When Rain Hurts by Mary Evelyn Greene

January 23, 2011

January 23, 2011

Poet's Walk (January 22, 2011)

September 23, 2011.  My second interview with the nonprofit went well enough, at least I think, but I won’t learn the outcome for another few days.  In the meantime, I have my niece Erin’s visit to look forward to, and distract me.  A junior at Boston College, she’s been my “little cabbage” from the day she was born.  In a few more weeks, she heads to Australia for a semester abroad.  A somewhat timid little girl, she now possesses the quiet self-confidence and adventurous spirit to venture halfway around the world without knowing a single soul.  We pick her up from the train station later this afternoon, a fact that has Peter spiraling toward self-destruction.  Anticipation is one of the hardest emotions with which he copes, largely, I think, due to his inability to place himself or events in time.  To Peter, a relatively casual thing like a cousin’s visit must feel how I might feel if someone told me I was going to the moon, without benefit of training or advance notice, sometime within the next one hundred and eighty days.  In other words, he’s completely freaked.  “Coming Erin today?” he asks.  I’m so glad I’m finally able to tell him, yes, today is the day.  When they were younger, Pat and I kept exciting news from both kids until the last possible moment but we can’t do that anymore, not with Sophie’s sophisticated eight-year-old eyes and ears keeping watch for things good and bad at all times.  But even though we can attribute Peter’s recent burst of unmanageability to his cousin’s visit, the sad truth is that he seems less, not more, able to cope as he gets older, stronger, and bigger.  His tantrums and outbursts are happening more frequently, and even more alarming, they’re being triggered by events so small they almost never can be anticipated.  For instance, Peter spent twenty minutes or so building a Lego racecar in the playroom late yesterday afternoon.  We’d spent a few glorious hours snow shoeing with our puppy and everyone was tired but happy.  Peter normally can’t follow the directions or sustain his attention long enough to put together something like a Lego car, but yesterday he did, and he was mighty proud.  So were the rest of us.  It’s the first time he’s accomplished something so intricate on his own.  “I wasn’t good for doing this before, Mom,” he beamed, “but now I’m ready!”  We urged him to put it on the mantel or some other safe place, to treat it like a decoration, so it wouldn’t fall apart.  But he couldn’t resist the temptation.  A few minutes later, around dinnertime, Sophie came up from the playroom shaking her head, a mixture of frustration and pity flooding her face.  “It fell apart,” she said, biting her lower lip, “and he’s not in good shape.”  Within seconds we heard him stomping up the stairs, then the door to the basement swung open and I watched, helpless, as he burst into tears and undecipherable raging that deteriorated into his throwing his dirty diaper around and Pat having to put him in his room.  By the time he was in control enough to come down for dinner, we learned that only a single piece of the car fell off and all he would have had to do was snap it back into place.  But the disappointment, the frustration, the flood of emotions he experiences over the most trivial problem, were more than he could handle.  And because this is happening more and more frequently, often several times a day, his issues once again are holding us hostage.  In fact, after significant nudging from our family therapist, we’ve allowed a crisis team into our home, to help us sort out what can be changed and what can’t, and to help us plan for our family’s future, its safety and well-being.  The first night the two crisis intervention women came to our home, I found myself bragging somewhat about how much progress we’d made with our son, at least in terms of attachment, trust, and bonding.  But then Peter being Peter, he did the unexpected when one of the women asked him a series of questions, 95% of which he wasn’t processing.  But when she pared her words down, and asked a single pertinent question, he had his answer ready.  “If you could have one wish,” she asked, “what would it be?”  Without pause, and certainly without apology, he looked Pat and I squarely in the eyes and said “to not have a mom and dad.”

