The Gift of Time



Mom

Lately, I don't have many thoughts about Mother without also thinking of a little boy named, Jax.

In the midst of the early morning phone call, I immediately set aside a block of time that same Saturday afternoon to speak with the young couple. The two of them had every reason to be concerned.

I also made the conscious decision to meet Rachel, then twenty-five weeks pregnant, and her husband, Marcus, in a less formal setting; another sterile, impersonal medical facility was surely the last place either of them wanted to be.

Rachel’s recent uterine sonogram had raised at least one red flag. The subsequent echocardiogram of their nascent son’s heart provided definitive evidence that all initial concerns had been warranted; their developing son was afflicted with one of the most complicated and challenging congenital cardiac anomalies, Hypoplastic Left Heart Syndrome. By contacting me, Rachel and Marcus had hoped I might better describe both the constellation of defects associated with the syndrome as well as outlining a general roadmap for eventual treatment if their son was fortunate enough to survive beyond delivery.

The beautiful young couple was joined by her cousin, a second year medical student who brought an armload of the very same Netter Atlases of Anatomy that will become familiar to Marcus when entering medical school next fall. From the outset, the three seemed realistically mindful of the troublesome ramifications of the diagnosis while also maintaining their youthful optimism and demonstrating the requisite determination to meet the challenge head on.

With our meeting completed, I remember leaving feeling buoyed by their obvious strength, genuine expressions of faith, confident in a wellspring of support from family and friends, and decidedly humbled by their remarkable maturity in the face of this great uncertainty.

Rachel and Marcus were girding themselves to deal with whatever might come.

Three days later, however, I received another sobering message from Marcus who informed me of Rachel's amniocentesis results. The test revealed that her unborn son was faced with an even more daunting diagnosis, Trisomy 18, otherwise known as "Edward's Syndrome."

The news came as an immediate shock to my senses; it was one of those moments of surprise that often has you sensing a wave of electricity passing along the length of your spine.

With the duplication of but one seemingly insignificant strand of DNA that might mirror even a fraction of the 18th chromosome, their child’s fate was all but sealed.

Fifty percent of those born with this syndrome die within a week of birth.

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JLH

On November 29, 2010, Jax Lee Hennon came into this world on his terms.

And what of his little heart?

The walnut-sized muscle was beating.

Despite any of the outward signs of imperfection brought upon by the genetic syndrome, the young couple looked at their second son and immediately declared him to be "perfect."

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After twenty minutes holding her swaddled boy, Rachel was informed his pulse was rapidly growing more faint. Not wanting to deprive Marcus of intimately sharing some of these precious moments, Rachel relinquished their son, Jax, to his father's anxious arms. The memory of this moment prompted Marcus to later write of, “the life he would never lead that flashed through his Daddy’s eyes.”

“The first fall; the first snowman; T-Ball; High School; curfews; sending him off to College; meeting his wife; holding his first child; helping him fix a leaky faucet … as well as about 14,000 hugs along the way.”

"My son. My beautiful son! I Love You! I will always love you!"

“I was weeping and crying … my body was fatigued from the stress I was feeling from the tension of crying so hard. I noticed through the wells of salty water on my eyelids that I had been dripping tears on Jax. If he couldn't see or hear, maybe Jax felt my love through those tears as they washed over his weak little body."

Forty-five minutes after bounding prematurely into this world, Jax's little heart finally gave out.

Marcus went on to also write,

“Our son was now where we could not follow. We had so desperately held on to him, prayed for him to stay with us, and anxiously fought against his leaving. On the other side of time his Creator, grandpa, and two great-grandparents were patiently waiting … Jax had come to do what he was created for. His part here on earth was now done. Our capacity to love expanded beyond measure, the value of mankind became ever clearer, and the love of God triumphed again. Jax’s heart beat for forty-five minutes, but for the rest of time when we think of Jax's life, we will also hear the whispers of God's good grace.”

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Reflections of Jax and his family are now intertwined with thoughts of Mother as she moves ever closer to her final days.

