When Rain Hurts by Mary Evelyn Greene

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.

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July 15, 2012

July 14, 2012

Peter tubing with his cousin Danny and daughter Amelia (Boone, NC, July 2012)

July 14, 2012.  The air quivering with heat and lake levels low from lack of rain and blistering temperatures, we greet the scorching day with folding chairs in arms, intent on staking out a shady spot amidst the dusty, burnt terrain.  Sophie, Pat and I have taken the one hour trek to Green Chimneys, where the annual family picnic is being held at a nearby sister facility.  There is an inflatable obstacle course on the lake for the kids to climb and navigate, but the water is too low and so the kids, mostly boys, stare longingly, arms folded over bare chests, at the now unattainable goal. Pat and I play volleyball with our kids and before we know it, boys of various ages and abilities have joined us on either side of the net.  Soon an energetic if not disorganized game ensures.  Sophie, no longer the epicenter of her parents’ attention, hangs her head and walks away.  Later, Pat and I enjoy a few minutes’ chat with the founder of the school, Dr. Sam Ross, an octogenarian zealously devoted to his mission and the kids he serves.  Still full of energy and verve, I can only imagine the robust force he must have been in his more youthful days.  He is a beloved leader of young minds and hearts and I watch as he surveys the picnic, the mass of healing children and parents, his rheumy eyes benevolent and triumphant, a portrait of pride derived from a lifetime of selfless work and accomplishment. Peter is glad to see us but a little grumpy from the heat and the realization that we are together today for only a few hours. The separation between child and family is unnatural, intuitively wrong, and we all do our best, in our own ways, to ignore this fact so that the reality doesn’t overwhelm and smother what is meant to be a happy day. I try to stay busy with both kids and we spend a lot of time swimming in the lake.  My family shouts playful jeers as I’m made to pass the deepwater swim test, just like the children. Peter and Sophie clap afterward as the lifeguard writes a fat “X” across my hand, memorializing my success.  Pat watches from the dock with towels in hand.  For the most part, Sophie is fine as long as it’s just Peter and us, but when I start talking to other kids or adults, she slinks off sulking, face transformed into an angry caricature of herself.  She resents these outings, the attention given to Peter that is more streamlined and less demanding than the daily routines of home. She doesn’t appreciate that our time with Peter is limited for now and that the nature of our relationship is therefore different – at least temporarily, from our relationship with her.  Though I try to reassure her, there is little I can do to alter this fact.  She has us 24/7, for better or worse, and Peter does not.  After an attempt to chase a few rubbery burgers with several cups of water, we head over to another part of the grounds where a climbable water slide has been set up.  One of the counselors sits atop the inflated climbing wall, ostensibly there to maintain order and safety, but he’s spraying the kids in line below with a hose, setting off rounds of gleeful protest.  Pat and I, seeking yet another spot of shade, strike up a conversation with a couple that recently enrolled their 6-year old as a day student.  It’s not long before we’re swapping war stories of contemptible treatment by our respective school districts.  Forever amazed by the fact that although individual circumstances differ, the overall plot remains unchanged, I listen with amusement as the mother, an educator herself, shares with us that she shoots certain individuals in her district a not so discrete bird whenever their paths cross.  So many Green Chimneys parents are combat veterans who’ve fought their districts tooth and nail to get the appropriate placement for their special needs children.  I’m glad we’ve met a few more veterans today; shared experience breeds hope and comfort and reaffirmation that the prize was worth the fight.  Earlier one of Peter’s friends eagerly approached, wanting me to meet his mother, whom he sees only rarely.  He is a sweet but troubled boy with a difficult background, always happy to lap up the extra interest and attention I try to show him whenever possible.  His mother matter-of-factly tells Pat and me that once she works through her own issues, she’ll be able to bring her son home.  The love in her eyes is apparent but there’s also a deep sadness and lack of confidence emanating from within.  She is the other face of Green Chimneys, a mother fighting just as hard for her child but for very different reasons.  When the picnic winds down, we decide to take the kids for an early dinner and ice cream.  We aren’t quite ready to say goodbye and are grateful Peter’s social worker approves the impromptu off-grounds request.  When we drop him back at school, later than we planned but earlier than I’d like, we remind Peter that he’ll be home the following weekend and that it’s only a few days away.  We kiss goodbye and hug each other tightly.  Then, as I plunk myself back into the car for the long and often quiet ride home, I turn my attention as a mother back to Sophie, one hundred percent. This unnatural shifting of familial rank and place throws her and the rest of us off.  I’ve come to appreciate that this pendulum effect is just one of the many forms that payment for the price of progress takes.


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.

