by Kristen -

Breathe in, breathe out

 

Several months ago I asked my friend, the author Robert Hughes, how he deals with writer’s block, which had been plaguing me for months.

He suggested that I force myself to write for an hour every day, to fill the page with anything that came to mind.  Through the discipline of doing so, something would eventually click, and I’d find my way.

I’d just begun to follow his advice when I got sick.  Really sick.  And while I wasn’t conscious for the worst of it, I’m told I was critical for a number of days.  There was a very real possibility that I wouldn’t make it.

In the hospital for over two weeks, I’m still recuperating, gradually regaining my strength.  This isn’t the story I’d been struggling for months to express; I’m so rusty I’m not even sure I can still write at all.  But this is a story I need to tell.

*****

It came on suddenly, with a moderate fever I thought signaled a recurrence of the flu I’d suffered in February.  A flu swab test proved negative, however, and with no cough, no vomiting, and my lungs sounding clear, my doctor believed it was a virus that would run its course.

Two days later I could barely stand, and with my husband at work that Sunday, I called 911 for the first time in my life.

I remember very little about my stay at Highland Park Hospital, where I was quickly transferred to the intensive care unit.  Snatches of that experience are all I have: an oxygen mask placed over my face; my husband, Andy, stroking my hand; his quiet conference with the doctor across the room.  Later I learned that my breathing had been alarmingly labored, my heart rate accelerating in time with my fever as it spiked to over 104.

Early Tuesday morning, my respiration still unregulated, intubation was deemed necessary, to, as the nurses told Andy, “give my lungs a chance to heal.”  Drugs to calm me as the breathing tube was inserted were only marginally successful; apparently I fought the procedure bitterly, struggling against the restraints at my wrists, unable to relax despite powerful sedating drugs, like propofol, and the painkiller fentanyl, coursing through my system.

My condition remained unchanged for two and a half days.  As explained to me later, I was taking 60 to 70 breaths per minute, when 12 is normal; my heart rate should have been between 55 and 62, but was consistently over 120, surging to 140 when my fever soared.  Most worrisome, my carbon dioxide level had risen to 99, when the high end of normal is 45.

Even with the ventilator and massive antibiotics, begun intravenously when I first arrived at the hospital, I was not improving.  In fact, I was steadily getting worse.

What had at first appeared to be a bad flu or perhaps a simple pneumonia was proving much more serious.  The nurses had, in fact, initially told Andy that I probably did have the flu, that oral swabs like the one my internist had taken in her office were often inaccurate.  He wanted desperately to believe this, that with rest and antibiotics I’d be home in a few days.

His faith was shaken, though, when he realized that even in my delirium I sensed how sick I was, telling him on Monday evening — although I have no memory of doing so — that I didn’t think I’d get better.

By Wednesday they’d moved from referring to my sedation as “twilight” to “paralytic,” anything, it seemed, to avoid the term “medically-induced coma.”  But that was the truth of my condition.

*****

My daughter Natalie came to the hospital every day from her home in the city, hovering at my bedside in the ICU, joined by my husband between stints at his office.  Friends and co-workers came, too, murmuring words of encouragement to my unconscious form, sitting with Natalie in the waiting room, asking questions of the medical staff.  As hours and then days passed, though, the mood shifted from concern to palpable alarm.  They didn’t even know what precisely they were fighting; the results of a culture to determine what bacteria had attacked my system had not yet come back.

Then, mid-morning on Thursday, five days since my admission, my attending physician found Natalie in the ICU waiting room.  Preparing to call Andy, he instead wasted no time in addressing the next legal authority listed on my intake form.

“Your mom is very ill,” the doctor said, taking a seat beside her.  “We need to move her to Evanston,” he went on, referring to a larger, teaching hospital about 40 minutes away.  “And we need to do it right now.”

Days later, I learned that he anticipated a “last resort” treatment called an extracorporeal membrane oxygenation, or ECMO, which would essentially bypass my lungs, and use a pump to circulate blood through an artificial lung back into my bloodstream.  It was a procedure my local hospital was unequipped to perform, and the window of opportunity was narrowing fast; they feared I may soon be too unstable to move.

“We need your permission to transfer her,” the doctor stated.  “But there are substantial risks in moving her.”

Stunned, Natalie stared at him for a moment, then asked, “What are the risks?”

The doctor spared nothing in his response.

“She may not make it to Evanston.  She may stop breathing in the ambulance, and we’ll be unable to revive her.”

I will forever regret that my daughter had to hear those words, to endure that trauma, and assume a responsibility so grave.  No child, even a 28-year-old adult, should have to.  I have envisioned that moment countless times since, and the horror of it has not diminished.

My daughter is remarkable, though, strong and resilient, and immediately gave the necessary consent.  Fortuitously, my close friend Marla arrived minutes later, embracing Natalie as she related the latest news.  By the time Andy reached Highland Park soon after, his 90-year-old mother had also arrived, and was holding Nat’s hand as they both cried softly, my mother-in-law’s tears allowing her granddaughter to finally shed her own.

