Search for a cure.

I actually read the front page of the paper today, drawn to it because of an article on MD Anderson - a mecca of sorts for cancer patients. Part of me was excited to read it, to learn of it's hopeful research and treatment, and part of me was fearful I'd learn of something experimental for hemangiopericytoma's that we had missed out on. In our research we heard mention of MD Anderson when we pressed for places that might have something experimental that was promising and while we wanted no one else to be plagued with the same disease, when it comes to a rare cancer, misery loves company - only for the simple reason that with disease, numbers mean funding and research. We knew MD Anderson had multiple cases of hemangiopericytoma (He - man - geo - peri - cy - toma) and that alone made it an alluring destination for a fresh set of eyes and ideas. But it wasn't an option. We had phoned them, I had a list of all of the reports and scans needed, but you cannot go unless you're a certain number of months between treatments and you cannot go while on any sort of regimen. The most excruciating aspect of the actual fight against cancer is the obvious: Time. And when you're fighting for your life, the thought of refusing treatment in order to attempt something else further down the line is a gamble with death. Pure and simple. I had spoken to the NIH, had information on trials, we went to Dana Farber in Boston for an opinion and MD Anderson was on my wish-list. Forget about the question of what you'll do about work, where you'll live or how you'll go back and forth to Houston, the concept of what might be there was worth it. The article was inspiring because it's entirely devoted to all things cancer, and they are at the forefront of critical research. It was also devastating because it acknowledges that there is yet no cure and positive results often mean extending one's life by months.

I was desperate to find a cure for Alan's illness. I would have gone to the ends of the earth to stop it's progression. And that is another struggle - you become obsessed with research and the quest for an answer and it occupies every sleeping and waking moment. Just the other day I used a purse I hadn't used in over a year and on a piece of scrap paper inside, was the name of a drug. Obviously I had read about it somewhere and written it down - the kind of note taking that becomes second nature when you're searching for any port in storm. When I came across it for a moment I worried I had neglected to look it up, to find out about it's potential for Alan - but I let it go, trusting that had it been an option, it would have been explored. Whether Alan would have benefited in Texas or not, I'll never know. Thankfully, what I do know, is that doctors talk. They exchange notes, share findings, and gather at conferences - Alan had excellent doctors thinking out of the box so I have to rest assured that no stone went unturned. We ended up at MSK because we were told that there was technology there that he needed that Columbia Presbyterian did not yet have. It took a selfless doctor to admit that, but thankfully, he did. Sadly bureaucracy and funding can limit even the finest hospitals.

I remember Alan cracking a joke during a visit to the radiation oncologist, having to do with Ted Kennedy being able to sail and live largely while top doctors scrambled to provide him with ground-breaking therapies. As it happened, they both ended up on the same chemo, and the Senator's prognosis (though a different tumor) wasn't any gentler. But it is exhausting navigating an uneven and poorly run health care system, insulting to consider that money or lack thereof could influence the length of one's life, and bottom-line, unfair. Health care is discriminating and Alan had strong opinions about it. He was furious at one point when we decided to move him to a private room because the nursing care was so poor on his floor - he felt it was unfair that he had that option. And yet he also felt it was fair for doctors and hospitals to charge what they did - the system had to pay for itself. But even with excellent insurance, Alan was cheated many times. He was repeatedly denied scans when he desperately needed them, hospital stays had to be fought for and when he did get scans the angst that went into getting them approved added insult to injury. Most of the time I was the one showing desperation, not Alan. He was the one with the sentence but it was I who openly and frantically sought the answers. He showed up to every treatment, surgery, scan and follow-up, he went to work and came home and loved and lived and did it all over the next day. That's the most admirable fight I can think of. So when I read of the patient who has shown up for sixteen, week-long stays within a nine month period, on the front page, my heart is glad she's getting some recognition from others beside her family and friends. And I hope she has years ahead of her.

Moving Forward.

I am going back to work. For the first time in over a year, I'll be rejoining the masses heading to a daily destination, and leaving Lily at home in the hands of a doting grandmother and a nanny who loves her. Despite the watchful eyes on Lily I miss her already and have my own set of anxieties surrounding my return to the position I held for many years until Alan passed away. It will be the same room, same desk, and I will be facing the same photo from our wedding of Alan and me together with my employers, arm in arm, on the happiest day of my life. I know from the occasional part-time days I worked during my pregnancy that the phone will ring and I'll jump inside, thinking for a split second that it's Alan on the other end. My Alan. That was the routine - my employers are also Susan and Alan - so when my Alan called and I couldn't get to the phone in time, my employer would. And I can just hear her calling me from the other room, "It's Alan! Your Alan...". I can hear his deep, rich, soft voice in my mind, "Hi Sus" he'd say, and then he'd maybe suggest getting theater tickets for a show we'd read about, or fill me in on his office's politics or have an idea about where we could meet for drinks or dinner after work. Or perhaps he was planning on cooking that night or he'd fill me in on a doctors appointment. Sometimes it was just to check in. How I miss his reassuring voice and his level headed perspective, his calm balance to my dramatic inclinations. His warmth always brought a smile to my face and my employer never missed telling me that he had called if I had been out. She knew how important he was to me, and there were also many hours spent, waiting to hear back from him if he'd gone to treatment without me. I was, and still am, a worrier, so if too much time lapsed between appointments or calls my heart would race until I heard from him. And there were plenty of calls when I could hear in his voice that something wasn't right - a headache too strong, a dizziness, or a sharp pain - and though he'd play it down, I'd rush home, knowing that in a few hours most likely we'd be in the ER. It wasn't a regular occurrence, but each and every visit was one too many.

