White - Picket - Fence Syndrome

Shedding Skin

2010-03-01T11:19:00.001-08:00

I’m thankful for my local coffee shop today – to be able to sit – away from mommyhood – in an environment that makes me feel more like a person than a mom. Why do these two things seem so separate in my mind – me as a person, and me as a mom? Why can’t the two co-exist harmoniously? I feel split and lost with two identities. I know what I should be as a mom – what I thought I would be. A mom that’s on top of things – putting my children first – doing absolutely everything to make sure they don’t suffer in ways I did – to make life better for them – to educate myself – to push them and to ease up on them – to be loving above all else – to live for them.

And all of that depresses me. Spending my afternoons with only a sink full of dishes to clean, toys to put away, and fights to squander, makes me feel empty, lost, alone, and uncertain.

And yet, before I got married, before I had children, those very same feelings led me to believe that I was ready for motherhood – that I was done trying to fill myself up with career, wealth, and self satisfaction. Those things – of being in the city, modeling clothes for catalogues, and meeting friends in bars, fell short of “completing” me. So to the country with my new husband, and new baby in my new belly, I went. Off to a new home, in a new town, with new people to live a new life. I couldn’t wait. I was ready.

During that transition my former self melted away. There was a crossroads at one point. Funny how when a personal crossroads is depicted in a novel or film, it seems so obvious that this is THE moment of decision. Yet, in real life, I find those crossroads come and go in a blink of an eye. The decision made is only contemplated in detail until very much after the fact, and when all has already been set in stone.

I made that quick decision when my first born, Grace, was only 5 months old. I was solely nursing her then, and she was what the pediatrician called my “happy spitter”. Grace was constantly spitting up, or rather, she was gagging and choking on her spit up, before finally hurling pretty much everything she had just consumed, all day and all night. There was nothing “happy” about this, and caused me perpetual panic that at any moment she could choke to death. Therefore, I obsessed that she always be propped up at a 90 degree angle – creating a head rest on her changing table, and in her side sleeper – making sure her stroller, and car seat were always at an angle and never laying too far back. She was always in a bib, and I was always in my pajamas. It was winter – she was small – we stayed in a lot.

During one of these afternoons, while I was watching The View as Grace vibrated in her bouncy chair, one of my Ford bookers (model industry slang for agent) called asking me if I could make it into the city for a 2:00 go-see (again, model industry slang for appointment). I was requested by the client. Technically, this was not out of the question – and today, if I got the same call, I may find I would somehow spring into action to get myself there. Maybe. But on this day – being a first time mother – well, I laughed aloud into the phone receiver. My booker, Caroline, 28 year old single and child free Caroline, did not think it was funny. “What’s the problem?” she snapped.
“There’s just no way I can make it there by 2:00” I said.
“Why not,” she challenged me, “you’re only what – an hour or two away?”
“Yes,” I said, and sighed, and tried to figure in my head that getting my daughter dressed would take at least 45 minutes, since she abhorred being put into clothing and fought fiercely against it – and my God, what if she’s hungry on the way into the city, I’ll have to pull over and nurse her – but where? And then she’ll spit up and do that choking/gagging thing, and I’ll have to pull over to clean her up, and lean her forward – and shit, I haven’t even brushed my teeth today!

Instead of trying to explain all this to Caroline, who I knew wouldn’t understand or care, I simply said, “Caroline, I can’t explain why I can’t go in today, but in the future I’ll need more notice for go-sees in the city.” And that was the first change in me – to say that aloud to a booker – for part of a model’s job is to be available at a moment’s notice, and to never complain about it, because you risk never being called at a moment’s notice again.

