When Rain Hurts by Mary Evelyn Greene

August 19, 2013

August 19, 2013

Assateague Island, MD (Aug. 6, 2013)

Assateague Island, MD (Aug. 6, 2013)

August 19, 2013. We’ve been living in Maryland just shy of two months now. We moved the day after Peter was discharged from Green Chimneys. I drove the convertible with Peter, one dog, and the hamster, and Pat drove the bigger car with Sophie, one dog, one cat, and three fish. Our orange tabby escaped the house in the last throes of loading the moving trucks and, to our collective heartache, had to be left behind.  Luckily, our neighbors rallied and he was found the next day. Paying someone to drive a freaked-out cat from New York to southern Maryland was expensive, but it beat one of us having to do it. Fifty-eight days later, we are more or less comfortably installed, and I’m on the verge of coming up for air. It’s funny – no matter how thoroughly I try to prepare for transition – for the down and dirty maladaptive behaviors that are dampened but not extinguished, nothing adequately prepares for the reality of coping with kids for whom change can be a life-threatening sensation. And I get it – I really do. Especially 58 days later when most of the debris has cleared. But it wasn’t easy. In the days and weeks following the move, we changed medications, put new safety plans in place, talked about re-hospitalization, called out the National Park police (risking an outing so soon after the move was a MAJOR mistake), cried uncontrollably for most of the Fourth of July weekend (okay, that was me), and generally prayed for a way to somehow undo what we had done. But then Peter started summer school, Sophie met a little girl down the street, both kids had birthdays, I began my new job, and well, things began to settle in, almost in spite of ourselves. It seems we’ll be okay here after all, although perhaps with an asterisk (or two). Peter has three weeks off between summer and fall sessions, and we had no choice but to plunk him in a day camp. Finding camps in August is tough anyway, even more so in a new city, and I came up empty in terms of locating a special needs camp that would take a twelve-year old. So he’s in regular sports camp with Sophie and he’s overwhelmed, over-stimulated, over-everything. But Pat has to work and so do I – and Peter can’t be left unsupervised. In fact, he still needs someone to interact with him constantly or he strays, both behaviorally and in terms of intrusive thoughts. So we haven’t pulled him out, even though the strain is showing. He’s acting out – arguing and being defiant, threatening to hurt himself or us, scratching at his arms and face, actually punching his sister, sometimes in the face (a new and troubling development). He craves routine and structure and I can’t give it to him right now, except within the confines of this camp, which I imagine for Peter is somewhat like Lord of the Flies. The other kids are making fun of him, calling him “Diaper Baby” and “idiot” and chanting “Peter has special needs”. We’ve talked to the counselors until we’re blue in the face and though I think they’re trying, they also helped create the problem. To alert the rest of the counselors, one of them wrote “has special needs” at the bottom of Peter’s name tag the first day of camp. Peter didn’t notice but you can bet every other child there did. And so now he’s branded (he would have been branded to some degree anyway, but not like this). When he came home the other night, fried and angry, I did my best to explain that although he may have some special needs when it comes to learning and behavior, those boys at camp have special needs when it comes to being good people. As he finally relaxed and let me comfort him, I whispered in his ear that I’d rather have his kind of special needsany day, and I absolutely meant it. Peter would never enjoy hurting another person’s feelings. He smiled shyly with the knowledge of that truth and then we snuggled for a few more minutes. But later that night, when he was taking his medicine, he asked me two questions that took my breath away. “Mommy,” he asked, wringing his hands and standing on tip-toe, “do people still have problems in their brain when they die?” And just as I began reeling from the question, he followed, “What I mean is, uhm, Mommy, when you go to heaven, do you still have to take brain medicine?” I couldn’t answer – not even with a gesture. The questions hit me like a heavyweight’s punch. I wanted to quit my job then and there, or at least announce I had to stay home the next week and a half and risk getting fired. I wanted to make my husband keep Peter at home with him and damn the bills (and his business) if he can’t get his work done. What I wanted more than anything was a solution. But there wasn’t. There isn’t one. We can count on one hand the people we know in Maryland and none of them are willing to babysit Peter all day long. Three more days of camp and then he’s back in school, a wonderful school where he fits in, where there are teachers who understand him, who get what his needs are, and who appreciate that sometimes a little cocooning from the rest of the world is not a bad thing. I thought the folks in our new district were going to fight us on placement – this school is not inexpensive, but thankfully they didn’t. So hang in Peter, just three more days. I hear myself repeating this mantra in my head, over and over, like the lyrics to a song I just can’t shake. Hang in, hang in, hang in. I say it for him, my stoic, soon-to-be teenage son, and of course, I say it for me.August 19, 2013. We’ve been living in Maryland just shy of two months now. We moved the day after Peter was discharged from Green Chimneys. I drove the convertible with Peter, one dog, and the hamster, and Pat drove the bigger car with Sophie, one dog, one cat, and three fish. Our orange tabby escaped the house in the last throes of loading the moving trucks and, to our collective heartache, had to be left behind.  