Handle With Care Read online

  Charlotte

  August 2008

  T

  he 2008 Biennial Osteogenesis Imperfecta Convention was being held in Omaha, at a huge Hilton with a conference center, a big pool, and over 570 people who looked like you. As we walked into the registration area, I suddenly felt like a giant, and you turned to me from your wheelchair with the biggest smile on your face. 'Mom,' you said, 'I'm normal here.'

  We'd never been to a conference before. We'd never been able to find the money to come to one. But Sean had not slept at our house in months - and although you hadn't asked why, it had less to do with you not noticing than with you not wanting to hear the answer. Frankly, neither did I. Sean and I had not used the word separation, but just because you didn't put a name to something did not mean it wasn't there. Sometimes, I caught myself wondering what Sean would like for dinner, or picking up the phone to call his cell before I remembered not to. Your face lit up when he came to visit you; I wanted to give you something else to look forward to. So when the flyer for this conference came via email from the OI Foundation, I knew that I'd found the perfect prize.

  Now, as I watched you eyeing a phalanx of girls your age roll by in their own wheelchairs, I realized we should have done this earlier. Even Amelia wasn't making any sarcastic remarks - just taking in the small groups of people in wheelchairs, walkers, or on their own two feet, greeting each other like long-lost relatives. There were preteen girls - some who looked like Amelia, others who were short of stature, like you - taking pictures of each other with disposable cameras. Boys the same age were terrorizing the escalators, teaching each other how to ride their wheelchairs up and down them.

  A little girl with black ringlets walked up to you, her braces jingling. 'You're new,' she said. 'What's your name?'

  'Willow.'

  'I'm Niamh. It's a weird name because there's no v but it sounds like there is. You've got a weird name, too.' She looked up at Amelia. 'Is this your sister? Does she have OI?'

  'No.'

  'Huh,' Niamh said. 'Well, that's too bad for her. The coolest programs are for kids like us.'

  There were forty information sessions over a three-day weekend - everything from 'Financial Planning for Your Special-Needs Child' to 'Writing the IEP' and 'Ask a Doctor.' You had your own Kids' Club events - arts and crafts, scavenger hunts, swimming, video game competitions, how to be more independent, how to improve your self-esteem. I hadn't been too keen on giving you up for a day's activities, but they were staffed by nurses. Preteens with OI had Game Night, and The Adventures of Bone Boy and Milk Maid. Even Amelia could attend special talks for non-OI siblings.

  'Niamh, there you are!' A teenage girl who looked about Amelia's age came closer with a pack of kids trailing behind her. 'You can't just run off,' she said, grasping Niamh's hand. 'Who's your friend?'

  'Willow.'

  The older girl crouched down so that she was eye level with you in your chair. 'Nice to meet you, Willow. We're just across the lobby over there playing Spit if you want to join us.'

  'Can I?' you asked.

  'If you're careful. Amelia, can you push her--'

  'I've got it.' A boy stepped forward and took the handles of your chair. He had dirty blond hair that swept into his eyes and a smile that could have melted a glacier - or Amelia, at whom he kept staring. 'Unless you're coming?'

  Amelia, to my disbelief, blushed.

  'Maybe later,' she said.

  Although there had been handicapped-accessible rooms blocked out at the hotel, we didn't book one. Amelia and I didn't particularly want a roll-in shower, and the idea of using a loaner shower seat for you made my skin crawl. You could easily clean up in the bathtub and wash your hair under the faucet. We'd attended the keynote speech, which was about current research on OI, and gone to a sprawling buffet dinner - one that included low tables so that wheelchair users or very small people could see and reach the food.

  'Lights out,' I said, and Amelia buried herself under the covers, the iPod buds still in her ears. The screen glowed beneath the sheets. You rolled onto your side, your face already wreathed in dreams. 'I love it here,' you said. 'I want to stay here forever.'

  I smiled. 'Well, it won't be much fun when all your OI friends go back home.'

  'Can we come again?'

  'I hope so, Wills.'

  'Next time, can Dad come with us?'

  I stared at the digital alarm clock as one number bled into the next. 'I hope so,' I repeated.

  This is how we wound up coming to the convention:

  One morning, when you and Amelia were at school, I was baking. It was what I did when you were gone now; there was a Zen rhythm to beating together the sugar and the shortening, to folding in the egg whites, to scalding the milk. My kitchen steamed with the smells of vanilla and caramel, cinnamon and anise. I'd whisk royal icing; I'd roll out perfect pie crusts; I'd punch down dough. The more my hands moved, the less likely I was to let my mind wander.

  Back then, it had been March - two months since Sean opted out of the lawsuit. For a few weeks after our row in the middle of the highway, I'd left the pillows and bedding on the fireplace hearth, a just-in-case, as close as I could come to an apology. He came to the house every now and then to see you girls, but when he did, I felt like I was intruding. I would balance my checkbook, I would clean the bathroom, while listening to your laughter downstairs.

  This is what I wish I'd had the guts to say to him: I made a mistake, but so did you. Aren't we even now?

  Sometimes I missed Sean viscerally. Sometimes I was angry at him. Sometimes I just wanted to turn back time, to go back to the moment he had asked, What do you think about a vacation to Disney World? But mostly I wondered why the head could move so swiftly while the heart dragged its feet. Even when I felt sure of myself and confident, even when I started to think that you girls and I would be fine on our own, I still loved him. It felt like anything else permanent that has gone missing: a lost tooth, a severed leg. You might know better, but that doesn't keep your tongue from poking at the hole in your gum, or your phantom limb from aching.

  So every morning I baked to forget, until the windows steamed and just breathing felt like sitting down at the finest table. I baked until my hands were red and raw and my nails were caked with flour. I baked until I stopped wondering why a lawsuit could move so exceedingly slowly. I baked until I didn't wonder where next month's mortgage payment would come from. I baked until it grew so hot in the kitchen that I wore only a tank top and jogging shorts under my apron, until I imagined myself under the golden dome of a flaky crust of my own making, wondering if Sean would break through before I suffocated.

  Which is why I was stunned when the doorbell rang in the middle of a fleet of beignets. I was not expecting anyone - I had nothing to expect anymore, period. On the porch stood a stranger, making me even more aware of the fact that I was only half dressed and my hair was grayed with confectioners' sugar.

  'Are you Ms. Syllabub?' the man asked.

  He was short and round, with a double chin and a matching curve to his receding hairline. He was holding a plastic bag full of my shortbread, tied with a green ribbon.

  'That's just a name,' I said. 'But it's not mine.'

  'But--' He glanced at my attire. 'You're the baker?'

  'Yes,' I said. 'I'm the baker.' Not the gold digger, not the bitch, not even the mother. Something separate and apart, an identity as bright and clear as stainless steel. I held out my hand. 'Charlotte O'Keefe.'

  He planted his feet squarely on the doormat. 'I'd like to buy your pastries.'

  'Oh, you didn't need to come up here for that,' I said. 'You can just leave a couple of dollars in the honesty box.'

  'No, you don't understand. I want to buy all of them.' He handed me a card, the kind with raised lettering. 'My name's Henry DeVille. I run a chain of Gas-n-Get convenience stores in New Hampshire, and I'd like to feature your baked goods.' He flushed. 'Mostly because I can't stop eating them.'

  'Really?