Brick City Birthday Girl
Posted on March 11, 2014 2 Comments
There is a thrumming drone
of Quiet Cool
versus Hayward filter,
bubbled up with beads
of late evening horseplay –
cannonballs jumped off the side fence,
dusted with specks of HTH,
and tired cicada banter,
twisted timeless and tipping
into moonlit-gilded
white birch bark.
Late June crackling and crunching beneath our Dr. Scholl’s
– Goddamnit,
why do those trees do that so early
in the summer,
Daddy bitches –
Wet summer
dripping hair and noses,
just inside the arctic-promised AC shivering
– don’t get my kitchen floor wet,
Mommy shrills –
It’s the only feeling of summer love
I know –
white teeth against tanned lips and towel-dried dampness,
yawning back for tomorrow,
when there will be more
Wimbledon grunts
and Nestea plunges,
pink stung shoulders,
bare toes sunk
into soaking outdoor carpet.
If only I knew how to say it,
I would tell you
how bright the sun laced through
to my skin
and the pith of the warmest months
bleached and smoothed me wild,
levitating hazily between summers
wished for dreamt of hoped for
and those that were.
Dispassionately reassured
until the magical 15 minutes of dusk are over,
I belt one last Mala Femmina
into the ragged, chewed tip of the
Fla-Vor-Ice
turned to liquid in my hot hands –
hold my nose and dive
into shaded water
– Jerry Vale doesn’t have a blue tongue,
Nonni teases –
because I’m always a scooch’a dement
laughs the birthday girl,
knowing she does as she pleases today
and every day.
LAD
6/26/12
As Luck Would Have It….
Posted on March 10, 2014 Leave a Comment
I have always said the only luck I have is no luck at all. Half-jokingly, that is. Because I really never believed in luck. Or fate. Or anything hokey in that sense. For all the Irish in me, though, I’ve never been blessed with any of what might be considered good luck. Irish or otherwise.
Or have I?
After revisiting (binge-watching, that is) all thirteen installments of Carl Sagan’s original Cosmos series, and as we approach St. Patrick’s Day – that “luckiest” of days – I may have changed my mind about the entire concept of luck. Science has a distinctive way of putting things into perspective that way. Even things like luck.
It’s an astonishing gift of mind-blowing proportion that we exist in this universe. Further, that we are even clever enough to realize we exist is astounding. The notion of the remarkable gift this universe exists in the first place cannot be overstated. Is it God? Is it science? Is it both? I don’t have those answers. The answer I do have, though, is luck – if ever such a thing could be conceived. Maybe you don’t believe in God. But God is evident in this luck, as far as I am concerned. Maybe you don’t believe in science. But the randomness, chaos and strict scientific laws which govern us simultaneously, coalescing to create all that is, all that was, and all that ever will be is both science and God. One and the same.
And what is the result? We are. This is my luck. All of our luck. Not accidental luck – but good fortune. Providence. Divine intervention.
This is good luck.
There is no possible way all of this comes together for no reason.
Last week was a less than stellar week in my world. In the usual human way, I managed to offend, screw up, and generally not live up to the high standards of behavior I believe are demanded of us in return to the universe for the inconceivable endowment of life extended us. No, nothing is asked of us in this way in actuality, I know. We may choose to live however we wish, in whatever small-minded, short-sighted manner we want.
But consider the universe. Consider the magnitude. The overwhelming enormity of what has transpired, combined, and occurred for us to be here. For every single last atom to exist.
We are lucky. We should act like it.
The Gift of Dreams Realized
Posted on March 3, 2014 Leave a Comment
Mothers spend a considerable amount of time daydreaming about the future of their unborn children ~ especially mothers relegated to bed rest at any point during pregnancy. In the left side-lying position I was obligated to assume for the last month before my son, David, was born in November of 2000, I often dreamt of the kind of child I hoped he would be, the achievements and successes he would realize, the goals he would accomplish as an adult ~ the stuff of every mother’s dreams. I imagined my son was special, destined for greatness, and like no other.