What I wouldn’t give for the opportunity to ask our late grandmother of the joy and elation she felt when ushering Mom into her life. As expressed by Rachel and Marcus, did Grandmother also deem Mother to be a perfect baby girl?

What I wouldn’t give for the opportunity to ask our late grandmother of all the unrecorded moments of Mother’s young life. Just as Marcus wrote, are the images of that which was experienced and yet unseen by my eyes over the course of her younger life somehow less important to me now?

While certainly not challenged with the genetics that would dramatically foreshorten her life, Mother’s frail little body does conspire against her today no less so than his genome guaranteed, from the moment of conception, nothing more than a brief sojourn for him here on this earth.

I do understand that none is guaranteed even a single moment of this precious commodity we call “life.”

But even as I declare an acceptance of this reality, I also continue to struggle as I seek to find answers to a good many unanswerable questions:

Why would nature allow an innocent like Jax to be conceived with the burden of potent and insurmountable odds levied against him; why would a loving God craft this beautiful boy using an unsustainable genetic paradigm?

Why would nature allow innocents like Mother to suffer under the yoke of needlessly horrific medical burdens? Why would a loving God allow some to pass away without pain during their sleep while countless others are made to endure years of cruel, inglorious decline?

Our family has spent the past few years bearing witness to Mother's painfully incremental physical and mental demise; it is an experience I would wish upon no one. But even as I have watched her life slowly ebb over time, I also struggle with recent decisions that would have the family no longer allow for the treatment of “treatable” conditions in the days or weeks ahead.

Like Marcus, I, too, have tried desperately to cling to any hope that Mother might remain with us for a while longer; after learning of the fateful treatment decision, my immediate thought was that neither she nor her loved ones should be deprived of even a moment of shared time.

“Take Rachel and Marcus as an example,” arguing to myself many times over, “surely they would have moved heaven and earth for but one additional minute with their son, Jax!”

Ten days after learning of the difficult care decision for Mother, aided by the benefit of that time to reflect on my feelings, I am now equally convinced Rachel, Marcus and their surviving son, Jace, might also be quick to add:

You need to be thankful for the gift of time you have been allowed to share at your Mother’s side.

But your Mother suffers now, no less so than did Jax during the final few minutes of his all too brief life.

No matter the difference in time allotted to each of us with loved ones, might it also be selfish not to grant your Mother leave to wash away the burden of mortal suffering and to move on to the promise of higher ground?

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Jax Lee Hennon. He lived, died, and offered valuable lessons within the span of but a single hour.

I will remain forever humbled by the dignity and courage exemplified by this young child and his loving family.

I also pray that when I am called upon one day to reflect on the life of our beautiful Mother, I, too, will be blessed with the guidance of the whispers of God’s good grace.

Marcus and JLH

http://www.youtube.com/watch?v=ada0867fbVM

Their remarkable and brave video.

Captured Life

Monday, November 15, 2010

Hospice Nurse:  "Who are the people in this picture, Dorothy?"

Mom:  "My babies!"

Mother continues to defy the odds.

Letting Go

My guess is that most parents didn’t spend a great deal of time obsessing as to our whereabouts when we were children; the term “play date” would have only served to alarm them to the existence of “imaginary” friends. Most children I knew were simply expected to spend their free time outside, away from the “boob tube,” taking in the fresh air at play with friends.

The seemingly endless summer days of my youth began with the sound of screen doors crashing closed immediately after breakfast and didn’t officially end until the street lights came to life just as dusk gave way to night. As if by some force of nature, the artificial light oddly compelled Mothers to emerge from the same screen doors crying out the litany of their children by name, ending another day at play with a final declaration of, “It’s time to come home.”

Later as a teenager in Houston, most of my friends were fortunate to have parents who felt secure in obtaining summer passes to the local amusement park, Astroworld. On those days when a swimming or baseball practice didn’t stand in our way, many a parent wouldn’t hesitate to trundle a mob of teenagers off to the park as the gates opened, not expecting to see us again until well after nightfall. We spent those days, safe from foreseeable harm, running in mad circles attempting to break mythical records for most rides on the Dexter Frebish or Texas Cyclone roller coasters.

