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My sister was on her way over that Saturday, fourth of July weekend, with her family and our mom. It was a perfect day, not as oppressively humid as it had been, and at first I thought I was just having a bad allergy day. My right eye kept bothering me. It was leaking and running and tearing up to the point of frustration. Finally, I just took out my contact lenses and threw on my glasses. We ate, drank and had fun and when my family left, I put together a small supper of leftovers for Robert and the girls. I started getting a bad headache behind my right eye. Then it became a full-blown migraine. Still not unusual. They come on now and then. I’ve been getting them for a while. I’d take my migraine medication before bed and I’d be fine for all we had going on in the next few days. As we ate, I realized that the right side of my tongue was numb. I went through the files of my brain to find a food I may have consumed that day that could have caused this. My sister had brought over macaroni salad, but there wasn’t anything different in it than usual. We also had barbequed chicken. No worries there. Fresh veggies with dip, no peas, or anything like that. I couldn’t figure it out. I don’t have too many food allergies but I have a couple of attacks a year because inevitably those foods are in something I’ve eaten when I wasn’t aware it lurked in there somewhere. Like when my in-laws bake at the holidays, they put a lot of walnuts in everything, so I’m very careful to ask first or avoid altogether. My husband’s whole family can really bake like masters but I swear they’ve been trying to kill me for years and they keep saying they “forgot” I have allergies. They always wonder why I avoid the desserts, too. No, it’s not a diet. I went to bed early that night, looking forward to the parties and fireworks that were to follow in the next two days of this long weekend. I didn’t feel weird until I tried to eat breakfast the next day. I couldn’t control the right side of my mouth and my lips felt numb. My eye was still very irritated and I was worried about what might be going on. This wasn’t like any of my other allergy attacks. But I had heard of some people getting numbness in their face during a bad migraine, so I continued on with our day. “Mommy, when you smile, only one side of your face goes up,” Violet said to me after breakfast. I went into the bathroom where we watched my face react normally on one side, and just droop on the other. “Hon, come here!” I yelled. As I stood in front of the bathroom sink trying over and over to move my face normally, I was struck with the memory of my mom calling to my dad as she caught sight of my hands when we first found out I have arthritis. I shuddered, peering into the mirror, willing my face to move. “What’s going on?” My husband came up from the cellar, sweating and panting. He’s a lot like my dad sometimes. It was getting very hot outside, I could tell, but our downstairs stayed as cool as a cave for most of the day. “Look,” I directed him, and his expression immediately turned to concern after he saw my face’s lack of reaction. “I can’t move the right side of my entire face,” I tried to say, but my f’s did not take shape and fell flat against my lips. “My face hurts. Bad,” I added. “Can you move your arms and legs on that side?” He asked. “Yeah, no problem. Do you think this is caused by my migraine?” I knew he was thinking stroke, especially since my dad was so young when he had one. But I’d seen first hand what a stroke was, and I was pretty sure this wasn’t one. I was still convinced I was having weird migraine symptoms. Plus, I didn’t smoke two packs of Camels Unfiltered every day for forty years the way my dad did. “I don’t’ know,” he said. I sat down at the island in the kitchen, rubbing my right eye. “This is still really bothering me.” “All right,” Robert said. He was about to take action. This is what he did. “Take something for your head and go lay down. I’m going to set up the tent, even though it looks like rain. If we stay home from the Milford party then I’m going to pick up some ice cream and sundae stuff for the girls.” My daughters were expecting their friends over for a sleepover in our tent in the backyard. We were supposed to go to a cookout first, then the fireworks in Milford but rain threatened and I began to feel worse and worse as the day went on. I sighed. “Okay,” I gave in. I took another migraine pill and headed to bed. I slept for two hours. When I woke up, I was groggy and my jaw and cheekbone killed. I tried to take a sip of the water I’d left on my bedside table but my lips would not function. What the heck now? Was all I kept thinking. Why was this happening? Really? Do I deserve this, too? Well, I couldn’t just lay there and feel sorry for myself. I had stuff to do. I got up, the girls’ friends came over, they had fun putting all their stuff into the tent and setting everything up the way they liked it. They played and swam and then we ordered pizza. These girls can eat. I knew my two ate well but I didn’t know too many other kids who could put away as much pizza as Nattie. I liked kids that ate well. Good thing we got three pizzas. Who told me girls don’t eat? They were wrong. Some do. After that we made huge sundaes with cookie dough and moose tracks ice cream, caramel and hot fudge syrup, whipped cream and m&m’s. Yum. But by then I could barely taste anything and I was getting very frustrated at the way everything just seemed to slide down and out the side of my mouth! Unreal. The worst part was the crushing pain in my face. I went to bed early again. The girls were so good, they entertained themselves and because they were outside we didn’t have to tell them to be quiet and go to sleep a million times. Until two in the morning, when I did tell them to settle down. They were still out there whooping and screaming. My poor neighbors. I woke up in more pain than ever. It was fourth of July. I was sure as soon as I got up that I was not going to be able to go to the cookout then fireworks at our friends’ house. There was no point in even trying. The right side of my head was like an explosion. I could barely speak clearly at this point. I knew I had to call the doctor first thing the next morning, so I packed Robert and the girls up for their day, took more medication and went to bed. I tried to watch a movie later, but my eye was so irritated that I ended up just going back to sleep. They came home around eleven thirty. They had fun and looked exhausted, so we all just went to bed. Robert had to work the next day. I was a mess when I finally got up. It was so hot outside and my head was pounding. I called Robert at work to see if there was any way he could get out early. I needed to go to the doctor. He came home after lunch and I got an appointment right away but the doctor wanted me to go straight to the emergency room for a cat scan. I guess they have to cover all their bases, but the doctor said it was pretty clear that I had Bell’s Palsy, an inflammation of the facial nerves. They had to do a full blood workup and also a head scan to be sure it wasn‘t something more serious. I resisted, telling her that I have a $200 co-payment at the emergency room and I’d already just dropped my usual $30 there at her office today. I knew they would not keep me overnight at the hospital, which is the only way to avoid the copay, but the doctor insisted she was calling over there to set it up for me. We piled everyone back up in the car and headed over to Milford Hospital. I dread that place. I have so much painful history there. The drive from my doctor’s office in Franklin to Milford that afternoon was brutally silent. I wonder if the girls were scared? I was too rattled to wonder about it then, or to reassure them. Robert’s face was a stone, his lips a hard line, pressed together as if he was trying to keep something inside. I didn’t have to wait long. The place was dead, plus when your doctor calls ahead you get right in most of the time. They led me into the ER and instructed me to lay down on a stretcher in the hallway, right in front of the nurses station. Under the glare of bright lights and all the buzzers going off, I waited patiently while nurses took my blood pressure and monitored my symptoms. An hour and a half later, the resident on call, “Sonny,” looked in my mouth, my ears, perceived my facial paralysis, and determined that I could have something for the pain. He prescribed percocet, which I hate with a passion, but I took it and tried to close my eye. “Mom, your eye’s not closed,” Nat said casually, barely looking up from her iPod Touch. I tried to look at her, my left eye rolling around and my right barely moving. She was tanned and relaxed. My nurse had found the girls some chairs and they were settled in, Nattie on her iPod and Violet, brown eyes big, watched and observed all of the commotion carefully. She wants to be in the medical field, she tells me all the time, maybe a nurse, maybe a doctor. She’s not sure yet. She watched intently as a cute, young girl with a dark ponytail and tight scrubs drew tube after tube of blood from my arm. She almost sprang from the chair to see my nurse tape up my eye and put a patch over it. When the nurse left, Vi patted it with her small hands, and like the little mommy she is, she smoothed over a spot, She smiled slightly. I tried to smile back but I was afraid of what that looked like. A grimace out of the worst horror movie? People drifted down the hallway, not ashamed to stare until they could figure out what was wrong with me. Good luck, I thought. My head continued to ache. An hour later, the doctor came back and told me I didn’t need a CT scan after all. Robert and I exchanged a glance and without speaking we aired all of our frustrations out in that one look. Sonny’d spoken with a neurologist and I have textbook Bell’s Palsy. I would need to see a neurologist within four days (joke: no specialist can take you in less than two weeks, if you are lucky), and a prescription for percocet. I needed to explode. Inside my head, I ranted. What?! You can’t unblock this nerve? Blow this puppy out? Get rid of this paralysis? Come on! I wanted to scream. What a waste. A waste of time and money. We shuffled out of there another hour later, after waiting for the nurse to come back from dinner and prepare for my release. The woman at reception told us she’d bill us for the copay. That was nice of her. I decided to call my rheumatologist the next day. I got an appointment with the neurologist, too, for another two weeks, which does me no good at all right now and I wanted some relief. After an extensive internet research, I found out that steroids are sometimes prescribed to lessen the inflammation but that the prescribing of steroids for this condition varies from year to year. No one can figure out if it helps or not. Well, I didn’t care. I was willing to try everything. By the next day, my rheumatologist had put me on a high dose of prednisone and ordered a CT scan. My test for Lyme disease came back negative, and I will be tested for that again in a few weeks. It’s been a week and a half and although I am significantly better, I am continually frustrated with my eye, the inability to eat, and how difficult and painful talking is after a while. I am at my best in the morning but I still need a lot of rest. I am praying there was no permanent damage to my nerves and that everything heals normally so I can get back to enjoying my summer! Until then, have a drink on me, or I’ll just get it all over myself, anyway!

I hate shot days. I know they help me which is the only reason why I continue to give myself the stinging stabs of pain. They give me more freedom from my arthritis than I’ve ever had before, and despite the risks, and despite the puncture wounds, I do it faithfully every week. But I stress over it and I dread it more and more every time.
After breakfast on Thursdays I take my usual handful of pills, I have two cups of coffee while reading, talking on the phone, checking email or text messages or watching some TV, then I start to mentally prepare myself for the searing-hot burning sensation for the fifteen unending seconds that it takes for the medicine to enter my body. It burns worse than if I held my hand over a flame, or in this case, my upper thighs or stomach, which are the recommended sites for Enbrel injections.
I used to be on Humira shots. They were the same, all pain but some gain. I took it every two weeks when it was first approved by the FDA, then I had to start taking it every week, since my body had gotten used to it so quickly. That held for a while until finally I was in so much pain and had so much swelling that my doctor suggested I switch to Enbrel. I started taking it every two weeks, just like the Humira, then eventually, every week, as I am now. My body starts to really need it by the fifth day so I’m starting to wonder what will be next. What is the biggest and brightest drug on the market for Rheumatoid Arthritis these days? Lord knows, I’ll find out soon.
My doctor has often suggested Remicade but when she did I was a young mother with two babies in diapers and I didn’t see how a two hour IV was going to be possible. The initial schedule was brutal. It did get better but I just couldn’t take that much time commuting to the hospital and sitting there on an IV for hours when my children were so young. I needed something I could do myself. So I went on these other new forms of treatment. The biologicals are different from the DMARDs I was always on, am still on, for I’ve never really been able to get off of the Methotrexate completely and still take four tablets a week, even though I’d been on much higher doses before. I take another DMARD called Sulfasalazine, (Azulfadine), as well to combat my Colitis and Arthritis together.
The first few months I took Humira it was a normal syringe pre-filled with the exact amount of medication. Eventually they changed it to a prefilled, automatically discharged needle at the press of a button. The problem is, the needle goes in quick and deep, puncturing the skin and leaving blood and bruises like no other injection I’ve ever had. Well, except from an inexperienced phlebotomist. You have to keep it in until the needle automatically retracts when the medicine is completely gone. I’ve talked to other people who take it, as well as the people who answer the phone on the hotline who want feedback, about how much it stings and burns going in. I can’t understand it but even the Enbrel stings like mad as it goes in. It’s a long fifteen seconds. I do my labor breathing as if it’s a contraction. It helps a little, but I do not do my shot in front of anyone. Tears spring from my eyes sometimes and I don’t want anyone to see that. It’s just not necessary. The girls have never watched me do my shot and Robert never does, as he used to be the one giving me injections until finally he told me he couldn’t bear to be the one causing me so much pain. It was useless to explain that it wasn’t him. He was doing the injection so he felt badly.
“I’m going upstairs to do my shot, girls,” I called from the kitchen. They are now old enough to be on their own for short periods of time. Actually, they prefer it.
“Yup,” in unison.
I peek into the living room where the girls are in the love seat together, the puppy between them inching for more room against their legs. He’s getting bigger.
“Are you guys okay? Need anything before I start?”
“Nooope,” in unison. Their eyes never leave the TV.
“I don’t want anyone yelling ‘Ma’ while I have the needle stuck in my leg, girls,” I say with a warning tone in my voice.
“We wooon’t,” in unison.
I sigh and gather the supplies I’ll need for the next half-hour: a cold drink, a book, my iPhone and my shot, chilly from the fridge. Upstairs, I remove an alcohol swipe from the 100 count box in my linen closet then I lock myself in my bedroom. I turn on some music. I take a few deep breaths. I close my eyes and try to relax.
I have to wait ten to fifteen minutes after I take the shot out of the fridge to let it come to room temperature before I can use it. I’ve found it hurts less when you inject it cold but the advice of someone I’d spoken to right at the beginning when I thought something was wrong, or I was having an allergic reaction to the medicine, told me to let it warm up first.
There are typically four places you should inject on your body and I do a rotation from week to week that goes like this: left leg, right leg, right belly, left belly. Then I start all over again the next month. I have to write it down because I always forget where I put it last from time to time. The scars and bruises are misleading because some weeks are worse than others and the mark from two weeks ago could be bigger and redder than the one I did just the week before.
I open my eyes as Pink Floyd’s “Comfortably Numb,” pops up on my iPod.
“Relax. Just a little pinprick. Just nod if you can hear me. But you may feel a little sick. Can you stand up? I do believe it’s working. Good. That’ll keep you going for the show. C’mon it’s time to go.” I tore open the alcohol wipe and rubbed a spot on my stomach just above my left hip. I made sure there were no stretch marks, freckles or scars in the area.
I removed the plastic tip from the end where the needle shoots out and placed the edge of the tube-shaped shot to my belly. I took a deep breath and pressed the purple button.
Snap! The needle came out and slammed into my skin. The burn started immediately and I did my breathing. In and Out. One, Two, Three, Four. . .
“Mooooooom!”
It never fails. I kept trying to breathe. The more it hurt and the longer it took, the more one of my girls yelled for me. I couldn’t tell which one anymore. Didn’t I explain to them? Don’t they know by now? Ugh! It was so frustrating!
I used to do my shots at night when the kids were in bed but now that they are 11 and 9 they are no longer in bed early. It’s also summer. There’s no set schedule, and with summer softball we are getting in very late from some travel games. I switched it to Thursday mornings when they started school and I was at my leisure to inject myself at will. Not any more, I guess.
“Just a sec,” I managed to yell, just as the spring detracted the needle from my stomach and withdrew. I slid the white cap back on, rubbed the area, and sat completely still for a minute. My breathing resumed its normal course.
“Mooooooom!”
I sighed.
“Yes?” I called with as much patience as I could fake.
“Come here!”
“I’m busy! Can it wait?”
Then I heard the younger saying, in a really snooty tone, “Nat-a-lie! Mom’s doing her shot!”
“Oh yeah, I forgot!” Of course she did. “Sooorrry!” She called up and I had to smile. She was something, my eldest girl. The epitome of Carpe Diem.
When I stood, I felt lubricated like the Tin Man and winced only at the mild pain from the injection site. I gathered up my “supplies” and went on to meet the day and whatever problems the girls were having at the moment. On my way, I slid the shot into the red, plastic receptacle that held my used syringes and snapped it shut.
“Until next time,” I said to it, for no apparent reason, and made my way downstairs.