But Caroline did call me again – about a month later, because Tommy Hilfiger (the brand, not the man himself) was doing a plus-size campaign and they put me on ‘hold’ for a job that would be shooting in Los Angeles. Clients like Tommy Hilfiger put a handful of girls on ‘hold’ for one job, and would decide at the very last possible moment who they would actually book, and then release the ‘hold’ on the other models. But still, I needed to confirm the ‘hold’, and confirm that I was available for the job if chosen. My first impulse was to say “yes”. And I did. I told myself I’d figure it out somehow – maybe bring my mother along, have her watch Grace while I was shooting. But the reality of that idea quickly set in. I remember talking it out with Michael while in Gracie’s room – I was rocking her to sleep – Michael was standing by her changing table. I’d be responsible for my mother’s plane ticket, which money I would get back from the job, but I couldn’t separate myself on how I would shoot for 3 days and mother/nurse Grace at the same time. I’d been on shoots before where I wasn’t given a moment to eat or go to the bathroom. Really, as a model, most clients treat you like a piece of furniture – a prop – and you need to be ready, and available to do what they want, when they want you. And it’s best to be quiet when doing so. I was a good model in this regard. I was known for not making a fuss, for being “professional”. How could I ask the clients – the photographer – to stop shooting so I could nurse my baby? I didn’t think I could possibly pump enough for my mother to give Grace a bottle. And what would the plane ride be like? How would Grace sleep with the time change – how would I? I couldn’t believe I was so freaked out – to the point of turning down my ‘hold’ status.

When I first started getting work as a plus-size model – real work for good clients that paid well – I worked alongside a “seasoned” girl who had been in the industry for what seemed forever. She was known as a successful catalogue girl who made great money. She was now married, and had one child. We were changing in the parked location trailer in New York City, talking about work, and the industry, when she told me about a $15,000 job she had just turned down because it was shooting in Japan. She explained that she just couldn’t travel that far away from her child. I nodded my head as if I completely understood where she was coming from – as if what she was saying made perfect sense to me. But really, in my then 26 year old mind, I was shocked and dismayed that she would turn down such a great opportunity, that at the time, I was striving for. I told myself that I were ever fortunate enough to get such a job, I would never turn it down, no matter what.

But here I was, sitting in my cushioned rocking char, cradling my soft, sleepy baby in my arms, deciding with my husband that the job in Los Angeles – the job that was paying a couple of thousand dollars we desperately needed – wasn’t worth leaving my baby for – wasn’t worth trying to juggle motherhood and modelhood. I was sticking to my decision – the decision I made when I moved out to the country with my new baby in my belly – that I was a mother now.

Caroline read me the riot act when I told her my decision. She went on and on about the other girls she knew who were mothers and still traveled for work. She was clearly disgusted with me. I never heard from Caroline again. My main booker and my friend, Garrison, would call me now and again concerning potential work in the city, but nothing panned out. Not too long after, I got pregnant again, and all was set in stone. I got what I wanted. I was a full time, bona fide, mom. I just didn’t know I would miss my old self, my model self, my city self, and my career self, so much. And these parts of me are my “old” self – not who I am now. I can’t go back. I’m not sure who I am right now, apart from being a mom, and I’m not sure how to move forward.

And now, as I sit in this coffee shop – me and my notebook – with only 30 minutes to spare before I need to pick up Rose from pre-school – Grace now in the 2nd grade, I’m stunned how motherhood hasn’t completed and filled me the way I imagined. I’m stunned that I fantasize about modeling again, and taking off to the city to be dressed up, made up, and propped up. I’m stunned how quickly my former life ended, and how quickly the future arrived to a place of questions and dissatisfaction that feels so familiar. I’ve been here before – so I can’t help but understand that I will be here again. Will I ever be completely satisfied with myself and who I am? Will I always be okay for a while until the moment strikes and I find I want more – to be more – to do more – to grow more? The only mainstay – the only constant that pulls me through – is me sitting in coffee shops, scribbling words into notebooks.