I'm getting better at catching myself in those brief moments - whether it's a phone ringing or a silhouette in a window. But the fantasy still remains. Just yesterday I had a daydream where I envisioned telling my Super that Alan was back. Explaining to him that there had been some mistake and that Alan was still here, and he had returned, and he too agreed that there was something wrong with the radiator. It was a fleeting thought, but a wish that resonates. The heat is now back on, with the usual photos of Alan and us arranged lovingly on top.

A woman I spoke to one early morning at the swings said she thought it was harder for the mom who's been with her child for seven or eight months to return to work, than for the mom who's time is up at the typical three months - the thought being that at the seven month mark you've been watching your baby develop and discover and grow in tangible ways. They're well beyond the baby "lump stage" and are evolving before your eyes - so the child you must now leave seems more human, and the connection deeper. And I understand that thought - because every day Lily is closer to crawling, her balance is less off kilter, her mannerisms more calculating. She is waving, feeding herself little Os, chugging from a sippy cup, and connecting mental dots. She knows that cups hold water, Spot isn't in the closet or under the bed - he's in the basket, that people come through the door, that music is fun to move to. She talks to her animals and knows that when she makes noise, she is heard. I find that when I'm not with her and I hear a baby cry, for a second it sounds like Lily. Once again someone is on my mind 24/7, and I'll have to go for hours without seeing her. Most moms do it, and I'm sure - I know - it's no easier for them. Makes me long for Italian hours - long lunches at home and siesta. How nice that would be. But I know I'll handle it, Lily makes everything worthwhile - and when I sit down at my desk next week I'll place her photo right next to the others and look forward to our twilight hour together, before she goes down to bed.

Fall.

The new year has come and gone and I did nothing for it besides consume an entire cinnamon babka (over the course of a few days). I am not a religious person, nor was Alan - I think we both considered ourselves spiritual but not observant. Respectful of history and culture but that was the extent of our feelings. In fact I remember Alan saying one year that he had nothing to be forgiven for - and he didn't. He was the consummate good person. Flawless, no, but a genuinely fine human being - so as he gracefully handled the constant challenges to his body and spirit, I understood his attitude. As a friend said to me at one point, "it's someone else's turn". And it was. Disease does not discriminate, and when you face such unrelenting onslaught - faith feels pointless and it's promise, dishonest. Alan would say at times that he felt like he was walking into the wind and this month, for me, felt like that as well. A month that at one time celebrated the moment when we first met, and later our wedding, now marks anniversaries we cannot commemorate - so I am happy when certain dates come and go. Every day I reflect on what we had, and thank Alan for Lily, our most beautiful memento. But the grief continues and September felt particularly cruel. The seasons are changing and that means time passing. Time passing without him.

But I know Alan has been looking after us. Over the past few months he has graced us with whispers and music and signs. One day Lily and I watched as a young tattooed dad sat on our bench and played the guitar to his baby girl. Some mornings Lily and I, from our bench, have seen a woman jog by with a T-shirt saying "I (sign) A.R.". In California when I told someone my baby's name was Lily she smiled and said "Oh, that's my name". I said "Oh you're Lily?", she replied, "No, Susan. Its Hebrew translation is Lily." I looked it up and sure enough, it is. Alan chose her name and perhaps he wasn't aware of the connection - but to me it is fatefully serendipitous. And the other day when I was on hold, having a particularly low moment, on came "Midnight Train to Georgia". Many, many afternoons I sat alongside Alan on the bed as he played it on the guitar and cued me in on back-up vocals. It was his one request at our wedding - and oh how he smiled as he sang it with our friends, all crowded behind mics shared with the band. When he was happy I was over the moon, because Alan deserved to let go and relish in unfettered joy. Seeing that was beautiful. Tonight I playfully argued with him over Mardi-Gras beads Lily was chewing on. They typically hang over a portrait he made of his beloved Bulldog, Duncan, and Lily has taken to patting Duncan's photo and going for the beads. I cherish the moment while I worry about plastic, peeling, paint-coated beads made in toxic places. Alan whispered, "Oh Snooze, let her have 'em." We compromised. She gets a few chews and hums, and then they are gently pried from her grip and lovingly returned to Duncan's shrine. And then we tell Duncan to lick Alan for us and tell him we love him and think of him all the time. All the time.