Now, of course, I am under no delusion that this is somehow different from what other young mothers carrying their first child believe, and I think it’s a necessary and important part of learning the role of motherhood ~ learning to somehow weave our inherent expectations with the reality that our children will be whoever they are meant to be, and not who we mean them to be.
So one of the most vivid hopes I can remember having for my son was that he would someday grow up to be a person who impacted people’s lives in some immense manner, hopefully through his kindness and generosity, or tremendous intellectual gifts, or ~ even better ~ through both. Although I had pre-eclampsia during the last trimester of my pregnancy, there was nothing clinically evident to indicate that David would be born any way other than without incident, without complications, and that he would lead a completely normal life. As most parents of children with disabilities are, we were entirely surprised to find he had suffered brain damage, that he would be faced with almost insurmountable challenges, and that his life would never be like the lives of any of the children of mothers I had known who were pregnant at the same time as me.
But the point is that I dreamt David was special.
And now I realize he was. And is.
Not in the way I had imagined or hoped for before he was born, or as a tiny infant ~ before we learned of the senseless damage caused to his brain by others’ ineptitude ~ but in a greater way than I could have even conceived.
Yes, his death before reaching his 12th birthday weighs on my soul as no other heartache imaginable. You may think it’s unfathomable to suffer the loss of your child ~ and you’re right. There is nothing worse. If I could have him back physically to hold and love, my joy would be boundless. Perhaps, I have not yet even come to terms with the reality that I can’t.
But I do realize my dreams for him have come true. Not in the ways I had imagined before he was born, but in the ways that were destined for him. He became a person who touched many lives, inspired many people, and awakened love and hope in some of the darkest of places.
In this way, to me ~ his mother ~ he is immortal.
Between Sainthood and Resentment is….Reality
Posted on March 2, 2014 1 Comment
When I was young and healthy and had no idea what it meant to be old or unhealthy – let alone young and unhealthy – I decided to become a nurse. I had no particular affinity for the sick, and probably could have gone as far as to say I disliked sick people, although I certainly hadn’t been exposed to enough of them for any length of time to even know for sure one way or the other. My guess is that they didn’t appeal to me, since my primary activities as I began my first clinical rotations in the hospital had the telltale depth of any other twenty year old girl’s interests. I overslept. I ate barbecue flavored Pringles for breakfast. I cut classes to buy 99 cent eyeliner. I felt superior because my little white uniform was always crisp and always garnered a lot of cheek-chucking by the old patients. Especially the old men. They loved to – what I didn’t know then was – patronize us with their quasi-respectful admiration.
“Oh, you girls are the sweetest things.”
And we ate it up. What girl wouldn’t? It only took a bare minimum of flattery and indulgent deference to sweep under the rug that we stayed up for nights on end studying and crying. And crying. And studying. Come morning, no matter what, we walked in those patients’ rooms with our hair tightly pulled back, our faces fresh, and our backs not yet broken.
There was just no way to know any better, to know anything of what life really meant.
I met a lot of nurses like that once my son was born with severe dystonic cerebral palsy and more medical issues than I could count. From nurse I had instantly transformed into the generically humbling “mommy” that all the sick children’s mothers became, with only a few years of cocky and confident nursing practice to prepare me – the kind of nursing practice where my patients got better, and when they didn’t, it was because that was the way it was supposed to be. They were old. They had abused their bodies with alcohol, or drugs, or God-knows-what. My experiences had not yet conceptualized the randomness of fate as a precursor to infirmity. Further, that indiscriminate misfortune could befall the undeserving – even my own child – was beyond my scope of understanding. I had only been set up to accept the eye-for-an-eye standard, so I embarked on a trail of guilt pursuit, fueled by endless encounters with smug health care professionals behind whose caring smiles I recognized the very same self-righteous undercurrent I once possessed.
Surely, I was guilty of something. How else could this have happened?
Punishment for whatever transgressions may have precipitated my poor child’s miserable destiny became my job. I must have done something to cause it, and while I couldn’t pinpoint what it was, I was going to exhaust myself trying. I would become a saint. A very educated saint.