Limbo

2009-09-14T07:08:00.000-07:00

Sitting on the couch, with Rose sleeping next to me, all cuddled up and cozy under her blanket. The peepers peep as the wind sweeps at the leaves on the trees. It’s a calm moment – a quiet moment – after a very busy, stress filled three week period of time. It’s the hustle and bustle of all – of new things happening – of energy reawakening. This time of year always throws my memories back to my college years. I loved college. I loved those first months – of wearing long jeans, rediscovering black eyeliner and leather jackets, after a summer of feeling clean and free. I loved pounding the cobblestone sidewalks of Boston, feeling the weight of my backpack on my shoulders. I loved holding hot cups of coffee - sitting on a stone step - feeling the bright fall sun sting my cheeks. I loved being away from my parents – finally delving into a life of my own. It was truly glorious. I never longed for what was. I never wanted to go back to high school, or middle school, or god forbid, elementary school. I liked college. I never imagined that when I had children, I would be forced to relive my primary schooling years. It’s like a nightmare come true – you know the one – “would you ever go back to school, knowing what you know now?” NO!!! Are you crazy?!? The only reason I survived high school, and all my schooling before that, was because I didn’t fully realize or appreciate the true horror of it all. It felt wrong, and scary. But I didn’t know any different. I hadn’t yet been to college. Only then – when things felt right, and free, and liberating, did I fully appreciate the hell I’d been living in. But now, here I am, completely aware and knowledgeable of how utterly terrifying and difficult it is to be a child in school, and I have to witness and endure these rough waters of emotion in my own children. Well, I should be clear – with my one child – my oldest - who has fought the transition from leisurely summer days to strictly scheduled school time, since her first day of pre-school. It’s not pretty or easy. And it eats at me every time I have to drag her out of the house, into the car, screaming and fighting, and force her into an environment I can’t blame her for not wanting to go into.

As time moves forward, and I brace myself each morning for an unpredictable roller coaster ride, I feel my strength crippling. For the first few days I roll with it pretty well. I’ve been doing this for five years now. I recognize the pattern. She’s going to fight, scream and pull at every emotional heart string. My husband and I will remain stoic and determined not to give in. We’ll drag her to the bus stop where she’ll finally calm down as not to embarrass herself in front of her friends. And she’ll be fine once she’s in the school. After a month or so, she’ll be (mostly) fine with going all together, at least until the winter break, and then we start the process all over again. Although I remain strong in front of Grace, when I am alone, after she has left, and the house is quiet, the emotional exhaustion and doubt overwhelm me. I become guilty that I can’t afford private education – because for some inexplicable reason, I’ve convinced myself she wouldn’t hate school if it were private. I then beat myself up for not home schooling her – for not committing to her the way I should. I forget how shy she is, and how easy it is for her to retreat into her own world. I forget that forcing her to socialize is actually very positive for her. No, I just torture myself with the negative, and all I want to do is crawl into bed and hide under the covers. I don’t want to go out – or get dressed – or feel good. My child is at school, miserable – so I must be miserable too! So when some friends invited me to a night out at the movies during the first week of school, I immediately cowered from the idea. Maybe I should force myself to get out of the house? But I can’t. I’m exhausted. I need my strength for the next morning. Because I don’t want to yell at Grace, “just stop this shit already and get dressed and go to school. I am sooooo sick of this.” And if I’m overtired, I may say just that. And I’ve learned the hard way it doesn’t work. For me, as a mother, in order not to completely lose my shit ALL the time – I have to preserve my energy.

When I told my friend I wouldn’t be joining her and the others at the movie, she snapped, “Alice, just get out of the house.” She said it as if she were mad at me for choosing to stay home. And maybe she should be mad at me. Maybe I say “no” too often. I am a homebody. If I’m undecided if I should stay home or go out, I stay home. I don’t know if this is right or wrong. I don’t know what it says about me as a friend, or a mom, or a wife. But it’s where I’m at right now.