It took three agonizing hours for the medical staff to prepare for my transfer, disconnecting me from numerous IV lines, alarms and monitors.  Apparently my condition was so tenuous that even the shift from hospital bed to ambulance gurney was dicey.  Finally, though, I was on my cautious way: no lights, no sirens, the risk of an accident with such fragile cargo outweighing the urgency of transporting me quickly.

A fierce band of friends and family converged on Evanston Hospital as word of my move spread, via calls, texts and voice mails.  Marla followed from Highland Park, where she’d spent part of every day that week, as had my friend and co-worker, Janice.  Natalie’s dad and step-mom, Jeff and Mary, dropped everything and drove from Wisconsin to lend their support.  Darren, my soon-to-be son-in-law, grabbed an Uber and rushed to Evanston, joining a vigil no one could have anticipated just days earlier.

And they waited.

Relieved and elated when I survived the trip, they now hoped to avoid the ECMO procedure, an invasive surgery offering no guarantee of success.

Nearing 7 p.m., a resident delivered the first piece of good news in days: my carbon dioxide level had dropped to 70, based on the blood draw taken upon my arrival.  By the time Andy left for home at 11 o’clock that evening, it had dropped further, to 53 on two separate draws.  The ECMO procedure was no longer indicated.

For the first time since Sunday I had started to improve.

******

I remained in an induced coma for four more days, to allow me to heal and the antibiotics to work on what they now knew was the Legionella bacteria, which had caused massive pneumonia in both my lungs.  I’m told we’ll probably never know how I contracted such a rare, waterborne bacteria, most famous for the dozens of illnesses and two deaths it caused at the American Legion convention in Philadelphia in 1976.  While the serious flu I’d suffered a month and a half earlier had probably weakened my immune system, my county’s department of public health agent conceded that the origin of Legionella infection often remains unknown.

What everyone agreed on, however, is that it quite possibly could have killed me.

Nine days after my initial call for paramedics, Andy and Natalie were called to the hospital to provide familiar faces as they pulled me from the coma.  Unfortunately, I’d spent the week I’d been sedated in a maze of discordant, menacing hallucinations, which I still vividly recall when I allow myself to remember.  I woke confused, sullen, in pain, believing my husband and daughter had conspired to trap me in that frightening netherworld, that they were somehow responsible for a ghastly experience I didn’t understand.  Learning that this reaction is not uncommon doesn’t fully alleviate my shame at the initial distrust and anger I felt toward two of the people who love me most.

I was forgiven, though.  It took days for me to fully appreciate the impact my illness had had on those who love me, how close they came to losing me.  As awful as those first days of recovery were, I had missed the worst of it.  Seeing my face in a mirror several days after I awoke, I hardly recognized myself: gaunt, haunted, my hands too weak to hold a cup of water.  I’d lost 16 pounds, and couldn’t walk unassisted for nearly a week.  When I came home after 15 days, including three in the rehab unit, I needed a caregiver for several days.  Soon, though, I felt strong enough to navigate my home, albeit slowly, on my own during the daytime hours while Andy was at work.  Almost immediately I began physical therapy to reclaim the muscle tone I’d lost, and have gradually found my strength.  Three months later I still tire quickly, and am working abbreviated days for now.  It will take six months or more, my internist warns, to truly feel whole again.

*****

I’d love to report that this ordeal was life-altering, a revelatory event of directional clarity, elevating me to a place of serenity and gratitude.  And I am grateful.  Of course I am.  It still stuns me that I actually could have died, that Legionnaires’ disease can easily be fatal.

But Hallmark moments don’t often happen in real life, in my life, at least.  Or perhaps I’m too jaded now to appreciate them.  My friends know I’m not a fan of platitudes, to which all special needs parents are subjected, again and again.  “Everything happens for a reason,” or “There are no mistakes in God’s world” come distastefully to mind.  Yet one of the cards Mary sent brought me to tears with its profound simplicity, precisely what I needed then to hear: “Breathe in.  Breathe out.  Repeat.”

In these weeks of recuperation I’ve come to understand a few things.  I’ve been a caregiver for years, imperfectly, stumbling, but with my son’s profound needs ever-weighing on my soul.  I recognize now that I’ve never truly learned to “self-care,” as we women are instructed to do.  How easily I’ve become mired again in minutia, the worry and entanglements that are part and parcel of life.  I haven’t even been consistent in writing an hour a day.

Sometimes I long for those first, tremulous weeks back home, safely cocooned in the blanket of recovery, my weaknesses indulged, nothing expected of me but to care for myself.

To learn how to breathe again.

To be well.

But the price for such escape is too high.

And I hold tightly to the countless moments of grace I experienced amid the pain and disquiet of this illness.  These are gifts I won’t forget.

The innumerable ways my friends nurtured my husband and daughter during the most frightening time of their lives.  My friend Kary’s gentle, undemanding support, soliciting the prayers of so many while still guarding our privacy.  My husband’s partner shouldering the burden of their business so Andy could focus on me, while his wife brought meals to the hospital to ensure that he was eating.  My daughter’s friends, who walked her dog while she was at the hospital, left her protein bars, and flowers, and notes of encouragement; her fiancé, Darren, who was her rock when her world was crumbling.