Luckily, our neighbors rallied and he was found the next day. Paying someone to drive a freaked-out cat from New York to southern Maryland was expensive, but it beat one of us having to do it. Fifty-eight days later, we are more or less comfortably installed, and I’m on the verge of coming up for air. It’s funny – no matter how thoroughly I try to prepare for transition – for the down and dirty maladaptive behaviors that are dampened but not extinguished, nothing adequately prepares for the reality of coping with kids for whom change can be a life-threatening sensation. And I get it – I really do. Especially 58 days later when most of the debris has cleared. But it wasn’t easy. In the days and weeks following the move, we changed medications, put new safety plans in place, talked about re-hospitalization, called out the National Park police (risking an outing so soon after the move was a MAJOR mistake), cried uncontrollably for most of the Fourth of July weekend (okay, that was me), and generally prayed for a way to somehow undo what we had done. But then Peter started summer school, Sophie met a little girl down the street, both kids had birthdays, I began my new job, and well, things began to settle in, almost in spite of ourselves. It seems we’ll be okay here after all, although perhaps with an asterisk (or two). Peter has three weeks off between summer and fall sessions, and we had no choice but to plunk him in a day camp. Finding camps in August is tough anyway, even more so in a new city, and I came up empty in terms of locating a special needs camp that would take a twelve-year old. So he’s in regular sports camp with Sophie and he’s overwhelmed, over-stimulated, over-everything. But Pat has to work and so do I – and Peter can’t be left unsupervised. In fact, he still needs someone to interact with him constantly or he strays, both behaviorally and in terms of intrusive thoughts. So we haven’t pulled him out, even though the strain is showing. He’s acting out – arguing and being defiant, threatening to hurt himself or us, scratching at his arms and face, actually punching his sister, sometimes in the face (a new and troubling development). He craves routine and structure and I can’t give it to him right now, except within the confines of this camp, which I imagine for Peter is somewhat like Lord of the Flies. The other kids are making fun of him, calling him “Diaper Baby” and “idiot” and chanting “Peter has special needs”. We’ve talked to the counselors until we’re blue in the face and though I think they’re trying, they also helped create the problem. To alert the rest of the counselors, one of them wrote “has special needs” at the bottom of Peter’s name tag the first day of camp. Peter didn’t notice but you can bet every other child there did. And so now he’s branded (he would have been branded to some degree anyway, but not like this). When he came home the other night, fried and angry, I did my best to explain that although he may have some special needs when it comes to learning and behavior, those boys at camp have special needs when it comes to being good people. As he finally relaxed and let me comfort him, I whispered in his ear that I’d rather have his kind of special needsany day, and I absolutely meant it. Peter would never enjoy hurting another person’s feelings. He smiled shyly with the knowledge of that truth and then we snuggled for a few more minutes. But later that night, when he was taking his medicine, he asked me two questions that took my breath away. “Mommy,” he asked, wringing his hands and standing on tip-toe, “do people still have problems in their brain when they die?” And just as I began reeling from the question, he followed, “What I mean is, uhm, Mommy, when you go to heaven, do you still have to take brain medicine?” I couldn’t answer – not even with a gesture. The questions hit me like a heavyweight’s punch. I wanted to quit my job then and there, or at least announce I had to stay home the next week and a half and risk getting fired. I wanted to make my husband keep Peter at home with him and damn the bills (and his business) if he can’t get his work done. What I wanted more than anything was a solution. But there wasn’t. There isn’t one. We can count on one hand the people we know in Maryland and none of them are willing to babysit Peter all day long. Three more days of camp and then he’s back in school, a wonderful school where he fits in, where there are teachers who understand him, who get what his needs are, and who appreciate that sometimes a little cocooning from the rest of the world is not a bad thing. I thought the folks in our new district were going to fight us on placement – this school is not inexpensive, but thankfully they didn’t. So hang in Peter, just three more days. I hear myself repeating this mantra in my head, over and over, like the lyrics to a song I just can’t shake. Hang in, hang in, hang in. I say it for him, my stoic, soon-to-be teenage son, and of course, I say it for me.