These past three years, since Rose’s arthritis diagnosis, have been like living in a cave - a cave of huge disappointment and uncertainty. It’s aged me - a lot. It reminds me of those early days, when Grace was just an infant, and we were packing up for our first overnight away from home. I can’t recall where we were going or who we were visiting, but I do clearly remember being exhausted by everything we felt we “needed” before we traveled with our small baby. We made certain we packed every kind of medicine, diaper cream, specialty cradle cap shampoo, and baby powder. We had extra diapers, at least a dozen onesies, baby hats, little socks, bibs, pacifiers, and some shoes she never kept on her feet for more than 30 seconds. And of course, we needed to bring along the entertainment of rattles, books and toys. This was all just for the baby. Now came the daunting task of packing for ourselves – and all the breastfeeding apparatuses, and bras, and tops I “needed” to have with me. By the time we drove out of the driveway, hours and hours behind schedule, we looked as though we were going cross country. I remember feeling sick to my stomach as I watched our house - our safe haven - fade into the distance. This was the place I could freely hang out in my pajamas until late afternoon - smeared with spit-up and un-brushed teeth. I just cooked, and rocked, and nursed my baby, forgetting about the world that existed pre-baby days. My husband and I wondered “will it always be like this – how will we ever survive with two babies?” But in time, this stress of packing our life for a trip melted away – well, at least a little!

Just a few weeks ago, we managed to get out of bed, pack, and get on the road for an overnight in less than two hours. My husband and I didn’t even fight! Of course, this doesn’t include stopping for gas and parking the car to find out why the DVD player was busted – for we do truly “need” that for a long distance drive. None the less, our initial pressure and neurosis of having a new born have matured. We can handle these situations with out feeling as if the world is on top our shoulders. But when it comes to being a family - of taking care of two children and a chronic disease - of figuring our way through the maze of doctor appointments, health care costs, and decision making, on top of all the “usual” stuff, my husband and I are still in the infancy stages. In some respects, we still feel as though we’re carrying around a newborn – packing for our first trip away. We have yet to fully mature from this stage – to where we can handle things better, do more, and fight less. And until that happens, until I gain more strength and know-how, I’m content keeping still at home, and close to my family. Otherwise, I’m stressed out. Because as of now, I’m still just floating along. But hell, at least I’m not sinking! And someday, at some point, I plan on swimming again – right toward that same feeling I had in college - of being invigorated, inspired, and ready to take on the world, but this time, instead of carrying a backpack upon my shoulders, I have my family.

Waves of Friendship

2009-08-17T07:48:00.000-07:00

I’ve lost my dear friend Olive…to the workforce! She was my “stay-at-home-mom” friend, even though she lives in another state. But it felt as if we were sitting at my kitchen table together over coffee, as our phone conversations hashed out the details of our marriage life, financial woes, and hardships of mothering children under the age of six. We shared recipes, took weekend trips to visit one another, and admitted those “bad” mothering moments, and also shared a few while trying to talk to one another on the phone.

Olive and I met in college. We were alike in the boys we craved – irresponsible, self-indulged artist types, who were very cute and fun to frolic with, but didn’t make for the best in “boyfriend” material. Without planning on it, we both lived and worked in New York City after college, and eventually became roommates. That relationship didn’t work out too well. I never realized how orderly and neat she was, and in respect, she never knew how un-orderly and, well, let’s call a spade a spade, messy I was. We began to bicker over petty things as our lives moved in different directions. I was leaving my full time job to freelance and chase my “dreams”, while she was becoming more serious about her corporate career in the fashion industry. Eventually, I got a boyfriend and retreated into his world, and away from “our” world. For until then, before we decided to live together, Olive was my “go-to” person. She was my weekend partner - my let’s meet at a grungy bar and drink till we can’t see, while pining away for grungy band boys, friend. But as our lives spun forward and away from our shared territory, into new and foreign places, our relationship lost its common ground, and became unsteady.

For a while, these differences almost ended our friendship. It certainly ended our roommate relationship. But as time passed, so did our anger and bitterness toward one another. In some cases, time can heal all wounds. For us, this fact was true.