January 13, 2011

January 13, 2011

Lulu LoBrutto, 5 months (January 2011)

January 13, 2011.  Next week I go for a second interview regarding a position I nearly covet with an environmental advocacy group.  It’s a chance of a lifetime, a chance to jump back into a meaningful career, to contribute, and to turn some much needed attention to myself, to my own goals and aspirations, my own sense of accomplishment and purpose.  When I look back over our time as a family, I realize I’ve been happiest, and most sane, when I was immersed in work, teaching at Bard.  My life is still incredibly busy, but my days are filled disproportionately with managing my son’s physical and mental health, his education, and working, always working, to help him integrate more successfully into daily family life.  And it’s wearing me down.  I know I’m giving him my best, at least on most days, but I’m also getting to the point where I’m not sure sacrificing every ounce of every fiber of my being for miniscule progress is prudent, or even very beneficial.  I may have already brought him as far as he can go in terms of attachment and orientation to his world.  It’s very possible that he’s the best that he can be and the time has come to loosen the reigns and somehow expand his circle of caregivers.  When he became our son, Peter trusted no one, he was lost inside his own disordered mind, and was more alone in the world, literally and figuratively, than any child on the planet deserves to be.  Pat and I have changed those facts, substantially, and I’m proud to acknowledge that our son is now a child who knows how to give and receive love, who knows what it feels like to trust and who shows compassion toward others on a daily basis.  There are times he looks at me, shy at first, and then his eyes light up, all at once, as they meet mine.  My heart soars in these moments to heights I never dreamed possible.  They are transcendent in their beauty, and in many ways, nothing short of miraculous.  I realize that.  But I also realize that despite these achievements, Peter forever will require 24/7 care, there’s no doubt about it.  He can’t regulate his own behavior for even a nanosecond and will always need someone to model and talk him through appropriate choices and more generally, help him navigate the everyday terrain of his life.  The professionals in our lives are telling us that Peter needs an entire system of care beyond what we can provide as parents and that its time to start turning over the reigns, at least in some respects.  But even though I accept the truth in these words, I realize that I’m still thinking and behaving as though his condition can be substantially rehabilitated, that I can will our son toward a more meaningful, more complete future.  Maybe I’m not ready to let go of that dream, maybe certain dreams do help us sustain rather than delude.  Or maybe holding onto the hope that Peter will emerge higher functioning than seems practicable is the only rational course of action – after all, to admit otherwise is to give up, and I can’t and won’t do that.  So where does that leave me?  If I’m fortunate enough to be offered this position, can I in good conscience take this full-time job or will I be turning my back on our needy children, on the 24/7 demands of raising Peter, not to mention the less urgent but just as important responsibility of helping Sophie blossom and overcome her challenges?  I think the answer lies in believing in myself, and in realizing that its okay to have my own life, my own aspirations, and that career, family, children (even special needs children) don’t necessarily have to be either/or propositions.  So many women grapple with this balance, there’s nothing new here, but somehow the stakes seem higher because our children are former Russian orphans, and because Peter has overwhelming needs.  Egocentrism at it’s best perhaps.  But one thing I do know: I’m hopeful about this opportunity.  If I’m able to persuade the folks that need persuading that I can contribute substantially to their cause, then I want to find a way to make this work.  I want a chance to rediscover myself in a manner that expands my identity as Peter and Sophie’s mother to include career and colleagues.  I want to think that diving back into my professional field, coupled with my new teaching responsibilities at Marist College, may even make me a better parent.  I’m too consumed right now with the problems, the heartache, and the never-ending, drive-you-nuts redundancy of life with a brain-injured child to have any sense of perspective, or balance.  Plus, the issue of income and benefits can’t be ignored.  Peter’s problems have caused an enormous financial strain, one that Pat bears 100% right now.  The fact that he’s significantly older than I and under tremendous pressure doesn’t escape me, ever.  Our financial safety net has been chewed clear through by private therapists, evaluations, specialists, equipment, medication, relocation, and countless – sometimes foolishly desperate, interventions.  If Pat were to get sick or injured or worse, well, I’m not quite sure what I’d do to keep our family afloat.  Our lives are insecure in so many regards, a hard pill to swallow for a person who craves security and stability.  The bottom line is that I’m very excited about this opportunity and look forward to learning more about the organization and the people who work there.  At my initial interview, I noticed a dog bowl and a large bone in the building.  I wonder – if I’m fortunate enough to be offered the position, whether I’ll be able to bring our dogs (okay, maybe just one) to work!