I schlepped to doctors’ appointments. I slept in hospital cribs, without showering for days, tangled in telemetry wires and oxygen tubing. I championed attempts to try every therapy. I read every book on cerebral palsy, each new study on evolving treatment modalities, and explored every possible option to help my son maximize whatever potential for brain regeneration was possible. I employed the same tireless efforts I had once used to get a 4.0 grade point average in college to now get one in special needs parenting. I prided myself on knowing exactly what to do at all times, just like the good nurse I had always been. Simultaneously, as luck would have it, I got to the bottom of precisely whose sins had caused my son’s brain damage – not mine, but the obstetrician’s. It turned out he had made mistakes during the delivery which caused the irreparable damage to my baby’s brain. Eureka.
And so my eye-for-an-eye mentality was back in business. There was someone to blame now. I focused all my anger and resentment on him, and spent most of my time muttering about karma and just desserts. Later, I even found out he had been diagnosed with advanced prostate cancer.
But, by that time, a different person, I didn’t rejoice.
I had finally come to terms with the fact that people get sick – even innocent children – and there is no rhyme or reason to it. While, of course, certain outcomes can be causally connected with past behavior, it isn’t always so – and, often times, there are no explanations whatsoever. This was one of those times. The inexplicable and arbitrary are more rule than exception. It isn’t our job to figure them out, but to just do the best we can with what we’ve been given. Do I wish our plane had landed in Italy and not Holland? Every single minute of every single day. But, like that well-worn poem says, Holland is where we are, and Holland is where we have to remain. And Holland is very beautiful.
My son, David, is the most perfect child, just as he is. He is perfect whether I am an expert on anoxic encephalopathy or not. Whether we have tried every new therapy with him or not. Whether he ever utters the word “mommy” or not. None of it matters. He is perfect and has purpose, in spite of me – not for me, and most definitely not because of me. His purpose and his journey are all his own, and I am lucky to have been given the chance to learn from him. To learn that not every question has an answer we can know. Now, when I come across those who still have yet to learn it’s only a matter of time before their turn on the merry-go-round of inexplicable randomness, I’m extra patient with their arrogance.
I’m not a saint. I get frustrated. I lose my patience. Many days, I wake up still very angry my child has been deprived of so many simple things for which others don’t even consider to be thankful. When other mothers of “regular” kids praise me for what I “do,” I’m uncomfortable with it and counter with the only answer I can think of: “Would you do any differently for your own child?” Why should anyone praise me for doing what is my job? This is what I signed up for when I became pregnant. There are no guarantees you will have a perfectly healthy child.
You have to do the best you can with what you’ve been given – even when it isn’t what you expected or hoped for. That’s what being a parent of a special needs child – of any child – is all about. In fact, that’s the reality of life. If you accept what you’ve been dealt and leave everyone you encounter in life better for having known you, then you’ve learned, at least, what your child was born knowing.
Plus ça change, plus c’est la même chose….
Posted on March 1, 2014 Leave a Comment
In high school, I took French because a. the Latin teacher had had enough of me by 10th grade and b. Dorothy Parker probably spoke French. She was interviewed for The Paris Review, so it was likely. And she worked for Vogue, which is, after all, a French word, n’est-il pas? Oh, and I liked to wear Paisley-patterned clothing which, although not French, is somewhat Persian (the actual design), which sounds Parisian. And they speak French in Morocco. Oo-la-la!.
Except it sucked.
I couldn’t master Latin after 3 years – or even English after 14 – so where could this be headed?
If anyone had Mr. Bright for French, you know the answer. If you didn’t, I’ll fill you in.
La toilette. And not the Toulouse-Lautrec kind.
The kind where the oxymoronically-named Mr. Bright told our parents we would not only never learn the language, he would not waste his time teaching us and, furthermore, he could not care less, since the bright gleam of his impending retirement was dancing on the hood of his car, parked in between the driver’s-ed Reliants just outside the classroom. A few more months and les incompetents – that’s what the French would call us – would be a distant memory.
So I can’t speak French. And I’m not Dorothy Parker.