May 5, 2013

May 5, 2013

Mudge Pond, Sharon CT (May 4, 2013)

Mudge Pond, Sharon CT (May 4, 2013)

May 5, 2013.  Spring officially has arrived in the mid-Hudson Valley, but it sure has taken its time.  First came the Forsythia, then daffodils, cherry trees, and now even a few tulips.  Grass has finally transformed the barren landscape just as the spring leaves arrive. The nights are still cold, unseasonably really, but the days are warming gloriously.  I have never taken our town, our beautiful countryside, for granted, and I certainly mustn’t now.  We’re moving to Montgomery County, Maryland, a fact that leaves me feeling both excited and a little forlorn.  I love Red Hook and the Mayberry-like existence that all its residents enjoy.  Unlocked homes, unlocked cars, unlocked bikes, and a friendly smile at nearly every turn.  Given the natural splendor that surrounds us – the organic farms, the Catskill Mountains, the historic buildings, the mighty Hudson River, I don’t understand why the area isn’t overrun with transplants.  But of course, I’m glad it’s not.  We’re moving because I’ve taken a position with an environmental nonprofit in Washington, DC.  I’m going back to work full-time.  It’s a dream job for me but it wasn’t an easy decision.  Not only will it be hard leaving the home we love, it feels like we’re jumping off a cliff when it comes to Peter, and even Sophie.  We finally have both kids in wonderful schools and now we’re yanking them out.  Peter’s time at Green Chimneys has been nothing short of transformative.  He arrived there, almost two years ago, a confused, angry, out of control, and self-abusive child.  We feared for his safety and for that of our daughter.  Today he is an increasingly confident eleven-year old, a leader in his classroom and his dorm.  He’s proud of his accomplishments and so are we.  He is more centered, regulated, and connected than we ever dreamed possible. But he’s also vulnerable, and all involved in his treatment realize that he requires continued intensive support to remain successful.  In every way, his ability to cope with the outside world is as fragile as the many seedlings fighting their way through the soil toward the warm spring sun.  And so what will Maryland bring?  The good news is that Peter will be transitioning from residential treatment to a day program.  That constant feeling that something’s wrong, that our family’s not whole, that I’m missing a limb, will surely disappear.  But the staff at Green Chimneys keeps the kids busy from the moment they wake up until the exact moment the lights go off at bedtime.  It’s a key component of their success formula.  Children with self-regulatory issues don’t cope well with free time.  It’s not possible to replicate this kind of regimentation (albeit benign) in the home.  Peter is going to have to cope with less structure.  He’s going to have to learn to occupy himself, at least a little, after school and on the weekends.  He’s going to have to learn to handle change in plans and the occasional unexpected . . . whatever.  For our part – and wow, I do realize that most of his success (and thus our family’s) depends on how Pat and I handle the every single day around-the-clock challenges, we’ll need to find a way to remain patient, forever consistent, vigilant, and braced against provocation.  A tall order, especially given that all of us are facing so much change.  For me, a new career, a long commute, a relinquishing of some of the day-to-day responsibilities.  For Pat, who works from home, it means more childcare, more Peter, more errands in gridlock traffic.  For Sophie, a myriad of change conspiring to fuel new anxieties: a new school, new kids, a new “forever” home (this will be # 3), and a formerly volatile brother re-entering her daily life.  For all of us, saying goodbye to the landscape we love.  Just today we watched our neighbors sheering llamas and alpacas for the 4-H club.  I doubt we’ll be running into llamas much in Maryland.  All of these changes are stressful but well within the boundaries of what any family faces in the midst of major change.  But as always, the health and tenor of our family depends primarily on Peter’s state of mind, and so his adjustment is the wildcard.  Will a new school district fight us in terms of placement?  We and Green Chimneys feel strongly that he needs to be in a specialized, private day treatment program, and we’ve got our eye on a few. His treatment team laughed, literally, at the idea of Peter re-entering a public school program, even an imbedded self-contained one. I’m hoping the fact that he’s coming from an RTC (where he has a 1:1 aide), and that we’ve already taken a school district to hearing and won, will squash any thoughts on the new CSE’s part that they can handle Peter in district.  They can’t.  We’ll file for hearing immediately should they signal otherwise.  We won’t let another school district rip our home, our family, our stability, and our safety to shreds in an effort to save a few dollars or prove a point.  Hopefully the saber rattling won’t be necessary.  I’m doing my best not to focus on the what-ifs right now and instead attend to what’s before me.  Today it’s sorting through closets, and barbequing, watching llamas and grocery shopping, and hopefully playing cards with the kids and Grandma after dinner.  It’s late afternoon and the weather is perfect.  I drive down my road (in my convertible) and breath in the fresh scents of spring in the mid-Hudson Valley.  I’ve tried for years to come up with viable employment here but it just isn’t possible.  Mine is a city girl’s career.  And so soon we’ll be heading to the city, where energy abounds to help propel us into this next chapter of our lives.  In all likelihood, Peter will become an adult there.  Not in the insulated, blissfully frozen-in-time Town of Red Hook, but in a large metro, urban environment with lots to offer and lots to tempt.  But I’m ready for this.  I’m excited about my job and I’m glad Peter’s coming home.  I just hope everyone else is ready too.

