One Year: My Opinion Stands

I wrote this just after the election and, for a myriad of reasons, I never shared it. I also marched a year ago, but this year I could not attend. Maybe sharing this now is my way of protesting in absentia.

For me, this has been an enormously painful year, enduring the persistent assault on values I have worked hard for and hold dear, from education to the environment. Personally, this administration cannot end soon enough.

Dear Mr. Huckabee: A Nation of Dissonance Rather than Harmony

A day after the election, Republican politician Mike Huckabee wrote, “The sun somehow seems to be shining more brightly and the birds singing more sweetly. Or perhaps it just seems that way to me.”

Yes, sir. It’s you, Mr. Huckabee. Your remarks, and similar remarks by others since the end of the election, are offensive to many. This is not because he won and she did not, but rather that your words attempt to dismiss, or diminish, the issues related to the presidency and ones that continue to divide this nation.

Some of us have firsthand experience and, therefore, the ability to identify malignant narcissism. Understand that you may not recognize the oft- missed signs, and how narcissists desperately need their “tank filled” with adoration and praise. You may not recognize how they fly off the handle whenever their thin gold veneer has been pulled back, concealing significant character defects. When his “tank is running dry,” he must “fill up” at the expense of others to appear “brilliant,” “the smartest,” “the best.” Accept that you may not be able to smell danger like those who have lived it. We recognize master “shape-shifters,” projectionists, and individuals who are void of empathy. You perceive “strength” and “confidence,” while we observe narcissistic rage and narcissistic supply. Respect the fact that some of us know how it can lead to instability, abuse, and worse.

Respect the fact that some of us have firsthand experience with institutional discrimination. While some are “tone deaf” to it, others perceive discrimination through pitch disturbances and nuanced noise. While you may only hear unpleasant sounds that elicit claims of “racism,” “bigotry,” “homophobia,” and “xenophobia,” others hear frequencies that you either select not to hear, have been trained not to hear, or that you simply cannot perceive. For those subjected to discrimination, it sounds like the series of clicks as the hammer of the gun is readied. Squeezing the trigger is nearly imperceptible, then the hammer of the gun snaps and the explosion is deafening.

Respect the fact that some of us were the objects of unrelenting bullying. The bully was the one who fed off the putdowns and name calling of others, often using the slick guise of humor, emboldening their fellow tormentors while gleefully watching their victims contract. You may have never been bullied or choose not to recognize bullying because it makes you uncomfortable. Or perhaps you are the bully and do not identify it as a problem.

Respect the fact that some of us have firsthand experience with sexual assault and/or sexual harassment. Words can serve as triggers, as memories of assaults resurface, years or even decades later.

Many believe we have elected a man who is a malignant narcissist, racist, bully, and misogynist all rolled into one. Some of us have banked our experiences over a lifetime and go to great lengths to avoid any one of these loathsome types.

Now that he’s been elected, we are told to “get over it.” “Give this guy a chance.” I didn’t vote for him, but I hope for the sake of my country, and for the sake of my family, that he is not what many of us fear.

We can both agree that the intensity of sound is measured in decibels. But neither of us can perceive what the other hears. In my estimation, this election has proven that the nation is a chorus of tone-deaf individuals incapable of recognizing that they are even tone deaf. Sure, everyone has a right to sing, but that does not diminish the discomfort for those who possess relative pitch.

This nation is one massive chorus, and we must overcome dissonance so that you, and others like you, are not the only ones who are hearing “the birds singing more sweetly.”


Holding On

For as long as I can remember, we’ve been hand-holders, her skin always so soft and her touch seldom anything but gentle. Driving in the car together, we often clasped hands while I sang silly songs and she laughed. And we always held hands while walking, guiding her as I walked slightly ahead to avoid potential hazards and obstacles she might not otherwise see. Yes, it’s always been an important aspect of our relationship, and the stroke wasn’t going to deter our long-established habit.

Throughout the day and night during her hospitalization, I pulled up the reclining chair as close as possible to the left side of her bed. Placing it in just the right position, I was able to carefully wind my hand between the rails of the hospital bed. At night we clutched each other’s hands in the darkness, the sound of her IV rhythmically whirring at the head of her bed. She softly repeated “home, home” as she drifted in and out of sleep. I lay awake as I worried, scared whether we would make it home together, or whether home would ever be the same for either of us.