Shhhhhhh...

I have never written this early in the day but as it happens, my DAUGHTER IS NAPPING IN HER CRIB. So I have some "extra" time. It is miraculous, and comes on the heel of yesterday's nap of epic proportions lasting 2 and a half hours. I was concerned that Lily might feel after yesterday's feat that she had rollover minutes to apply for the next couple of months. Miraculously, she is commanding a repeat performance. I am currently celebrating by eating breakfast. Not only that, I am eating my breakfast in s l o w m o t i o n. One skill that comes quickly to new moms is the ability to "shove it in" - eating at lightening speed. Yes, unglamorous sounding, but when you are constantly preventing your child from grabbing spoons, shredding menus, chewing table edges, sucking napkins and consoling back-arching restless babes there is no rest, nor time for leisurely meals. Eggs and toast. And tea. I even browsed a couple of catalogs. I feel rested just knowing Lily is asleep. Must now pay bills, find work (out of the home, that is), do filing, laundry, and write thank-you notes. But can't do laundry, can't go through room to get it. Baby sleeping. Can't file, drawers in same room. Baby sleeping. Can't shower, bathroom connected to bedroom. Baby sleeping. Will do when she awakens, bright-eyed and smiling. Mom's are experts at the two-minute shower and getting out the door quickly. Mama minutes are equivalent to dog-years - a quarter of an hour equals at least two hours in real time. Amazing what one can do in an hour... when there is hands-free peace and quiet.

Squa, squa, squa, SQUARE!

Currently Lily is often drunk with sleep deprivation but she wears it well. She continues to giggle, stagger as she stands, sit up with impressive posture, bang on the piano with her foot, lounge comfortably in the stroller, legs lazily draped over the bar and eat mashed food artfully. I on the other hand teeter between anxiety and amusement, exhaustion and loneliness, and fantasize about naps, showers and going to a movie. I ran into an acquaintance the other day, in a moment when I could hardly keep the tears at bay. It had been a difficult week and that morning I was particularly tapped - I was caught off-guard, twice, by two different songs, one at home and one in a restaurant. They played out of nowhere and left me raw and exposed. One minute I'm eating lunch, the next, subtly and self-consciously brushing tears from my face, feeling more and more isolated by the journey I've been on. The world rushes by, the tears go unnoticed. At times I cannot bear to let the emotion take me any further, the pain is almost paralyzing. Thankfully if I focus on Lily, waiting for me at home, I can pull myself out of the despair. "Yummy, yummy, yummy, I've got apples in my tummy!" Within seconds I'm back in the land of the living, singing over and over and O V E R again a line from one of her robotically cheery toys - that she activates unwittingly every few seconds to the extent that it stutters. Yummy, yummy - Yum - Yummy yu - Yummy yummy I've got... frequently we never get through the whole line, and it doesn't phase her in the least. I on the other hand am on the verge of mama-insanity and then all of a sudden "Sq, sq, SQUARE! I'm a blue, I'm a blue square!".
My day continues.
Ahhh... Motherhood.
I recently realized I neglected to rinse the conditioner out of my hair, a friend told me she discovered her shirt was on inside out after picking up her child who's shirt was on backwards, and another is struggling with memory lapses and frequently repeats parenting anecdotes. The other night I was pumping (breast milk that is) only to discover that the delayed feeling of warmth on my leg was the bottle overflowing. I cleaned it up only to find myself, minutes later sitting on the wet cloth I had used to clean the milk off the sofa. At times I find myself laughing so hard the tears start flowing. Those are good tears. Delirious, belly shaking laughter and tears that I know Alan would find amusing. We often laughed together and he loved my sometimes silent, bowled over hysterics which in turn, had him panting with glee. Lily has her own laughing pant and it too can be silent - Like mother like father like daughter. Luckily for me the dark moments are balanced with levity that is whimsical and mind numbing, heart warming and life-affirming.

Sleep Baby Sleep.