Those were very different times.

Showering the other morning, I was momentarily caught in some random reverie of my childhood; I wasted a goodly amount of water transfixed by the memories of those halcyon days without worry. I smiled at the thought of my teenage friends, our misguided notions and adventures, the carefree days at the park, and my (former) fascination with roller coasters.

Emerging from the trance, my mind turned again to Mother; somehow I managed to reconcile the memories of those long forsaken roller coasters of my youth with thoughts of Mom and her life with Parkinson’s disease.

At least during that predawn shower, it all made perfect sense.

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When I last made an entry to this blog, Mother was suffering from an upper respiratory infection that was making its way throughout the nursing home in wrecking ball fashion. Even a month after the bug made its first imprint on a resident, you still can’t walk the halls without hearing other residents coughing coughs that border on a presumption of pneumonia. The virus has proven itself to be indiscriminate and relentless.

At that time, Mother truly seemed to be fast approaching her physical Waterloo; as a physician, I was hard pressed to believe she had the necessary reserves to muster the strength to win this fight. So serious was the concern among her caregivers that a decision was made to summon her remaining children to the bedside.

Twelve hours passed.

My brother walked into her room the next morning to discover the secretions in which she seemed to be drowning the night before had (miraculously) “evaporated” into the proverbial “thin air.” Mom was awake, alert and proceeded to assure Jim that breakfast was, indeed, in order; she was “hungry,” adding that an, “omelet does sound really good!”

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This is but one example of how her life these past few years can be likened to riding a roller coaster; this is the metaphor, no matter how cliché it might seem, that resonated with me during my shower as I stood reflecting on her life since being diagnosed with Parkinson’s.

I can’t speak for you, but will admit that I rarely seated myself on a roller coaster without wondering for a fleeting moment if it was, in fact, a good idea. The difference between Mother and me is that I was always given the opportunity to make that decision for myself; Mother, and countess thousands like her, had no say in the matter and were simply told to accept that there is but one way off.

Her life since the diagnosis has clearly become increasingly difficult over time yet she has never allowed any of her children to be witness to her disappointments. She took to her place on that roller coaster existence with nary a complaint and has always demonstrated amazing dignity. Despite the fact that the years ahead of her promised to be both challenging and frightening, she always managed to laugh and smile along the way.

She has endured the ups and downs, twists and turns, lurches and bumps with silent courage and equanimity despite understanding the disease was certain to carry her to that certain, unhappy end.

There were also times when I rode roller coasters absolutely convinced I was going to die. The best I could do once the ride started, however, was to close my eyes, hang on for dear life, and pray that the illusion of an impending death was just that.

My illusion.

But Mother is not destined to finish this ride as did I; that childhood illusion will eventually beome her reality.

And her disease is nothing short of cruel.

Just when everyone was certain her struggle with Parkinson’s was finally at an end a month ago, the track of her ride took yet another unexpected turn for the “better.”

“For the better?”

I don’t know.

Watching as Mother travels this path alone, completely helpless to alter or smooth the course ahead, always has the effect of capturing our collective breath while invariably carrying us to the brink.

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My Reality.

There is much of which to “let go.” I realize I have long been digging in my heels, not wanting to let go even when facing the fact that the woman in her room shocks me every time I visit; she definitely looks very much like the Mother I have always known, but that woman also no longer seems to exist.

Yes, I know she isn’t going to get better; again, that Mother is all but gone.

And, I have wanted to say goodbye for a very long time but have also been deathly afraid.

Of what?

The answer is simple: I don't know what I will do without her.

In typing that sentence, it dawned on me that Mother may not actually be the person whom I am most afraid of losing anymore.

That person may very well be me.

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For her sake, I will need to find the courage to let go of my fears and, instead, pray that her long ride with Parkinson's will finally come to its end.