Finally discharged from the hospital, we were in inpatient rehab where we were given a room that accommodated two hospital beds. Every night I released the brake of my bed to move it closer to hers. It would sing a high-pitched tone as Ashley giggled, amused by the idea that I had somehow broken my bed. I looked forward to the nightly ritual as I was comforted to hear her laugh, once again affirming that her humor had not been lost by her devastating circumstance.

I aligned our beds before setting the brake, adjusting my bed’s height to match hers, and then inclining her head to 30 degrees to address her feeding tube. It was the same for twenty-four nights: the brake, the noise, her soft giggle. And one night after another, I wound my right hand through the rails of the bed as we held hands throughout the night. Ashley no longer said “home.” She must have recognized that our room in rehab was home for now, and that she was not yet prepared to tackle the demands of her previous life.

Upon discharge and finally home, I slept with her in the same bed. Transfers to and from her wheelchair, and in and out of a four-poster bed, were now all but impossible. Her queen-sized bed was broken down, mattress and box springs placed directly on the floor. Each night, after placing her in bed and stretching ligaments and tendons, I carefully propped her right arm on a pillow to reduce the swelling in her hand and fingers. And each night, as her right arm lay limp, her left hand was in my right as our fingers intertwined.

But something has happened since her stroke, and since returning home. The gentleness she once had in her touch has become demanding and agitated. She searches for my hand in the darkness and holds on with a firm grip. And when our hands happen to unclasp in the night, she frantically searches until she can again tightly hold my right hand within her left.

Her skin is still as soft as ever, but her touch not so much. I recognize it as a byproduct of the stroke, as are the bruises and cuts up and down my arms.

I willingly care for her, transferring her to and from the toilet, the shower chair, the bed, her wheelchair. But I am left to protect myself from her grip: grabbing a fist full of hair, pinching the fleshy part of my arm, or digging her nails into the back of my hand until she finally lets go and the skin is pierced with crescent moon-shaped cuts.

She is now dependent upon me for everything. And she’s angry. It’s apparent in her touch, but I can also see it in her eyes. The stroke has robbed her of far too much. What was once a simple task must feel overwhelming. Just a swallow, a simple swallow, now takes careful planning from a body she can no longer count on.

She’s also got to be scared. I know I am. There is still so much hard work ahead. We are only three months into this journey. The cuts and bruises can serve as a reminder that she is thankfully still with us, and her soft skin a reminder of how things were and where we hope to return.

But, in the meantime, I’m not letting go of that hand. It’s not time. Not yet anyway. In fact, it may never be. No matter how much anger she exhibits, no matter how hard she pinches, no matter, I am not letting go.

When Empathy Isn’t On the Menu

It was the caffeine I was after, even better delivered in a perfectly blended, ice-cold beverage. Bring on the ridicule for paying $5.15 for what is legitimately an overpriced drink. But “I don’t care a whit,” a more genteel way of saying, “Back off, Starbucks haters!” 

As soon as I ordered, and the word “Frappuccino” crossed my lips, I accepted the fact that consideration of fat grams and calories was out the window. But I ordered it with 2% milk anyway, as if that really made a difference. Sometimes being in a delusional state is a gift.

That day, my state was more accurately described as a stupor. Absolutely. A deep stupor.

The barista stuck his head through the window of the drive-through. He was a young African-American man with a big, welcoming smile. He quickly turned and looked back for my drink. I could see through the window that it wasn’t ready. 

Out popped his head again as he was about to strike up a conversation.

No, no. Please, don’t. Please don’t ask me…don’t…

“So, how’s your day?”

I was finally on my way home after spending the previous three consecutive weeks in the hospital fighting for my oldest daughter’s life. I had coverage with her and felt safe to run home and regroup. I had been struggling to mentally prioritize the enormous load of work I had to perform in just a few short hours before heading back to her bedside. And now all I wanted was a shot of caffeine while I was driving home to prevent me from falling asleep.

I had a split second to decide: Do I tell him? Do I tell him the honest truth? Or do I lie, like I have so many times before, by just saying, “Fine.” I’m a seasoned pro at “embellishing the truth” for the sake of others. Even when my life is crumbling around me, I have been conditioned to give people what they want to hear.

But today my day was so far from “fine.” And there was that overwhelming stupor. 

Out popped an honest answer: “Ohhhh, my daughter had a stroke three weeks ago. She’s still in the hospital.”