November 7, 2012

November 7, 2012

New Jersey (October 2012)

New Jersey (October 2012)

November 7, 2012. As temperatures fall in the mid-Hudson Valley, as late autumn breezes cajole the last stubborn leaf from its perch, I have much upon which to reflect. Superstorm Sandy somehow missed us, the conspiring, unrelenting forces of wind, rain, colliding weather fronts, and warming oceans bypassing our town with an unexpected wink of the eye. I’ve never understood why some are spared while others suffer, God’s role, if any, in the drama of our lives remaining impossibly muddled, at least to me. Another Nor’easter is on its way, though this one is predicted to bring snow, not rain, and I pray it spares the northeast from further devastation. My friend in hospice lost her battle to cancer last week, her last days racked with pain that even the strongest opiates failed to quell. I felt relief when I heard the news because no good ever comes from that brand of agony. This woman led a just and purposeful life, yet there was nothing fair about the way she suffered. Peter, whose capacity for compassion seems almost divinely instilled, also has been barraged with an unfair, overwhelming array of assaults that rob him daily of both faculty and opportunity. These kinds of juxtapositions are impossible to align yet we’re tasked with making sense of them throughout the entirety of our lives. The weekend before last, Peter’s impulses, which can be dangerous at times, prevailed over his increasing ability to control them. Though it’s tempting to blame what became a disastrous weekend on the storm barreling toward our region – along with the preceding uncertainty, stress, and change in routine, it wouldn’t be true. Peter was completely unaware of the storm until Sunday night and even then showed little appreciation for the danger it presented. But both mornings he woke up sullen and grumpy, a fail-safe forecast of how the rest of the day will unfold. On days like these he drags his feet, hunches his shoulders, whines when he walks, and pulls at his hair and glasses in response to even the most mundane request, such as to get dressed or use the toilet. The simple truth is that he labors more heavily on some days than others. The Saturday before last, I hears the unmistakable howl of an injured child and I ran outside to find Sophie trembling, her face pale as she clutched her wrist. She could barely speak but the horror in her eyes let me know that whatever happened was Peter’s doing. He threw a heavy, rock-hard plastic ball at her, with as much force as he could, from very close range. At first I was afraid her wrist was broken but after a half hour of ice and a dose of Motrin, she quieted down. Our neighbor, who is a nurse, stopped by and felt that it was a deep bruise, not a fracture. It turns out she was correct. Peter could not explain his behavior other than to say she had been bothering him. The next day, he continued his out-of-character actions by laughing hysterically while he kicked a boy who had fallen on the ground. By all accounts, this attack, which took place during his best friend’s birthday party, was unprovoked. It turns out that Peter didn’t even know this child. It’s a good thing the father was nearby because the boy he went after was twice his size and apparently ready to beat the crap out of him. And honestly, who could blame him? The father called us, thankfully, and asked that we pick Peter up immediately. I don’t know what triggered these episodes. On the way home from the party, Peter began hitting himself and pulling his hair. He screamed that he wanted to kill himself. He was embarrassed, ashamed, frustrated and perhaps most of all, confused. I’ve learned a trick or two over the course of the last eight years and was able to get him calmed down before he did any further damage to himself or anyone else. By the next day he was more or less back to normal, the incidents forgotten. He went back to school Tuesday night after the storm had moved out and we brought him home again last Friday. The next day, Peter and I were sharing a few quiet moments in our bedroom before Pat and I needed to leave for my friend’s funeral. As he watched me put on my jewelry and comb my hair, Peter told me that he was sad I had lost my friend. I assured him that I was too; but I also tried explaining that it needed to happen. She was not going to get any better and she was in pain. I told him that I was relieved that her suffering was over and that she was now with God. Almost instantly, his eyes filled and he began to sob. My son, the boy who attacked his sister and a stranger only days before, without explanation, was overcome with grief and sympathy. “I didn’t know she was in pain,” he cried. My beautiful, beautiful boy. Until then it hadn’t occurred to him that dying could be painful and that my friend may have suffered. I don’t spend much time anymore imagining what Peter would be like had he been conceived and born under different circumstances – I realized some time ago that it’s the wrong question to frame, but I couldn’t help it just then. Why this child, with astonishing ability to empathize and an emotional intelligence that is blooming with increasing depth and richness, has to endure these deficits, deficits that could have, should have been prevented, is impossible to understand. As I prepared to honor my friend’s memory that afternoon, I made a little extra room in my heart and mourned for Peter’s loss as well. For his damaged brain, for his neurological outbursts that cause him to act in ways that he can’t explain and for which he’s ashamed, and most of all, for appreciating that he now and forever understands that even the last moments of our lives can be – and often are, filled with struggle and pain.