There is nothing better, as an exhausted parent, than feeling a baby slumped on your shoulder, heavy with sleep. There is certainly beauty and joy that comes with holding a baby in your arms, hearing their babble, and feeling them kiss your cheek which, as of now, consists of a large open mouth that drools and energetically clenches your cheekbone with glee - but when you're feeling especially sleep deprived and desperate for some sense of reliable schedule, nothing beats the peacefulness that accompanies their rest. Since our voyage out West, Lily has fallen into a mercurial sleep pattern, which succinctly can be described as having no pattern at all. Or regularity. I texted a friend the other day who was also trying to get his babe to sleep and asked if nine minutes counted as a nap. "Yes" he replied, "if you're a hummingbird". Sadly, and happily, Lily is not. Days later, just when I think we're back in stride she's willful in her determination not to sleep or fitful as she does. As a parent, it is a test. Of sanity, and will. It feels like quicksand, laden with fears that out of desperation your "dynamic, soon-to-be self-sufficient" infant will become your bed partner for life, eternally parked at the milk truck, or spread out comfortably next to you, hand grazing some part of your body that you now cannot move. Last night I armed myself with a bottle of wine and a pound cake, prepared to indulge as I let the newest love of my life cry it out in the other room with my set limit of 20 - 40 minutes depending on my inner strength of the moment. It is torture hearing your baby scream, during which feelings of guilt, and fears of forever scarring your child take hold. You try to rationalize soothing them in order to help them form healthy relationships further down the line, or take comfort in the idea that leaving them distraught helps shape them into self-sufficient beings. Both options seem unacceptable, and sometimes coming in briefly to quietly calm them results in a burp worthy of a bar stool or calms them enough to help them get back to sleep on their own. If you do not go in, you envision them stuck in a position they cannot get out of, hyperventilating with sobs, or terrified, waking from a nightmare. Last night I ended up with a five minute interruption and the rest of the evening was golden.
I still had the wine and pound cake.
Earlier this evening armed with yet another backup plan I found myself walking around the apartment during twilight hours with a small bunny between my breasts, yes, a bunny - in my bra, hoping that my scent would rub off on Lily's friend to help ease her into sleep. As it happens, so far this evening the bunny, Bunny, has not been called to duty but he is in the crib with her, on deck if need be.

I need to work on my lullabies but I do remember a Simpsons episode where "Rock-a-bye Baby" was illustrated and the lyrics paint images that are anything but soothing - a bough breaks, the cradle falls, down comes baby.
Maybe not.
While Lily has her pre-bed aperitif I often find myself - beyond tired - nodding off, and in between nods I tell her how her dad was an enthusiastic nap taker. She needs convincing. But today was a long one for her that began with music class and ended with some dreamy Aretha in our room now evocatively lit like a bordello. So I am hoping, praying, that all of the activity will keep her deeply asleep throughout the night. Deeply asleep, deeply asleep.

Under Water.

It is surreal to be preparing baby food for breakfast in the kitchen, hearing Lily's playful noises in the background, while simultaneously contemplating Alan's final days in hospice. I often find myself in absolute disbelief over what has happened. One moment I'm marveling at a photo from our honeymoon, wondering if it all had just been a dream - a distant memory that maybe never happened, and the next moment I'm replaying detailed medical procedures and conversations while stark images crowd my mind. I am lonely in a way that I suspect I will always be, and I often find myself floating through days viewing the world through Lily's eyes only. Much of the world I don't care to see. A widowed friend asked me the other day if I had seen an article about cancer drugs and the inability of pharmaceutical companies to do anything but prolong a life by mere days and I could only reply that yes, I had seen the headline, but had had no interest in reading the article. And that is how I have been for months, detached from most things that reflect sadness, inefficiency, faltering policies. I have no room for it in my heart, nor my mind, and when I must engage in conversation that encompasses subjects such as those, I do, but I check out. I switch to autopilot, I can't even say I'm conscious of what comes out - and I'm not sure where what I do say, comes from. And being unemployed as a single parent has left me with little outside stimulation. Traveling was good, it put me in social situations, I even got to an aquarium, but I still feel as though I'm in a haze and I wonder if the fog will ever lift.

My routine is built around Lily and I now find joy, as she does, in the simplest pleasures whether it's making funny noises, dancing or reading a board book. Sometimes I wonder halfheartedly if my brain is shrinking - but my other mom friends assure me that their worlds too, are currently "limited in scope". Much of it is a welcome distraction, and while it is daunting to have the responsibility of raising a child, for the time being (knock wood) three minute showers, five minute meals, and meditating on a blade of grass suit me just fine. I find humor in the mundane - the way Lily looks when she takes a sip of water is a mix of confusion, suspicion and near disgust. When I pick her up at night to comfort her, it is she that is now patting my back. I delight in her spontaneous screeches and bouts of surprise panting excitement, and she bowls me over with X-ray stares that hold my undivided attention. I love to watch her lean out of the stroller, watching shadows and the wheels as they cover ground, and I envy the ease with which she relaxes - legs kicked up on the stroller bar, one flopped over the side. Thankfully when she's nursing just as my thoughts begin traveling to the darker corners of my mind, I spot potato behind her ears and then flecks of it in her eyebrows. Lily brings me back to a safer place, and though she is the one in my arms, I feel as though I am in hers.

The Firsts.