After a long while apart, I met up with Olive at her new apartment, and as she opened the door to greet me, with a new haircut and bubbly smile, we hugged and kissed. We just looked at each other awkwardly and Olive finally blurted out with simple logic, “it was just petty stuff we fought about – let’s just forget about it.” I was so relieved and happy to move forward again, although it took a few years before we felt back on track. As we matured, we were able to let petty things lie, and reignited the friendship we once had. But this time we weren’t meeting for drinks after work, or going to see our favorite band. We were moving into the suburbs and country side, having babies, and staying home to mother full time. We understood the gravity of these changes in one another’s lives because we knew each other “back when”. There’s something easy about those friendships - of not having to explain who you are and where you came from. There is also a kind of fragility to our friendship that I think we both understand and respect. Since we almost lost it once before, we’re careful to not let that happen again. We’re kinder and more open with one another, and less judgmental, and therefore more honest. Olive knows who I really am as a mother and wife. She knows the layers in my life. And she’s there to help me navigate the negative with the positive. As she was “back when”, she is now again, my “go-to” person in this life called motherhood. But as of last week, Olive has left my kitchen table of conversation.

Olive has joined the other team - the full-time working mother team. She was uncertain about it. But the uncertain economy prompted her and her husband’s decision to give it a shot. When she called to tell me she got the job she was hoping for, I felt like I was about to lose my dear friend all over again. Here we were, like we once were out of college, a friendship built on similar interests and lifestyles, threatened to be undone by the tidal wave of life pushing us in opposite directions. As Olive acclimates to her new office, boss and wardrobe (so jealous), I’m only becoming more involved as a stay-at-home parent. I volunteer weekly at my daughter’s school as a reader, and teach her Catechism classes. And without Olive home to call on a whim when I desperately need a shoulder to lean on, or a sarcastic joke to laugh at, how will we ever stay in touch?

I left Olive messages during her first week of work, letting her know I was thinking of her, and hoping the transition wasn’t too difficult for her or the kids. She called me back to tell me how great it was all going. She found a good friend with kids the same age as her two boys to baby-sit, her husband is helping out with the house chores more than ever, and she’s thrilled to be wearing real clothes, and be done with her jeans and cotton t-shirt “mommyform”. Olive’s successful transition into this other realm of working mommy land, has me feeling a little insecure about myself and my decision to stay home full time.

It is a financial sacrifice for my family to have me stay home. Some days I wonder if the sacrifice is worth it. And other days, I’m certain it is. I secretly hoped there would have been a little chaos attached to Olive’s transition, so I could at least say, “oh well, glad I don’t have to go through that!” Instead she’s thrilled. And I now have a friend who has outside stimulation, unrelated to motherhood, that I constantly crave. I’m also scared of losing Olive again. Her life has changed. Our conversations won’t be based on so much similarity. She now has a daily existence that is foreign to me. Will the fact that she’s decided to work, and I’ve decided to stay at home, begin to interfere with how we relate to one another? But then I remember something important. Olive and I, more than anything else, are both mothers. No matter what happens in our lives, we will always be, first and foremost, mothers, just as I hope, we will always be friends.

Sitting Still

2009-08-03T10:42:00.000-07:00

Sitting on the deck in a lounge chair, listening to cheerful birds chatter as the soft wind whistles through tree leaves. Across the lake someone is playing Celtic music - just the flute playing – soft, mournful and simple - echoing off the mountains - hugging the lake with a sound of despair and hope mixed in a maze of sweet melody. The wind carries the lake water to the beach, as it gently licks the shore. The clouds above the mountains are grey and still, hovering like a crowd of people waiting for something to happen. But the clouds know better. Only they can make it happen – the outpouring and release of rain is up to them – only they decide when to crack open and spill all that has been held with in.

It has been the summer of rain. The clouds unable to retain much – always spilling out onto the land. And the days that do remain dry, carry a wind that is slow and wet, the clouds threatening to crack at any moment. It feels as though the earth is mourning – mourning for the spirit of a people that are broken – that hold onto hope and optimism – but who are cracking on the inside. I feel I need to take my cue from the clouds and stop waiting for something to happen. I must spill what remains in my cracked spirit – must spill the sorrow, hurt, shame and fear. And only when the last drop has been purged from the very depths of my soul, only then, will I begin to heal.

The flute music has stopped. The wind is still. All that remains is a cheerful chattering bird, and the heavy clouds.