October 25, 2012

October 25, 2012

Fall 2005

October 25, 2012.  Yesterday a friend and I drove into the city to visit another friend who is dying of cancer.  Two months ago this woman was attending the county fair, sick but committed to embracing life and envisioning health restored.  But now she’s in a hospital for the terminally ill, where countless strangers – caring, compassionate people, work to manage her pain, both physical and otherwise.  She is quickly wilting, slipping away.  It’s plain to see that death is near.  As if he’s withering too, her husband no longer seems the robust physical presence that he was only a few months earlier.  She’s on an inevitable slide, but it’s a path from which he’ll soon be made to veer.  His wife is preparing for death, which means he and their grown children, despite unshakable solidarity, are destined to re-enter the world of the living.  It’s a devastating time.  But still, as my friend and I approached her room yesterday, with a mix of fear and determination, we came upon a slew of people who had come, like us, to remind this widely adored woman that she is cherished.  Like most who visit the dying, we both offered and sought reassurance.  We had to wait our turn, though, and despite the circumstances, the thought made me smile.  Even with death looming, the way this brave woman continues to live her life draws people to her like a magnet.  I can’t imagine a more life-affirming gift – the ability to give and receive, with great appreciation, the love that resides in us all.  Reflecting last night upon our visit, a visit from which I left clearly shaken – I bumped into a pole in the parking lot and then drove 20 miles in the wrong direction, I recalled something my friend once told me.  “Imagine a more hopeful outcome,” she said, eyes bright but fierce with conviction.  “Imagine what Peter can be, not what he can’t.”  Maybe she knew it, maybe she didn’t, but in those simple words, words spoken without malice or judgment, she offered me a map toward the future, a way to envision tomorrow without the incredible fear that so often – especially in those days, held me hostage.  Eight years ago, Sophie, Peter, Pat, and I became a family.  Today is our Happy Adoption Day, and we are heading, the four of us, toward an undeniably more hopeful future.  My friend helped teach me that life is about moving forward, about seeing possibilities, dismantling roadblocks, and about looking for joy.  As her journey comes to a close – and as my family’s journey in many ways has been reborn, I thank her for the lesson.  I thank her for believing in us when I had lost faith in myself.  And mostly, I thank her for the gift of her friendship, a friendship that in many ways, and for many reasons, was still in the process of blooming.  Were she able, she might pat me on the back with her can-do attitude and in honor of today’s anniversary simply say, “well done”.   She’s not in a position to do that now, but I can return the accolade.  If anyone deserves a “well done”, it’s she. 