Lily is now six months old and with that milestone has come a slew of "firsts". She just took her first flights to the West Coast, she has begun sitting up (with the occasional sway, sag and plunge), she says mamamamamama, and dadada, she can expertly put her left foot in her mouth and the other day just as I picked up a bottle of Alan's preferred red wine she clapped. With every first it's incredible - they're moments that mark the culmination of weeks of attempts; erratic hand movements, elusive feet, and sounds without such specificity. I was truly overjoyed when she clapped, as I do it frequently when we listen to music and she has studied the movement intently for over a month but only observed. Occasionally I'd see her hands flex open and closed as she watched me do it but that was it. You can see the wheels turning when she fixates on something, so to see the final connection made was awesome. I was ecstatic and with that came the moment that I always dreamt about - being able to share it with Alan. Thankfully I was able to share it with family and a close friend who I knew would appreciate it but I became one of those mothers that wanted to show every passerby Lily's feat, and the ache of not having Alan to witness it made coming home to New York that much harder. She is truly developing into a little person - she is full of smiles and happy screeches, she kicks her legs with excitement over everything from seeing a dog to her reflection in the mirror. Her once peaceful nights have turned into teenage revolts and I am hoping, praying that that is a travel adjustment, but in this respect I could really use Alan. Parenting is hard. It requires infinite patience, resolve, hope, energy and a strong lower back. I miss Alan when I am exhausted at night, calming a wakeful Lily at 2am. I miss him when she cries for me when I leave the room for a moment - a new development which I hope will be short lived, I miss him when she hums with satisfaction contemplating a spoonful of food, I long for him when I see her smiling face peering at me from the crib at 5am. I hope he can see her delight as she peers at herself in the little mirror on her Excersaucer, that he can hear her squealed greetings when I hand her her piggy or her monkey chimp, that he can see her twirl her wrist with spoon in hand and then listlessly let it drop to the floor with her eyes on me as she does so. She is now connecting with objects and people - her discoveries are beautiful to watch. She acts with intention. I have seen her come out of a nightmare, and I recently heard a giggle as she slept. And she is ticklish.

One of the nicest things about traveling and staying with others was that I could show them Lily sleeping every night, I could share my obsession with my girl and they'd dote on her as well. They could see Lily in moments that only Alan would have experienced with us - late night sighs and her sweet sleeping silhouette, active early mornings and animated bath times. It is a joy for me to be with others who can appreciate such moments even if their enthusiasm is merely meant as support for me ~ It is love all the same. Coming home was difficult. Having our trip to look forward to was a comfort, returning to our home so wishing that Alan would be here to greet us was a challenge. He would have been so proud of our journey together. I dreamt about him the other night, the three of us in bed together, Lily in the middle. As I took Lily along side of me when she awoke shortly after, I whispered to her that in my dream we had been a family. But then I corrected myself because I know deep down that we have just enough and whispered again, that the two of us were a family as well - and feeling her sleeping next to me, I know it to be true .

My Girl.

Lily and I are on our first adventure together. We are on the West Coast visiting family and friends and with every hour I feel more and more as though she were an extension of me, I feel so deeply connected to her. She is a very special, unique being and as I ease into parenthood I find that my new role, my purpose in life is to be her mother, her roots, her rock - I now fully understand the concept of guardian. The responsibility of being a parent is awesome, and with that come the fears, worries and even more vulnerability. I found myself on the way to the airport emailing my brother with last minute wishes for Lily should something happen to me. Neurotic I know, but I have already lost the person most precious to me in my entire life - so the thought of this beautiful piece of my heart, our hearts, without either one of us, is haunting. Even when I just need someone to watch her I know the general thought is "come on, she's safe, she'll be fine, worst thing that will happen is that she'll get upset and cry" but that's not the worst thing - I have lived through one of "the worst things" so I know that it does happen, hence my fears loom large. Experiencing separation from Lily whether it be with a relative or babysitter is a tremendous challenge and while factors such as trust and safety are of the utmost importance, the anxiety stems from something much deeper - she is mine, and I am hers and our mother-child bond feels primal. So for me, boarding a plane with her in my arms feels much greater than a taxi ride, and leaving her with someone else is an emotional test of almost herculean proportions.

For months after Alan passed away, before she was born, and now the months after, I've struggled with my identity. I read often on one of the widow "boards" about how people have lost their sense of self upon losing their partner and I too, feel as though the "old me" is forever gone. When I lost Alan, I felt as though much of me went with him ~ and I know he'd hate to hear that, to witness it, but when you are so entwined with another soul - regardless of your independence - the loss kills much of the spirit within; death deadens. It numbs. It leaves you feeling disoriented and I too mourn my loss of self. Thankfully, Lily has given me purpose, and it is her spirit that has begun to bring me back to life. Despite the fact that we're together nearly everyday, I have gotten to know her even better as my travelling companion. The flight attendants could learn much from her - she is patient, full of smiles, is nice to everyone and her obliviousness to unpleasantness around her is admirable. Her glee is infectious and more and more she embraces unfamiliar faces with an openness that dissipates with age. Lily is a sponge and absorbs everything around her. She entertains herself with lights, TVs, music and sounds. She is fascinated by older children, she squeals when dogs brush along side of us. She turns her face into the breeze, she grabs at leaves, she splashes in the tub with reckless abandon. For all of the sadness I have inside, I now have equal parts happiness. The way she brightens my life is staggering, and I am OK with being Lily's mom while I try to grasp at parts of me that have seemingly faded. Like other widows and widowers, I still care little for reading the paper and watching the news; events that once triggered emotive responses still don't move me, there is much I no longer care about. But as we make the rounds out West, reconnecting with family and friends and introducing her to many who have, until now, loved her from afar, I feel as though despite my ungrounded sense of self, she has proven to be my new anchor. So as we forge ahead together, Lily's life new with every morning and mine exploring unchartered territory I am grateful to have her by my side and am glad for her that she has me to dote on her and to love her with all of my heart.