May 1, 2012

May 1, 2012

Image

Shaker Village, Hancock, MA, April 28, 2012

May 1, 2012.  I struggle to keep my voice calm and cheerful as I listen to Peter on the phone, which has become our lifeline to each other as surely as it was when Pat and I dated long-distance, NYC to Atlanta, 15 years earlier.  Dropping him off at Green Chimneys last night, we shared the now familiar ache derived from having a 10-year old child separated, more days than not, from the rest of his family.  “When I’m discharged, Mom,” he asks plaintively, “can I join the Boy Scouts?”  It’s an unexpected question, Peter never having expressed any interest in Boy Scouts in the past.  “I don’t want to be bored when I go home,” he explains.  “I know I gotta stay busy.”  On occasion we carpool with another Red Hook family whose teenage daughter also attends Green Chimneys.  When we arrived back at school Sunday night, the teenager announced that she was being discharged in August and will be attending a different but less restrictive special needs all-girls boarding school next fall.  Peter didn’t catch the part about her going to another “sleep away” school, only that she was being discharged from Green Chimneys, and I didn’t have the heart to correct his thinking.  I know Sunday’s conversation is what sparked his sudden interest in discharge, which is of course the ultimate goal of all Green Chimney residential students.  Despite knowing that this has stirred up his homesickness, I’m nonetheless struck by the fact that he has developed enough self-awareness to know that he needs constant structure, that free time is one of his mind’s worst enemies.  When I speak to him on the phone, listening to his doleful voice, I long to tell him that soon he’ll be back with us on a permanent basis, that “sleep away” school one day will be a thing of the past, but I reply more carefully.  The truth is I don’t know when Peter will be coming home, he’s making great progress in so many areas – like social skills, continence, speech/language, and daily living, but at the same time he’s demonstrating little if any gains in terms of his constant, chronic need for supervision and redirection.  It’s only been 10 months but the reality is that he may always need the 24/7 external brain that Green Chimneys provides.  I fully appreciate that his improved emotional and psychiatric stability might quickly deteriorate were he back home where the level of constant intervention that Green Chimneys supplies simply cannot be replicated on a continuous basis.  It’s a harsh reality and one that I push from my mind with some frequency.  I miss Peter terribly but console myself by recognizing that I might never have felt this way, that we never might have been capable of this closeness, had I not fought for and won his love and trust.  When he’s home now, whether for just a weekend or a longer break, I have learned to relax in his presence and enjoy our relationship without the constant burden of having to teach, re-teach, redirect, or provide consequences.  For the most part, I no longer have to teeter along the precipice of enjoying my role as mother and protector while constantly aware that disaster and chaos could plunge all of us into darkness at any moment.  But Peter doesn’t understand this, he couldn’t possibly, and frankly, I hope he never does.  I don’t want our son ever to think that he’s a burden, that the effort needed to care for and protect him is more than we are equipped to handle.  And so as I speak to him on the phone, I distract him by reviewing when he’ll be home next and what our plans are for the upcoming weeks.  I acknowledge that he misses home and that I miss him too, but I do my best not to let his wistful voice tear at the fabric of the faith I have in our decision to enroll him at Green Chimneys.  In so many ways, the school is an oasis, both for students and parents.  I have to remember that it’s a place of growth, acceptance, and healing and that its existence is an extremely positive presence in our lives.  But here’s the thing: I also can’t forget that positive change, at least in our case, is not without toll.  As we say goodnight, I propose that we meet on the moon in our dreams, a game Peter and I always have played and one that makes him truly smile.  I tell him to look for a polka-dotted spaceship and he tells me that his will be blue with a big yellow star on the tip.  We agree that I’ll bring snacks and he’ll bring a soccer ball.  I tell him I love him and kiss the phone, knowing that in our dreams, we are always together.

August 29, 2011

August 29, 2011

Dutchess County Fair, Aug. 26, 2011

August 29, 2011.  I’ve been a half-hearted insomniac most of my life, teetering on the edge of clinical significance, as seems the case with so many other challenges in my life!  As I lay awake at 2 a.m. watching Mystery Diagnosis in the bonus room – a show Pat claims is at least partially responsible for my insomnolence, I can’t help but giggle to myself.  Our dog Pippin, loyally snug in the crook of my arm, looks up at me, sleepy but enthused.  It seems we share synchronicity of mood, a divine pleasure I think any dog lover understands and cherishes.  I was joking with Pat the other day in the car, accusing him, at age 63, of vacillating between adolescent rage and geriatric forgetfulness.  A little erratic behind the wheel, I honestly couldn’t tell whether he was experiencing road rage, absentmindedness or some combination thereof.  He thought my description funny and the memory of that drive had me laughing in the middle of the night despite the weight of the worries keeping me awake.  But all kidding aside, I think he and I are suffering from the same symptoms, they’re just manifesting differently.  It’s been nearly ten weeks since Peter entered Green Chimneys as a residential student, but we’ve yet to reach a new equilibrium.  I’ve read the Out of Sync Child cover to cover, maybe more than once.  If only it provided guidance for the out of sync parent, which is surely what Pat and I have become.  Before Green Chimneys, we were on a tumultuous ride with our now 10-year-old son, and one that didn’t always produce desired results.  But it was a ride we nonetheless came to understand.  It was familiar.  Now things have changed for Sophie, Peter, Pat, and I.  It’s like we’ve been flung into the realm of some metamorphic process and we’re waiting with bated breath to see how we’ll emerge.  Will we all become butterflies or will some combination of us turn out less desirably, like say, a newt?  Peter came home for his first lengthy break on Friday afternoon.  He doesn’t have to go back until Labor Day.  He’s lost a little weight, seems more wistful than I remember, and is acting more than a little shy.  Despite the awkward melancholy, we picked up his meds at the Health Center, said our goodbyes to staff, and headed straight to the county fair, which was a good thing because we later learned it was closing at midnight due to the anticipation of Hurricane Irene.  Our kids look forward to the fair almost as much as Christmas or Halloween and I would have hated them to miss it.  When we finally got home, exhausted, grimy, and smelling of corndogs and fried dough, I watched as Peter brushed his fingers lightly along the kitchen island and then the kitchen table.  The excitement of the fair had pushed the melancholy aside but now it was back.  When I asked what he was doing, he responded, “It feels like a new home, Mom.”  I couldn’t believe what I’d just heard, and yet I knew exactly what he meant.  Despite the fuzziness that coats so many of his thoughts, in that moment he experienced complete clarity of mind.  I almost broke down in front of him but I fought back my emotions, bit my quivering lip, and gave him the biggest hug he could handle.  “Your home will always be where I am,” I whispered.  I’m not sure he bought the half-truth but he was gracious and stoic enough to leave it alone.  We have changed, our little family of four.  But instead of slumbering peacefully until the final transformation is complete, I remain alert and restless, pensive but also steadfast in my conviction to stay the course.  I must have faith in myself, my husband, of our decision to place Peter in a residential school, and in the strength and resilience of our two remarkable though disproportionately wounded children.  Our metamorphosis, it seems, has only just begun.  I’m hoping all four of us have the stuff from which butterflies are made.

