Today was my 42nd birthday and I spent it doing what I do most Sundays. I had bacon in the morning (Jim made it for me this time time around). I took the girls out to lunch and to a few stores in Kingston. When I came home I took an afternoon nap and when I got up I did laundry (a total of eight loads since yesterday – Ana helped a lot!)
I also managed to do a little writing and squeeze some birthday cake in as well (Jim baked it for me!)
The book is starting to roll along – I’m nearly at 40,000 words (about 130 pages). This is the biggest birthday present I’ve ever given myself (even including my road bike). Writing. Letting myself just write…
The book is fantasy (the above mock up of the cover is something I’m also working on – artwork by my mom). But it’s also reality. It’s a reality-based fantasy. It’s about a little girl with cancer who discovers the doorway to another universe right in her hospital room. Well, actually, the doorway kind of discovers her. There’s a strong “memoir” component to this novel. Those of you who know me, and know Ana’s story – and who will ultimately read this book will recognize that the main character of Grace (an 11-year-old girl with a rare liver tumor) is actually Ana and that her overly anxious, overly worried mother, Maggie, is actually me.
So, this book is an outlet for me to unravel the experience of dealing with Ana’s catastrophic illness in a way that makes sense to me – by weaving it into a story. Some of it is very painful and today I hit upon a scene that brought me RIGHT BACK to the moment when Ana first came home from the hospital after her first very long stay from August 25th through October 1st. And, well, since it’s my birthday, I wanted to share that with you because it’s actually still happening. This feeling that I wrote about – and I think it says a lot about why I walk around feeling so sad sometimes, and so disconnected. And, well, if I seem disconnected and not quite present when you see me – this explains why and I just want to say that I’m sorry. I’ll find my footing again. It’s just going to take some time.
Chapter 14: Grace Goes Home (Excerpt from “Doorways to Arkomo”)
(Maggie) Home is where we go to regroup and surround ourselves with familiar bits of nostalgia peculiar to our own strange customs. Some people call it junk; crooked picture frames and first grade art projects, dusty candle holders with half-melted candles we picked out together on some long-ago shopping trip, slippers – worn and threadbare. These were my memories – saturated with the essence of normalcy that I’d taken for granted before the dark shadow fell over our lives. Each smiling photograph, each crumpled drawing, Grace’s room – with its newly painted blue walls – was a painful reminder of life before cancer.
All these trinkets, and the nontangible stuff too – like watching the leaves change in October and eagerly anticipating Halloween, was figuratively covered with cobwebs. These things we’d loved or hated, but most certainly failed to appreciate, had all been hastily discarded in our frantic scramble to keep Grace safe. We’d existed like refugees, evacuating our lives in the middle of the night – leaving meals half eaten and moments half-finished.
With Grace’s discharge came the hope that we could dust off the cobwebs and start where we’d left off. But in my heart I knew this was just a brief reprieve. She was being discharged to our care only temporarily. She wasn’t better yet and until that nebulous moment of healing, we would continue to live like refugees. We ran from the darkness that grew inside Grace, and right now it was bigger than all of us.
Sometimes I still dreamed of my childhood home with its small cluttered rooms and peeling wallpaper. I always woke up from those dreams with a pang – the memory of that little house on Long Island stirring the familiar dull ache of longing. Coming home with Grace today reminded me of those dreams. Each uncertain moment of living in this house, surrounded by the things we’d all loved, but failed to appreciate, opened a deeper ache in my heart – one that I wasn’t sure would ever go away.
It had taken us eleven years to cobble together this home, created out of nothing much – just our family’s memories and simple traditions. Grace had missed it terribly and so did I. It hadn’t been home while she was in the hospital with Billy by her side. It had just been a house – big, empty, filled with the trinkets of our former life that reminded me – with such painful clarity – that things might never be the same.
If I’d learned anything in the last six weeks, it was that a home is held together with the most fragile of glue. I’d assumed that we would all grow up together – a family of four that crowded into this shared space the way families do – often messy and contentious, but always together, always figuring things out as we went along. The certainty of us had been a sure thing. The promise of graduations, weddings, grandchildren and the comfort of an old age that my children were a part of suddenly revealed itself to be a fractured fantasy born of the naïve belief in my own immortality. At least, that’s how it felt when we finally walked through the front door together – the four of us.
So, Ana is doing well. However, her throat started hurting this morning and I’m learning that simple childhood illnesses aren’t so simple these days. She’ll get blood drawn either tomorrow or Tuesday (if the lab is closed tomorrow). Hopefully her enzymes are down again. Meanwhile, I’ll give her tea and try not to worry too much (ha!) One day at a time…