September 19, 2012

September 19, 2012

September 15, 2012

September 19, 2012.  I find anger easier than sadness.  We externalize anger, we tell ourselves but for that other person or event, we’d feel more rational, calm, emotionally even.  Anger can be destructive, it can leave victims scattered far and wide, but it’s also readily dispersed.  I used to be so angry with Peter – for the harm his disabilities did to our family, our marriage, my career, my sense of who I was, and who I wanted to become.  At times, this anger gave me energy that I channeled, using it to wage war against enemies perceived and imagined, anyone who got in the way of reaching our son, of stopping the madness.  I also used it like a shield, protecting myself against the searing pain of self-reproach, allowing it to wedge distance between who I felt I was and that less certain place where doubts and regrets find harbor.  But then it went away.  The anger just went away.  Peter’s and my perilous but ultimately successful journey to intimacy snuffed it out.  With the anger gone, I was left alone to examine my role in our family’s course, good and bad, alone to ponder how to move in my life without this compass forged from ire.  There was space where none had been before.  I’ve been learning to live in that space – to even revel in it, but now a kind of sadness is taking hold.  I find it’s draping my view, the landscape of possibility, choice, and consequence, like heavy, velvet curtains.  For so long I tried to keep my son at arm’s length, the anger helping to protect me against emotions too difficult to absorb.  But I wasn’t successful, obviously, and for that I’m very grateful.  I’ll never be afraid to love my son again.  Peter and I are now as emotionally connected as conjoined twins.  It’s a thing to celebrate and I mustn’t malign what I realize is a soaring accomplishment.  But this lifeline between us is also what’s causing my sorrow.  Peter’s melancholy of late is more contagious for me than the flu.  I ache at night hearing the hurt and loneliness in his voice, a depression growing alongside his mind and body.  He’s becoming more aware of his disabilities.  He’s beginning to visualize the perimeter of his capacities.  For instance, he now confides in me that he’s terrified of the bathroom, of the hallucinations that bombard him when he’s alone.  Sometimes, especially in public restrooms, he emerges ashen, the fear evident on his features.  The other day I took the kids to Subway and I could tell he was upset when he exited the bathroom.  “Those teenage girls were making fun of me,” he explains, his head bowed and shoulders limp.  I saw the interaction – they stared at him, probably because he looked like he’d just seen a ghost, but they didn’t laugh or point or heckle.  They just took notice.  But Peter’s emerging self-awareness is also turning into self-deprecation; he’s not always happy with what he sees.  He doesn’t want the baggage he carries and is growing increasingly sad that he can’t shed the weight.  He’s starting to understand that he’s at Green Chimneys not because he learns differently – as we so carefully preach, but because his brain, complements of alcohol, isn’t assembled correctly, and this causes misfirings mostly beyond his control.  We kept him home Monday even though he had school because Pat and I realize that he’s struggling and needs our support.  My every instinct is to pull him to me, to keep him close, to lessen his pain.  This awakening – both sword and shield – is not something an 11-year old boy should be made to navigate alone, at a residential school, with no one there to hold him through this period of uncertainty and grief.  He needs us to lend perspective, encouragement, acceptance, and understanding.  It’s impossible to do over the telephone, and this too makes me profoundly sad.  Later in the day, knowing that in a few hours Pat would drive him back to school, he waits until Sophie is elsewhere and says that he’s going to miss me.  There’s no yelling or screaming or throwing of objects, just quiet tears accompanying a quiet fact.  When I go to him, when he then asks why he can’t be home with us every day, I do my best to explain that Green Chimneys is helping his brain, that what he’s learning there will help him as he gets older, as he grows up and becomes a man.  I tell him it won’t be forever.  It’s a flimsy overture and one he sees right through.  “But I don’t care when I’m grown up,” he wails, tears soaking my t-shirt as I rock his 86 lb frame.  “I want to be just a boy at home with my mommy, right now!”  He holds me so tight I feel his heartbeat rise in rhythm to his staccato cries.  “I want you with me, too,” I whisper, unable, incapable of lying any further.  We stay locked together until our emotions quell and we regain some hold on optimism and better spirits.  There is no doubt that anger is more manageable than sadness.  After dinner, I help Peter gather his things, long pants and shirts, his new spy glasses, and his weighted blanket, which he now wants in the dorm.  I kiss him goodbye and hold him tight.  I realize that both of us prepared in advance for this moment, we are braced against the flood of emotion that swept through only hours before.  What I let slip earlier is still true.  I want Peter home.  Pat later tells me that Peter draped his weighted blanket over his shoulders for the walk back to his dorm.  It’s an all too-fitting image.  The pain of separation is becoming greater than the turmoil his presence exacts.  Whether we can find the supports to have him home fulltime.  Whether we have the reserves to weather, daily, the inevitable storms.  Whether Peter now has the skills to manage less regimented family life.  Whether we can inoculate against the possibility of another horrifying psychiatric hospitalization.  These are questions I can’t answer now but that deserve real consideration.  Before he leaves the house, I whisper in my son’s ear that he’s doing everything right.  He’s quick to retort, my blossoming son, not in anger or defiance, but with quiet admission.  “It doesn’t feel that way, Mommy.”  My heart lurches.  I know what he means.  Peter and I, we’re in that space right now from where sadness comes.