We hope you enjoy this breakfast in bed.
This morning you will be very well fed.
Father’s Day is a day to enjoy.
That explains why you are a boy!

“Mom, she won’t play volleyball with me!”
My younger daughter is very athletic, confidant and strong, but wants her older sister’s approval desperately. I think she’ll be waiting a long time for that, but you never know!
I looked at Natalie, who was in front of the mirror, busy twisting all of her thick blonde hair into a bun. Over and over again she pulled it roughly out of its tie to redo it. She recently became concerned with her appearance and spent precious time on her hair. It never looked like she did anything special with it to me, in fact, it always looked messy, but she spent so much time on it that I figured it was the look she wanted. The messy bun. My oldest daughter was now eleven. Scarily close to the age I was when I developed Juvenile Rheumatoid Arthritis.
“Nat?” I said gently. Lately, I have to keep an even tone with no hint of accusation in it at all. “Why won’t you play volleyball with your sister?”
She turned around and looked at me with her cool, blue eyes.
“I told you, Mama, it hurts my hands.”
What?! Did she tell me this? I vaguely remembered her saying her pinky finger hurt and it was swollen when I checked it out, but that was a while ago and now it hurts her hands to play volleyball? Oh my God, I was freaking out.
A memory attacked me and left me breathless. The first two years after my condition became apparent, I could not take part in gym class. The first time I was allowed to participate, the class was in the middle of a volleyball stint. I remembered hitting the ball with the palms of my hands and the stinging sensation that followed. Serving with a fist was impossible. I didn’t want to tell my gym teacher, so I kept up with the pace and acted like nothing was wrong. It left my fingers red, swollen and useless for my next few classes. I couldn’t grip a pen to take notes or concentrate on anything but the agony. I regretted it with everything that was in me, but I continued for the next week playing volleyball like there was nothing wrong with me at all.
After recovering from that memory, my brain flew to all the reasons why Natalie’s fingers would hurt when she played volleyball and I could only think of one. Is this the year my daughter gets arthritis? I began to panic and breathe heavily through my nostrils like I do when I’m in pain.
“Mom, what’s wrong?” Natalie asked.
“Nothing, baby, just tired,” I managed to lie.
She gave me a sideways look that said she does not believe me.
“Let me see your hands,” I said, taking her small, beautiful hands in my own ugly, crooked ones. They were so pretty. Well, except for the dirty, crusty nails, paint peeling off, that never ceases to disgust me. Her long, gorgeous fingers looked great to me. Except the little finger on her left hand was a little larger than the rest.
“How long has this been like this?” I asked her, looking into her cool, blue eyes. It was as if I was staring at the sky on a sunny day. Flecks of gold appeared around her pupils like spots of sunlight through a cloud.
“A long time, Mama, remember I told you?” I could tell she wanted to whine, but she knew I hated it. Eleven means not acting like a baby anymore. She tells me she’s not a kid all the time now.
I sighed deeply, stroking her small pinky finger, feeling for fluid, praying and hoping she wasn’t going to be like me. Please, God, don’t let her be like me.
I bent her finger back and forth, sensing no pain from the look on her face, her little mole-freckle standing out on her ruddy cheek like an island in the sunset. I loved everything about this child and I would be devastated if she were attacked and ravaged by arthritis the way I was as a child. Cut down and stopped cold just when things were getting good. My softball team had just won the championships, I was starting at a new school, making new friends, gathering my group of friends and crushing on a football player who actually liked me back. Natalie was also at a new school this year, making new friends and forming her core group. She was currently crushing on a little football player who liked her, too, and also in the middle of softball playoffs. Such similarities made me feel uncomfortable and I prayed fervently that the stars were not aligning for a terrible downfall. I prayed hard that she would not inherit this horrible condition from me. That she would not be forced to lie in bed, in agony, for almost eight months. It would kill her. I don’t know another girl her age as active as she is. She loves to be outdoors playing any sport, running, or riding her bicycle. She’s always on the go and loves to exercise. She placed first in the girls 10 and under division in our town’s annual 5k road race. This would break her spirit so badly I don’t know if she’d have the strength to go on and make a life out of it the way that I did. I admit it was not easy, in fact, everything is more difficult for someone who lives in chronic pain, but would Nattie have the stamina to push past the pain and still do just about everything she does now? Do I have the strength to teach her? More importantly, can I watch her go through it all?
All of these things passed quickly through my mind, then I remembered the previous weekend when a friend of mine asked me if I played sports as a kid. She knows all about my condition, and has never really asked a lot of questions about it. It’s funny, most of my friends just accept it as part of who I am. I told her that I played soccer and softball and also the flute before I got arthritis and that none of those things were possible anymore after I was afflicted. She looked so sad.
“You must have been devastated,” she said, without pity. That’s why I liked her so much. She never looked at me like I was fragile, or needy. She spoke the truth. It’s refreshing sometimes.
“Yes, I was. I’ll never know if I had the chops to make the varsity team, or the college team. I’ll never know if I could have played with the Boston Pops. Most likely, I wouldn’t, but you never know!” I said, with more optimism than I felt.
Looking at my girls now and all the sports they are involved in and the activities that they like, they are very similar to me. I loved team sports that kept me active and with my friends. I guess it’s time to admit that as Nattie gets closer to the age I was at when I got arthritis, I am getting more and more nervous. How do you tell your child that she’ll never play sports again, most likely never climb a tree, or even run again? I can’t do that.
I rubbed Nattie’s fingers as if could just scrub out the disease and keep it from entering my little girl’s life. Lines of a song by Phish rambled through my head: If I could, I would. But I don’t know how.
You know how parents say things like, ‘I’d rather go through that than my child! Give it to me, I can take it!’? Well, I am already there. I sit on both sides of that track. I’d rather have it any day than watch my daughters suffer. The thing is, I already have it. Since they found a gene for arthritis and it is most likely inherited, I might still have to watch my child go through it all while suffering in silence myself. In a flash, I shift into protective mode.
“You’re going to be just fine!” I say brightly to Natalie and to myself and to Violet, and the puppy, and anyone else who might be around to listen. “I promise you.” I hug her tightly, crush her ribs against my chest, kiss her head, her cheek, and finally, her pinky finger. “I am going to make sure of that.”
I hold her away from me so I can get a good look at her. A gorgeous smile slips between her lips and I somehow feel that together we could fight this. There is still no cure, but the medicines are purely way better than anything they had in the early eighties for me to take. I have one of the best doctors in Massachusetts but there are also now Pediatric Rheumatologists, believe it, or not! There is a good one at Boston’s Children’s Hospital. Yes, I’ve done a little research but I am not about to go get all glum about something that hasn’t even happened yet. And no, I will not be getting my daughters tested for the gene. If it happens, I’ll deal with it but I will not know about it in advance, always waiting for it to happen. I don’t think I could take it if I really knew that the potential was there. I could not.
Natalie slips out of my grasp. “C’mon, Violet, I’ll play volleyball with you.” She turns back to me and smiles a silly little grin that tells me she thinks we are in cahoots about something. I flash the same smile back at her and she and her sister disappear out back, leaving me to wonder how I got so lucky.
I watched them from the kitchen window for a little while, still smiling, as Nattie smacked the ball over the net, whooping with joy, no hint of pain.

After graduating from college in May of 1994, Robert and I quit our jobs and decided to take some time that summer just for ourselves. Then we would look for our permanent jobs. Even though I had a car and insurance payments, and a small college loan payment each month, I’d saved a lot of money over the past year, plus I was still living at home, so I felt like I could go a little while without a paycheck. I hadn’t gone a week without a paycheck since I was eight years old, before I got a paper route. I’ve always had a job. I wasn’t nervous, though. The early nineties were not at all like what it is like now. There were plenty of jobs available.
We spent a week up in Vermont that summer with some friends to see Phish play on Sugarloaf Mountain and to also catch the Grateful Dead in Highgate. What a week! Our friends knew someone who had a place up there and it was beautiful. She kept a cute vegetable garden off to the side of the yard, and there was a nearby lake where we swam when it got exceptionally hot up on that hill in the afternoon. Robert fell in love with the area, its remoteness, and he claimed he wanted to live up there some day.
“It’s too cold up here,“ I told him with a sly smile, even though I’d follow him anywhere. But I also knew Southern Massachusetts could be brutal in winter and I really didn’t want to find out just how much colder it is up near Burlington.
“We could go anywhere!“ Robert announced, and I guess we both knew we were going to be together for the rest of our lives. We barely argued, always had fun, liked being together, craved being together, and it was easy. No games were played. For the first time in my love life, it was all straight up. I had the real deal. It was almost preposterous!
We got home from vacation tanned and relaxed and we both found jobs in Boston almost immediately. My brother was working for a fire alarm company and got Robert a job there inspecting systems in just about every hospital, college and school in Boston. I found work through the good, old Boston Globe Want Ads, and landed one for a company who brought supplies and commodities to underdeveloped areas like Cambodia and Nigeria. I was assigned Cairo, Egypt. It involved a lot of tedious paperwork and long nights perfecting documents for Federal Aid. I hated it and it was as far from the type of creative writing I wanted to do as I could possibly get. But it paid well and I was saving a good chunk of money each week. I was also getting key experience that would help me in my next career move. Less than a year later, I got a job in Park Plaza, with a consulting firm. I rubbed bonks with a bunch of Harvard Business School graduates and I had never known such excess! People actually lived like this?! The nannies and the opera, season tickets to whatever you like, dinner and drinks at the Country Clubs, and loaded jets ready to take you anywhere you wanted to go. Some of the partners at the firm even flew their own planes! I felt like I lived in two different worlds, one at work, and one at home with Robert and our families, which were very middle class. We grew up in much the same way, with hand-me-downs and peanut butter and jelly sandwiches. Our moms stayed home and our dads worked two jobs. My family had twice the kids his did, but it didn’t seem to matter. They were in the same murky part of the Charles River that we were.
Robert and I had never tasted some of the foods offered to us at the social functions I had to attend as part of my job. These parties were just ridiculous! Tables were mounded with food: turkeys, hams, lobsters and mussels, oysters, turtle soup, bear and deer meat, goose, scallops wrapped in bacon and rich, strong coffee served with chocolate swizzle sticks. The pastries, cakes, Crème Brule, cherry cheesecakes were such a temptation that I gained weight that year and two dress sizes. I should say suit sizes, which was what I had to wear every day of the week with heels and nylons. Serious stuff for a twenty two year old jeans and T shirt girl. But I found it very interesting.
“It’s almost like an anthropology study,” I’d tell my friends over beers in the evenings I didn’t have to work or attend an event. They would smirk at the rips in my jeans and my Birkenstock sandals, then glance at the mound of dry cleaning still in the plastic draped over the sofa.
Robert and I enjoyed ourselves at every work function that year, and we made some very good friends there that we remained close with for years after I left that company. We began to want to be together all the time. I wanted to wake up with him and have morning coffee with him and greet him at our own home at the end of a long day. By then, I was already making almost twice the money that Robert made. We knew we could save a ton of cash if we found a place near town and moved in together, but we didn’t know how to tell our traditionally Catholic families. We were sick of trying to steal time alone, and we needed our own space to be together. We were too poor for a wedding just yet, but none of that mattered to either of us. We hadn’t muttered those words yet, even in theory.
When Robert told his parents that we’d found a little apartment in Watertown, I chose not to be there. I knew they were angry, and his grandmother actually cried! But we were both twenty-four by then and we’d had enough of living with our parents. We chose Watertown because it was about 10 minutes out of Boston and it was very close to Robert’s office in Newton, even though he really spent all day on the road in the twisting streets of the city. We wanted to spend our evenings together and currently that was impossible because we both got home late and then someone had to drive 30 minutes more to see the other one. It was brutal. We never saw each other until the weekend but when we moved in with each other, we were together every night, watching TV together and waking up together in the morning. I wasn’t looking for anything more than that right then so when, in December, he proposed to me, no one was more surprised I was. We began to save all of our extra money for our wedding the following year. My brother also got engaged to his girlfriend. I liked her a lot and thought they’d be good together. They both liked sports and seemed to have the same type of personality. They’d been together since before my sister’s wedding, the year I met Robert.
We flipped the calendar to January, 1995, the year Dwight and I would both be married and my parents would finally have the big, old Garrison Colonial to themselves. But Dad took a turn for the worse.
He’d had his first stroke when I was eleven and from there he’d had a lot of health issues. He had several mild heart attacks, then open heart surgery and it didn’t look good. He was weak and skinny and walking with two canes. His legs were numb from the diabetes that had already claimed two toes to gangrene, and the previous winter he had to be put on a breathing machine for a few weeks to give his body and heart a rest. We didn’t know what would happen.
The doctors told us he’d never breathe on his own again, and we finally made the decision to remove the tube. It was excruciating. We stood around the door to his “room,” a small cubicle in the Intensive Care Unit, not knowing if we should start crying or not. Was it over? I remember looking away as they pulled out the tube, Robert’s hand was pressed against my shoulder, not quite holding me, but more holding on to me. The next few minutes was like watching golf on TV. Something had to happen soon, because I couldn’t just stand there and watch this. Dad took one labored breath, and the doctor leaned in to Mom to say something. Her mouth was a firm line. It was the first time I thought of her eyes as beady. She was looking sadly, but not quite fondly at Dad. Dad continued to breathe. It looked painful, but he wasn’t giving up. His brittle chest heaved up and down but his eyes never opened.
He kept on breathing through the night. And the next day. They eventually sent Mom home, telling her to stay near the phone. It couldn’t be long. She did, but wasn‘t happy about it. Suppose he died in the middle of the night, alone, and she would have to come all the way back into town? She couldn’t decide which was worse; losing Dad, or driving at night.
Dad stunned the doctors and stubbornly made it through the week. He eventually regained consciousness and vehemently ordered the staff and the doctors, and anyone who would listen, to never put that tube down his throat again. He would take his chances, and now that we knew that, our decisions became a little bit easier, even if our minds didn’t. We were going to have to stand there and watch him die next time instead. It was our worst fear. Dad wasn’t planning on giving us the opportunity to make any more decisions like that, though, since he thought he was going to live forever. It almost seemed like it when we wheeled him out of the hospital grinning ear to ear. What were we thinking? He always made some miraculous recovery.
Dad wasn’t drinking because he couldn’t drive anymore. His body was losing steam. It had been through so much. My mother refused to go out and buy it for him, so he was stuck in the house, barely able to get around, and completely sober. My parents were enjoying a quiet life of retirement. Dad started to do some hobbies again, so he made birdhouses in the cellar and Ma would bring him down a glass of iced coffee once in a while. I came home to do my laundry every weekend because we still didn’t have a washer and dryer, and I spent time with my mom, and my nephews if they happened to be visiting. My parents’ relationship seemed weird and truly different from anything I’d ever known it to be. But it was nice, I guess.
As summer began, Dad was back in the hospital again. He wasn’t doing well, and as I turned on to the Mass Pike, toward Framingham, I remembered thinking that this could be the last time I saw him. It wasn’t the first time I’d had that thought, so when it happened, I forgot to remember it and now I can’t remember the last time I did see him or what it was I said to him. It didn’t matter, because by the time Dad died, he didn’t even know who I was when I was there, and he was so doped up on Morphine that he thought there were spiders on the walls and a white dog laying on his bed.
I begged him to hang-on until my wedding, which was later on that year, in November. He promised he would be there, and he was. But the father I have in my wedding album is not the man I want to remember. He’s a skeleton, weighing no more that one hundred pounds, a scary, skeletal grin on his face.
He wasn’t happy that day. Oh, maybe for me and for Robert, but he didn’t feel good, and couldn’t do any of the things that the father normally does. My oldest brother gave me away and danced with me because the circulation was getting so bad in Dad’s legs.
At least Dad was there, everyone kept telling me, but this was not the way he would have wanted it to be, drinking beer and dancing the Russian folk dances he and my Uncle used to do after a few shots. He would have been polka dancing with his sister and with Ma. He would have been toasting his baby and her wonderful groom. It would have been great. But cigarettes and beer destroyed my father’s body. When I think about how lethal those two things are and how they are still legal in this country when a lot of other things aren’t, it makes my blood boil.
Dad was in the hospital when Rob and I returned from our honeymoon, and passed away two months later.
The night of his wake was brutal. Robert could barely hold me up. I was exhausted from crying, and there was no end to the people who streamed through the funeral home. I couldn’t wait to get home. Well, to my mother’s house. I needed to rip off my bra and nylons. I didn’t want to leave Ma alone, but my brothers and I wanted to meet at the bar down the street. She looked like she could use some time alone, anyway, so I kissed her and told her that Robert and I would be spending the night, so we’d see her later on, if she was still up. She didn’t look pleased that her children chose to go to a bar, the bane of her existence, after their father’s wake, but she didn’t say anything. She just pressed her lips shut and stared at us with her melted chocolate eyes.
We chose Pete’s Bluebird in the center of Bellingham. We were practically the only ones there. We toasted to Dad and sang a Polka familiar to all of us in honor of his memory:

