because I see acceptance (particularly when change is a genuine possibility) as defeat. It’s because I have come to realise that where I prefer to live is really not the point. What about Hannah?
You see, I don’t think that Hannah does want to live in Holland. Yes yes, I can see all the benefits and beauties of Holland – the tulips, the bicycles, the canals, I can learn to see how much more they give to me than the Roman Forum, the Ponte Vecchio or, indeed David(!), ever could. I can adapt my expectations about my life so that the disappointment and shock of landing in Holland instead of Italy is turned into celebration. I can do that.
After all, I’ve had two decades of responsibility-free, adult, uninhibited, able-bodied life to lead, in which I have been fortunate enough to see Holland, Italy and a whole host of other countries. I’ve dabbled my feet in several of them, and if Holland is the one I end up swimming in, even if it wouldn’t have been my first choice, then that’s fine with me. It really is. But don’t tell me it’s alright with Hannah. She hasn’t dabbled her feet in anything, she’s simply been plunged straight into the deepest canal in Holland without even being allowed a paddle in Venice or Florence or Rome on her way in.
Actually, that’s not strictly true. She does dip her toes in Italy now and then, she even got to live there for a short while. But, like a child who moves house before she has had time to form real memories of her first home, I suspect she has forgotten what Italy was like. Sometimes I think she has a flash of memory, a brief spark of recollection, but it’s like looking at an old photo of somewhere you think you remember but actually your memory is based on the photo, not the experience. Hannah’s photos of Italy are her brothers, her cousins, the children around her who get to live there, but they are two dimensional, she cannot jump into the photo and live there too. Metaphorically and literally, her chance to travel and see and choose has been stolen. Metaphorically and literally, I just don’t think Hannah likes Holland. I know she doesn’t like seizures, medication, tremors, silence, dependence, and no amount of tulips, windmills or inspirational visits to Anne Frank’s house are going to change that.
So sure, my plane can get diverted and land in a destination I wasn’t expecting, for which I have packed all the wrong clothes, learned the wrong lingo and brought the wrong currency. I’m a grown up with a voice and a choice and a wallet; I’ll figure it out and, undoubtedly, learn to love the place I have landed even more, precisely because of the challenges I have overcome just to survive in this unexpected clime. After all, Cesky Krumlov was never on my travel itinerary, was a challenge in more ways than I could ever explain, and won a place in my heart which will never fade. It is the kind of exhilarating, life-affirming challenge I want my daughter to have, but it is the kind of challenge she will never get to have if she has always to live in Holland.
Fortunately, though, that’s not the end. There is a postscript. A postscript about the hopeful privilege of spending a day with some founders and leaders of Reverse Rett: the people who, one of these days, will help me to buy my daughter a ticket out of Holland. One-way.