And when that day comes, I am hopeful I will have the clarity of vision to see a way to discover myself anew.

Perhaps then, I will finally unmask the inner strength that will allow me to sincerely utter the dread word.

Goodbye.

She Sleeps

I recently watched the older, better version of the film, "Yours Mine and Ours," starring Lucille Ball and Henry Fonda as widow(er)s who met, fell in love ~ only later discovering they shared 18 children between them.

In this movie, as often occurs in real life, love trumped reason with the two eventually marrying, thus creating a setup for untold mayhem as they melded their menageries.

After settling their 18 tax-deductions into bed, the two naively prepared to enjoy the first night together as husband and wife. The anticipation was short-lived, however, when three or four of the youngest burst through the bedroom door announcing their intention to sleep with the newlyweds out of fear of new surroundings as well as a raging storm. Life would never be the same.

The next morning I awoke at 3:50 AM. I hadn't received a page ~ I wasn't even on call. Wide-eyed, I lay in bed staring at the ceiling thinking about the crazy movie as well as lamenting another lost opportunity to "catch up" on my sleep. Suddenly an odd, random thought crossed my mind:

Until the past year or so, I had never seen Mother sleep.

Why the thought captured my imagination I will never know but it struck me in such a way that any return to sleep lost out to a chair and computer keyboard.

I would assume many would argue my family was a bit provincial. While we were certainly allowed in their bedroom during the day, I can think of no circumstance which would have warranted an intrusion into the sanctity of the room at night. I can add with absolute certainty ~ storm or no storm ~ none of us ever sought sanctuary in the safety of their bed; it simply never happened.

For myself, I find this business of jumping onto the beds of family and friends to be perfectly natural; I always feel a bit closer to others after these early morning, rumpled hair, blurry-eyed conversations ~ as if I have taken yet another step toward premium membership to a club. But for all the enjoyment of discussing politics or planning the day, I will admit to a sub-rosa "pull" that would have me get up and leave the room. Somewhere in the dark recesses of my dusty brain, the distant admonishment not to disturb the sanctity of a bedroom survives.

Following what I had always presumed was the natural order in everyone's life, Mother was up and dressed well before any of her children. Once we were all eventually enrolled in school, there was the daily process of making sure each was appropriately attired (siblings claim I once somehow managed to wear pajamas to school) followed by a hearty breakfast ~ that "most important meal of the day." After finishing, each of us was bustled out the door, packed lunch in hand, to then make our way to school ~ times being different, everyone walked.

If Mother then took a much needed nap, I never knew it.

Mother operated in high gear; when her health allowed, she was never deterred by any person or for any reason. She was the living embodiment of the proverbial Energizer Bunny.

When she wasn't shopping for groceries, making dinner, baking desserts, or cleaning she somehow managed to find time to garden, sew, knit, take the occasional art class, play bridge, or raise a never-ending lineage of stray dogs, cats ~ even fowl.

It was only after our stepfather retired from corporate life that we began to see the two of them slow down a bit; the first small step was in the form of short naps taken in the afternoons. I can personally sleep anywhere and at any time ~ medical school and residency has a way of conferring this ability. For the life of me, however, I never saw Mom take a nap on a chair or her favorite couch; she reserved sleep for the privacy of her bedroom.

Specialists have long assumed people need more sleep as they age; this is what I assume my grandfather referred to when lamenting that "youth is wasted on the young." The notion that sleep starts to deteriorate in middle age and steadily erodes with advancing age seemed so obvious that few challenged the prevailing wisdom.

Researchers now feel, however, that sleep patterns do NOT change much from the age of 60 or so; the studies seem to indicate poor sleep is not due to aging but, rather, results from illnesses and the medications used to treat them.

There also seems to be a recognized process whereby poor sleep feeds back to cause a further reduction of health. At least as regards pain, a common factor in disrupted sleep, a restless night can potentiate pain the next day which can further make sleep more problematic.