In Heaven, there is no beer.
That’s why we drink it here.
And when we’re gone from here
Our friends will be drinking all the beer!
Everybody!

It was Dad’s favorite. I used to stand on the tops of his feet and he’d swing me around and around in the parlor. It was a fine tribute. A good-bye we knew he’d understand.
Now I have two daughters of my own and I sometimes see the glint of Dad’s grin in one of them, or his stern look of reproof in the other. They would really crack him up, I think. I wonder, if he’d taken better care of himself and was still here, what kind of relationship he’d have with my daughters? Would he teach them how to transplant tomatoes plants the way he taught me? Or would I have beaten him to it? Would I even have cultivated this love of gardening if I didn’t move back to the same yard he gardened in? If, for example, he was still here providing vegetables and fruit for my family, instead of me. Who knows? All I know is my daughters only have good memories I’ve shard of me and my dad. There’s no reason to shatter their image of him with the bad ones. They have a great dad who is involved in lives every single day. I’ve given them that, at least.

Rose, age 9

My mother is beautiful. She’ll never not be.
She makes me happy. She’s as sweet as a bumblebee.

My mom is really grand. She taught me how to talk.
Another helpful thing she did was teach me how to walk.

She takes me swimming. We have so much fun.
She is the best. We are always in the sun.

She helps me with my homework. She’s really bright.
I don’t need to worry. I’ll know she’s always right.

I love my mom so much! I would give her anything.
She’s the best part of me. I can tell her everything.

Happy Mother’s Day.

“I want to come home!” I squeaked.
Ma was so patient. I was seven years old and in the hospital because of an infection I’d developed over the winter. As a small child, I suffered through severe food and outdoor allergies that gave me the worst eczema some of these Providence doctors had ever seen. I was already showing signs of a serious auto-immune disorder which would eventually become Juvenile Rheumatoid Arthritis coupled with Krohn’s disease, or Colitis, depending on who you asked. My mother had called the hospital that morning to say that she couldn’t come and get me as scheduled that day. I was angry and upset, naturally, but it wasn’t her fault.
A nurse pushed my door open and marched in. She took my pulse and gave me a sympathetic look. I didn’t look at her.
Ma was talking and I was having trouble keeping the phone up to my ear because my elbow was so stiff.
“When can I come home?” I asked weakly.
“The storm is over now,” Ma answered, and I could tell from her voice that she was extremely tired. “Dad thinks the roads will be open by Friday the latest. Maybe sooner.”
I counted out how many days until Friday and started to sob, unable to control myself. The nurse walked briskly out of the room.
“Honey, Honey, calm down now,” Ma said soothingly. “I know it seems like a long time, but honey, we can’t even get out of the house right now. The snow is over the roof of the porch!”
“I don’t care, I don’t care, I don’t care!” I wailed. I kicked my feet under the blanket and threw a full, heartbreaking fit.
I knew the snow was record-breaking. The nurses kept trying to show me the television and wanted to get me excited about all of the snow. They kept calling it the “Blizzard of ‘78.” My brother and sister weren’t going to have school all week, and Ma told me that all the men on my street had to shovel a path up to the package store to get food and supplies. Ma told me all about it, over the phone, but I didn’t care. I was thinking about another long night in this bed, this room. I’d already been there a week and on the day I was supposed to go home, the storm smothered New England like a blanket and it was like everything was frozen in time. No one could go anywhere or do anything. People were trapped in their cars on the highway coming home from work because the storm hit so quickly. It snowed for a day and a half, wind gusts were scary and the drifts of snow were higher than some housetops. Still, from the fourth floor of Saint Joseph’s hospital, it was hard to get excited about it. I felt like I was just watching another show on TV about a blizzard. So what? I kept thinking. All I wanted was my mother.
The nurse came back in and gave me a pill to swallow.
“I want you to just fall asleep and we’ll see what happens in the morning,” Ma said, her tone of voice getting lower. I was getting drowsy. I cradled the phone in the crook of my arm so I could hear Ma talking and still slide further down into the pillow. My eyes were closing.
“Say your prayers and go to sleep,” I heard Ma say as the nurse took the phone from me and put it back on its hook. She pulled the covers up over my shoulders and I turned onto my side. I fell asleep.
Ma called me the next day, and every long day after that, and I had some dolls and Blankie with me, but I wanted to go home. I was lonely and bored. I think I was the only kid left that hadn’t gone home yet because I lived in Massachusetts and the state lines had been closed. The only friend I’d made here was already gone. She got lucky and was released before the storm hit. I wasn’t at my local hospital in Massachusetts because there was a specialist here who was treating me for the infection and wanted to take over my eczema case as well.
A few more days passed. The snow was deep. Memere had sent me a card every day I was there, before the storm hit. Since then, I got zilch . . . no mail, no visitors, no nothing.
Finally, toward the end of the week, a nurse came into my room to tell me that the Army would be driving me to my Aunt’s house in Riverside. I was so excited I could hardly wait. She wrapped me in blankets, and because I had no clothes, I wore pajamas, but who cared? I missed Ma so much!
There were other kids in the Army truck, too, even though I hadn’t seen anyone on my ward. There wasn’t enough room for everyone, so I had to sit on a soldier’s lap. It was the closest I had ever come to a black man in my life, and I remembered my brother Dwight’s first day of school. When he got home, he told us about his teacher.
“Ma, she’s black!” He said, his blue eyes open about as far as they could go.
“That’s okay, honey,” she said, as if she wasn’t really paying attention, a little sigh escaping her as she helped him take off his jacket.
“But, Ma, she’s all black!” He said, pointing to his arms and legs. My mother just chuckled a little.
“Oh, honey!“ She said.
My street, my world, was not diverse. Everyone I knew was white and Catholic. Well, almost everyone, and the pure white bread town we lived in never would diversify that much, for some reason. It was weird, really. Toward the late seventies there were a few couples of mixed races in our neighborhood, but one family never had kids and the other’s kids were all blonde! It was as if it was in the water. Or maybe it came from the Charles River. Whatever it was, Dwight and I didn’t see a lot of people who weren’t white when we were little and I guess we didn’t think much about it. In fourth grade I met a new friend, Harriet, who lived a few streets down from me. We were inseparable and I loved her like a sister. I’ll never forget the day she spent at my house and I later heard my father tell my brother that Harriet was black.
“She is not!” I said, not sure if it was a bad thing, or not. I’d never really noticed before and I had to think hard about whether Harriet was, actually, black, or not. I kept coming back to, “Does it matter?”
“Bum, she is, too,” Dad said, smiling.
“But that’s okay, right?” I asked.
My brother ruffled my hair. “Of course it is, Bum.” He made a point to give Dad a dirty look, though, and it took me a long time to figure out that Dad was prejudiced sometimes. I couldn’t figure out why, though. Black people were just like everybody else, right? Ma used to say that I got so tanned in summertime that I must be half black and it was never in a mean way so I figured it was fine. I remained friends with Harriet until she went to a private high school and I never worried about what my dad thought. We had a lot of fights about race when I became a teenager, though, and for such a smart guy, his rants really disappointed me sometimes. When I complained to Ma that he was so intolerant, she always said that he grew up in a much different environment than we did. His mother died when he was young and his father spoke no English. He was raised in the city, in Providence, and there were gangs, even back then. He was Russian and was often tormented about being a “commie.” Even I had received a little of that backlash. When I was in fifth grade some kids were asking each other about their nationalities and when I said half French, half Russian, kids started calling me that name almost immediately. I remember coming home from school all confused.
“What’s a commie?“ I’d asked my mother.
“Where’d you hear that?” She asked.
“Some kids at school called me that today.“
“Don’t let your father hear that,” she said, and that was it. No none ever told me what it meant.
I knew Dad had been a tough, city kid, but I knew nothing about that kind of life. The suburbs were my home and I wondered later if that was Dad’s intention all along, to get his kids out of the city and to give them a different kind of life. I never got a chance to ask him any of that, though. Especially not the day I got home from the hospital the week of the Blizzard.
When the truck pulled into my aunt and uncle’s driveway on Robin Hood Drive, Uncle Mark came out to shake hands with the officers and to carry me into the house, even though I was too big to be carried. I only had my slippers on and it was icy and snowy. In fact, I couldn’t believe all the snow once I finally saw it up close and not from a fourth floor window. I couldn‘t see anything inside the army vehicle the whole way there.
Uncle Mark called Dad to say he had me. He knew a way we could go to get to our house to avoid the road blocks set up at the state lines. I sat in the back of his blue Bonneville, wearing one of my cousin’s winter coats, and waited to be reunited with my family.
As we drove down my street, I couldn’t believe how high the snow was on either side of the road. They weren’t lying when they said there’d been a blizzard.
“This is nothing! You should’ve seen it last week,” Uncle Mark told me. “It was almost covering the whole porch! Your Dad said they couldn’t see any cars at all!” I didn’t believe him.
As we pulled into the driveway, I could see my Dad coming down the porch steps in his slippers and a white and blue, short sleeved striped shirt. He opened my door and pulled me out, carrying me into the house. He hugged me and kissed me so many times. It felt good to know that I was missed, and that I was finally home.
“We missed you, Bum,” he said, and even though I knew he’d probably had a couple of beers already that day, it didn’t matter. I was home!
Ma was waiting for me at the door and held me tight as soon as Dad put me down on the porch. I never wanted to let her go. I smelled her shoulder and neck, pressing my nose and lips so hard against her, afraid she’d let me go, or this was a dream. Jason carried me into the kitchen and lifted me onto the counter, where everyone looked at me.
My whole family was there, and a few neighbors. Ma’s friend next door baked a chocolate cake for Mom’s birthday, not knowing I’d be home. We all had a piece to celebrate, and talked and laughed until it got dark and all the neighbors went home. Ma let me stay up and watch Marcus Welby, M.D. with her, and rocked me in her rocking chair all night like she used to when I was a baby and never slept.
When it was time for bed, Ma tucked my Blankie around my shoulders.
“Ma, can I go out and play in the snow tomorrow?” I whispered, hugging her neck and smelling her robe.
“Of course. You can do whatever you want!” She looked so happy. She hardly ever looked like that.
“Did you miss me?” I asked her, knowing by how tight she held me that she did.
“Did I miss you? What a silly thing to ask!” She hugged me tight, kissed me twice on the lips, and said, “Now say your prayers and go to sleep.” I rolled over and began to pray but I think I fell asleep before I even really started.