Janice, filling our fridge with food; her many texts of encouragement to Natalie, Andy, and me, even as she prepared to move cross country; my co-workers’s willingness to assume my duties for weeks on end, without question, complaint or resentment.  The dozens of cards, flowers, and gifts that arrived daily; the meals prepared and delivered.  My children’s dad and stepmom’s love, reminding me how fortunate we are to share an unbreakable bond; their extra visits to Daniel so he wouldn’t feel my absence as strongly.

Marla using her medical knowledge as envoy between the hospital staff and my family; her daily texts and calls to my brother and sister-in-law in Tennessee, keeping them informed as they worried and prayed, miles away; the lunches and company she offered those first days home, filling in gaps in the story, my understanding of what had happened to me; shuttling me to my first haircut when I was still too shaky to drive.

Andy’s resolve to stay confident, and positive, and strong, despite the dread that nearly consumed him; his visits, morning and evening, as I recovered, himself exhausted from work and the insistent barrage of calls and texts seeking updates on my condition.  His patient calm as I came back to this world, his assurances that everything, everything, would be all right.  His admission, voice breaking, that he feared he would lose me.  That he didn’t know how he would survive if I did not.

And Natalie, my shining star, who was there for me every single day, who tacked photos of the people I treasure on the wall in front of my bed as I lay unconscious, believing that, somehow, I would sense how deeply I was loved, how much I had to come back to.  Who ran interference with family and friends through countless texts and calls, who held it together like a warrior even as she was breaking inside.  My daughter, the only one to understand my whispers those first bewildering days, my voice frail and rasping from the ventilator; who massaged my hands and forearms, covered with bruises from wrist to elbow, using lotion she’d remembered to bring from home; who traipsed and fetched and advocated, who protected me, who fed me like a child when I was too weak to feed myself.

*****

Two weeks after I got home Andy took me up to Wisconsin to see Daniel, my first visit in a month and a half.  On the way he recounted the stats of my illness as it had progressed, the first glimmers of hope when hope was yet a rare commodity.  He provided a timeline, a picture of how dire my illness had been.

We wondered together what caused my turn-around just hours after arriving at Evanston Hospital.  Had the antibiotics finally kicked in?  Was my body rested enough now to fight back?  Was it simply coincidence?

Andy didn’t think so.

“I think it was Natalie,” he told me.  “Her message to you as they bundled you into the ambulance.”

I don’t remember hearing it, consciously, with my ears.  My heart, though, heard it loud and clear.

“You’ve got to make it, Mom,” she whispered urgently, her face bent close to mine.  “You’ve got to get it together now.  You have to be there, at my wedding.  I can’t do it without you.”

A month from now Natalie and Darren are getting married.  And I will be there for her.

I will be there.

by Kristen -

Hopefully

Years ago, a friend of mine and her husband took their young son for surgery to correct a pectus excavatum, or “concave sternum.”  The condition wasn’t life threatening, but was noticeable and would likely worsen as he aged, interfering with sports or other physical activity.  He was about seven years old at the time.

The surgery involved a thin, steel rod — a knife, really — being inserted from the side of the chest, and pushed carefully behind the sternum to “pop” it out into place.  It was considered a routine procedure.

Sooner than expected, the surgeon appeared in the waiting room where my friend sat anxiously with her husband.

“We have a problem,” the doctor reported grimly.  The steel rod had accidentally nicked their son’s heart.  He was bleeding internally.

“But we think we can fix this,” the surgeon went on, and began explaining the correction they would attempt.

Stunned, my friend’s husband interrupted.  “Wait.  Wait.  Did I hear you correctly?  Did you say you think you can fix this?”

The surgeon looked him in the eye and somberly replied.  “Yes.  We think we can.”

*****

I used to say that the difference between my experience with my daughter and that of my son was that while I understood that any calamity could befall my daughter — she could get hit by a bus tomorrow — there remained a reasonable expectation that that would not happen.  It has never been so with Daniel.  Autism swept “reasonable” out of our lives.  Yet for years I sought reassurance that his life would, eventually, turn out ok, would merge onto a normal path, even, if you can imagine, that he’d be the miracle child who overcame the disorder.

I thought I’d reached a point of acceptance that such assurances are not to be, even believing I could live without them, that I’d adjusted to the constant ebb and flow of his life.  I realize now that I haven’t reached that place after all.

Several months ago my son’s group home manager, Kristen, regretfully informed me that Daniel could no longer be safely cared for at his current residence, the home we’ve loved, where he’s seemed to flourish for two and a half years.  They felt they had no choice but to give the obligatory “30-day notice” that a new placement for our son was necessary.

This shouldn’t have come as the blow it did.  There had been incidents, serious ones, during the last few months.  In February, Daniel’s beverage obsession drove him to drink windshield wiper fluid he’d spotted in a neighbor’s garage.  He spent three days in the hospital undergoing dialysis to flush the toxin from his system.  Just weeks later, he eloped to another neighbor’s house, barged through their front door, and began guzzling from a gallon of milk in their refrigerator.