In Mother's case, she experiences what can only be labeled "fragmented sleep." Her interrupted pattern of sleep has led to impairment of her pain pathways. She feels pain more easily, is less able to inhibit pain, and develops more frequent neck and backaches. The vicious cycle ensues.

Fifteen months ago, while clearly suffering the ravages of Parkinson's disease, Mom walked through the front doors at GVM on her own two feet. Over the next couple of months, she did everything ~ including breaking through a security door ~ to "get the hell out of that place" ~ to go home. The nursing home could not initially deter our Energizer Bunny.

Effectively bedridden since the beginning of this year, however, she is no longer capable of pursuing an exit strategy or anything else that once mattered; instead, she spends more and more time sleeping her days away.

It has admittedly been unsettling seeing Mother spend so much of her time in sleep. Strangely, it has never seemed as if I have intruded on her privacy as I watch her sleep ~ so much about life in a nursing home requires everyone to forfeit most of what exemplifies a "normal" existence. Over time I have even come to somehow enjoy listening to the quiet cadence of her breathing ~ there is some small comfort in this.

But there is also the natural inclination to spend time lamenting the woman that was; the energetic Mother who could make everyone around her seem slothful as she moved through her days. This is clearly not the life she envisioned for herself ~ a fact which saddens all of us. I have a sense that if Mother were fully aware of her circumstances she would have a lot to say about how she is spending these days. As for the rest of us, we have learned to accept the simple benefit of sharing time together; asleep or not, being with Mother is a gift.

When asking my oldest brother to confirm or dispel my notions about Mom and sleep, he went even further adding he "wasn't altogether certain she ever slept."

He then relayed a forgotten memory from a distant Christmas Eve years ago when Mom "slept" on the floor of our room ~ apparently out of fear we boys would ruin our morning surprise. All night, as we tossed and turned from excitement, Mom was repeatedly heard murmuring the admonishment to, "lie still."

Whether she actually slept that night we will never know.

Rest assured, she was there when we awoke.

Miss Ruby

There is something intoxicating about the smell of yeast bread as it is baking; it instantly makes my mouth water.

Mrs. Hanlin was responsible for this. She came to us when Mother was ill and hospitalized for a long period of time; she cooked and cleaned for our family. She was apparently very good at both but her cleaning is NOT what I embraced. I distinctly remember the smell of her yeast bread dinner and cinnamon rolls as they were baking. Long after she had gone that sweet smell was forever etched in my memory.

In the days when I started first grade there seemed to be little concern for children walking to school -- everyone walked. Over time, I came to use those walks as a barometer to gauge how my day would go; an ideal day for me would have begun by walking into the bright light of a Spring morning -- a crisp chill hanging in the air. But, perfection was realized only when the sweet smell of yeast bread goodness permeated the breeze as I approached school. Everyone always knew when it was cinnamon roll day. For this reason, and more, the cafeteria ladies held a special place in my heart.

Miss Ruby worked her entire adult life as a cafeteria cook; she was one of the vaunted ladies entrusted with the secrets to making my only vice come to life. I generally carried my lunch to school but it didn't stop me from coveting the "fruits of her hard labors." I might have sold my soul to the devil for one of those rolls; as it is, I had to settle for potato chips as my only bargaining tool.

I don't know what brought Miss Ruby to GVM. I only know that one of my brothers immediately fell under her spell. It wasn't until I found out what she had done for a living that my interest was truly piqued; I decided I would do almost anything to gain access to her secrets.

I can write that she is almost 100 years of age, nearly blind, and has a wicked sweet tooth. My brother began to spoil Miss Ruby and a gaggle of her lady friends early on by bringing Tootsie Roll Pops almost everyday. It got so bad after a while that one of them would invariably lose her manners by blurting out, "What have you got for us today."

I honestly am not sure if Miss Ruby actually eats Tootsie Roll Pops -- or sells them on the black market. I am justified in writing that because the basket of her walker always has the look of a porcupine for all the Tootsie Roll Pops that stick out of it. I always ask if she has any left, to which she softly replies, "No, I don't think so." When I point out evidence to the contrary she expresses surprised innocence; I choose to believe she is a very cunning actress. She is also irresistible.