As we drove to Brigham and Women’s Hospital on a cool March morning, I wasn’t feeling nervous or anxious about my hip replacement surgery. My mind was calm. I wasn’t having any thoughts, really, just a serene feeling. I wanted to get it done, over, out of the way. My husband had a look of serious resignation on his face. He didn’t speak, so neither did I. I was too tired. We had to be there at seven in the morning which meant getting up and taking showers at five-fifteen and leaving the house by six to drive into Boston. My sister and her husband were taking the girls back to their house in Rhode Island for a few days so I could get through the surgery and come home without having to worry about them. They had rented a minivan, since they had a five year old and a seven year old and all the car seats weren’t going to fit in the back of my sister’s old Buick. I was very lucky to have her, as well as my mother, my best friends, my sister-in-law and my neighbors. They were all willing to help out and take the kids on different days so that I would have a smooth recovery. My rheumatologist had made it pretty clear that I needed a whole system of people in place to help, as well as a schedule for the blood work and physical therapy sessions I would have three times a week.
I could not eat before the surgery, that wasn’t an issue. I didn‘t have any type of appetite at all, but I really could have used a cup of coffee. I’m not good in the morning. Not just because my arthritis makes everything more difficult, from removing the plastic lid off of the gallon jug of milk to buttoning my jeans, but because I am a night owl by nature, I suffer every morning because of it. I usually stayed up way too late then regretted it later. You know those Hollywood actors who always say, “don’t have any regrets!” Well, I have tons of them, and I always thought that was normal. If you don’t have regrets, you probably played it safe your whole life and never took any chances. Regrets are healthy, right?
Robert raised his travel mug to his lips as he downshifted gears to get off the Mass Pike. He pulled up to the toll booth to give the attendant his ticket he glanced over at me and formed his lips into a pressed smile.
“How you doin, hon?” He asked, rubbing my thigh. The attendant gave him his change and he sped off before I said anything. I sighed and looked out the window at the gray buildings blocking the sun.
“I don’t know,” I answered glumly.
It wasn’t long before we were spinning around the loop driveway at the Brigham. Robert tossed the keys to the parking valet and told him we’d be here all day.
I was limping pretty good by the time we were seated and waiting for me to be called. I looked at Robert. His light brown hair had gotten a gold tint while we were in Florida the week before. The bridge of his nose was sunburned. For a brief second I thought maybe this was the last time I’d ever see him. My girls’ faces flashed through my mind. When the nurse called my name, Robert wrapped his arms around me and gave me a quick smooch on the lips.
“Good luck. I’ll be right here waiting for you.”
I couldn’t speak. There was a knot in my throat. I nodded and looked up at him. I wondered if he could see the tears in my eyes.
It was a bustle of activity after that. I changed into the dreaded johnnie, a nurse took my blood pressure and hooked a clip to my finger. I was directed to lay in a bed in a large room filled with twenty or so other beds with people just like me, waiting to go into surgery.
I tried not to look around too much and wonder what the little girl with the dark ringlets was having done, or the young guy nervously shaking his foot when the nurse pulled the curtains around my bed and left me there.
A few minutes later I heard, “Knock, knock,” and a young man with straight, black hair and ruddy, red cheeks poked his head through a separation in the curtain.
“I’m Dr. So-and-So,” he said so quickly I didn’t catch his name, “your friendly anesthesiologist. Any final questions?” He peered at me as if he knew a secret that I wasn’t going to find out until it was too late.
I shook my head. Would I ever be able to speak again?
Three more doctors who were assisting in the surgery came in to write their initials in permanent marker on my left thigh.
“Just in case!” One of them chuckled., as if that would be really funny if they replaced the wrong hip.
“Ho there, young lady!” My surgeon came storming through the curtain causing a stiff breeze to fill my area. I shivered. “All right then, this is fun, innit?”
His accent was starting to annoy me. He signed my leg in huge, flowering cursive. “I’ll see you when you wake up, then!” He flew off.
Someone inserted my IV. I hated it in my hand so I was glad that this one went into my arm, instead. I could sense the anesthesiologist behind me, adjusting my tubes and the machine next to my bed.
“You’re just going to fall asleep gently now,” he said soothingly.
I started feeling like I was moving and opened my eyes. I was getting awfully drowsy, and feeling no pain at all. This was great. I was being wheeled into a set of push doors, everything was white. I repeated the Hail Mary as many times as I could, the words getting all messed up in my head.
“Please just let me see my girls again, God,” I prayed, and that’s all I remember.

I wasn’t really awake yet but I knew the surgery was over because of the excruciating pain. I was drifting in and out of consciousness and barely remember seeing Robert’s face floating over me in the recovery area.
I don’t know how much time later I heard voices near my bed.
“I know she’s been through a lot but she hasn’t pressed the button, yet,” someone whispered.
“Honey! You have to keep pressing the button for your pain meds!” Another voice nearly yelled. I kept my eyes shut. I didn’t think they were talking to me.
“Maybe she doesn’t need it. She’s no stranger to pain,” a different voice said.
“She needs to push that button,” the first voice said. I felt someone take something from my hand then put it back.
Were they talking to me?

I opened my eyes to a new scene. I was in a regular room now and the pain screamed from my hip and thigh.
“Oh, my God,” I moaned. “Ohhh, my God, help me.”
Someone said something in Spanish. I turned my head and a little old lady with lines of gray through her long, dark hair was sitting in the corner of my room. She was wearing a johnnie under a thick, brown sweater, so I assumed she was my roommate. She made a motion like someone on Jeopardy pushing their button to answer a question. I looked down at the device in my hand. I pressed the button. Nothing happened. The pain was washing over me so that it was all I could think about. I started to weep, my shoulders shaking.
“No. No, no, no, no cry,” she said.
“It hurts,” I wailed, weeping openly now, bawling like a baby. A nurse shuffled into the room.
“The pain bad, honey?” She adjusted something on my monitor and took my pulse. I heard moaning from the hallway. Other people were in pain, too. I heard a loud scream. Great, I thought.
“Oh, my God,” I said simply.
“You’re a wonder, little girl,” she said, even though I was nearly thirty-three. “You didn’t press that button all afternoon. I came in and pushed it for you a couple of times but we were starting to worry about you getting behind the pain and not being able to get control of it.”
At the time, I didn‘t feel grateful that she‘d tried to help me. I was in agony. “I think I am past that point,” I said stiffly.
“You can press the button every minute but it won’t release any medication if you try to do it sooner than that. Try to keep a steady flow of medicine going now to see if we can catch up and get you feeling better.”
“Okay,” I mumbled. “Where’s my husband?”
“He’s around. He’s been in and out but we’ve been having trouble coming out of the anesthesia.”
That was nothing new. It happened every time I went under. One time I was getting my wisdom teeth removed and they practically kicked me out of the recovery room I was taking so long to come out of it.
“We have to get her out of here. We have other patients waiting,” a nurse had kept saying to my distraught mother who couldn’t carry me, for Pete’s sake.
“That happens a lot,” I said to the nurse now. “Can I get something else for the pain?”
“No, honey, I’m afraid not. We‘re all maxed out.” Why did she keep saying “we?” As far as I could see, she was fine. I was the one hooked up to machines, leg in the air, crying from agony.
Tears leaked from my eyes and I stared up at the ceiling. I wanted Robert. My left leg was in a sling and I couldn’t move off of my back, not that I wanted to, I felt so horrible. I had something attached to the area right below my hip, some sort of metal box. It was very uncomfortable. My IV was in the other arm, and I was starting to feel a weird pressure there, just where the needle was inserted.
Finally, Robert came in.
“Hey,” he said softly, grabbing my hand.
I said nothing while the tears just kept sliding down my cheeks.
“Is it bad?” He asked.
I nodded.
“You weren’t pressing the button, Hon,” he said.
“I don’t remember anyone telling me beforehand that this is what it was going to be like. I thought I’d have a morphine drip at least until I was awake!” I was in hysterics now. If I was watching Robert go through this, I’d be like Shirley MacLaine in Terms of Endearment, when her daughter was dying of cancer and in so much pain that her mother ran around the nurses station yelling, “GIVE HER THE SHOT NOW!! GIVE HER THE SHOT!”
But Robert wasn’t dramatic, ever. He was cautious and slow to act most of the time, while my brain shot in twenty-five different directions at the same time and raced through several options before Robert had even thought of one. We were just different that way, but not in a bad way. Too many times I wished I had Robert‘s sense of caution and I bet he also wished he had the ability to think more quickly, you never know.
“You were in surgery over eight hours!” Robert said in amazement. I felt really badly for him. What did he do all that time? Worry himself sick?
“I called your mom and told her you were out and everything looked good.”
I tried to focus my mind on what he was saying but all I could hear was the pain. I pressed the button again as soon as the second hand swept around the 12 of the huge clock that was hanging on the wall right in front of my bed.
“I’m going to go in to work tomorrow then come straight here afterward,” he said. “There’s no point in me taking another day off.”
Robert had one of the most stellar work ethics I’d ever encountered and I come from a long line of hard workers. He never missed a day, often going the whole year with all of his sick time intact. In the old days, he got a big, fat check at the end of the year for it, but that no longer happens. Everything had tightened in a bad economy and the benefits we used to enjoy crumbled like an Oreo cookie, slowly, year after year until there was barely anything left and we were dishing out $60 co-payments for regular office visits to the doctor. We were definitely frightened of what the hospital bills would look like after this little three day vacation, but we would figure it out, like we always did.
Suddenly there was a commotion at the door. My friend, Raquel, her husband, and their two kids were here to see me! In reality, her husband was Robert’s good friend from high school and I had met Raquel through him, but we became friends immediately and now the boys never saw each other unless it was Raquel and me getting them together. We chatted on the phone a lot and got together as much as we could with the kids. We had a lot in common. They lived in Quincy so it was no sweat for them to pop into the city to see me and I vaguely remembered them saying they were going to come last time we saw them, but I didn’t think much of it at the time. Now, as they stood in the doorway, I kept blinking as if they were a mirage.
“How’s she doing?” Raquel asked.
I tried to smile.
“The pain’s bad?” She asked me, now. I nodded. She looked so good, so freshly showered and made-up.
As if reading my thoughts she looked into my eyes, “You look really good. Why are you so tan?” I knew she was trying to distract me. Raquel had been through a lot watching her own mother die slowly from bone cancer. Raquel knew a little bit about pain, but she knew more about Robert’s kind of pain than mine. She knew what it was like to stand by and watch someone you love suffer and be helpless to fix it. Robert and I bantered about it a lot, who had it worse, the victim or the witness?
“We just got back from Florida,” Robert answered for me. I was having trouble keeping my emotions straight. I don’t know if it was the morphine, or the trauma I’d just been through, but I couldn’t keep from weeping.
“Nice. Everyone should take a vacation right before surgery!” Raquel laughed loudly.
The two kids stared at me as if I was a circus sideshow, eyes bugged, mouths open. I wondered what they were thinking? When they started crawling all over the floor and getting rowdy, Raquel said that was their cue and gave me a quick peck on the cheek. She then kissed Robert, her husband kissed me, and they left in the same magical way as they had appeared.
“That was nice,” Robert said, pulling a chair up to my bedside and taking my hand. I nodded, still not trusting myself to talk.
“Hey!” I heard a booming, familiar voice and suddenly my brother, Jason and his wife were in my room, kissing me, hugging Robert, sliding chairs up to the beside.
“How are ya, little one?” My brother asked me. Lately I’d been noticing how much we look alike. We both looked like our dad.
“I’m alright,” I said weakly. I pressed the button again.
“Morphine?” My sister-in-law asked.
“Yeah, and it’s not even touching it.”
Her eyes got sad and she nodded. She was recently diagnosed with Fibromylagia, a form of arthritis, and I knew she was suffering terribly.
They lived in Lynn, where she’d grown up. I loved her like a sister. She was so down to earth and so cool. I couldn’t figure out how my brother had landed her sometimes, but that’s because he probably didn’t show me that side. The side he kept for her only. I once heard her tell my mother that he gets up before her in the morning, makes coffee, and brings her a cup in bed before he showers for work. I can’t picture him doing that because for about ten years every morning he would sit at the dining room table ordering from my mother like she was a waitress.
“Ma, make me a waffle and some chocolate milk,” he would say, and she would hop right to it. Now he was serving his wife in bed? Wow, love really does change a person.
They didn’t stay long. I was getting really tired and visiting hours were nearly over. I didn’t want Robert to leave, and I was starting to get anxious about having to spend the night there, alone, with my pain.
Robert didn’t linger with his goodbyes. I could tell it was hard for him to leave me.
I turned on the TV and began the process of getting through the night. When I asked the night nurse for some more pain killers, they sent in a priest. That’s a different story for another blog. (See Pain in the Ash Wednesday).