 

October 15, 2010

October 15, 2010

Pat (Fall 2009)

October 15, 2010.   It’s only mid-October but we’ve already experienced two Nor’easters.  The torrential, prolonged downpours are terrific for the water table but toxic to the autumnal leaves for which our Hudson Valley is so famous.  Still, the scenery is beautiful, the temperature drops further each night, and pumpkins dot the lawns and doorsteps of Red Hook in exponentially increasing numbers.  My husband wishes fall would last as long as summer or winter, but not me.  In my view, the hues of autumn, the reds, oranges, and burnt yellows, are treasured exactly because of their brevity on the palate of our landscape.  Peter’s school driver drops him off this afternoon and though elderly, asks with an almost boyish quality whether we plan to enjoy the outdoors and spectacular views this weekend.  Indeed we do.  This week has been tough for Peter, he likes his new school, I think, but everything has changed, and he’s had to say goodbye to old friends and familiar faces.  After swim practice tonight, we’re picking up his best buddy and taking the kids to their favorite restaurant for dinner.  As much as I want to keep this friendship going, I worry whether Peter can handle the excitement right now.  The idea of taking a friend to dinner wouldn’t overwhelm most 9-year-olds, but to Peter, its like winning a trip to the moon.  The instant I told him, his adrenalin shot up, his body began gyrating, and all kinds of nonsense spewed from his mouth as though a wire had been tripped inside his tangled brain.  Lindy is doing her best to organize his body and mind so that he can attend to the rest of his day, but we’re well aware that he’s experiencing a significant transition, and that to a large extent, its an adjustment we may just have to ride out.  The good news, at least for Pat, is that he won’t be present for tonight’s adventures.  He’s in New Jersey visiting his daughter and granddaughter, a beautiful duo the children and I rarely get a chance to see.  Pat’s daughter struggles with this chapter of her father’s life, which means she struggles with Sophie and Peter and me and all that goes with us.  I do understand, I can only imagine the complex set of emotions I’d feel if my father had embarked on another try at parenthood, but still, I wish things were different.  I wish compartmentalization were not necessary for such a kind, generous, and loving man as Pat.  I wish his daughter could understand that Pat has love enough for all of us, and appreciate, just a little, how difficult, and tragic, his primary shot at fatherhood became.  Our life is so much more complicated because of where we live – financially, educationally, in terms of career, and support, and the sole reason we live here is because of Pat’s unwillingness to be too far from his adult daughter.  He’s already said goodbye to his two sons from his first marriage and he can’t bear even the thought of serious geographical separation from his last surviving biological child.  What I don’t get is why she doesn’t see it, why she doesn’t feel, sense, and breath the unassailable love and affection Pat has for her, and now for his toddling granddaughter.  It’s beautiful really, and something that should give rise to joy and celebration rather than constant work and struggle.  But he’s doing it, he’s putting forth the effort with patience and kindness, and I’m proud of him.  Truly, he’s a beautiful man and one that deserves at least some modicum of peace in his life.  By the time he gets home tonight, I hope to have the kids tuckered out and in bed and little Lulu, our newest addition, installed in her cozy box that fits under my bedside table.  No rest for the weary on our home front either, I’m afraid, but I do look forward to Pat’s return.  Family is a more complicated word today than when I was young and undoubtedly requires significantly more creativity, purpose, and determination than perhaps it once required.  I am 45 years old, my husband is 62, we have two adopted children who were born in Russia and he has two long deceased sons, a married daughter, and an almost 2-year-old granddaughter.  How’s that for complicated?  A born and bred New Yorker, he loves opera, books, theater and museums, and though I share all those passions except opera, I’m a southern girl who loves my Gator football games and the kind of barbeque you simply can’t get your hands on anywhere north of southern Virginia.  We work, Pat and I, because of and despite our differences and similarities, and for that I pledge always to be grateful.  This weekend we’ll lug our two rambunctious, hyper children to various venues designed to enjoy the great outdoors, taking photos of the leaves, and occasionally each other, as we scatter among them.  If fall is a brilliant snapshot, then life is a flowing river of endless rolling film.  I hope and pray the documentary of our lives is happy, or at least filled with happy moments, and that when the time comes, and I look back at the thousands of snapshots I’ve taken, the various shades of progress, compromise, resolve, love, and determination, for each other and our children, will shine as brilliantly as tomorrow’s glittering leaves, when the rain clears and the sun rises high above the trees.