I knew about these episodes, even recognized uneasily that they were escalating.  Despite his challenges, however, we’ve been happy with the overall quality of his life, the attention he receives, grateful for the opportunities he’s had to experience at least some of the larger world.  He enjoys a unique, hard-won bond with his primary caregiver.  It’s been the best place Daniel has lived for years.

Yet in retrospect I wonder if I’d been intentionally blind, unable to face the inevitable consequences of behaviors we’ve struggled for years to understand, desperate for a break from the relentless worry of parenting a severely autistic child.  Distracted, too, by the demands of running for re-election for my job as township clerk, perhaps I could handle only so much stress at a time.  Was the campaign my excuse to shut my eyes, for a few precious months, to the chronic challenges autism presents, even as my subconscious warned of a crisis, the culmination of fears I’ve harbored for his lifetime?

Kristen described an alternative they had in mind, a “one-on-one” placement ten minutes from his current home.  The new house would be equipped with an electromagnetic locking system to prevent elopements, a feature unavailable in his current home, designated as an unlocked facility.  His care team would transfer with him, lessening the impact of the move.

Everyone, she told me, agreed that this arrangement is what Daniel needs, for his own safety and that of others: his case supervisor at the managed care organization we work with to oversee his residential needs, their behaviorist, their nurse.  Everyone except the contract department, which controls the flow of funding.  They rejected it as too expensive, and directed the MCO to look elsewhere, to find another agency, another Adult Family Home, otherwise known as a group home, capable of managing Daniel.

“We want to keep Daniel with us,” Kristen told me.  “His behaviors are difficult, and we don’t want him to end up in Southern.”  She was referring to a multi-bed facility in southern Wisconsin, the kind of sprawling institution that’s the stuff of nightmares for parents like me.

I should have known these words were coming, words I told myself again and again to prepare for.

But I wasn’t prepared.  I wasn’t ready to learn that yet another living situation had failed, that his behavior was more than even this capable staff could handle, that we needed to start again.

I wasn’t ready to hear the word “institution” in relation to my son.

*****

That night I had to attend a campaign function featuring a national political figure, and set aside my panic over Daniel to interact with nearly a hundred jovial attendees.  I don’t know how I did it, but it must have been effective; my emotional shut-down carried through the weekend.  I didn’t — simply couldn’t — talk to anyone, not my closest friend or even my daughter, unable to face questions for which I had no answers, or probe a situation that left me breathless.  Holding the knot of fear and despair inside my chest was easier than facing it, than acknowledging again the powerlessness I’ve so often experienced in the course of Daniel’s life.

My husband understood this.  When I came home from work the following Tuesday he was on the phone, speaking to the supervisor of the managed care agency, trying to gather information on what came next, how we could fight the denial of the alternative our agency had offered.  He was told emphatically that the proposed home was not an option, but that the MCO would begin a search for another placement for our son.

“Hopefully,” she added, “it will be an Adult Family Home.”

“What does that mean?” I asked frantically when Andy hung up the phone.  “What does she mean, ‘hopefully’ an Adult Family Home?  As opposed to what?”

He didn’t need to answer.  I already knew.

*****

I’ve spent weeks reflecting on why that word crushed me as it did, why it evoked the opposite of its intention, that of encouragement, optimism, possibility.  I remember the desolation that washed over me, the certainty that no matter the outcome of this latest challenge, this particular piece of shitty, that there would be more to come; that after all these years nothing has become easier, we are still battling a war we can’t win.  We are still only at hopefully.

And hopefully isn’t enough where your child is concerned, yet that’s what we’ve been working with for years.  Now my longstanding fear that we’d lose my beautiful, bright and loving son to an institution was an actual possibility.  The shadowy menace held in the dark of my heart had taken shape, ready and waiting.

Autism is years of hopefullys, of fervent, desperate prayers that the next situation, or therapy, or medication, will make a difference, only to face again the inescapable truth that the disorder is lifelong.  “Hopefully” had turned on me, and I hid in my insulated bubble of mute fear for weeks as the situation unfolded, paralyzed, unable to write, or even discuss it with family or friends.

It had beaten me.  I was done.

Except we don’t get to be done when we’re parents.

*****

To explain the bureaucracy involved in the resolution of this crisis would take pages, and this blog is too long already.  Suffice it to say that things got worse before they got better.  The neighbors whose house Daniel had busted into back in March had called the police, and eventually the local newspaper.  Articles were published calling my son’s actions a “home invasion,” which left the occupant “traumatized.”  Readers commented online, including one who opined that people “like that” should not be allowed in the community but in institutions where they belong.

For several weeks it appeared that the only agency willing to accept our notorious son was a brand-new outfit in Fond du Lac, two hours further north, operating just one home, a dim, cramped, duplexed house with no fenced yard and owners comfortable with “restraint” when necessary.