Twice somewhere between two and five o’clock in the morning I rang the nurse’s buzzer to ask for more pain medication. I was denied both times and told to keep pushing the button. How are you supposed to sleep if you need to keep pushing the button, is what I wanted to know? It didn’t make any sense to me at all and the pain was not letting up. It’s very hard to describe. Imagine someone taking a circular saw to your hip and sawing through all the muscle and bone. Then a huge mallet is used to crush the hip bones to remove them. A metal rod is jammed down through a hole that was drilled through your thigh bone in order to connect the plastic and metal hip to your leg. Yes, that is what happens. I truly was the Bionic Woman now.
I found out after breakfast that the device hooked up to my side took care of all the bleeding and fluids that seep from the six inch scar on my hip. There were no huge mounds of bandages or anything, just two little wires inserted into a space about one inch from my wound that somehow drew all the yuck out of the sore and into the box. From time to time, someone would come and flush it out because it was getting too full. It was miraculous, this new technology. I couldn’t believe how good the wound looked. I mean it was pink, raw and deep, and the black stitches weren’t pretty or anything, but it wasn’t as bad as I thought it would be.
The surgeon came in to make sure I was okay and I told him the pain medication was not enough. He told me he’d send the Pain Specialist in to see me this afternoon. The Pain Specialist? It sounded like a bad action movie.
Just when I was starting to wonder how I’d pass the morning, a little boy came into my room and removed my chart from the end of the bed. He started reading and his eyebrows shot up and our eyes met.
“Hi,” I said.
“Hello?”
I nodded.
“I’m your in-house physical therapist, David.”
I just looked at him. What was he, twelve? I mean, really, this kid was old enough to be a physical therapist? I didn’t think so.
“You’re really young to be having this surgery,” he said, as if he was reading my thoughts about him. “Were you injured?”
I sighed. “No, I’ve had Juvenile Rheumatoid Arthritis for over twenty years. There was no cartilage left in my hip,” I said, bored with this conversation.
He bit his lip. I looked for braces on his teeth but found none.
“Okay,” he said, as if he finally believed it. Huh. He was questioning my age. That was rich. “Well, you’re going to be walking before you can get out of here.” He moved to the side of my bed, put the metal railing down, and removed the leg from its sling. He held it as he brought it down to the bed. It didn’t feel like mine. There was no muscle to help me make it move.
“Does that hurt?” He asked, looking at me.
“No, it’s a relief, actually,” I said.
“I’m going to swing your legs over the side of the bed now,” he said gently. I nodded.
“How are you doing, dizzy, or anything?”
“No, I’m okay,” I said.
“I just want you to try standing today, we won’t do anything else.”
“Yup,” I said, a little doubtful. I couldn’t believe I would be walking when I got out of here.
He held me under my arms and supported my weight so that I could get into a standing position.
“Very good,” he said, and I felt like maybe standing the day after total hip replacement was very good. It was awesome., in fact.
“Let’s try it again,” he said, gently placing me back on the bed. “Less me, more you this time,” he coaxed. I guess I was starting to like David. Even though he was a child.
I grabbed his arms instead of him taking mine, and I used my pure will power to heave myself up and onto my feet. Agony shot through my leg.
“Oh!” I yelled.
“Okay, let me help now,” he said, gently placing me back on the bed.
“God. What are you? A buck ten, if that?” He said. Yeah, right. He was delusional. I just gave birth eleven months ago.
“No, I’m afraid I’m much more than that,” I said, laughing, but now I knew I definitely liked David and I wouldn’t mind him coming in a couple of times a day after that.
“I’m going to have you weighed later,” he laughed.
“You wouldn’t dare! I just had a kid!” I said.
He did a double take.
“You did? Man!”
“It’s been a really tough year,” I said, trying to force the hospital stay when I was pregnant with Violet from my mind. David made a pout face.
“Waaah!” He teased. I had to smile. He had no sympathy. I liked that. I much prefer someone telling me to get off my ass than looking at me with pity and thinking I’m going to break.
“You’re going to do great, ya know,” he said, making notes in my chart. “You might think that it’s going to be forever before you can do anything, but you’re wrong. I see it in you. You’re going to chase after your kid by this summer. And that is a promise,” he said, as he was walking around to sit on the side of my bed. When the bed leaned, my hip wailed with pain again.
“Kids,” I corrected him. “I have two little girls,” I said with pride. “They are two and eleven months old.”
David shook his head. I knew what he was thinking. What everyone else was thinking. Why did I have two kids when I knew I had this awful disease?
To my surprise, David said, “That is fantastic. You are really something.”
I thought it was crazy to think that just because you have a few limitations you can’t have what everyone else has, what everyone else takes advantage of having. It wasn’t odd to want a family, a couple of kids and a dog running around the yard, but what I was coming to understand was, not a lot of people were doing it with arthritis. That didn’t come until later, when your kids are taking care of you.
“I have a great husband. And a whole lot of help from my sister, mom and friends. I’m very blessed.”
He smiled. “Tomorrow, we are going to take three steps. I’m thinking you’re getting your IV out this afternoon and they will start giving you Percocet by mouth. I am going to order your pain meds to be taken about twenty minutes or so before our sessions so that you won’t have so much pain during and especially after the session. In two days time, you will be going up and down stairs, so we have a lot of work to do. Are you ready?” He stood up.
“Yes,” I said. He shook my hand. “David?” He turned around with a wry smile still on his lips. “Thank you so much,” I whispered because those damned tears were threatening again.
He waved a sort of salute at me and left.
As David predicted, my IV was removed and I was put on Percs. No difference. The pain persisted stubbornly. My brother drove my mom in to see me later on in the afternoon, after my roommate was discharged and I was settling into having my own room very nicely. After Ma left, I was woken from a nap by someone bursting through my door, pulling a huge bed.
“This is your new roommate,” a chubby blonde guy said, and I vaguely remembered him from yesterday. He was wearing a very bright tie-dyed T shirt with a huge marijuana leaf on the front and it said, “Legalize It” in smoky looking letters. I chuckled out loud. “Oh my God,” I said. He was wearing white pants so I assumed he was an orderly, but I was mistaken.
“I’m your 3-11 nurse, Anthony,” he said, “And this is Liza.”
She was cute, maybe twenty, blonde and sunburned. Her leg was in a sling and she was on her cell phone. She half-waved at me, so I gave her the same and got back to my book. Anthony got busy moving the old bed out and positioning the new one. Then he hooked all her machines up to the plugs behind her head. I watched him from time to time, looking up from my book.
When Liza got off the phone we exchanged surgeries and information. She was a student at Harvard University and had an injured knee. She was missing all of her classes and no one would get the notes for her because that’s how competitive Harvard is and this girl was feeling like she didn’t have a chance now, after all of her hard work.
“Come on, Liza, no one is willing to help you? What about your roommate?”
“No, she won’t. She’s too busy herself to go chasing my professors down.” She gave a heavy, dramatic sigh and got back on her cell phone.
Robert came in with a coffee from Starbucks for me.
“You’re a saint,” I said. He kissed me deeply. Liza didn’t even notice. He told me all about work and what was going on there. He’d heard from my sister and the girls were doing well. At least they were sleeping, which was a small miracle. I thought to myself, fathers start with work then talk about the kids. Mothers would start right in with the kids first. And maybe not mention work at all!
“She said Vi was gearing up to take a few steps,” Robert said.
My heart lurched and my stomach did a flip. I was missing my children. “I’m not surprised,” I said. Violet had been on the go since birth, I think. She was ready to run at any minute.
The evening passed. Robert watched me eat supper, then ate what I didn’t want. We watched a little TV together while Liza steadily worked on her school stuff. Before long, Robert was getting kicked out and I had survived another day. The pain wasn’t as bad, despite the useless Pain Management doctor who did nothing for me at all that afternoon. But I was so uncomfortable, sleeping on my back every single night. I rang my nurse’s buzzer and Anthony came strolling in.
“Yes?”
“Anthony, I can’t sleep on my back any more,” I complained.
“Butt hurt?” He asked with a straight face.
“Yeah, kinda, but I’m just so uncomfortable,” I said. “How long do I have to keep the pillow between my legs?” I asked.
He laughed. “Honey, you’re going to be sleeping with a pillow between your legs for the next year, so get used to it.”
“How?” I asked.
“I’ll help you, but in a little bit, okay? I have some stuff I have to do.”
“Okay, thanks Anthony.”
A little while later, Anthony came back in and taught me how to roll onto my side, keeping the pillow intact where it was between my knees, and using the side railing to prop myself up a bit. Then he shoved another pillow behind my back and I immediately felt better.
“Oh my God, thank you,” I said again.
“No problem, girl.” He said. “Need anything?” He asked Liza, who was still writing furiously in her notebook and reading from this huge text book. She shook her head. She had headphones on and I wondered what kind of music she liked.
The next day was a little tougher. They were giving me less Percocet, and I was feeling it. Plus, my arthritis symptoms needed some attention. I pointed this out to the morning nurse and she got my regiment going again right away so I would be fine by the time I was discharged tomorrow.
Tomorrow! Oh, it could not come soon enough. I wanted to get the heck out of here and see my babies, sleep in my own bed.
“Hey there,” David said as he came bounding through the door. “I brought gifts.” He held up a pair of crutches that looked like they were made for a midget they were so small. “I had a hard time finding a pair this tiny,” he laughed. “I had to call Children’s.”
“Oh, shut up,” I said, swinging my own legs over the side and proudly smiling up at him, as he had barely just gotten to the side of the bed.
“Whoa, impressive!” He said. I beamed.
He got me into a standing position and fixed the crutches under my pits. It felt awkward and my fingers were swollen so I couldn’t grip the handles very tightly, but I was excited to try walking. It felt weird, not having muscle working for me in my leg. It was like I had no control over it, and I wouldn’t, David told me, until the muscle grew back in a few weeks. Every day, with work, they would get stronger, though.
“Okay, come on, shake a leg,” David taunted me.
“Don’t kick, don’t fight, don’t sleep at night,” I sang.
“Huh?” David said.
“Come on, David! AC/DC? Shake A Leg?”
“I have no idea what you’re talking about,” he said.
“Oh my God! How old are you?” I demanded. He smirked. “I knew it,” I said, “you’re a child.”
“Let’s go, get moving, you’re stalling.”
“Yeah, right,” I said, moving past him and taking my required three steps for the day. “I suppose you don’t know “Gimme Three Steps,” either.” I turned around like a pro and I could tell David was impressed.
“Can’t say that I do,” he said, and I just shook my head.
“Kids today,” I muttered.
I told Robert about that as we were driving home the next day and we laughed. I passed my physical therapy test with flying colors, going up and down steps twice before they would release me. David had given me some cool tools to use to help me put on my own socks, since bending over was impossible and sort of off limits for now. He also have me a grabber so I could get all the things I needed by myself. I wasn’t supposed to be reaching up at all, it could tear something that was supposed to be healing. It’s like David instinctively knew that I was going to try to do everything myself. Or, as much as I could, anyway.
When we got in the driveway I was pretty confident that I could tackle the steps leading up to the front door, which we never used, but Robert didn’t think using the porch would be a good idea today because of the steep steps and big top step. I agreed, made it into the house, and sat down in my recliner. Sitting wasn’t that easy. I had to find the right chair. But I was home. I was walking again. I knew it was going to be a long six weeks, but I was up for it, thanks to David and the wonderful nursing staff at the Brigham.
Everyone at Brigham and Women’s Hospital was great and I owe them all so much thanks for getting me through what was probably the worst time of my life. Nurses are so underrated. They are overworked and underpaid, but they are still the ones who care the most and do the most for you. They usually only see you for a few days but they make a point to get to know you, to make you feel comfortable. I sent a huge bouquet of flowers to the nursing staff that week with my sincerest thanks and best wishes to all of them, as well as to David, who may have been young, but he was a fantastic physical therapist, and I was reminded once again not to judge anything by the looks of it. You just never know.

