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?
' I said, a slow smile breaking over my face.
'I was visiting my sister one day last month - she lives two roads up from here, but I had gotten lost, and I was starving. And since then I've made eight two-hour treks just to get whatever it is you're selling on a particular day. I may not be the best judge of business, but I'm pretty much a Ph.D. when it comes to good desserts.'
It had taken me a week to agree. I didn't have the time or the inclination to drive all over New Hampshire delivering muffins in the morning; I didn't know how much I could promise to produce. For every caveat I raised, Henry had a solution, and within a week I had run a draft contract past Marin that was sweet enough to get me to agree. To celebrate, I baked Henry an almond-blueberry coffeecake. He sat at my kitchen table, drinking coffee, eating cake with a newly minted businesswoman. 'I've tried to pinpoint it,' he mused, watching me sign the contract. 'There's a certain something in your cooking that's like nothing I've ever tasted. It's addictive, really.'
I smiled at him as best I could and pushed the paper across the table before he could change his mind. Because Henry DeVille was correct - there was an ingredient in my baking more concentrated than any extract, more pungent than any spice; an ingredient that everyone would recognize and no one was able to name: it was regret, and it rose when one least expected.
The next morning, as part of the Be Fit! campaign that headed this year's festival, you and I headed down to the exercise course, where participants could wheel or walk a quarter or a half mile. When you finished, clutching a certificate close to your chest, we had a quick breakfast before the day's small group sessions. Amelia was sleeping in, but I was planning to attend a workshop on body image for young girls with OI.
As soon as you were welcomed back to the Kids' Zone - the nurse who gave you a high five, I noticed, had gotten you to lift your right arm higher than any physical therapist in the past four months - I headed to the ladies' room to wash my hands before the session began. Like everything else at the hotel, the restrooms were OI-friendly: the outer door was propped open for easy access; a low table held extra soap and towels.
As I ran the faucet, another woman entered, carrying a glass of milk - it was being served as part of the overall theme of keeping healthy; the problem with OI is a deficiency in collagen, not calcium. 'I love this,' she said, grinning. 'It's got to be the only conference that serves milk between the sessions instead of coffee and juice.'
'It was probably cheaper than shots of pamidronate,' I said, and she laughed.
'I don't think we've met yet. I'm Kelly Clough, mother of David, Type V.'
'Willow, Type III. I'm Charlotte O'Keefe.'
'Is Willow having fun?'
'Willow's in heaven,' I said. 'She can barely wait to go to the zoo tonight.' The Henry Doorly Zoo was opening their facility after hours for the convention participants tonight; during breakfast, you had made a list of what animals you wanted to see.
'For David it's all about swimming.' She glanced at me in the mirror. 'There's something about you that's really familiar.'
'Well, I've never been to a convention before,' I said.
'No, your name . . .'
There was a flush, and a moment later, a woman our age came out of a room stall. She positioned her walker in front of the handicap-accessible sink and turned on the water. 'Do you read Tiny Tim's blog?' she asked.
'Sure,' Kelly said. 'Who doesn't?'
Well. Me, for one.
'She's the one who's suing for wrongful birth.' The woman turned, wiping her hands on a towel before facing me. 'I think it's disgusting, frankly. And I think it's even more disgusting that you're here. You can't play both sides. You can't sue because a life with OI isn't worth living and then come here and talk about how excited your daughter is to be with other kids like her and how great it is that she can go to the zoo.'
Kelly had taken a step backward. 'That's you?'
'I didn't mean--'
'I can't believe any parent would think that way,' Kelly said. 'We all have to scrape the bottoms of our bank accounts to make things work. But I never, ever would wish I hadn't had my son.'
I felt myself shaking uncontrollably. I wanted to be a mother, like Kelly, who took her son's disability in stride. I wanted you to grow up like this other woman, forthright and confident. I just also wanted the resources for you to be able to do it.
'Do you know what I've spent the past six months doing?' the woman with OI said. 'Training for the Paralympics. I'm on the swim team. If your daughter came home with a gold medal one day, would that convince you her life wasn't a waste?'
'You don't understand--'
'Actually,' Kelly said, 'you don't.'
She turned on her heel, walking out of the restroom with the other woman trailing behind. I turned the water on full blast and splashed some onto my face, which felt as if it had gone up in flames. Then, with my heart still hammering, I stepped into the hallway.
