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.

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.

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