But I know a French epigram – plus ça change, plus c’est la même chose. I find myself saying it over and over in my head – mostly in French because, après tout, I still would love to be able to churn out wisdom in French. But also in English, when I find the phenomenon it describes exceptionally tiresome.
The more things change, the more they remain the same.
Do we really want to be surrounded by Mr. Brights? Dissatisfied people who would not recognize the good fortune in their lives if it were to jump up and bite them in le cul. That’s behind – in case you’re one of les incompetents. As in get your le cul out of your la tete and stop being miserable. You can change it. It doesn’t have to remain the same. Stop fixating on the gleam of anything just out of your reach just long enough to appreciate the gleam of the here and now.
There are lots of things that suck. No question. But there are some really good things, too. Enjoy them!
Don’t be a Mr. Bright.
Summer is Coming
Posted on March 1, 2014 2 Comments
The weather this past weekend – a short winter reprieve – reminded me of a short story I once read as a child by Ray Bradbury, All Summer in a Day. In it, a young girl is locked in a closet by her jealous classmates for the two short hours in seven years that the sun actually makes an appearance on the planet, Venus. Bradbury’s Venus is a viciously stormy, dark, and dank colony of Earth, and the protagonist, Margot, is the only child among them who has any memory of sunny days above ground.
The other children, resentful, yet disbelieving, of her ability to even remember the sun, shove her in a dark closet while the teacher isn’t looking, where she quietly accepts her fate. Those children have their moment in the sun – dancing, playing, and soaking the warm rays – and they don’t once give Margot a thought.
Until the rain returns, that is. And she silently exits the closet. But you never find out if there is even the slightest bit of remorse in any of the children.
I’d like to believe there was, though. That their hatefulness wasn’t altogether intentional.
It’s so easy to forget in the midst of so much joy the sadness and heartache of others, even when we’ve caused it. But especially when we haven’t. And in some ways, that’s just the way it is. We can’t spend our time rejecting our own happiness because of the misfortune of others. Yes, we all have to live on Venus sometimes, longing for even a few hours to step out of the rain – or, as the case is for us this winter, snow. To discard the gloom and doom life often visits upon us for as long as possible. To cover our ears against the heavy patter of raindrops around us. Even when it’s falling on people we care a lot about just before they’re shoved into their dark closet.
We really should know better, though.
While in the story, the children’s behavior is downright malicious – no one would disagree – for whatever reason, their hatred of Margot, fueled by jealousy, directs them to exclude her from the smallest possible pleasure. A moment of pure bliss in the sun. And I bet we’d say we would never do that to anyone, never be that selfish. But we do sometimes, and we are. We have our moments in the sun while our own friends are weeping. We don’t want to take on other people’s misery. When the sun is out for a few hours in our own lives, we’d like to enjoy it.
I thought of this story because there are important people in my own life who are stuck in the closet on Venus. Although I didn’t put them there, I want them to know they are loved. That I am here for them in any way I possibly can to lead them back to the sunlight, even if I, too, am stuck in my own closet on Venus.
Thankfully, we don’t really live on that Venus. The door will open. The spring will come. The sun will return. And everything will be alright again.
Beyond Loss
Posted on October 16, 2013
David and Goliath: The Story of How My Kid Fought Life’s Battles…and Won
Everyone knows the story of David and Goliath, right? David is weak. A small fry. He is the inconsequential youth who triumphs over his giant foe, Goliath, with only a small sling and a stone (oh, yeah, and also God), only to later emerge as the greatest king of Israel. (Well, besides that other greatest king of Israel.) But this is not a religious story – except that the grace of God granted the gift of my child to me, to those he touched, and to anyone who may trudge through this life an underdog. This is the story of what it truly means to never give up. To look the colossus of life straight in the face without flinching. To keep going. And to be grateful about it, too.
Throughout this past year, since David’s passing, I have struggled with the physical task of saying goodbye, of truly acknowledging everyone’s kindness, and assimilating this horrific loss into some form of hope for the future. It has been next to impossible on some days. I don’t want to say goodbye. I don’t want to move on. I want to spend every minute holding on to the objective presence of my child in my life – his clothes, his belongings, even his medical equipment – to somehow keep him in this world, and not some other world where I can’t be with him. Perhaps I have failed at realizing the loss, accepting the goodbye. Perhaps. But I have excelled at recognizing what’s important.