The above entry was written two weeks ago while vacationing at my parent’s lake house in New Hampshire. This was only a few days after I wrote my first blog entry. When I first decided to start a blog about my daughter’s illness and its effect on my family, it felt uncomfortable and terrifying. But now that all is up and running, it actually feels more freeing. I was so afraid. I don’t want to whine and cry, and appear as though I’m feeling sorry for myself. Just now, I was web surfing through some JRA websites and support groups. One site had a young adult, in her 20’s, respond to some parents’ posts about their children’s arthritis. She was very adamant that the parent’s not make their kids feel like victims. They are much worse diseases one could have, right?

That’s what I kept telling myself when Rose’s Leukemia tests came back negative, and what was left was the clinical diagnosis of JRA. I told myself that I should feel fortunate - that this is a disease she can “live” with. I kept telling myself, “I can do this”!

I denied my grief. Instead, I got angry. I got red hot angry. I took it out on people at the health insurance company, a few administrative nurses, my husband….myself….my children. I would explode into rages - rages that would spin into thrashing, screaming fits. I was twisted inside. Who the fuck could I blame? But wait, I am lucky. This could be worse…

I watched The Secret. I talked it up to friends and family. I believed I could believe in it. It seemed easy. Just be positive. Just be grateful. Remind yourself what you are happy about. So I did. With a vengeance, I would look outside and try to feel happy about my house - my quiet, friendly neighborhood - my beautiful, gentle girls - my caring, sweet husband - my parents (that despite our rocky relationship) who really do love me….oh, I AM grateful, damn it! Then the rage would start. Because I wasn’t grateful. Because even though arthritis seemed like the “good” disease to get, if you were to get one, I didn’t want it. Actually, I did want it. I do want it. I pray to God everyday to give it to me. Take it away from Rose and give it to me!!!! I wanted a healthy child. I wanted to worry about sleep training and what dance class to sign up for next - and how to clean the dishes, and serve dinner, and get a load of laundry done, all in one day. I wanted those mindless worries that angered me when I would hear other mothers’ complain.

Then I tried to feel grateful that because I have a child who suffers, I now know better than to worry about such petty things. Fuck that! Give me the petty stuff. Take away the arthritis. Give me a healthy family who isn’t sinking in health care costs, whose marriage isn’t cracking under the stress of it all, a mother who’s not losing it….

I wanted to believe in The Secret. Amazing how we can fool ourselves in times of stress. I’ve always been one to outpour my “authentic” self. Why did I think, during a time when it was most needed for me to purge, that I could hold it all in? And then I went to a Memoir Festival at the Omega Institute in Rhinebeck, NY. One of the featured writers, Abigail Thomas, read excerpts from her memoir, A Three Dog Life, describing her marriage with her husband after he got hit by a car in New York City, suffering a severe brain injury. She wrote about taking care of him. She wrote about the pain of it. And then Malachy McCourt appeared, so Irish and sweet and sparkling, and he started singing an Irish lullaby, after telling the crowd how ill his brother Frank was, and the entire crowd began singing along with him and I started crying. No, not just a whimpering, but an all out Oprah labeling “ugly” cry. And I didn’t stop. For two days, I kept crying and writing. And when I stood up to ask Abigail Thomas how to write about someone suffering from a sickness with out sensationalizing it, I started to cry mid-sentence. I couldn’t even get the words out. I am a big, fat, black cloud. And I can’t stop spilling. And I can’t pretend to be so positive anymore. Because I am so scared. And I have never felt more vulnerable and uncertain. And yet, since I’ve started to spill, and since I’ve started writing, I’ve also never felt better.

Kitchen Dance

2009-07-27T14:12:00.000-07:00

As Rose and I skipped happily down the Wal-Mart aisle, we spotted my husband grabbing a box of her very favorite yogurt coated granola bars. Immediately Rose’s skipping energy heightened, as well as her voice as she sang excitedly “hooray—let’s get granola bars—ga-ga-granola bars!” At that moment, an elderly gentleman walking by us mumbled from out of the corner of his mouth “that’s what they mean when they say energy is wasted on the young.” I gave him a friendly chuckle, and kept on my merry way, but something in his words made me uncomfortable. Mostly, I didn’t like the word “wasted” being attributed to my bright, sun-shiny, little girl. Rightfully, my daughter was overly excited at the prospect of buying granola bars. However, was her exuberance in Wal-mart, skipping and laughing, waving her hands in the air, a complete waste? Her happiness certainly made me feel happier, as well as my husband, and anyone else walking by—minus of course, the bitter old man. But his statement made me think—what does happen to all of our youthful energy as we grow into adults? Does it just disappear altogether? Or do we simply have to work harder than a four year old to re-discover it?