Yesterday, I transplanted pumpkins that were shooting vines all over our spare bedroom along with some leggy broccoli, and so I naturally thought of Dad. All it took was a sniff of seed starting soil mixed with the musty, decomposing stench of Plant-Tone. I caught a whiff as I carefully carried the two trays of seedlings down the steep, cellar steps. My brain flashed to all of the times I helped dad transplant tomato seedlings and his white Styrofoam cups with the bottoms cut-off.
When Dad died in the winter of 1995, we decided to buy the house in Bellingham from Ma because she could not care for the acre property by herself. The change of seasons in Massachusetts is a night terror for the elderly. If you aren’t mowing your lawn once a week you are shoveling feet of snow and raking mountains of leaves. It never ends, and Ma wasn’t interested in that. After two years of caring for Dad during his battle with congestive heart failure, and forty years of raising six kids practically by herself, she was ready for a rest. I understood completely. She deserved it. Ma found a condo in the south part of town, and I saw it as an investment toward the future home I would find that would be perfect for me. Fifteen years later, I am still in Bellingham and every year I put tomatoes and other things in the same ground my dad did when he lived here. We’ve stayed for many reasons, but I have just as many for wanting to leave. Those same bitchy seasons are a huge factor in the face of your average arthritis sufferer.
I learned everything I know about gardening from my dad and so I naturally started my own little plot the summer we moved in. I made it larger and tried new things each year. I added fruit bushes and grape vines, just like Dad had. I started making and canning pickles and jams, and it just became part of my life, something I love to do. I had successes, I also had failures, but dad was an artist with plants. He could coax a juicy pepper from the most downcast of plants, deeply shocked by an early frost, like no one I’ve ever seen on the Home and Garden channel. His roses were exquisite, though he never used chemicals or pesticides to enhance his plants. He composted our scraps and the grass clippings before it was popular to be organic. He hand-picked the weeds instead of using Round-Up. Imagine that! I gardened organically by his example, not because it was cool to do so, and I got made-fun of a lot at first by the same people who are now buying organic food at the local Whole Foods Market. Our neighbors still used chemicals on both sides of our house and across the street so my garden was probably getting soaked with noxious pesticides brought in with the wind anyway, but at least I took care with my little piece of the earth and that’s all that mattered to me.
When I clicked the lights on in the cellar yesterday, I breathed in deeply with my nose and smelled Dad. He practically lived in the basement when he was home. Way before the “man-cave” my dad had a little place to himself down there, complete with beer fridge.
When we first moved here, I used to think I smelled roses and cigarettes sometimes when I was down in the basement alone. Pain mixed with anger floated through my consciousness. It wasn’t the first time I had thoughts that maybe living here would bring back too many bad memories. After all, I knew I was probably the only kid at school with arthritis, but I definitely wasn’t the only one with a dad who drank too much, was I? Some of the feelings that I had were very raw.
I spent a lot of time with my dad between the ages of four and twelve. Ma had five older kids, the three boys were in sports, and if she wasn’t trapped under a mound of laundry, she was driving five or six kids back and forth to the baseball field or basketball practice. I often ask her now how she managed to do anything else but laundry. I have one-third of the kids she had and I am always throwing a load in, it seems. Especially during softball and basketball seasons. She laughs and says she blocked it all out. That always makes me smile, even though it should make me sad. My poor mother.
By the time I was eight, I’d already been in the hospital twice for infections and it seemed as if I had one illness after another before I was finally diagnosed around the age of twelve with Juvenile Rheumatoid Arthritis. It explained a lot of mysterious aches and pains that I always seemed to complain about, as well as the hot, swollen joints where I had the worst eczema. I spent the whole of my elementary school years miserable with itchy rashes, stiff joints that seemed to hurt deeply into the bone. I had random, unexplained pain without a clear-cut diagnosis as to what was going on. I was on and off prednisone for five or six years, then a really bad viral infection took hold of my little body and the arthritis hit full flare. I didn’t know what was going on but my limbs were not doing what I told them to do anymore and the pain was ridiculous.
But before all that, when I was considered normal, my diagnosis was simply “severe eczema,” and I suffered badly as a small child.
To distract me, and to get me out of Ma’s hair for a while on Saturday mornings, Dad took me on his errands and then food shopping at Fernandes in Medway. On the way home, he would stop at “the club” to drink a couple of beers and bring me in with him while the food sat in paper bags in the back of the station wagon. But not for too long so that Ma would get mad.
I sifted the white sand from the shuffle board table through my fingertips. Then I fiddled around with the piano. I only knew one song. Chopsticks. The deer head mounted on the wall watched me all the while. Its eyes followed me, no matter which side of the room I was on and it freaked me out.
I stuffed more and more pieces of Juicy Fruit gum into my mouth. Dad bought me that at the store. He knew it didn’t matter. Ma would never find-out because it would be gone before we got home. I liked to shove two, even three, pieces of the gum into my mouth at once, and since it got rubbery and tasteless after only a little while, I had to re-load often. The problem with Juicy Fruit, for me, was that I wanted to have a fresh piece in my mouth at all times. I wasn’t supposed to have gum. My teeth were rotten because of all the Prednisone. When you looked at pictures of me, from year to year, you could tell when I was on the steroids and when I was not. When I was, I was a puffy, bloated fish, who looked as if she could float. When I was not, I looked thin and deflated. I always looked tired.
I wonder if that’s because I was a terrible eater. Everyone laughs now at the appetites my kids have, that they eat like men and try everything. I was not like that at all. Picky beyond picky, I never tried anything new. I also had food allergies so it was daunting to try a strange fruit or nut without a little fear attached. My brothers and sisters made fun of me and acted like I was faking it because I didn’t like peas, but was I faking the huge hives on my lips? No one bothered to look that closely.
When Dad and his friends laughed loudly at the bar, I glanced over at them but no one was looking at me. Dad never said it outright, but I knew, even as young as six, not to let-on to Ma that we’d been to the club. I never had to because she always knew, without me telling her, anyway.
I climbed up onto a big bar stool and ordered a Coke from the fountain, and a bag of Wise potato chips, the forbidden fruit.
“Charlie, that’s my baby,” Dad said, proudly, and rubbed his stinky, tobacco stained fingers down the mane of my white-blonde hair.
“Cute little girl, Whitey,” this guy said in my direction. He had a crooked-toothed smile hiding beneath a huge, swollen, pink nose. I watched a purple vein quivering on the bridge of it, running toward his right nostril.
I knew I would pay later for having potato chips. My itchy, swollen limbs, and a nervous feeling of guilt, would overcome me when I got home, but at the moment, I was looking for a place to put my gum for later.
When I was done with my Coke and Dad was done with his beer, we went home.
Ma said, “Did you get bananas?”
But then she saw me.
“Hon, you didn’t let her eat potato chips again, did you?”
The evidence was all over my face, the red, blotches and scratches I couldn’t help but make on the drive home. It itched so badly. She was mad, too, because she could tell Dad was buzzed. As much as he always told her how stupid she was all the time, I learned pretty fast how smart Ma really was.
“You’re getting an Aveeno bath tonight, Lady Jane.” She grabbed my arms a little roughly and spread them out so she could see. I had scratched them both bloody. Time with Dad was worth it, though. Every second. He treated me as an equal, never talking down to me, and he let me have whatever I wanted. I was his baby. He said it all the time.
Ma rubbed shiny ointment all over my skin that night, then pulled my brother’s long, white tube socks up over my hands and arms. They were supposed to keep me from scratching, but I always managed to rip them off during one of my powerful dreams and the next morning there’d be dried blood all over me from where I’d scratched.
Ma tucked me into bed and kissed me twice on the lips.
“Now say your prayers and go to sleep,” she said, before shutting the door half-way. I rolled over onto my side.
The next day was Sunday and Dad cooked us breakfast to loud Polka music before we went to church. Dad loved Polka music and was quite a dancer, even though he was Russian, not Polish.
I always had “bubbles,” on Sundays, my name for eggs, sunny-side-up. Dad made us big glasses of chocolate milk, toast, and fried, plank potatoes, salted to perfection. My brother and I would sit on the floor in the parlor in front of the long, coffee table, eat, and watch cartoons. Dad wasn’t part of our church, so he worked in his garden while we were gone, and prepared a big Sunday meal. It was usually something like pork roast which I didn’t like. I put a Chinese jump rope around the legs of two dining room chairs and played by myself while I waited for everyone else to be ready to leave for church.
“In, out, side to side, step, in, out.”
Dad was peeling potatoes.
“Quit jumping around in here,” Dad yelled and he snapped off the radio and headed for the cellar. I didn’t like the way my name sounded in Dad’s mouth when he was angry. It made me feel stupid and queasy. I threw my jump rope into my drawer in the kitchen where I kept all my stuff. Ma called it junk. My brother’s junk drawer was right above mine.
After church, I changed into jeans and a T shirt and went outside in the back yard with my baton. When I saw Dad sitting at the picnic table drinking a beer. I ditched my baton and asked him to play me in gin rummy.
I sat down across from him after I’d fetched the cards and a little tin can and set them both on the table between us. Ma kept pennies in the can and left it on the kitchen counter. It had felt flowers pasted all around it and when anyone had extra pennies in their pocket, they dropped them in the can. It was a gift from my older brother, who picked it up at one of those shopping sprees at school. The library was a store that day, and each period a different class went in and kids could buy Christmas gifts for their parents and siblings. There were long tables with cheap arts and crafts littered on them. A cash box sat before the mom volunteer and we took our crumbled dollars from our pockets to pay for the junk we chose as gifts. My kids go to my old elementary school and they still have the shopping spree but it’s a lot nicer now with better gifts. My kids love it.
“I got Gin, Bum.” Dad said his nickname for me without thinking about it. He had the same nickname for all three of us girls and stopped using it as soon as that girl was wearing a bra. As usual, Dad flipped his last card onto the table, face down. I watched his Adam’s apple slide up and down on his tanned neck as he polished off the rest of his beer in three long gulps. He wiped his mouth with the back of his hand and swept all the pennies toward him. I felt jilted but at the same time I was fine with it because Dad never let me win, he didn’t patronize.
“Let’s play again,” I cried, but Dad said it was almost time to eat so I retrieved my baton from where I’d thrown it earlier. I twirled it around for a while, making up a little dance routine with it. I then watched Dad mope through his garden. He admired his growing, rich, fern of asparagus, then clomped down the aisle toward his bushy green bean plants. I made-up more moves for my dance routine with my baton until Ma called us through the back porch window.
I washed my hands and sat at my seat at the dining room table, on the left side of Ma. I was the only one there, and I pretended that it was just me, Mom and Dad in my family, instead of me and five other kids. I imagined I was the only kid, and when my parents sat down to eat, it would be just the three of us, talking about what we had done that day and passing the gravy or mashed potatoes only to each other.
Instead, my sister sat down to my left, then Dad at the head of the table, then my three older brothers elbowed each other down the other side, to my mom’s right. The table had two leaves, which were always needed when everyone was there but my oldest sister didn’t make it home much unless it was a holiday, and even then she didn’t stay over anymore. After she went to college in western Mass, she got a job in Boston and her own apartment with a few of her friends.
After dinner, when Ma started to clean the dishes, I was still sitting there trying to finish, by myself as usual, always the last one done. My stomach churned, as it often did when I was on Prednisone, and I had a hard time getting anything down. I’d finished my mashed potatoes, though, so that should have been good enough.
Dad finally had mercy on me and told me to go get some Styrofoam cups from the cupboard. I did, and he carried two long trays at a time through the kitchen, taking the seedlings from the parlor to the porch. Ma had already made my plate disappear.
We had a table in the parlor under the back window. It got a lot of sun in the afternoon so Dad kept his tomato and pepper seedlings on it before it was time to plant them outside. He planted seeds in plastic pots back in March, in sets of six, then moved them to bigger pots in April. Then in May, he kept putting them outside for a while every day when the weather started to warm. In early June, it was time to set them out, for they were finally ready.
“It’s called hardening them off,” Dad said as he carefully put the plants down on the porch floor. We used to have a black and white TV out there on the porch, sitting on top of the little fridge with the Busch Beer sticker on the front. Dad watched the Red Sox on it sometimes if we wanted to watch Happy Days or Laverne and Shirley in the parlor, but my sister took the little TV with her saying she had bought it, so now Dad watches the Sox in the parlor, even if we want to watch something else.
I looked at his tall, leafy plants. They all had thick stalks, some even had produced a tiny, yellow flower or two, and I suddenly felt their need to go and take root in Dad’s composted haven outside. Their stalks were thick, and the deep, green leaves on each were beautiful. I loved to smell the tomato seedlings. It always reminded me of Dad.
“And that’s what we’re going to do today.”
Dad had been talking, but I wasn’t listening. I was concentrating on his thick, tan hands, gently handling the seedlings. I helped him get them all out to the garden. The soil smelled right, and I lifted the earth into my hands, feeling its silky smoothness. I was entranced with this special place created by Dad.