To keep going. With thanks and appreciation.
Even before he was born, David – MY greatest hero, toughest fighter, and the king of MY heart – was already bombarded with unfair challenges. He barely eked into this life, it’s true. But he rebounded with such admirable force and downright stamina, he couldn’t help but inspire anyone who knew him. After all, he wasn’t even breathing when he was born. He needed everything the NICU had to offer to keep him alive just to keep going.
But he did. Keep going. Not alone, but with the assistance of many others. Many of you.
He kept going. Despite every awful reality this life meted out to his little soul. Severe brain damage. Pneumonia. Unexplained fevers. Gastric reflux. Spasticity. Dystonia. Epilepsy. No problem. Throw anything at that kid, and he smiled. He left everyone else better for having known him, even as he fought the battles of his life, at times with every moment he lived. And you saw the appreciation in his eyes.
His name was David, and that was no accident.
By nature, I have always been a procrastinator. Sometimes a bit lazy. Sometimes even a whiner. But David taught me to suck it up. Be grateful for every moment. Take full advantage of every moment given me. To keep going. Even when I don’t feel like it – which is much of the time. And to always try to be better. Stronger. Just like him. Thankful.
So, as this first year without his physical presence here on earth is now approaching its close, I want to say thank you, again, to all of you who’ve been on this journey with me. It’s a tough journey. Some days, it’s a journey I truly, truly despise – which is maybe why I seem cranky on occasion. I apologize. On those days, I’ve lost the battle with despondency, let go of the lessons David taught me, and am being selfish, wallowing in my own loss and self-pity.
But I keep going. I try to wake up the next day thankful. Grateful. With hope. And with a genuine desire to share what being David’s mother has taught me in this Goliath-filled life we all lead. What’s important is each other. Acknowledging the role we play in each others’ lives every day – whether small or large – as cheerleaders offering encouragement, arms open with comfort and support, and smiles gilded with love and sincere friendship.
Maybe some would see David’s passing as a lost battle. I don’t. I choose to believe he moved on to a greater place – an existence I cannot even fathom with my infinitesimal understanding of the universe. A place where he no longer needs to battle at all – while we remain here on earth. Where almost everything is a struggle. And where we are often not kind to one another. We are selfish, petty, angry, ungrateful – even mean.
Yes, we all feel downtrodden some days. We all feel put upon. We are all fighting our own battles against our own Goliaths. We are all at different points on the journey. In some instances, our meager pile of rocks is laughable in the face of what’s against us. But, for now, we’re all still here. Still in the thick of it.
Like David, we keep going. Hopefully, we do so with grace, gratitude, and appreciating the gift it is just to keep going at all. And in doing so, we triumph.
Why It’s Necessary to Keep Going
Sometimes, as a grieving mother, the cacophony of conversation around me at any given time is like a Jackson Pollock painting. An unrelated stream of words, linked together only by proximity, with no real meaning to them. On these occasions, my head pounds with pain, and I want to retreat from everything, everyone.
I imagine it might be this way, also, for someone with a sensory processing disorder, no matter what the cause. I’m sure it was this way for Maggie, a patient I once cared for when I worked as a nurse, who had end-stage HIV, full-blown AIDS. She was a young mother, emaciated, hospitalized, confused, and thought she was still in seventh grade at Broadway Elementary School in Newark. She had completely abandoned her personal wrestling match with reality. She quietly polished her nails sparkly green, while gazing bemusedly at the somber nurses who steadily barged into her room, occasionally knocking her bed table as she begged, “Hey, watch my desk!”
“Is it career day?” she asked, as her two preteen sons sat to her right on oversized, visibly worn recliners, breathless, having taken 3 buses after school just to visit her. Their own mother. Who now believed them to be classmates in her imaginary past youth. Had the seventh grade been this way for her? Who knows.