Coney Island

Some of the last photos that Alan took were of Coney Island. It was a bright, dry day in January, the streets were quiet but the signage and lights managed to evoke the summer soundtrack of rides, eighties music, screams, laughs and barkers. Coney Island is particularly special in the off-season - its lore is easier to imagine, the trash is limp in the gutter, its peacefulness enhanced by the empty beaches, its lonely streets asleep except for the occasional passerby. He did manage to capture a man surreptitiously rounding a corner with a large bag from Nathan's, I have a feeling Alan headed there shortly after. He loved Coney Island and I can just see and hear him driving out there on a winter day - perhaps he had had the day off for appointments, I don't remember him going - but I can picture him getting into our hand-me-down car, talk radio or classic rock on, sunflower seeds in one hand, a Dr. Pepper in the other. He was always the one behind the wheel and I got a kick out of Alan driving because it was one of the rare instances (aside from Yankee games) in which his "Brooklyn-ness" came out - he swore at other drivers, a hint of an accent coming out and he could get really pissed when others got in the way. I have to say it gave me a bit of a thrill - my gentle man, yelling unpleasantries at poor old ladies and having no patience for out of town drivers. It gave me such a laugh, he was sheer entertainment and it was a great surprise to see sides of Alan that only came out on occasion. I'm not sure he knew how people sometimes waited with curiousity or baited breath to hear what he had to say and when what came out was some rude "Come Onnnnnnn..... jackass...." it was hilarious, it was scary, it would actually shut me up on occasion. I loved it. I love him. Always.

It was startling finding the photos on his camera, again, something I hadn't known - or maybe I did and I forgot. Regardless, "after-the-fact" mementos are gifts; haunting at times, but a gift - to see the world through his eyes. The DVR still records some of his shows - American Masters, Iconoclasts, 30 Rock, The Office and I can't cancel them. I watch some and erase what I know he wouldn't want. But it is hard. It is such a comfort to see his actions continue.

Last weekend Lily and I went with friends to Coney Island. The first time we went was on Alan's anniversary, so she is a vet now. It was a steamy warm day full of crowds, hotdogs and trash. And it was wonderful. Lily took in the sights and sounds and smells - everything new to her eyes and yet so familiar to Alan's. My friends asked if I wanted to go on The Cyclone and I declined. The last time I rode it it was springtime and Alan was in the hospital. He had urged me to go on a bachelorette party excursion for a dear friend - Alan hated feeling as though he was ever holding me back and yet it was torture for me to ever leave him. I went, rode the roller-coaster and that decision too was difficult. My worries and "what ifs" were taking over at that point and my fear of something going wrong on the ride with Alan where he was, were a force to be reckoned with. I went on it, a three minute electrifying distraction, but that was the last time. This time around I have a giggling 14.5 lb love that replaces my worries of last year - and as neurotic as it sounds, I am her only parent. And I experience that often, decisions feel weightier, responsibilities more daunting without a co-pilot to confer with, to share my concerns. What I would give to be able to go out for an evening with Alan and we could ask each other every ten minutes if we thought Lily was OK. Alan would say "What do you think she's doing?" and we'd both want to go home to look at her, watch her while she sleeps. So this time at The Cyclone I declined. When Lily Alan wants to go on it she can - and I'll look on from the sidelines, a nervous wreck, praying that Alan's got her in his sights.

We Have A Bench.

Lily is asleep tonight in her dress, we are both exhausted, worn out with love. A day that began with a text to my friend Sam saying "It's so humid out it smells like Venice" became a day revitalized with something I can only inadequately describe as "an expression of immeasurable affection". Friends and family of those who have touched our lives over many, many story filled years, contributed funds to have a bench in Riverside Park dedicated to Alan. It is breathtaking, it is perfect, it describes Alan succinctly (which he would appreciate) in a few precious lines that capture his character and soul so vividly it is as though he's been sitting there all along. Being there in the park, Lily held tightly against my heart, with intermittent showers clearing the air, hearing the patter of the drops on the trees, amid the mist and the heat and our extended family, it felt as though Alan had his arms around all of us. Despite the summer's stormy weather there was an ease and serenity that embodied those who were there, laughs and smiles and tears, new babes who will hear about Alan for years to come and new lives on the way as well. He must have been watching.