The nine o'clock sessions were filling. My cover had been blown; I could feel the needles of a hundred eyes on me, and every whisper held my name. I kept my gaze trained on the patterned carpet as I pushed past a knot of wrestling boys and a toddler being carried by a girl with OI not much bigger than himself. A hundred steps to the elevators . . . fifty . . . twenty.
The elevator doors opened, and I slipped inside and punched a button. Just as the doors were closing, a crutch jammed between them. The man who had signed us in yesterday was standing on the threshold, but instead of smiling at me in welcome, like he had twelve hours earlier, his eyes were dark as pitch. 'Just so you know - it's not my disability that makes my life a constant struggle,' he said. 'It's people like you.' Then, with a rasping of metal, he stepped back and let the elevator doors close.
I made it to the room and slid the key card inside, only to remember that Amelia was probably still sleeping. But - thank God - she was gone, downstairs eating breakfast or AWOL, and right now I didn't care which. I lay down on the bed and pulled the covers over my head. Then, finally, I let myself burst into tears.
This was worse than being judged by a jury of my peers. This was being judged by a jury of your peers.
I was, pure and simple, a failure. My husband had left me; my mothering skills had been warped to include the American legal system. I cried until my eyes had swollen and my cheeks hurt. I cried until there was nothing left inside me. Then I sat up and walked to the small desk near the window.
It held a phone, a blotter, and a binder listing the services offered by the hotel. Inside this were two postcards and two blank fax cover sheets. I took them out and reached for the pen beside the telephone.
Sean, I wrote. I miss you.
Until he moved out, Sean and I had never spent any time apart from each other, unless you counted the week before our wedding. Although he'd moved into the house where Amelia and I lived, I had wanted to create at least the semblance of excitement, so he'd bunked on the couch of another police officer in the days leading up to the ceremony. He'd hated it. I'd find him driving by in his cruiser while I was at work at the restaurant, and we'd sneak into the cold room in the kitchen and kiss intensely. Or he'd stop by to tuck Amelia in at night and then pretend to fall asleep on the couch watching TV. I'm onto you, I told him. And this isn't going to work. At the ceremony, Sean surprised me with vows he'd written himself: I'll give you my heart and my soul, he said. I'll protect you and serve you. I'll give you a home, and I won't let you kick me out of it ever again. Everyone laughed, including me - imagine, mousy little Charlotte being the kind of sultry seductress who'd have that much control over a man! But Sean made me feel like I could fell a giant with a single word or a gentle touch. It was powerful, and it was a me I had never imagined.
Somewhere, in the deep creases of my mind - the folds where hope gets caught - I believed that whatever was wrong between Sean and me was reparable. It had to be, because when you love someone - when you create a child with him - you don't just suddenly lose that bond. Like any other energy, i
t can't be destroyed, just channeled into something else. And maybe right now I'd turned the full spotlight of my attention on you. But that was normal; the levels of love within a family shifted and flowed all the time. Next week, it could be Amelia; next month, Sean. Once this lawsuit was over, he'd move back home. We'd go back to the way we used to be.
We had to, because I couldn't really swallow the alternative: that I would be forced to choose between your future and my own.
The second letter I had to write was harder. Dear Willow, I wrote.
I don't know when you'll be reading this, or what will have happened by then. But I have to write it, because I owe you an explanation more than anyone else. You are the most beautiful thing that's ever happened to me, and the most painful. Not because of your illness, but because I can't fix it, and I hate seeing those moments when you realize that you might not be able to do what other kids do.
I love you, and I always will. Maybe more than I should. That's the only reason I can give for all this. I thought that if I loved you hard enough, I could move mountains for you; I could make you fly. It didn't matter to me how that happened - just as long as it did. I wasn't thinking of who I might hurt, only who I could rescue.
The first time you broke in my arms, I couldn't stop crying. I think I've spent all these years trying to make up for that moment. That's why I can't stop now, even though there are times I want to. I can't stop, but there isn't a moment I don't worry about what you'll remember in the long run. Will it be the arguments I had with your father? The way your sister turned into someone we didn't recognize? Or will you remember the way you and I once spent an hour watching a snail cross our porch? Or how I cut your lunchbox sandwiches into your initials? Will you remember how, when I wrapped you in a towel after your bath, I held you a moment longer than it took to dry you?
I have always had a dream of you living on your own. I see you as a doctor, and I wonder if that's because I've seen you with so many. I imagine a man who will love you like crazy, maybe even a baby. I bet you'll fight for her as fiercely as I tried to fight for you.