 

October 14, 2010

October 14, 2010

Lulu's 1st Apple Picking Excursion (October 10, 2010)

October 14, 2010.  Pat’s 85-year-old mother watched the kids last night so we could go to dinner, solo, for our anniversary.  How divine!  Never mind we had to eat at 5:30 in an empty French bistro (though it was bustling by the time we left) in order to ensure the kids were in bed by the appointed hour.  For our anniversary, Pat gave me a pendant of the scales of justice.  The perfect gift, he suggested I wear it any time I enter the school – after all, Sophie still attends, or have to meet with any of our former accusers.  We laughed and talked, shared our meals, drank a little red wine, something we rarely do, and enjoyed delicious, seasonal tarts.  When we picked the kids up from his mother’s house a few hours later, she showed us a letter she received from AIG, the insurance company from whom she purchased an annuity.  Basically, the letter was written to ascertain whether she was still alive – no kidding.  It stated that if she didn’t provide proof of her “still living” status within 20 days – and such proof necessitates procuring notarized documents, AIG had the right to terminate her annuity.  My mother-in-law being the sport she is, the three of us laughed so hard I swear I spritzed a little in my panties.  But really, the entire concept is about the most preposterous thing I’ve ever encountered.  And that’s saying something, given the fact that I’m still reeling from the recent school battle.  Death certificates are public records and a company like AIG would have little difficulty obtaining them to weed out the occasional surviving relative fraud.  This letter was nothing more than an ill–conceived attempt to steal from the infirm and aged who are no longer capable of handling their own affairs.  Having become adept at the art of nasti-gram, I offered to draw up a written response.  With chin held high and eyes gleaming like a hawk’s, she replied in a soft, ominous tone, “I’ll be writing that letter myself, thank you.”  There’s little doubt she’ll get the job done, and then some.  On the drive home, I ask Peter again about his second day in his new TEACCH class (dubbed PEACCE in New York), which has 1 teacher, 2 teacher assistants and 6 kids, including Peter.  “It’s stupid,” he says.  “I have homework and not too much recess and my teachers, all they does is make me do work.”  It’s music to my ears.  Peter will grow and learn in this program, even if he’s not yet feeling the joy.  He’s had an extended summer vacation of sorts and it would be tough for anyone to be thrown back into the fray, especially a highly structured one with new faces, new routines, and new expectations.  Hopefully his grumpiness, and the backsliding of behavior, will be short-lived.  Pat and I are praying the school has decided to loosen its grip on our family, allowing Peter, several years late, to begin learning in a way that will build his potential by addressing his deficits, the legacies he inherited and forever will carry as a result of his Russian birthmother’s drinking habits.  Honestly, I don’t understand what’s happened to us as a society, as communities and neighbors, when little old ladies get letters saying they have to prove they’re alive in order to keep receiving their monthly incomes or where little boys with brain damage can’t get the interventions they need because the systems in place protect the process, and sometimes the careers, the pensions and the stock options, but not the individuals whom they’re entrusted to serve.  Luckily, my mood was high yesterday and I smiled broadly as I watched Sophie race from the car into the house to greet our newest family member, Lulu.  Even when bureaucrats and corporations corrupt, cajole, and exploit, there are individuals – friends, relatives, some times even strangers – who buoy our spirits and brighten our souls.  Pat and I need a new puppy in the house about as much as we need bats in the attic, but the offer was so generous, and came at such a precipitous moment, that we felt fate actually may have been nudging.  I really can’t say, but I do know the puppy is gorgeous, sweet as a peach, and full of mischief and demand.  We haven’t slept since Thursday night, when the kids and I picked her up, and I don’t envision sleeping again any time soon.  But that’s okay.  It’s all part of the journey.  I thought our old Jack Russell would have been gone by now, our plan was to say goodbye to her last weekend, but bringing the puppy home has caused her to rally.  Like all things in this world, she’ll let us know when the time is right.

 

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