There is rarely a day that goes by that Lily and I aren't in the park. She loves the bucket swings and dances with her legs as she floats through the air, trapeze like, smiling with glee at me or else eyes fixed intently on the older kids that occupy the swings around her. She loves the trees, their silhouettes against the sky, and often we park on the grass for stories, songs and nature watching. And now we have a bench, with her dad's name, and my love's name, forever etched on it for all to see. We will go there whenever we can, we will read its words, we'll sit there and watch the world go by. And if others are sitting in our place we'll relish in our secret, knowing that the name they're leaning on will surely guide them in some positive way. This is a bench like no other, a spot brought to life by the memory of someone that continues to thrive and by those who contributed to the richness of his life with their friendship, love and devotion. So much love an affection in fact that there will soon be a tree planted in his honor as well ~ so we will go there too, and watch it grow along side Lily. And when it passes her in height we'll lie underneath it and marvel at Alan's strength in it's outstretched branches.

Beyond Words.

One of my favorite diversions once Lily, my greatest diversion, is down for the night is a show called "So You Think You Can Dance". And last night I felt as though my experiences with Alan were portrayed with a beauty that left me weeping. I have always loved dance and it has forever been my "if you could come back as anything what would it be?" choice. There is something so deeply felt when you allow your emotions to guide your movement - it offers vocabulary that is unavailable in any language, it is simultaneously liberating and desperate and cathartic. When I saw this pair move through their piece I felt as though it perfectly articulated something I have been fortunate enough to survive, each gesture says it all. I have replayed it numerous times, it is validating and comforting beyond words. If you look up "So You Think You Can Dance and Breast Cancer" you may still find it on You Tube. It is worth the search.

Our Morning Child.

Last night I fell asleep with my hand resting on a lullaby playing chimp. Ever since Alan passed away I haven't been able to leave his side of the bed unoccupied. For months it held a box of Kleenex and served as a backdrop for photos, and shortly after Lily was born, it became inhabited by my pregnancy body pillow - which now acts as a barrier on the edge of the bed. And now, Alan's side is shared with chimp, polka dot pink pony, a tiara toting purple elephant, water filled keys and a blankie with a green frog coming out of it. In the morning, Lily joins the crowd after her 6:15 a.m. morning drink and she brings his side alive again. She starts by lying on her back, frog in mouth, and begins her morning chants, muffled but with great energy and volume. After awhile, she sheds the blankie and excitedly borderline hyperventilates while staring at the ceiling fan. She squeals with early morning delight and often takes in a long dragging glottal breath before feeling around for her next toy. I watch, smiling, but try to refrain from conversation, in hopes my quiet presence will remind her that there is more sleep to be had. On occasion I help reposition her friends or assist her with getting the key into her mouth to chew but other than that she's on her own. After 40 minutes, she winds down and it's then that she begins her rolls toward me. One full flip and then a half roll so that she lands on her side, against me so we can spoon. It's moments like these that take my breath away because her character has begun to really show. She has intentions. She interacts. She loves. Even when we spoon she turns to look up at me and when she's on her tummy right next to me, she tosses her head up and back against my chest to connect with me. She leans into me, just to be sure I'm there.
And as chatty as Lily is at home, she can be equally quiet in public settings. She is the consummate observer - Lily does interact with others, she shares smiles and touches, but when surrounded by other babes she likes to watch. She hangs onto their every move and when there's a teacher in the room whether it's yoga or music, she's immediately on her stomach, watching their actions intently. At time's I wonder if I'm projecting Alan's traits on her but just recently her music teacher came over to her after class and quietly commented how alert and curious she is with everything - and then sweetly said "she's so self-contained". The description made my heart skip a beat, Alan's presence flooding my thoughts - she had nailed it. Lily is self-contained, just as her dad was. And at four and a half months Alan can be seen within her. So when I watch her during our mornings together, I marvel at how she embraces all that is new to her and am in awe of how miraculous life is. And when elements of Alan appear in her being, it warms my heart to know that there are already ways in which she'll know her dad, and understand him more than anyone else who ever knew and loved him ever did.

He's still here.