It took two agonizing months, but in the end we got what we wanted.  Andy tells me that I played it perfectly, breaking from my paralysis precisely when necessary to move the process toward our goal.  I don’t know if that’s true, or if we were just lucky.  The owner of our current agency reduced the service rate originally proposed, leaving the contract department no excuse to deny his placement in the alternative house.  Daniel moved to his new, secure home a few days ago.  He seems comfortable there, happy.

On that first awful night of Kristen’s call, Daniel’s father Jeff told me to hang in there.  “Things always work out for Dan Man,” he reminded me.  I don’t have such trust in a larger plan right now, unable to forget the fundamental truth that things didn’t work out so well for Daniel, that his life was royally screwed before he ever had a chance.  I tell myself that I won’t be duped again.

A few weeks ago, though, Andy and I drove by the new house, which I’d toured but Andy hadn’t yet seen.  It’s a tidy, light-filled home with a swing in the backyard.  I can picture Daniel there, swaying gently as he blows his bubbles, shaded by the maple tree behind him, his aide Brittany by his side.

On our way back to the highway we passed a park where Daniel and I had shared a picnic two years ago, and without thinking I exclaimed, “Look!  That’s where we came that first summer!”  I laughed with exuberance. “Maybe, when things settle down, we can go there again…”

Hope remains resilient.  Or so it seems.

 

My friends’ son survived the accident on the operating table, and is now a handsome, heathy 27-year-old.

by Kristen -

Good Enough

The day before she planned to board a plane to Chicago for Christmas, my sister-in-law tripped on the stairs of her home, tumbling all the way to bottom.  Fortunately, she was able to call a neighbor, who drove her to the hospital, where doctors diagnosed a nasty concussion and badly sprained ankle.

Advised not to fly for at least a week, she spent the holiday alone, half a country away from the family who loved her.  It was not the annual reunion any of us had hoped for.

It could have been so much worse, of course, as we told ourselves repeatedly over the next few days.  Living alone, she may have lain unconscious for hours before someone found her.  She could have been permanently injured, even killed.  The possibilities don’t bear thinking of.

She was, in fact, lucky.  Yet luck is a relative term.

I’ve struggled with this kind of contradiction often since my son’s diagnosis, seeking the bright side, the countless positives in Daniel’s life to counter the implacable weight of autism.  These self-imposed pep talks seldom evoke the level of gratitude I believe I should feel, however, or appreciation for the grace I’ve been granted, again and again.  How often have I told myself that what I have, what my son has, should be enough, even as my self-pity shouts me down: “Of course it could be worse!  Of course it could!  But it’s bad enough as it is!”

Slowly, though, I’m emerging from this kind of wallowing.  This past Christmas I realized that, perhaps, I’m making some progress after all.  And I don’t know how I feel about that.  It’s taken me weeks to wrestle my emotions into cohesion.

We brought Daniel home for a day visit on Christmas Eve, an excursion we haven’t attempted in several years.  It’s easier on everyone, including him, to simply celebrate at his group home in Wisconsin, rather than tempt the erratic behavior that makes his living there necessary with transitions back and forth from the environment he’s grown accustomed to over the years.

This year, however, I decided to try again.

The holiday season is not particularly joyful for me, and despite my grim resolve each year to make it so, over the last decade it’s become a period to be endured rather than savored.  Exceptional work demands at the close of last year had me more anxious than ever, and a wise friend urged me to set aside, just this once, a few of the traditions I’ve felt duty bound to maintain, even as they brought more stress than satisfaction.  I tried to take her advice.  Christmas 2016, for instance, marked the first year since my children were born that I didn’t include their photo with my Christmas cards.  And what do you know?  The world survived, just fine.

Maybe this frame of mind helped ratchet down my expectations for Daniel’s visit, let go just a bit of my perfectionism and take the day as it came.  It didn’t have to be perfect; almost certainly it wouldn’t be.  And indeed, it wasn’t.

My Facebook post that afternoon painted an idyllic portrait of family togetherness, drawing supportive comments from my circle of friends.  My daughter, her boyfriend, and their enchanting puppy were home as well; we dined at Denny’s, Daniel’s favorite restaurant, and exchanged gifts around a glowing Christmas tree.

Pictures rarely tell the whole story, of course.

I’d planned to give Daniel his Christmas stocking, bulging with favored treats, before leaving for lunch, but he showed little interest, leaping from the sofa and pointing to the door — “Denneh?  Denneh?” — again and again until we tossed the stocking aside in resignation.

At the restaurant he was allowed soda to his heart’s content, but this did nothing to slake his obsession with the beverage, demanding more as soon as we got back in the car.  Nine years after leaving Illinois, he still remembers the precise location of the grocery store nearest our house, and pointed in its direction as we drove quickly home, praying he wouldn’t wet his pants before we got there, a very real possibility due to his public bathroom aversion.

Back in the living room once again, we tried enticing him with the mountain of merrily wrapped gifts assembled under the tree. He was having none of it.  “Stoar?  Stoar?”  His requests became more belligerent as I tried coaxing him with a sticker book, my well-stocked refrigerator sadly lacking the 16-ounce bottle he apparently had in mind.