“This will help stabilize them until I get them staked-up,” he said of the Styrofoam cups, “and none of those pesky worms can get to them either.” He let out a choked laugh, then reached into the pocket of his T shirt for his Camels. When he lit one, I watched the red tip glow when he sucked in. He saw me watching him and stared into my eyes for a while. Then he turned and grabbed his shovel. With each little hole he dug, I laid a little seedling in, pushing the loam around it, as if tucking it in for the night. Dad carefully placed the Styrofoam cup around the plant’s base.
“Good night. Good night. Say your prayers and go to sleep!” I said to each one and my dad snickered at me but said nothing.
He was breathing a little heavy and lines of sweat were running loosely down the sides of his neck. He took his white handkerchief out of his back pocket and wiped the sweat off. He blew his nose with it, folded it back up, and put it back in his pocket. I shuddered. Gross. I hated handkerchiefs. I wanted to buy cute boxes of Kleenex but my mother said they were too expensive and you just threw them away. I told her that you would save on time, water and detergent from not having to wash them every week and she told me to shut up. Maybe she had a point.
I looked at the bulging pocket of Dad’s T shirt, thinking he was smoking too many cigarettes, but you couldn’t talk to Dad about stuff like that. He would say you didn’t know what you were talking about. Sometimes I agreed with him, but sometimes I didn’t. He didn’t like it when I didn’t. He would say I was starting to act smart like my sisters and I knew what was at the end of that road. Nothing.
By the time Dad and I finished transplanting two rows of tomatoes and two rows of peppers, the knees of my jeans were soggy and stained with mud. I was hoping Ma wouldn’t be mad. The sun was starting to set way down the end of our street behind the trees. It was glowing red, just like Dad’s cigarette. The smell of his smoke competed with the aroma of Ma’s famous Nestles Toll House chocolate chip cookies, which were considered a creation around these parts. Ma made the best cookies in town, and everyone knew it. I didn’t like them. I never really cared for sweets. I liked potato chips and I couldn’t have them. I especially loved Wise potato chips. They were so salty my lips would chap and sting when I ate them. I loved that.
Later, Dad sat out back, on the picnic table. He did that a lot in the evening, shoving the charcoal grill off to one side so he could have an unobstructed view. He stared out at his garden and beyond into the woods, maybe thinking about all those rabbits, and other creatures, who wanted his vegetables as much as he did. Maybe the picnic table was where Dad did a lot of thinking. I know that’s where he did a lot of smoking. He’d sit there and sip beer under his luscious grapevine that grew on a huge trellis above his head. Sometimes he laid down right there on the bench and took a nap. Ma would laugh a little, but more often than not, she’d click her tongue in disgust. I was just glad he wasn’t “taking a nap” on the couch on the porch, since all of my friends would see him if they came over. There was a small chance they wouldn’t notice him out back on the picnic table, at least. Pretty soon, I stopped inviting them over after a while. The turbulence was too unpredictable.
The grapevine was half red, half white, but I called them green because that’s what they looked like. They were infested with Japanese beetles. Dad didn’t seem to mind them. He used a milky mixture he created himself to control them and he sprayed them every year so that the leaves would stain white but the grapes would flourish. The beetles never went away, though, and Dad shared with them very nicely. If one happened to escape then it would face cruel and unusual punishment at its finest by my middle brother.
He was a skinny kid, but tougher than the foundation of our seven room Garrison Colonial. He had light brown hair that sweetened to blond in the summer and hazy, auburn colored eyes that blazed in the sunlight, his choice of weapon to torture his subjects. His eerie, evil smile began at the corner of his lips, and snuck all the way to his cheeks by the time he was finished with the beetles.
He held his pocket magnifying glass above the poor things’ heads and watched them with tremendous glee, burning alive in his marmalade eyes, their wings fluttering as they tried to flee, but the magnifying glass followed them down the path of the picnic table. When he was done with one, he found another and pushed it under his magnifying glass, demonizing the sun to subject his prisoners to a slow, burning death. Soon, they were nothing but dust on the Quikcrete. As he finished, he swept their remains off the table, done with his work.
He used the stove to burn some of his army men once. He had a thing for fire. It was kind of sick though, the way he made one soldier headless, another one arm or legless. He lit the gas on the stove and held them over it using Dad’s photography tongs. I could almost hear them screaming, squealing in pain, like the lobsters Dad threw in a boiling pot of water to cook them. Ma had plenty of stories about her middle son, and his “curiosity.” Like when he lit a fire in the woods when he was a little kid. And when he did it again the fire department chief showed up to have a talk with him.
His grades were stellar, though, and he was a great athlete so my parents gave him a pass every now and then. He went off to college, too, eventually. Everyone left eventually and I felt sad and lonely, but wasn’t that what I wanted? To be alone with my parents? I wasn’t so sure that was a good idea any more.
That night, after I took an Aveeno bath, we watched the Lawrence Welk Show, and I sat on Dad’s lap in the big chair before the TV. I had on pink and white feet pajamas and Dad was stroking my long, blonde hair. His fingers smelled like cigarettes and his breath was full of beer, but that wasn’t all. He was tanned, happy and young. The way I wish I remembered him.
After Lawrence Welk, the Wonderful World of Disney came on. We all loved that show. Mom sat sideways on the couch with her feet up, my brother on the end, and me and Dad in the chair. When it was over, it was time for bed. Ma read Dr. Seuss’ “The Sleep Book” to me and my brother then tucked us in tight. “Say your prayers and go to sleep,” she always said.
I heard Dad take-off in his long, black car minutes later and he wasn’t back until late. While I waited for him to come home from the bar, I rolled over onto my side, trying to force myself to sleep by rocking and counting to one hundred, then starting over again if I wasn’t asleep, yet. I wondered if all Dads went out with their friends on the weekend instead of settling down on the couch to watch Marcus Welby with their wives? I wondered if their wives even wanted them to? Maybe they liked having some alone time after all of the chaos.
I wasn’t asleep yet, and it occurred to me that rather than counting, I should say my prayers, since I was getting so distracted by my thoughts that I had to keep starting over again. So I said the “Our Father,” then “Hail Mary,” followed by “Glory Be,” and finally, “An Act of Contrition.” I said them over and over until I lost track of which one I was saying. I reverted back to counting, but never fell asleep.
I craned my ears to hear Dad walk through the porch door. Was he drunk?
“Oh, for Christ’s sake,” he muttered, a little loud, or maybe that was because it was deep into the night, and everything was still, except for the low drone of the TV. Ma always waited up for him. For everyone.
I heard his belt come off, change jingling in his pockets, as he took off his pants downstairs in the hallway where he kept his clothes in the closet. Maybe that was for a quick escape? It didn’t seem odd to me then, but it made Ma mad because he was always walking around with no clothes on.
“I have clothes on,” he yelled suddenly and I jumped. I heard my brother snort in his sleep. Dad wore really thin boxer shorts. And whenever he was walking around with them on and nothing else, I had this fear of the census lady showing up or the Boy Scouts with their box full of stuff to sell.
I wondered if Ma said something else to get him mad after that, something like, “Are you drunk?” Because he was yelling more loudly now and banging cupboards and drawers. He never hit anybody but the boys, sometimes, so I guess we should have been thankful. One time Dad put his hand right through the cellar door, he was so mad! He broke his arm that day and Ma wouldn’t take him to the hospital so he drove himself and came home with a cast and a sling.
That memory, and what was going on downstairs set my heart beating fast, and I felt as though it were me being blamed for coming home late, stinking of beer, a little vodka, maybe, and yucky cigarettes. In the winter, Ma made Dad hang his coat outside on the porch because it stunk so badly from the bar.
He labored up the steps, still muttering to himself, got into bed, and started snoring loudly. I finally drifted off to sleep.
Dad was up early the next morning for work, as usual. He never skipped a day, despite his condition the night before. He was always gone before we got up. It awed me, how he could be out all night and sounded like he was going to cough out his liver the next morning, but he’d never stay home. It wasn’t too hard to figure out. Why stick around here and listen to Ma all day, and how it was your own damned fault?
Ma fixed me some Count Chocula cereal and pretended nothing was wrong. I heard her go down to the cellar as I was heading outside. That’s where she always cried. Me, I needed to cry somewhere comfortable, like in bed, with my blankie wrapped around my neck for solace. I would never be able to get comfortable in the cellar, where the scary woodpile was, and where I always found myself in my nightmares. I didn’t like it down there, still don’t, but I guess Ma did. She never cried in front of anyone. Besides, she did the wash at the same time. I wanted to follow her. I liked to rock on Prince, my rocking horse, while she did the wash. Something told me not to go that day, though.
I stayed outside until lunch time. I had a grilled cheese, a ring ding and some Kool-Aid like I did every day. I stepped quietly around Ma, testing her mood. Later on, I watched the Flintstones and the Brady Bunch on TV, Dad got home, and we ate supper.
We were having chicken with potatoes and carrots. I was a meat and potatoes girl and didn’t have any desire to taste the fresh asparagus or tomatoes Dad grew in his garden. Everyone else seemed to enjoy them, so let them! I didn’t like vegetables, except green beans and potatoes.
“Go get me a beer, Bum,” Dad called to me. He was home early, so I gladly ran to the cellar for him. Ma wouldn’t let him keep his beer in the fridge upstairs. He didn’t seem to mind, though, he still came home with a case every Friday night and two boxes of pizzas from the Greek’s up the street. I guess it made him happy.
The cellar was cold, and as I opened the fridge door, I shuddered, not just from that, but because of the wood stacked neatly behind me. I hated that woodpile. I had a recurring nightmare that someone was chasing me down the cellar stairs, and as I turned the corner to hide behind the woodpile, I saw Dad and it scared me. I would wake up screaming and my sister would yell at me to shut up.
I hated to go down cellar. I guess that’s why Ma made me go down there when I was bad. I would cry and scream to be let out, holding onto the door handle in terror, waiting for the cellar ghost to get me.
That wasn’t the only recurring dream I had when I was between six and ten years old, either. I also used to dream, all the time, that I was running from the house across the street to my own, but in super-slow motion. I couldn’t get my legs to move any faster, and as I looked down the street, I saw a yellow taxi cab coming at me full speed, obviously going to hit me. I would then, for some reason, bend down on the street, crouch, and wait to be hit with my eyes squeezed shut. I always did have vivid dreams. In techno-color. I wonder if that was from the Prednisone?
Dad had a few more beers and next thing you know, he and Ma were having another fight. My brother and I ran upstairs and shut the door to the bedroom he shared with our two older brothers.
I whispered to him to turn on a light. It was dark and stuffy in there. He laid down on his bed with his face toward the wall, away from me. I didn’t know how he could use such a harsh, dry blanket like the pea green one on his bed. It had belonged to one of our older brothers and had thick pills of fabric all over it. I used to fall asleep on them once in a while when the boys were home, listening to the Beatles on the Hi-Fi in their bedroom while they played cards. I would fall into a kaleidoscope dream and I always woke up with a scratchy design on my cheek that itched.
“I hate him.” my brother said quietly. I stared at his small back, at the shape of his head, the same one his son now possesses.
I wanted to feel the same way. I wanted him to know I was loyal to him, the one whom I knew instinctively would always be there for me, no matter what. Dad? Everyone knew he couldn’t be relied on. We just didn’t know that would be because he was dead, not just down at the club.
“Me, too,” I said, not really sure if I did, or not.
I got really sick a few years after that weekend and I never got better. I didn’t really think much about Dad’s drinking after that, since I was busy trying to find out what was wrong with me, testing one thing after another, seeing a slew of doctors. I had enough to think about just getting up and through each day and even though I was right about my brother, he was always there for me when I needed him, I was surprised to find my dad right there for me as well. If he was working the three to eleven shift at GM, for example, he’d show up at lunchtime when Ma was at work and cook me something to eat, or watch TV with me and I’d feel less alone during the day. Even though my arthritis was a difficult challenge for me, it was also a heartbreaking reality for my parents, something I didn’t really get until I became a mother myself. Having my kids gave me a whole new perspective on my arthritis, and on my father, so if anything positive came out of this dreadful disease, I choose to take that away from it. I saw him as a different person than the rest of the kids did. He showed me that he was more than just an absent father, a selfish alcoholic. He was also the father of a very sick little girl and that often took precedence over his own wants and needs. I saw him and my mother become a team to help me battle my arthritis and my opinion of him was formed, or transformed, after that dreadful diagnosis. Sometimes out of darkness comes light. There was no doubt that my arthritis brought my parents closer together, too.
After Dad died and I moved back into his house with my husband, I looked around and realized that it wasn’t just his body that had shriveled away. His rose bushes didn’t exist anymore. Where the garden was, a wide expanse of grass grew. The compost pile was down and gone. No asparagus bush swayed in the wind. The grapevines seemed to have disappeared into the earth. It was up to me to recreate all of that, or start anew, and I have to say, in the fifteen years we’ve been here, I’ve watched my gardens flourish right along with my children and I think of Dad with pleasant memories and fondness instead of with anger and sadness. It’s just better for me that way.