Since my 35th birthday, three years ago, I began to notice my age, along with all the clerks in every liquor store, who from that day on, no longer felt the urge to card me. I don’t even get that second glance—or subtle hint of doubt. The only question I get asked is “will that be credit or debit Ma’am?” Got to love being called Ma’am! I’ve also noticed that a leisurely walk is impossible if there is any incline of any type involved. And some days, a long stretch in the morning will do me in, pulling my neck out for at least a week. Could I exercise more to take care of these aging ailments? Absolutely. But there was a time in my life when my “energy” got me through these physical misfortunes. A time when I could skip around town with friends, stopping to get a slice of pizza at 2:00am without worrying about the heartburn that would plague me all of the next day. So what happened to my youthful energy? I still go about my day, busier than ever, running on something. While schlepping between doctor appointments and swim classes, strapping and un-strapping those god-awful car seat contraptions—and running up and down the stairs with laundry baskets, cooking dinner while sweeping the kitchen—I am painfully aware that my life, as I see it, takes a heck of a lot of energy. So the energy is certainly there, it’s simply how I chose to use it that counts. So instead of walking by a child jumping excitedly, I shouldn’t fret that I no longer have that energy—I should fret that although I still have it, I am simply misusing it!

For instance, if I hear one more mom talk about shopping like it’s a four season sport, I’m going to scream! Figuring out the maze of stuff in those factory warehouses now called grocery and department stores, sucks energy blind. And yet it seems to be a competition among moms on who can gain the most in shopping—keeping score of how much was saved and spent like an Olympic event. I believe our energy for life is lost, not gone. And I am just one of many guilty adults. How many times have I shaken my head at my own girls, when they ask to be picked up to climb the monkey bars (while dangling from my shoulders), or insist I push them higher, “higher” on the swing, and thought to myself, “I just don’t have the energy.” Then one afternoon that moment came along. Chicken was cooking on the stove (once again), while I searched frantically for a vegetable to prepare, thinking ahead on how Michael and I would accomplish giving Rose her weekly injection, and both girls a bath, before bedtime. Grace and Rose came giggling into the kitchen, immediately stressing me out for I was afraid they wanted to “help” and turn my kitchen into an experimental cooking class. But Rose just simply looked up at me and sweetly asked “may I have this dance?” Without hesitation, I decide to shut off the stove, and my mind, as I took both my daughters’ hands in my own, and enjoyed a dance in the kitchen. I know I have it in me. I just need to see a small child jumping excitedly over granola bars in the grocery store to remind me.

Shame

2009-07-26T11:01:00.000-07:00

The sound of “mommeeeee” feels like a knife stabbing me in the eye. I’m trying to be patient – remembering how Rose is this whiney and needy only because she had a total of four hours sleep last night – which equals the exact amount I had. We haven’t had a night this bad since Rose was first diagnosed, at ten-months old, with Juvenile Rheumatoid Arthritis. But then, she was just a baby, whining and crying, like babies do at night. Now, at four, she’s a little girl, rubbing her hands, crying in pain, stretching her limbs, trying to rid herself of the deep ach she feels. Usually she whimpers and stirs in her sleep – stretching and rolling about our bed until she snuggles her tiny round head between my breasts, taking her small hand and rubbing it up and down, up and down, on the upper portion of my left arm – a habit she acquired the day she discovered she could move her arms at all. It started while nursing. She would look up at me with her hazel brown eyes, her pudgy little fingers rub, rub, rubbing my arm, every now and again pausing to give me a tight little squeeze. In the winter months, she’d muscle her hand up my shirt sleeve until she found skin. And now, as she continues this skin to skin mantra, I quietly pat her back, a substitute for the nursing that has since ceased. I will pat, pat, pat; until I feel her body relax, somehow untangling from its familiar chronic ache, and finally fall back into sleep. But last night her pain struck with a much mightier force. She slept for only an hour before she rose with a cry and then came stumbling out of her bedroom toward Michael and I on the couch, her little face scrunched up and looking angry. I cradled her in my arms, held her head close to my chest, and tried humming and rocking her, but she couldn’t sit still. She just keep whimpering and kicking her legs, stretching her arms toward my chest, looking at me as if to say, “Why have you done this to me - and why won’t you make it stop?”