“Stoar!”

One photo I posted on Facebook was especially popular, my once-little boy now towering over me, hands on my shoulders, looking deeply into my eyes as I smiled up at him with joy.  It elicited tender comments from far and wide.

“I can see the love in this picture!”

“You are his world!”

“This picture says so much!”

It said plenty, all right.  It said our whole happy Christmas visit had been hijacked by Daniel’s unremitting obsession; that I was desperate for the holiday’s magic to break the vicious hold of autism for just one day.  That as that photo was snapped, he’d just released my chin after pulling my face to his, laser-focusing as he repeated, again and again, “Stoar?  Stoar?  Stoar?”

We gave in.  Armed with a bottle of Coke Zero chosen from the gas station minimart, Daniel finally relaxed, giggling, posing for photos, enjoying time with his family before Andy drove him, happy and willing, back to his Wisconsin home.

It was an exhausting afternoon, another celebration driven by the disorder that has dictated the course of our lives.  But while the day failed to unfold as smoothly as I had hoped, it didn’t crush me as some past Christmas ordeals have done.

I don’t know why this was so.  Was it because my daughter was so obviously happy, or that her boyfriend touched me so deeply with his maturity, his affection and respect for his girlfriend’s special brother?  Was it the joy of their dog Mattie’s exuberance, the fun of having a puppy in the house?  Was it that we made it through lunch at a restaurant without incident, no hapless diner’s soda wrenched from their unsuspecting hands?

Did the positive, this time, simply outweigh the negative?

I can hardly believe it’s that easy, because I don’t do simple very well.  Separating my feelings around Daniel’s disability from the rest of my life is an ongoing challenge; his autism colors everything in my world.  With Daniel’s struggles so blatantly on display, enjoying a festive holiday feels like a betrayal, acceptance a sell out to my own longing for harmony, for normalcy, for simple. Daniel’s reality is my own, and conceding that it is good enough is defeat, like giving up on a Christmas photo.

A mere bottle of soda satisfied my son, but that wasn’t the way I wanted it: I wanted my will for Daniel to prove stronger than his fixation, than his disorder itself.  That kind of transformation doesn’t happen very often with autism.  I know this by now.  I still hope for it, though, unwilling to accept circumstances as they are because they could be, should be, so much better.

Yet this year I felt the grace of truth more powerfully: those circumstances could be worse.

And I hold these truths now as well: Daniel’s smile as he ran from Andy’s car to our back door, beaming, eager to be home again; his delight as Mattie pranced on his bed, licking his hands and face while I tightened his shoelaces and brushed back his hair.  His careful examination of the tree ornaments, touching, tapping, as he did when he was a boy.  His willingness to return at the end of the day to the life he knows now and embraces, untroubled, secure in our bond and our love.

For a few hours on Christmas our family was together.  Imperfect, stumbling, winging it, but together.

And this time — dare I say it? — that was good enough.

by Kristen -

Can You Hear Me Now?

daniel-100-copy

My 89-year-old mother-in-law is fiercely independent, a fact reinforced in late August by her failure to call for help after slipping off her kitchen barstool at 11 p.m., painfully injuring her right foot.  She didn’t want to bother my husband and me so late, or disturb her neighbors with a 911 response.

Turns out she’d fractured her ankle in three places.

Visiting her in rehab, Andy found her on the nursing center’s patio, her wheelchair parked at a table with three fellow patients, eating a pizza lunch.  She’s too polite to express it openly, but my husband knew immediately that his mother didn’t want to be there.

“So they’ve got you out here today!” he remarked with forced cheerfulness.  Every Friday the rehab center holds a themed luncheon, like a BBQ or luau.  “Must be pizza day!”

A week earlier a nursing attendant had invited her to join “special lunch,” which she graciously declined.  That Friday, however, a nurse had simply breezed in, wheeled her to the patio, and planted her with patients suffering from dementia in various stages. Despite her celebrated conversational skills, my mother-in-law found the meal a challenge.

She could have demurred, of course, stating that she preferred meals in her room, but that would have violated her code of courtesy.  Reluctant to appear rude or unreasonably difficult, she endured the special lunch experience without causing a fuss, even though it wasn’t what she wanted to do.

It’s painful to picture my proud mother-in-law this way, decisions made “for her own good,” her options gradually diminished by the infirmities of age.  Yet she retains the luxury of choice, the ability to exercise preferences, and the authority to express them, should she elect to do so.

I wonder how often my son’s preferences go unheeded, or even recognized.  He has lived in structured care for almost nine years, an arrangement inherently prone to conformity, to routine.  Yet even when he lived at home I so frequently misunderstood him, or didn’t understand him at all.

How often must he be frustrated by the disorder that has dictated the whole course of his life, unable to express clearly what he’s yearning for, or who he knows himself to be?

A friend suggested recently that Daniel may simply not know any different, or even recognize what he is missing in the typical world.  Autism and its attendant constraints is all he’s ever known, after all.  He may be more content than I can possibly imagine.  Perhaps it is only me who is suffering the weight of his loss.