July 3, 2011

June 30, 2011

Mudge Pond, Sharon, CT, Father's Day 2011

June 30, 2011.  “Don’t forget to bring my Pokemon cards,” Peter repeats as I tell him Lindy and I plan to visit today.  “I need ALL my stuff, Mom.”  Hearing his voice, so upbeat and focused on the here and now, his mind incapable of worrying over the future or dwelling on the past, offers both comfort and distress.  Ten days ago, Pat, Sophie, Grandma and I took Peter to Green Chimneys School, a nearby residential treatment facility, to live, grow, and hopefully heal.  It turns out I’ve been living a lie these last few years, telling myself I could handle Peter’s escalating needs, his unpredictable thoughts and warp speed impulses.  No one wants to admit her child is more than she can handle, especially an adoptive mother, and especially someone like me, who takes pride – or at least solace, in a certain stubborn resolve to march through adversity.  But his attempt a few weeks back, to catapult from a second story window in the middle of a tantrum, disabused me of that notion once and for all.  No psychiatric hospital would take him after the window incident – we were told his management needs exceeded their current staffing capabilities.  So we held our breath, crossed our fingers and said a little prayer until his admission day at Green Chimneys arrived.  We also bolted his bedroom windows shut, used an alarm on his door and kept him downstairs all day every day until bedtime.  He’s been at his new school for 10 days now, and we can visit whenever we like, though he can’t come home or leave the grounds for one month.  After this period of acclimation, we will bring him home every other weekend and for holidays and school vacations.  My hope, laced with regret but steady with resolve, is that this experience can soothe his tortured soul in a way our home, our love, our daily family life, could not.  A child like Peter has a way of consuming one’s thoughts, and it’s no different – at least not yet, now that he’s at Green Chimneys.  This renowned school was an original pioneer of animal-assisted therapy and the unfulfilled farmer in me drinks in the many sights of the lush, well-tended farm and immaculate barns and pens.  Peacocks roam the grounds freely, as do guinea hens and other birds.  The year’s crop of baby lambs, goats and cows are still small and cuddly enough to illicit involuntary sighs of joy, and there are miniature horses, ponies and standard horses at almost every turn.  Children are riding horseback while others help train a group of 4-month old Golden Retriever puppies slated to become therapy dogs.  I immediately wish I could work there, both to be closer to Peter, whom I ache for despite the obvious peace and calm his absence has brought, and to be a part of this healing community of people, livestock and pets.  Right now Peter is still uninterested in the animals, the flies, the odors, the work involved are more than he wishes to navigate.  But with time, and tremendous support, he may come to understand that there is a path, a way to live in and view the world that makes sense, where effort produces results and where good choices lead to positive outcomes.  Right now his mind, his world, his every waking minute is filled with fiery chaos, and for any number of reasons, Pat and I aren’t the ones who are going to be able to douse the flames.  It’s a difficult thing to admit, but I know its true.  We have brought him so far, but we reached a wall we simply could not scale.  He needs more.  Does he mourn the temporary tear in our family’s fabric?  Is he wondering why he’s sleeping away from home, or consider when he’ll be returning?  I don’t think so, and for Peter’s sake, I hope not.  It’s our job to shoulder those burdens, to decide what’s best for him in the context of what’s necessary for the rest of us.  So right now I assure him that I’ll do my best to locate his beloved Pokemon cards, and I look forward to taking him in my arms so I can feel his silky skin and hopefully convey – on a cellular if not conscious level, that he is cherished.  I need him to know that he is and always will be my special boy, a child who held my heart hostage for years but who with bravery and brawn has transformed us both into persons with unexpected capacity for resilience, compassion and love.  

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