When you are newly twenty-one and experiencing all the bars and clubs for the first time you begin to think that nothing good happens until after midnight. That’s when things get crazy, heated up, and most of all, interesting.
Then you get a real job, get married, have kids and the middle of the night feedings make you feel bogged down and groggy all day so you are going to bed earlier and earlier, trying to catch up.
When your kids get a little older and they start school and sports you are rising so early that it seems ridiculous to stay up until midnight. The eleven o’clock news becomes the ten o’clock news and you are in another different stage of life. But every now and then you find yourself up after midnight and you remember your crazier days with a twinge of sadness. Even a longing.
I was nine months pregnant and it should not have been 94 degrees in Massachusetts in April. My toddler, Natalie, wore a T shirt and jeans while running through the sprinkler in the backyard barefoot. I caught my breath on the deck stairs, watching her and her ability to adapt in amazement.
“Nat, come in for a minute, I’ll give you a freeze pop,” I called over her shrieks of excitement.
“Yay!” She yelled. I felt damp all over. Yuck.
I pounded into the cool, dim kitchen and immediately felt relief. I loved this kitchen in the summer. When southern Massachusetts was so humid you felt as though you could slice a piece of the air and plop it on a plate for lunch, my kitchen was a dark cave, an oasis from the sunshine assault in my backyard. We had mammoth maple trees surrounding our property and I wondered if this was my father’s plan when he planted them, to keep the house cool, even on the hottest days.
I snipped the top off the frozen delight and handed it to Nat, her eyes zoned in on the pop like two laser beams. She loved freeze pops. She was dripping all over the floor. I didn’t even care.
“It’s a green one,” she said in amazement, as if meeting her teen crush for the first time. She really blew me away sometimes, the way she found delight or wonder in the tiniest of things, like dog food and fuzzy slippers. Toddlers forced you to live in the moment and notice everything. What a great gift that was!
“Yes,” I said, knowing it was her favorite flavor.
She was almost two years old and her hair hung down to her butt like a curtain of yellow sunshine. We got comments on that hair just about every day. Her big, blue eyes looked like fresh blueberries I could pick and pop in my mouth.
As Nattie busied herself licking and sucking the hell out that freeze pop, I looked at the pair of scissors in my hand then scooted into the bathroom. I was going to cut these maternity jeans into shorts for some relief from this unbearable heat. I never bought any summer maternity clothes because both my pregnancies ended in early spring. No need for anything less than a short sleeved shirt or two and I had plenty of those.
When I was done with that and pulling the shorts back on, I realized I had to go to the bathroom. Nat was through with her pop and pounding on the bathroom door.
“Maama! Wanna go outside??!”
It was more of a demand than a question.
“Yes, baby, in just a second,” I said as I sat down to pee for the fortieth time that morning.
When I pulled down my pants, I was stunned to find my underwear soggy. It wasn’t just a second ago, was it?
“Huh,” I said, wondering if my water had broken. I hadn’t felt anything. I was due in about seven days, and I knew that with Nat I went the full 40 weeks pretty much.
When I wiped, I don’t even want to describe what I saw. I quieted my mind so I could focus on if I was having contractions, or not. That was how it was with me and pain lately. I had to slow down, block out the distractions and “hear” the pain, since I’ve developed a pretty intricate way of blocking it out. That’s why I enjoyed being in labor so much. I welcomed the pain because I knew at the end of it I was going to get a prize. Unlike with arthritis where the only thing at the end of all the pain is more pain.
“Why don’t you come on in tomorrow?” The receptionist said calmly when I called my OB.
I then phoned my mother to see if she could baby-sit Nattie. Of course, she agreed. She took every opportunity to spend time with her second granddaughter out of seven kids.
The next day was hotter than the day before, so I pulled those cutoff shorts back on for my doctor’s appointment.
“How does it feel to have an absolutely normal pregnancy?” Josie, the nurse who led me into the exam room, asked. I sighed and shook my head. I never had a normal anything, but she was right. This pregnancy had been so easy. I went right off my arthritis medications with little to no problems, thanks to Medrol, a version of Prednisone. I was running around after a year-old child with a mission to do everything she possibly could do in one day and I rarely felt any pain or stiffness. I got pregnant quicker than the first time and within the first trimester I had already been able to stop taking the steroids. With Nat, I never got off of the them, which is probably why I got gestational diabetes with her and not with this one, even though they tested me five times for it and that awful orange soda was starting to really nauseate me.
I’d also had projectile vomiting for six months when pregnant with Nat so that they had to give me vitamin B12 to curb it. I only gained twenty pounds with her.
“I know, right? No pain, no steroids, no gestational diabetes, no preeclampsia. It’s been so easy!” I blurted out as I tried to get on the table.
“Let me just get the heart rate,” she said, using the little machine to hear my baby’s rapidly beating heart. I smiled. The nurse smiled at me.
“I love seeing you so happy,” she said.
Josie had been around a long time. I remembered the first time my sister had taken me to this office and Josie had been the one there to get me through my first pelvic exam. I shuddered to think that my daughter would have to go through that one day.
“You are starting to efface already, dear,” Josie said, after she did a quick check. You need to call us if you feel anything, if your water breaks, you know the drill.”
“Yes, I do,” I confirmed, as she grabbed my hand to help me sit up.
“The doctor will be in shortly. Get dressed and he’ll give you some further instructions. Nothing to worry about. Everything’s fine,” she said, closing the door.
Wow. A normal pregnancy. I would save those words in my heart for when I was really down and I needed to pop them into my psyche for a while to boost it up. I couldn’t get the stupid smile off of my face.
The doctor came in, smiled brightly, took my hands gently.
“We’re almost there,” he said, looking into my eyes.
I just kept smiling.
“Tell Rob to get things going by having a lot of sex.”
“With me or someone else?” I laughed and he chuckled.
“The sperm gets things moving, gets labor going. That’s my prescription today and I will see you soon.”
“You sure will.”
“I like the cutoffs, by the way,” he added. “Jean cutoffs are my weekend uniform.” He flapped his tie wildly and added, “I hate these things.”
“I bet,” I said, and managed to get off of the table without looking like a rolling beach ball. He seemed like a former hippie and was probably just around the right age.
“I want to get a quick ultrasound before you take off, to check the weight. Make sure she’s not too big for you to deliver.”
“He,” I said.
“My people are never wrong,” he said, grinning.
“We’ll see,” I said stubbornly. I was going to have a boy and that was final. I wouldn’t hear anything else.
Driving home, I wondered why the baby was so stubbornly turning to its side so we couldn’t see the sex.
“I’m still thinking girl,” the tech said to me, as the baby so trickily crossed its legs just as she rolled the device over my belly. I knew it was a boy, since I was carrying so differently than with Nattie, and I looked so much better, not so swollen and uncomfortable. I guess we’d find out soon.
She suddenly looked at me, her brow in a frown.
“Don’t you feel that?” She said.
I looked back at her, “What?”
“You’re having some pretty major contractions. Aren’t you feeling anything?”
I shut my eyes to concentrate. I felt a small pulling, a tightening. Maybe a cramp or something like one.
“A little, I guess.”
She blew a short breath out of her lips. “This is going to be easy for you then.”
“Well, it’s my second,” I said, not without a little pride escaping from my ego. I knew I was good with pain. I had no epidural with Nat and I didn’t plan on needing one with this one either. I’d been trained for agony quite early on in life and this wasn’t going to be so bad, I thought.
I had no trouble getting Nat down for a nap when I got home around eleven thirty or so. Natalie had already had lunch and my mother had worn her out somehow. My sister and I called her the master of distraction. I guess when you have six kids you learn a few tricks of your trade. My mother was amazing, I thought, not for the first time since I’d become a mother myself, a title I still had trouble believing was mine.
When she left, after about a thousand hugs and kisses from Natalie, I popped my busy baby into her crib with Didi, her favorite blanket, and watched as she brought the soft lovey to her nose, her eyes closed slowly, her little, pink lips pursed as if in a kiss, and she was sleeping. I lumbered back to the kitchen.
I washed off some chicken that I’d defrosted earlier and threw it and some potatoes and carrots into the crock pot. I added a cup of water, sprinkled salt, ground some peppercorns, shook some garlic and onion salt into the pot and slammed the cover on top. Nothing fancy. I didn’t have to do much to impress Robert. Natalie either, for that matter. She was the best eater of all the toddlers I’ve ever known.
That done, I grabbed my book and decided to lay down myself for a while.
I was out in no time, dreaming about a small, blue-eyed baby girl with bleach blonde fuzz and my oldest sister looming over my hospital bed with an alarmed expression floating on her face.
I was startled out of sleep by the dog barking and my husband coming through the door after work. Natalie and I slept all afternoon!
I stumbled down the hallway, one foot prickly with sleep, my mind still numb, to get Nattie. She was snoring. I left her in her room, closed the door halfway, and went downstairs to meet Rob and check on the chicken.
“Smells good,” he said, carefully wrapping his arms around me. I leaned my head on his chest. My belly poked at his groin. He was a foot and a couple of inches taller than me. I bet we looked funny trying to hug.
“Doctor says to have a lot of sex to make this baby come. I’m starting to efface.”
“Enough said, let’s get to work!” He said, grabbing my hand and making to lead me upstairs. I laughed loudly.
“MAAAMAAA!”
Rob and I looked at each other and smirked. There’s our sunshine. She’s going to be starving. Then my belly reminded me I’d skipped lunch.
“I’ll go get her,” he said.
I grabbed some dishes out of the cupboard. We had to switch to Corelle after I went off my medications to get pregnant because my swollen fingers could no longer grasp and hold on to the heavy, ceramic plates we were given for our wedding. I washed my hands and started dishing out the chicken for my little family, hearing shrieks and giggles coming from upstairs.
“Daddy!” I loved hearing that out of my little girl’s mouth.
The evening was uneventful, kind of, and I’m thinking the doctor’s prescription worked. I woke up with small cramps and diarrhea. Nattie wanted to spend all day outside and it was still warmer than usual. I was getting pretty miserable by the time Robert got home from work and we were done with supper.
“I just want to go to bed,” I said, “I feel lousy.” I didn’t realize I was in the first stages of labor.
“Okay, lemme get Nattie into the tub and put her down. Then we can watch TV upstairs in bed tonight.”
I nodded, throwing the dishes into the dishwasher, wiping down the counter and counting the minutes until Nat was safely tucked in. That child was out the minute her head hit the pillow, thank God. She was just like her father in that way.
As I wiped down the counter, I heard Robert come downstairs and sit in the easy chair in the living room.
I felt a sharp stab in my belly. “Ow!” I said.
I went down the hall to find Rob. Only about five minutes later I felt another one, this time a tight hugging. I gripped my belly and leaned forward from where I was sitting on the couch.
“What’s going on?” Rob asked.
“I think I’m going into labor,” I said.
He looked stunned. It wasn’t long before I had another contraction, this one long and lasting over a minute.
“Oh my God, Robert, we’d better hurry up.”
He stood up straight and called my mother. The contractions were coming at exactly every two minutes and we were still half an hour away from the hospital. It seemed like my mother was taking forever to get here and I was going to give birth on our living room carpet.
When she finally arrived, I threw my jacket on without thinking about how warm it had been, Rob grabbed my bag, I kissed my mom and we left.
The car ride was a nightmare. I felt this pressure so low that I thought maybe the baby would come right here in the car on the highway.
When we finally reached the hospital parking lot, Rob pulled in next to the booth to get his ticket and the kid must have been taking too long because through the pain of my contractions, which were every minute on the dot now, I heard Rob scream, “Give me my fucking ticket!”
He screeched into the nearest space and ran around to my side to help me out of the car. I was already out and headed toward the automatic doors of the entrance but I had to stop and bend over the pain came so quickly. Rob grabbed my hand and around my waist and half carried me into the hospital. There was a police officer standing by the door who looked at me in alarm, then had the foresight to grab a wheelchair and push me into it.
“Thank you,” I whispered and he smiled broadly.
“Good, luck, Ma’am,” he said, and nodded to my husband.
We went up to the fourth floor, maternity, and told the nurse why we were here. In no time at all we were pushed into a room and I was told to get naked and put on a johnnie.
At this point my labor had progressed significantly and I knew I was going to start pushing soon. It hadn’t taken me long to dilate to the full ten centimeters with Natalie. I was six centimeters dilated already and feeling really good about maybe delivering this baby before midnight.
“I’m Nurse Nancy,” a short, mousy blonde woman announced as she took a seat at the computer next to my bed. I was busy breathing through my next contraction. “I’m on the 11-7 shift tonight,” she said a little gloomily.
Great. Where were the two perky, young girls with the dark hair, rooting me on and telling me what a strong woman I was? I wanted them back! Nurse Nancy looked like a downer.
“I called the doctor and he’ll be here in fifteen minutes.” Nurse Nancy said without any definitive tone to her voice.
“I need to push,” I said desperately.
“He needs to break your water,” Nancy said without looking away from her computer. “Someone was supposed to call him on the last shift. You’d have your baby already, but for some reason the call wasn’t put through, so he’s on his way now. The membrane wall is very thick. It’s not budging, even with those powerful contractions.” She seemed entirely uninterested.
“Hey! What’s going on in here?!” The doctor came busting through the door.
“Um, I’m in labor?” I said sarcastically through the panting.
“Yeah, I thought you went home?” He joked, looking at my chart. It seemed like in seconds he had his long knitting needle out and my water had broken all over the bed. What a relief. Now the real pain begins, from what I remembered.
“Get her other leg, Nancy,” the doctor barked in the nurse’s direction. She was still typing away and focused on her computer.
“Oh, I can’t, she said, half turning away from the monitor, “I have bursitis.” She rubbed her left arm.
“Well, what if you switched sides?” He looked like he couldn’t believe he was asking her that.
“But my keyboard is over here,” she whined.
It was like a bad sit com, the way the doctor looked from me to Rob, then back at me with an incredulous smile on his face.
“Rob, can you . . .?”
“I got it,” Rob said, and because he was so big and tall, he could reach over and pull back both my legs, while still managing a little peck on my forehead for courage.
“Push!”
I took a deep breath, bore down, and pushed. I felt something stir.
“Is the head out?” I asked Rob.
He was spewing pride and wonder, “Hon, the whole baby’s out. Great job. I love you.”
Already? I barely pushed! This was what all the waiting was for? Man! Oh, my little man, where was he? I wondered.
“Oh, and by the way, it’s a girl,” the doctor flung over his shoulder as he gave the baby to Nurse Nancy. I hope she could hold him, er, her, I mean, with her bursitis and all. I giggled a little. Robert laughed. We looked at each other. This was all so weird.
The NICU unit was rushing in and putting the baby on their little table.
“What’s wrong?” I sat up, felt a gush of something, but ignored it.
“Nothing. She swallowed a little mecomium, that’s all. They are going to pump her stomach and get her all cleaned up. Don’t worry. Great job. You’re a pro.” He patted my hand.
“Congratulations,” he said to Robert and shook his hand.
“A medical student is going to deliver the placenta. Do you mind?”
“No, I don’t care,” I said, peering around him at my baby. Another girl. Natalie has a sister. They are going to be best friends.
“Did you cut the cord?” I asked Robert.
“Sure did,” he said, staring over at the corner where the baby was being tortured it seemed like. Where was I for this delivery? I felt like I missed the whole thing.
She had a set of lungs on her, that’s for sure. Even with the tube down her throat I could hear her screaming, when a twelve year old boy who looked like Howdy Doody sat between my legs, ready to receive my daughter’s food bank. I sighed, remembering the herds of interns and medical students that my rheumatologist subjected me to, how I hated being their guinea pig, the one they were all taking notes on. I closed my eyes and waited for my chance to meet my daughter. I could see from my bed that she was pink. She had a mess of black curly hair, just like all the girls in my family. She was definitely bigger than Natalie. She looked absolutely perfect to me. Rob sat by my side and held my hand as we both watched her being rubbed with a blanket and wrapped up so we could hold her, see her, feel her warm little body. Stare at the little girl who almost wasn’t and I think we were both remembering when they told us she wasn’t going to make it, but we weren’t about to mention it to each other. Not on her birthday. Not after such a whirlwind.
She tried to look at me, even on that first day. It was after midnight, April 24, two days from my grandmother’s birthday.
“I want to name her after my Memere,” I said to Robert, who looked a little wet in the eyes. She was beautiful. I couldn’t believe I was the mother of two girls. I held her to my chest and smelled her hair. Yes, she was mine. She would trail after her sister and be a little spitfire, or she would be calm, mellow, a thinker. She would be who she was going to be, and I would find out that having two girls did not mean twins of each other. Sometimes they were so different they didn’t even seem like sisters.
I didn’t have an episode like with after Natalie. There was no emergency D & C. I wouldn’t wake up from a nap all stiff and broken. They started me back on my meds in the hospital and I was feeling great, arthritis-wise. The pregnancy drug worked the best out of all of them, I thought. Someone really ought to look into that.
There was nothing to be concerned about at all. I went home the next day. Natalie met her sister with pride. She was in love and showed Violet all of her things. Even Didi.
Violet was a dream. She slept through the night starting at eight weeks old. She was rolling over so quickly that people didn’t believe me when I told them. She was so quiet, she never even cried when she was hungry. She would let out a little chirp, like a baby bird, and I’d come to realize this was her way of saying she was hungry. She took long naps and four to five ounces at a feeding. This was a completely different baby than Nattie was. This baby didn’t shriek all night. This baby took great naps. She was quiet, engaged, and found a thumb early on so she never complained, just took the thumb and sucked happily, thoroughly entertained by her sister, who adored her from the start and never showed any anxiety or jealousy, just love. Both of their worlds revolved around each other.
Violet was crawling and standing and moving around the furniture by seven months. She learned amazingly fast. I was trying so hard to get Nat trained that summer that I didn’t come to find out that two was too young sometimes for the first child until she was maybe already scarred by it. I had to let it go. We also had stupidly tried putting Nat in a toddler bed, using her old crib for Violet. We had to scrap that idea when we realized Nattie was sleeping on the floor every night in front of her door. We borrowed my sister’s crib, put Nattie back in it that night, and she happily curled up with her baby blanket, Didi, her favorite lovey, and went to sleep as soon as she laid down. She was not ready for the bed at all and we had a lot of sleepless nights trying to make her ready before she actually was. You made a lot of mistakes with your first kid, I was starting to realize.
There were a lot of things that summer, moving into the fall that I should have come to terms with quicker than I did. Like the twinge in my left hip that kept reminding me that I have arthritis and it can’t be ignored. All of my other joints were cooperating. Not my left hip. It kept getting worse and worse. I was worried.
It was winter and I was carrying Violet down the stairs after her nap. Nat was pounding notes on the piano and it was giving me a headache. I shifted Violet to my left hip. She was getting heavy!
It took a full second for me to realize that I was slipping down the stairs. I let out a sharp shriek, as I tried to hold onto Vi. I was stepping down with my left foot and it was almost as if there was no leg there at all, it just gave away to a shooting pain through my hip and then Violet and I were falling. I was seeing the front door coming at me and there was nothing I could do except turn my body so that I fell on my back with Violet on top of me. She laughed in delight, thinking it was fun but when I started crying, her face crumpled and she started to tremble a little, finally sensing my fear, I think. Natalie came running into the hallway and was on her knees, feeling me and Violet with her little hands, starting to cry, “Mama, are you all right? Mama? Violet? Are you all right? Did you fall down? Let me see!” She said all the things I say to her when she gets hurt. She was doing all the things I do when she is in pain and crying. I could not stop bawling. It hurt so badly. I can’t describe it. It could have ended so badly.
Vi got up and crawled away. Nat stayed at my side until I could sit up, until I could catch my breath and speak.
“Violet, are you all right?” I called shakily. She was already plopped on the couch, sucking her thumb and looking at the TV. I knew she was fine, but was I? The pain in my hip was relentless. My elbow and wrist of my left arm throbbed. I couldn’t get my head around what just happened. My back, oh, ow, my back hurt really bad.
When I finally recovered enough to get up, I limped over to the living room to check on Vi, then settled them both on the couch and limped to the kitchen to make juices and snacks for the two of them. I then got on the phone first to call Robert then Dr. Churchill.
X-Rays and MRIs revealed no cartilage left in my hip joint at all and I was left wondering when this had happened. I was referred to a surgeon at Brigham and Women’s Hospital in Boston for a total hip replacement consultation. He explained that when I fell, my hip bones had experienced a slipping, my leg buckled and I fell.
“How old are you?” He asked in his crisp, British accent.
“32.”
He surveyed my face with his pale blue eyes. I saw it. The pitying look I detested so much. He tried to get it off his face before I saw it, but it was there and then I shrank. I wanted to run away. Run? Huh. I would never run again.
“You have two daughters?” He said it like, “doe-ters.”
“Yes. They are two and a half and eleven months old. I have a whole system set-up for my recovery. Friends and family are going to help my husband with the girls. My mother will help him with me until I am back on my feet again.”
“Were you injured?” He asked me.
I looked up, confused. He didn’t know.
“No. I have had Juvenile Rheumatoid Arthritis since I was about twelve.”
There it was, more fully, undisguised pity. I looked away from it. Don’t pity me, I’m fine. I knitted my brow into a frown, narrowed my eyes, raised my eyebrows and stared at him.
“Well, I hope I can fix you up, so you can get around with those two babies, then! Right-o, see you next month,” and off he went.
I drove all the way home wondering if this was the right decision. I was going to have major surgery with two babies in diapers. Was I crazy?
Well, what choice did I have? I had to get on with it so that I could do more with my kids as they got older. I didn’t want to face the alternative. I set it up so that my sister took the girls while I had the surgery and during my stay in the hospital. It was all going to work out perfectly except I didn’t plan on Violet reaching some huge milestones that week.
I scheduled my surgery for about a month before Violet would turn one. She learned her first word and she was calling my sister “mama” by the time I got home with my new hip. It broke my heart when she saw me for the first time after my surgery and went howling back into my sister’s arms as if she didn’t recognize me! I was sobbing. That’s when my sister put her down and I saw Violet hobble over to my mother. She was walking! Tears slid down my cheeks. I had weeks of recovery ahead of me, I was in complete and utter agony, and my baby had learned to walk and talk in a matter of days. And she no longer considered me her mother! Everyone around me was looking at me as if I was an egg about to crack when all of a sudden, Violet turned around, and as if seeing me for the first time, her big, brown, chocolate eyes filled with tears.
“Mama?” She asked, and came running, and I mean running, over to my chair and into my arms. I scooped her up, laughing and crying as she bawled into my chest.
“It’s okay, baby, Mama’s here,” I soothed, stroking her soft, fine hair, and calming her the way only I can. In minutes she had found her thumb and I was rocking her, singing her favorite song, “Twinkle Twinkle Little Star,” and she was fast asleep.
I held her in that chair until sometime after midnight and no one disturbed us. I recalled her birth and how I didn’t have a chance to hold her right away when she was born. She didn’t get to hear my voice and be soothed. I didn’t get a chance to see and feel and hold my prize after all that pain.
People are amazed when they hear that Robert and I made it through total hip replacement surgery with two babies in diapers and we aren’t divorced yet. Most couples would break under the pressure we’ve experienced together, but for us, it only makes us stronger.
When I think about the pain I’ve endured, and the agony still to come for however long I live, I’ve come to think of my husband and my two daughters as the prize I’ve earned for enduring it all, bearing up, being strong. They keep me going and make it all worth it and I do everything I can to make sure they know I appreciate it and that they all feel how much they are loved and cherished every day that I am blessed to be with them.