This argument isn’t new to me.  I’ve told myself the same thing countless times, willing myself to believe it true.  How much easier than imagining my son trapped in a functioning body and mind, yet unable to direct the events of his life, or follow the path of his choosing.

Of course I appreciate many of his frequent, obvious requests — pop, fries, Denny’s, car — but what more complicated emotions go unnoticed?  Does he recognize the vast range of experience beyond the stifling hold of autism, and ache for that world?  Or has he simply given up on being truly understood?

As he matures and our relationship changes, I tell myself to let go of these haunting questions, this chronic doubt; to accept the limitations of Daniel’s life, rejoicing in all he is capable of, the joy he demonstrates for the modest slice of life he has been allotted.

Can any parent truly do this, though?  Do any of us accept “good enough” for our children, or stop longing to know what lies in the deepest folds of their hearts?

Over time I’ve set aside certain unanswerable questions, stopped demanding an explanation for Daniel’s autism, which, if granted, would change nothing.  The ache to know my son is not so easily relinquished, though, this duty I feel to understand and give voice to the unarticulated longings he may have harbored for a lifetime.  Who will carry this torch, if not me?

Daniel’s behavior has long been the most telling barometer of his mood, and there is evidence now to suggest that he is indeed content.  He appears comfortable in his group home, well-treated by his caregivers, and satisfied with his living arrangement.

Other behaviors are more complicated, his well-chronicled soda obsession the most troublesome example.  Is this simply an inexplicable symptom of the disorder, or his desperate bid to control one small scrap of a life orchestrated on his behalf, a life he is screaming to escape?  I wonder if I’ll ever live peacefully without the answer, if I am failing him, again and again, by not knowing him as he deserves to be known.

I consider the frequent and meaningful contact my daughter and I share, yet I don’t know all there is to know about her; of course I don’t.  I can’t even state with certainty that she is happy; I can only judge by her temperament, the tenor of her words, trusting the relationship we’ve forged over 26 years.  Yet, like my mother-in-law, she has the benefit of language, the power to communicate as she chooses.

Daniel and I rely on more subtle indicators to understand one another, like his willingness to let me go at the end of my visits. Often he’ll hasten my departure with a vocal “Bye!,” having procured his extra soda, his sticker book; after a drive together, the Chili Peppers cranked loud and liberating; after he’s reached from his seat behind me to caress my shoulder, reassured that I’ve come back again.

Is this all the fulfillment he needs from his life?  From me?  Can it possibly be enough?

I want to dismiss my friend’s suggestion as a well-meant but simplistic explanation for something infinitely more complex. Conceding to her theory feels like a betrayal, adopting a convenient, more palatable view of my son’s life to soothe my own loss, my own conscience.

Mustn’t I question, though, if I’m stubbornly projecting my sorrow over Daniel’s circumstances onto him?  Is it just me, unsettled and aching, who is hungry for more, as my boy becomes a man?

And I acknowledge, too, that part of me craves the reassurance that he is happy — that both my children are happy — because that would make me happy.  Oh, yes, I want that certainty, a gentle easing of the relentless burden of love.

Yet slowly I’m recognizing that Daniel is, in fact, expressing himself, that he is telling me who he is, perhaps even typically.

At times he is the engaged, affectionate Daniel, laughing, relaxed, unhurried, who brushes my cheek for the simple warmth of connection; who will peruse a book by my side as we did for years when he lived at home.  Other visits are almost routine, a necessary interlude he endures for my benefit, anxious to return to his own agenda, like any 24-year-old.  Even if his agenda includes a sticker book with The Aristocats for accompaniment.

Perhaps my son has been telling me what he wants all along, but I’ve been too consumed by on my own agenda, my own habit of despair, to hear him.

I recall the moment my daughter told me her boyfriend was “the one,” understanding intuitively that she was happy, truly happy, even as her words left me breathless.  Is she ready to make this decision?  Does she understand the heartache that may lay in store?  Yet I realized then the depth of my faith in her, my trust in her to know her own mind.

Can I learn to do the same with my son?

There is no forgetting the disparity between the life he deserves and the life he has.  I can try, though, to view his experience with eyes unshrouded by loss, to listen for what he his telling me, free of the weight of unmet dreams.  He deserves this much from me.  He deserves to be recognized, to be known as he wants to be known.

What might he teach me, if I am willing to learn?

by Kristen -

Ready, or not

Dan with stuffed animals 3

Every few months for the past ten years, Evie from Amvets calls to ask for a donation.  She is 97 years old, and has been soliciting for the veterans for over 30 years.  I never turn her down, even if I have to raid my husband’s closet to fill a bag.

Our interactions have grown through the years from confirmation of address and pickup time to lingering, affectionate chats.  I’ve learned, for instance, that she has five children and 12 grandchildren, one of whom graduated from University of Chicago last spring.  I don’t rush off the phone when Evie calls, no matter what I’m doing, mindful that each comforting connection may be our last.