June 10, 2012

June 9, 2012

Assateague Island, MD (Memorial Day Wknd 2012)

June 9, 2012.  Peter’s home this weekend and something curious has begun.  It’s happened a few times in the past month or two but it’s taken me a while to assimilate this new chapter in our relationship.  A few weeks ago at dinner he reminisced, with more than a dollop of good humor, how he used to be such a bad eater – and misbehave so terribly at the table, that we sometimes resorted to having him eat separately in the dining room.  “But then I just dropped it all on the floor for the dogs!” he laughed.  “There was really nothing you could do.”  His grammar, word choice, and articulation are still works in progress, but this is essentially what transpired.  And then a few days ago, along the same line, he comments, “Can you believe I used to stuff the toilets till they spilled everywhere?  And then make my nose bleed all over me?”  Yes, I can believe it.  I survived those phases and to date, all the others.  The part I can’t believe is that he remembers these destructive patterns and now can laugh about them.  I had no idea he possessed that kind of self-awareness, either then or now.  On days like this I can imagine our son when he’s 22 or maybe 25, a young man with a strong, chiseled body, darkly tanned in the summer, and a mischievous smile that draws women like flies to sugar.  He is handsome, yes, but he is also kind.  He’ll struggle with memory, processing, money management, and, perhaps most worrisome, the ability to distinguish between those who wish him well and those with more predatory intentions.  But I imagine him standing on his own.  He’ll have a job – hopefully in an area that interests him, like video games or landscaping, and with any luck, he’ll be proud of his accomplishments.  I hope he’ll continue to look back on his journey with the same brand of humor he’s demonstrating now, the good-natured ability to acknowledge his past in order to help propel him toward his future.   Miraculously, he regularly proclaims that he intends always to live with his mom, or at least next door, a fact that both astonishes and comforts.  Opening my heart to this child was an intense struggle, the boy who hurt himself as much as – or even more, than he hurt me, but now the door to my affections is swung wide open, and the view grows more spectacular.  As long as I have a home, so do both our children.  The four of us spend the day together lazily, with me doing my best to pry Peter and Sophie away from their cavernous playroom toward the beautiful day outside.  When I finally succeed, I wonder whether my prediction that Peter might like landscaping is too ambitious.  He loves to help outside in the fall and early spring, but I realize now that summer is a different matter.  The insects make him swat and spin and growl with consternation.  He jumps on the trampoline and squeals, his body suddenly arched and rigid, whenever a gnat or fly swirls past.  “I want to go inside!” he howls.  And so I concede.  The presence of insects remains a major sensory problem and creates in him marked over-reactions.  Maybe the bugs – or more like the absence of bugs, are the reason I spend so much effort getting myself and the children to water during the summer, either the town pool, our favorite lake, Mudge Pond, or the ocean. Water is a weapon against the creepy crawlies, at least the kind that dominate the skies.  Plus, the kids and I are as drawn to water as beetles are to my rosebushes.  Pat would rather spend the summer hiking in the mountains, but he’s forever the good sport.  Between Peter’s bug issues, my mangled ankle, and Sophie’s inevitable cries of boredom and exhaustion (that ensue after 10 minutes on the trail), the opportunities are few and far between.  Like all parents, the two of us occasionally wonder when we’ll get to resume, on our own or as a couple, some of the activities we enjoyed pre- children.  Given the dynamics of our family, and our alarmingly increasing ages, it seems possible that “our” time might never come, but that’s okay.  We’re growing, we’re stronger, and we’re seeing progress where before we saw only disaster and hopelessness.  The kind of mountain climbing we do these days is virtual, but there’s no doubt we’ve scaled countless peaks to reach and help Peter, and there’s bound to be more ahead.  We try and will continue to do the same for Sophie, though her needs are subtler and in many ways more tricky to traverse.  But for now, with the bugs filling the airways and the sunny day to lure us along, I think I’ll pack the beach bag, load up the kids, and head to the lake.

June 4, 2012

June 4, 2012

Assateague Island, MD (May 24, 2012)