One of the first things I said to the Rheumatologist after Rose’s diagnosis was, “I don’t understand how this happened. I’m a nursing mother.” It was a raw emotion – that came from a place within me that foolishly believed my breast milk really was powerful enough to fend off such disease. Why else would I suffer breasts that felt and looked like two boulders atop my chest - the cracked, infected nipples - and then the thrush and clogged ducts? Why else did I commit so fiercely to feed my child from myself, from my own body, if I didn’t somehow think it was a miracle food? The Dr. looked at me confusingly and simply said “this is in no way your fault, you did nothing to make this happen.” I’ve heard versions of this sentiment from nurses, pediatricians, and physical therapists, over the years. But as any decent mom knows – our guilt is not made of sound logic. It’s just a gut feeling - a natural intuition that goes back to the time of Eve biting that fucking apple – that all is our fault. And I am no fool. I can read and observe people pretty accurately. I’m a writer for God’s sake – observing and analyzing is my hobby. I can see the look in other mom’s eyes – hear the little voice in their heads – trying to sum up what I did wrong to make this happen and how they can avoid such a fate. Some not so subtle moms will blurt out questions like, “so, how did Rose get this – did she get it from you…?” That was fun play date. Because you see, the blame is also as natural and illogical as the guilt.

And the answer is yes; of course I think she got it from me. Rose is from my gene pool. She looks and acts just like me - unlike my six-year old Grace, who came out with her father’s head attached to her body. And just like my husband, Grace is quiet, reserved, neat and analytical. Rose, like me, stumbles about the house clumsily, leaving trails of messes and play behind her - talk, talk, talking all the while. So yes, my gene pool, of having relatives with other autoimmune disorders – my defected, mistake of a gene - infected my baby girl. I must have known this, on some subconscious level, for the moment I knew I was having another girl, I named her Rose. I didn’t do this with Grace. With Grace, Michael and I flipped through a dozen baby name books, wrote different versions of different names in notebooks and on paper napkins at restaurants. We finally settled on two choices; Chloe or Grace. We agreed to make a final decision on her birthday, when we would finally meet her in person.

Grace arrived peaceful and quiet. She was calm and still as she curled up in my arms, her large almond shaped eyes so serious and serene. We knew immediately that she was our Grace. But with Rose, I hardly opened up one name book. I always knew she was my Rose. My grandmother once asked me when I was still pregnant, “why Rose?” She said Rose like it didn’t settle right on her tongue, and I could tell she wasn’t happy with the name. “I don’t know” I said, “I have just always loved the name.” I wasn’t sure why I liked the name so much, and always believed the name called to me, and this little soul inside me, more than I called to it. I now know this feeling to be bitterly accurate, because Rose is, as the flower, so very strong and beautiful, yet fragile and vulnerable to sickness.

“Roses are so hard to grow and take care of,” I recently overheard a woman in the grocery store check-out tell the cashier, “they’re so susceptible to disease”. And my heart panged at these words. I felt sick to my stomach. “It is my fault” I thought, “I should have never named her Rose…”

Roses are hard to grow. They are vulnerable. They are hard to keep healthy. They require work, care, medicine, love, and appreciation. And today, as I hear my Rose moan from the vulnerable opening of her soul, “mommeeee” – my very tired self realizes that to grow my Rose takes a strength and perseverance that most days, I don’t believe I have. Because you see, in my own garden, I don’t bother trying to grow roses.