Her call last Thursday was a welcome reprieve from the fruitless knot of writing I’ve been tangled in for weeks, work on an piece that has failed to come together despite dogged attempts to force its cohesion.  Although my donation bin out in the garage was empty, I told her I’d come up with something.

“Anything is welcome,” she affirmed, as she always does.  “Clothing, books.  Old toys — we can use anything.”

“Well, my children are 26 and 24,” I replied with a chuckle.  “So I don’t have too many toys around the house anymore.”

She continued her gentle coaxing, even though I’d already agreed to a donation. “Children’s books are good.  And stuffed animals are always appreciated.”

I thought of my son’s bedroom upstairs, the built-in shelves lining one wall still filled with plush animals of various species.  A lifelike lion sprawls regally across the twin bed; a five-foot giraffe gazes out the front window, a gift from my mother-in-law the last Christmas before Daniel left home.

Suddenly I was confiding in a woman I’ve never met, but who has been a fixture in my life for a decade.

“You know, Evie, my son has autism, and hasn’t lived with me for over eight years.  But his room is the same as it used to be.  It’s filled with stuffed animals I can’t bring myself to give away.”

In a rush, I continued, explaining that I’m a blogger, and had been trying when she called to write about grief, pain I can’t relinquish, nor find words adequate to explain.

“I don’t know what’s the matter with me, Evie,” I went on tearfully.  “He’s gone and I know he’s not coming home.  He’s never coming home but I’m still waiting.  I’m still waiting for it to be different.”  My voice broke.  “I can’t let go of him.  I can’t let go of the grief.”

Evie replied without hesitation.  “Of course you can’t,” she declared.  “You carried him.  He’s a part of you.  He’ll always be a part of you.”

She told me then of the baby she’d lost in pregnancy, when in her ninth month she contracted measles.  “I recovered but the baby couldn’t fight it,” she explained, her quavering voice steeped in remembered regret.  “I never got over that, either, not completely.  You never do.”

We talked for some time, about loss, what it takes and what it leaves behind.  “You are stronger for what you’ve gone through,” she observed, the experience of nearly a century lending new credence to the words.  “But you don’t ever let go of what you feel for your child.  He is always a part of you.”

In the weeks following Daniel’s move to a therapeutic residential school, I spent many nights curled in his bed, lost to grief, laden with treacherous, guilty relief that I could now relinquish the rigors of his care.  I knew I couldn’t do it anymore; none of us could. That didn’t ease the burden of failure, though, the awful acknowledgement that my best efforts weren’t enough.

Surrounded by the mementos of his life with me, I let the sorrow flow.  My eyes fell on photos of his special ed peers, his middle school diploma, a worn communication notebook from the fourth grade.  I held the photo of a dolphin leaping from the water at the Shedd Aquarium, a clipping from the Tribune he’d often pull from his nightstand and ask, hopefully, “Fish?”

His animal collection, amassed over 15 years, peered down at me.  The swivel-headed owl; the wolf, its head thrown back in a howl Daniel had learned to imitate; the spotted pony, a token of our joy at his first coherent word as a toddler, “Horse!”

How can I let go of these companions, tossed countless nights across his bed, before we turned off the light for sleep, Daniel calling each one by name?  “Bear!”  “Sheep!”  “Frog!”  Again and again I’d lob the soft toys until he was surrounded, giggling and gleeful and snug in their comfort; a treasured ritual of our uncommon life, a period of laughter and happiness, soothing whatever trials the day, now gone, had rendered.

It’s long been my plan to refit Daniel’s bedroom into an office, keeping his bed in place, while filling the shelves now housing his animals with the dozens of books stacked in piles on my own bedroom floor.  It would be a fitting space for me to write, to wrestle the ongoing themes that have shaped my life, to draw meaning from circumstances I still struggle to understand.

I can’t bring myself to do it, though, to symbolically sever a tie that has been loosening on its own, bit by bit, for years, to grant permanence to a truth I’ve tried to deny for half my lifetime.

If I’m honest, Daniel himself probably wouldn’t object, or even register the change to his old bedroom.  He once raced through the house on his visits home, darting into each room as though confirming the accuracy of his memories.  On his last visit, though, I had to coax him upstairs, where he studied the souvenirs of his childhood with mild interest, humoring me, it appeared, more than savoring a time now past.  He seems to recognize this as home, but a home he doesn’t live in any more.  And that’s okay with him.  He’s moving on, just as he should, as he must.

I think of Evie, holding the loss of her child over the span of 70 years.  I told her I’d try to choose an animal or two to donate this time, and she told me not to worry; I would do it when I was ready, if I am ever ready at all.

I don’t know when this will be so.  Part of me still clutches the slender reed of hope, that Daniel’s life will turn around, that autism hasn’t slammed the door completely; that our bright dreams of growth and improvement when he entered residential care will yet be realized, even after all these years.  I’m still waiting for another chance.  I still want him back with me again.

This is unlikely, irrational.  Futile, even.  I know this; I do.

Yet hope is relentless.  Perhaps that’s how it must be, too.