June 4, 2012.  We’re 10 days home from seeing Dr. Federici in northern Virginia for Peter’s bi-annual neuropsychological assessment.  Dr. Federici’s a significant reason why we’ve come as far with our son as we have, his evaluations providing a litmus test upon which we measure past efforts as well as an invaluable roadmap for the future.  These visits are difficult for Peter, though.  They’re demanding of his focus and attention in a way he’s not quite equipped to handle, and the information gleaned from them hasn’t always been easy for us to process.  Words and phrases like psychosis, autism, lifetime care, FAS, significant support, mood dysregulation, and cognitive deficiencies  – they’re difficult to swallow and enough to scare anyone.  But those particular descriptors didn’t loom so heavily this time.  Something has changed – something really significant, and great.  The very best part is that Pat and I knew it before Dr. Federici even told us.  Peter is better.  Not just a little bit better but about 40% better in every area of functioning (except academics where there’s been little gain).  I’ve never seen Dr. Federici look so pleased.  I couldn’t decide whether he was beaming like a proud papa or looking more like a small child ready to bust with exciting news.  Either way, we sat in his office after the testing, relaxed and full of banter, trading complements and accolades like a small band of combatants who’ve just conquered a formidable enemy.  After almost 8 years of constant effort and struggle, we may have turned the corner with the boy I once described – quite accurately, as feral.  Today Peter is happier, more centered, more trusting, showing better reasoning and problem solving skills, demonstrating improved language skills, and exercising more independence and ability to adjust to changing circumstances.  Dr. Federici credits this positive leap to two things: the cumulative effect of our efforts and our success in finally getting him placed in an appropriate therapeutic environment.  The only asterisk that looms over my otherwise warm and glowing feeling is the knowledge that Green Chimneys School is achieving what Pat and I could not.  I realize that we’ve brought Peter a great distance, and in some ways I recognize that many others might have given up where we persevered, but I still ache with the wish that this last, most victorious push could have been achieved in the intimacy of our home.  I’m thankful that Green Chimneys is achieving what we couldn’t, but the truth is, I’m also a little resentful and jealous.  Peter wants to be home, he clings to me during our visits and his eyes well up with tears on our drive back Sunday nights.  It’s hard to reconcile this Peter with the boy who used to smear feces on himself and spit on me;  but I suppose knowledge of our troubled past only makes the hopefulness of the present that much more luscious and remarkable.  The only problem is that I want to whisk my son away, back into my arms, to the love that’s grown as steady and unstoppable as the rising sun, but I know I mustn’t.  Sometimes I feel like an estranged mother contemplating parental kidnapping.  There’s a cost to progress, at least in our case, and it comes in the unwelcome form of mutual heartache and homesickness.  Peter needs the 24/7 supervision, the 1:1 staff who help keep his impulses in check, his distractibility minimized, and who constantly talk him down from his various tirades and skewed perceptions.  We can do this at home – I’ve become particularly adept at various strategies, but I can’t sustain it indefinitely.  I realize that it’s only a matter of time – 10 days, maybe 2 weeks, before Peter’s challenges begin to outwit my stamina, patience, and commitment.  I realize, with more than a little melancholy, that the reason he’s 40% better is because Green Chimneys and its plethora of strong young men and women on 8-hour shifts don’t give his mind or body an opportunity to decompensate or unravel, at least not for very long.  I should be grateful for this and in fact, I am.  It just stings a little.  A wise doctor told us almost two years ago that Peter needed a system of supports, a circle of providers that extended further and deeper than two parents could simulate or sustain.  I need to realize and believe that Green Chimneys’ victory is our victory too, that the endeavor is a collective one and that it’s not an either/or proposition.  Although my mind knows this to be true, my heart requires a little more convincing.  After the testing, we drove to Ocean City, MD for Memorial Day Weekend and spent most of the time on Assateague Island, enjoying the beach and the wild ponies.  Watching Peter navigate the cold, crashing waves, the gritty sand, the always changing conditions of the shore, without the stiff and bracing posture, his usual guarded, super-sensitized body language, truly was exhilarating.  For the first time ever, he wasn’t the boy on the beach with obvious issues and challenges.  He was just a boy on the beach, a wonderfully happy boy, who alongside his sister, was filled with the ordinary joys that we as parents all hope permeate our kids’  childhoods.  When we got home, and Peter was tucked into bed before going back to school the next morning, he hugged me fiercely and asked, “Did I have a good trip, Mommy?”  Knowing he was asking about his behavior and not whether he had a good time, I smiled into his eyes, fighting back my tears.  With as much composure as manageable, I assured him that he did.  And it’s true.  Peter, our beautiful, enigmatic, and resilient son, had a wonderful trip indeed.

December 22, 2011

When Rain Hurts – Publication Date Sept. 2013 (Red Hen Press, LA)

November 2011 (Red Hook High football field)

Red Hen Press, a nonprofit literary press in California, is publishing When Rain Hurts, which will be released in trade paperback on September 15, 2013.

In the published book, a narrative chapter will be preceded by a journal entry and photograph.  I have many, many more journal entries than chapters so I’ve picked the ones that I think offer the most complete story.

The personal stories, support, information, and compassion you’ve shown as I struggle to become a better parent and more effective voice for FASD never ceases to amaze or humble.

If you’re new to the blog – welcome.  To read the book’s beginning chapters, please scroll to the bottom of this screen, hit “next page” on the lower left corner, and then scroll again to your screen’s bottom. That’s where you’ll find a brief Introduction & Prologue, then Chapter 1, etc.  Read “up” for each subsequent chapter.   They’re a little like diamonds in the rough – they’ve been edited and polished significantly since posting, but you’ll get the gist.  Older 2010 journal entries are filed under “Pages” on the right hand column.

Thanks – Mary

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