There is a saying "To speak the name of the dead is to make them live again" and it was just that, along with bubbly Lily, that pulled me through July 5th. I can't say that the day was much more difficult than those that I have lived through during the last year, but it was a milestone - and the idea that Alan is no longer here, continues to be jarring for me. But knowing that so many friends were thinking of Alan, just as I was on "that day" made the occasion achingly beautiful. One friend relived a guitar jam session he and Alan had shared one summer evening a couple of years ago, and I received many messages leading up to Sunday and throughout the day that all contained the words "thinking of Alan". Those messages meant the world to me. It reminds me not only of how he touched so many others with his presence but also that I am not alone in feeling the loss. As time passes I fear that my memories of Alan will feel distant and begin to blur and it is a terrifying feeling. I don't want to forget a single thing about him and I want Lily to be able to grab on to tangible elements that defined Alan's character - I don't want her to imagine him as a compilation of generalities - I want him to be defined. I want his image to be dimensional, I want Lily to know him as best she can, so that she can feel a connection to him, and understand how much of him she possesses within her own being. It is important to me that she does not feel as though she is "without" a father. Surely she'll struggle, longing for his physical presence, and I mourn for the loss she has yet to realize, but daily I imagine ways in which I can make him real for her. On Sunday I was comforted knowing that others will do the same.

Shortly after Alan passed away, a friend asked me to "please let her know ways in which she could be of comfort to me - whether it be talking of Alan frequently, not talking about him at all - whatever might help ease the pain", and I was so appreciative of her ability to acknowledge her unfamiliarity with the territory and her openness to learn from what I was enduring. I love talking about Alan, I cling to memories others have of him, I hang on to dreams I hear of in which he has appeared. Some widows and widowers have to remove all photos of their loved ones, can't bear to look at images from a past once shared and I do understand that - but I am of the opposite camp; yes the reminders bring heartache each and every time, and just this evening I wept inside as I heard a friend speak of Alan, but it is those very words that keep him vibrant and alive. There is a family that lives down the hall on our floor, and whenever Alan used to hear their toddler girl running and squealing on her way to the elevator he'd smile and exclaim "It's Hannah - let's take the garbage out so we can see her" . He loved children, and I always wanted to tell her parents how much joy he found in her little life as she flitted past us in random moments - but it seems awkward and it's so emotional for me that I haven't. But just the other day after passing her in the hall - father and brother trailing behind her to the elevator - I heard her say in her loud whisper as we entered the stairwell, laundry dragging behind us, "There's the baby! I love that baby - ". It made me laugh and smile and cry. To me that was a line meant for Alan, and to me her words brought him alive yet again.

Three hundred and sixty-five days.

Oddly, it seems common that many of "us" have spent at least one holiday struggling at the hospital or at home in no shape to celebrate it. And that was our situation, more than once. We spent one Christmas, and two New Year's Eves in the hospital or in recovery. It didn't matter, occasions such as those paled in comparison to our reasons for missing them but it is challenging to find one's self facing those holidays again under different circumstances. And this year, this weekend, marks an anniversary I hoped I'd never live to see. Alan passed away in the early hours of July 5th, 2008, and in all honesty I can't say I remember ever doing anything remarkable on the Fourth of July. But what I do remember, painfully, is the sound of fireworks in the distant night, echoing as the Fourth turned into the Fifth - wishing, hoping and praying that the night nor the day to come would be the day. So what I dread this time around, besides the obvious, is hearing those sounds again - the crackle, the snaps, the pregnant silence in between explosive moments. Sense memory is powerful and I wonder how I'll manage through the night. I look forward to sharing the history and sparkle with Lily someday, and perhaps then the holiday will regain it's intended significance. But I know that deep down, the date will be forever etched on my heart, and it will always have a different meaning for me.

The thing I wonder most about is how will Lily think of her father? How will she remember the man she never knew, how will she commemorate his passing, what will moments like these feel like to her and how will she feel knowing what he meant to me... I intend to shower her with details, regale her with stories, identify his traits in her character, show her where he appears in her distinctive features. Her life is already filled with people who loved Alan and that Alan loved, so I feel confident that as we reminisce about his beauty, his humor, his kindness, his warmth and generosity, those facets of his character will be illustrated for her ~ passed on to her in bedtime hours, greeting her in waking moments, shared over hot dogs, told to her while making cookies, preserved for her in letters and whispered into her ears in quiet moments. She studies his photos already, and studies her surroundings just as he did. I have no doubt that Alan's presence will always infuse the air we breathe, and in all of the nature that fills our world but losing him, in the physical sense, has left a void I struggle with hourly. So as the Fourth approaches, I fear the sound of fireworks and their celebratory cheer that so obliviously ushers in the Fifth. I'm told that often the anticipation is much greater than the actual anniversary. If that's the case, I'll be relieved. Because today and yesterday and the year that's led up to this weekend has been painfully raw; as though every nerve in my body was exposed. I shudder to think of where I'd be if it weren't for Lily Alan. I'm not sure I would have made it through the days. So this weekend it's she that I'll celebrate. And as I do everyday, I'll thank Alan for his love, and reflect upon how unselfishly he shared his final days with his family and friends, never once complaining about the unfairness of it all. There was such a sparkle in his eyes when I told him I had heard the baby's heartbeat - perhaps it was enough for him to know that someone, soon, would be here to help rescue all of us from the sadness, or at least to help move us forward, gently, through the grief.