She is extremely proud of her days as a cafeteria cook and also speaks quite fondly of her myriad students; she is one of the lucky people who truly loved her work. Yes, she does have the secret recipe for those cinnamon rolls but always insists she doesn't know exactly where she stashed it. She is wickedly cunning. I make a mental note to push harder the next time or to corner one of her unsuspecting relatives.

An amazing woman; soft spoken, kind, reflective, funny, and adorable. She loves to talk.

Sadly, just shy of her 100th Birthday, Ruby died in the comfort of her own bed on July 5, 2009.

That afternoon was unsettling for me; I was pensive. I later looked around the nursing home and noticed nothing seemed to have changed; clocks were ticking, residents were eating their meals, and medications were being passed.

I have been around medicine long enough to know better but still the question surfaces. Why doesn't the world quake or stop when a life is taken? Why aren't we forced to stop and immediately take stock of a life lived and lost?

And then -- in the same moment -- my revery ended as I remembered that I had been asked to find someone to address a problem for Mom. This is what happens -- life happens.

That evening I walked down Ruby's hall and noticed her personal effects were still in the room -- as if she wasn't gone. In a corner stood her walker. And there they were -- jutting out of the basket were two sticks from those Tootsie Roll Pops. I couldn't help but smile.

I keep imagining her as the cafeteria lady from my childhood. The thousands of greetings she must have received over the years!

Hello, Miss Ruby!

Even though I never did get that recipe, I know I am a better person simply for having known her.

The sweet smell of yeast breads baking will forever return me to memories of Mrs. Hanlin and the halcyon days of my youth. It will now also bring me back to these days at GVM, when I came to know one of the cafeteria ladies who once held a secret key to my heart.

Goodbye, Miss Ruby!

Dancing in Wilmette

This picture never fails to bring a smile to my face and lately brings a few tears to my eyes as well.

I look at this beautiful girl dancing on her grandfather's property in Wilmette, outside of Chicago, and can't believe this was my Mother. I wonder what she must have been thinking, what music -- imagined or otherwise -- moved her to dance, or if the laugh I know was part of this moment in time. The sidewards glance has me wondering if it was directed at her Mother who monitored her every move.

That right leg bothers me.

To look at this little girl, I know she is in complete control of that leg; she jumps with joy and ease. And if one looks carefully, there is the telltale sign of a bruise over her shin earned doing -- God only knows what. Put this beautiful girl in her Sunday best and she proved to be just a little girl at heart.

Mom's right leg has now been rendered moot through disuse as her disease has progressed. After a period of weeks being confined to bed this past winter, her right foot is now permanently flexed; it is immovable.

The indignity is made worse when she expresses an overwhelming desire to walk. One experience of having your Mother look into your eyes, begging for help to free her from confines of a wheelchair, brings on an indescribable heartache.

We recently gave into her plea and, with the assistance of a trusted aide and friend, decided to help her attempt to walk. It was exhilarating, painful to watch, and probably ill-advised; how could we refuse? Tracy assisted Mom to her feet, and, with all the will she could summon, Mom took three tentative steps. The right foot refused to cooperate yet she persevered. She then uttered words that broke my heart, "I just can't do it."

I no longer have many problems dealing with the physical assaults on her body but I struggle when she becomes defeated; Mom didn't have to say anything for me to understand the expression on her face. Defeat is not a word in Mother's vocabulary; it is not part of her nature.

Her leg is still covered with bruises, but they were not earned at childhood play; instead, they are a result of some of her medication as well as the fact that she now doesn't move without the assistance of an aide or family member.

I never had the opportunity to meet the girl in this picture. If only I had the ability to transport myself to her grandfather's home in Wilmette on this sunny day so long ago. I would give most anything to see this beautiful girl -- dancing without a care in the world.