But I watched her carefully painting her nails, half jealous she was able to check out so effectively from the heartrending reality of her life. That she would leave these two young boys very soon – motherless. Alone. I didn’t blame her for shutting this certainty down as she had, whether she had done so purposefully or because her diseased brain could no longer organically wrap itself around the concept of such despair. Either way. She was devoid of concern. And I envied her freedom.
Except when I looked at those two boys. The intense pain in their slightly glazed, pink eyes. They were not devoid of the brutal future just ahead of them, right outside that room – which happened to be only a few days away, as it turned out – even as they half-smiled at her delusion. They were suffering incomprehensibly at the loss before them, and I still shudder ten years later as I recall them. Especially now. Because I have my own young son whose brush with incomprehensible loss is so poignant to me.
He is the reason I can’t check out. Can’t retreat to another place. My own well-crafted seventh grade world, full of sparkly nail polish and Duran Duran. I’d like to go there. To neatly dispose of all the pain in a locker, or a LeSportsac, and rush to second period in my Capezios. This isn’t an option, though. My own occasionally sullen child – whose eyes are often a little watery, a little red – needs me.
He needs me to reinforce why moving forward is important. Why continuing on means anything at all.
Yes. Maybe it is career day, after all.
My career is to do everything possible to ensure that my living son, who has suffered more than any child should, can still appreciate the value of living, of working hard, of doing his best, and of honoring his brother’s memory by doing so.
Isn’t this why any of us parents remain in the trenches with our children? To set the example. To lead the way. To show them that our behavior as adults is important. That how we react to life matters. They’re watching us. Even when we get it wrong sometimes. Which we do. We’re not perfect.
But we can’t sit down on the job.
Girls with Journals: Why I’m Not a Real Writer
Posted on October 13, 2013 Leave a Comment
I always wanted to be the type of girl who kept a journal. Someone who wrote droll daily observations in a pretty, Paisley diary from Barnes and Noble, thinly-lined. Something a Jane Austen character would daintily clutch, while wearing some Georgian empire-waisted dress, cleverly sitting down in a sunny morning room to jot down flawlessly engaging blurbs. (In perfectly formed handwriting, of course.) Or maybe one of those brown leather notebooks with a strap around it, like Indiana Jones. I’ve had both. And some others, too. All empty.
Well, not empty. Exactly. Once in awhile I’d start writing what I thought I should be writing down – not what I truly wanted to write – but things which, when later reread by me, seemed false. Unnatural. Contrived. And so, disappointed by my inability to express even the simplest of content in a remotely entertaining way, I gave up. Every single time.
But I still wanted to write stuff.
So I would write myself little notes on backs of receipts. In margins of books. On the TV Guide. I would jump up out of a deep sleep to pen important thoughts to be later transferred to one of my multiple incarnations of a journal. You know. The empty one?
Because I wanted to be a girl with a journal. I just couldn’t get it together.
Then I started to text myself. I got an iPhone and started to write little yellow-lined notes, like Facebook statuses to myself. I love technology. Can I even write on paper anymore? Do I need to? Not when I can text myself such witty nuggets, in random ADD-driven bursts of absolute genius, and fueled by long sips of Starbucks.
Things like:
- Btw, scale, I am NOT 150 pounds.
- Yes, George O’Dowd, I do. Really, really, in fact. Want to hurt you AND make you cry.
- Spaghettios are inedible without the meatballs. Hands down. (Auto-corrected to indelible – hey, they may be that, too – but I never tried to write with a meatball. Yet.)
- Got 100 robo calls today. Ok. At least 20. Or 2. I got 2. (Which auto corrects to something like “hot 100 robot allies” – huh?)
I give up. Or, as they say nowadays, FML. The reality is this: my Facebook is my journal. Or, as translated by my iPhone: XML my FB is my joy. WTF.
Anyways. Yeah, that’s right – I said anyways. Deal with it. I’m not a girl with a journal. Or Jane Austen. Maybe Jean Shepherd. In a Regency era dress with a plunging bosom. IDK. LOL. Those dresses ARE cute.
I’m not a real writer.
A Girl by the Bridge 
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