He looked back at me and never said a word. In fact, the expression on his face didn’t budge. Not a millimeter. I will never forget his face because that was all he had to give back. And his facial expression was still frozen with “So, how’s your day?”

I awkwardly chuckled and responded, “Ya, what can you say?”

He handed me my drink and I drove away. I immediately began thinking about how I might respond if I received the occasional email survey asking the same standard questions about my recent visit:

“The employee made an effort to get to know me.”

I knew I would answer, “Strongly agree.” 

That stupor. And embellishing the truth. 

What’s the point of being honest? 

But next time I’ll roll up my window and pretend not to see the barista until they’re about to tap on my window with my drink in hand. 

I’m a pro at pretending.

I was back at the hospital a few hours later, pretending that everything would be okay.

CAUTION. You Are Now Entering the Hospital.

To be perfectly blunt, hospitals can be scary, scary places, where mistakes can be made that cause patients to become sicker, prolong their stay, and increase their medical bills. And at worst? Hospitals can kill.

My daughter’s most recent hospitalization has been no exception.  And I’ve found myself a hair-trigger from a primal scream more times than I want to admit. But the tears and primal scream will have to wait for another day. Now is the time to walk that thin, fragile line between advocating for appropriate care and holding folks accountable. And while I have a lot of experience at this thing called “advocacy,” I am capable of losing my balance (and my cool).

Just one department – respiratory therapy – has been enough to absolutely take my breath away. (Yep, that was deliberate. A piece of advice during a crisis: Do your best to find and maintain a sense of humor.) Having had multiple respiratory therapists treating her, one could be lead to believe there is a direct correlation between prolonged exposure to bronchodilators and diminished bedside manner. There is clearly something up with a number of these folks.

And inhalation of steroids may have somehow rendered respiratory therapists completely incapable of performing chest physiotherapy treatment (CPT), a technique to clear a patient’s lungs. Whether performed mechanically or physically, I have heard more excuses for all the reasons they cannot do it. 

Not withstanding the benefit to the patient – partially paralyzed from a stroke, bedridden, and battling early pneumonia – I heard excuse after excuse. “It causes carpal tunnel” (And so can keyboarding, but it is an expectation of the job and not the least bit of concern to the patient.) “I walked a half mile each way and couldn’t find a percussor.” (And I’m sure it was all uphill.) “Percussors walk out of the hospital.” (Those pesky percussors are not only capable of growing legs but are to be blamed for inadequate equipment inventory. Who knew?) “Percussors end up in isolation rooms and we can’t find them.” (There they go again, now playing hide and seek.) “95% of patients can use a flutter valve.” (I asked about the other 5% that includes my daughter with disabilities. Guess it’s SOL for her and patients like her who can’t use one.) “I didn’t see it on her chart so I can’t perform it.” “The doctor didn’t order it.” (Wrong and wrong.)

I was told by one respiratory therapist, “For patients like this (ohhh, bring it on, baby), I rely on the family to tell me what they need.” Uh, SHE NEEDS CPT! “Oh, I can’t do that. I have a shoulder injury.” So, who did her manual CPT? Me, of course, while the respiratory therapist watched. (He said I performed it well. Thanks. And I guess we’ll be getting a hospital discount? A “participation trophy” at discharge would be a nice touch.)

And that was after the respiratory therapist handed my daughter the breathing treatment, stepped to the end of her bed, and began watching the Rachel Maddow Show. Unsolicited, he began sharing his conservative political views about Puerto Rico. (Did I look “conservative”? Or the least bit curious about his political views?) I’ll be watching for an additional hospital discount for inattentiveness, or for being forced to listen to his lack of compassion during a humanitarian crisis. 

Never mind one respiratory therapist telling me that “it’s lucky that patients like her don’t know what’s going on.” Not only was he wrong that he should not be bothered with performing CPT, but he was also wrong that she doesn’t understand. Upping the ante in offensive remarks, I was told that in his day, “Patients like her were sent to the Hospital for the Incurables.” Are you kidding me? Did he just say what I think he said to the mother of a human being he is calling an “incurable”? His disability may be learned rather than congenital, but he has acquired a raging case of ableism!

One respiratory therapist must have thought I was the equivalent of a hospital priest and my daughter’s room a confessional. “This might be illegal but I “stack patients” by putting masks on multiple patients at the same time who are on the same floor.” He’s lucky we’re not paid actresses playing mother and daughter investigating Medicare fraud, or a hospital equivalent of a Secret Shopper. I hope his soul now feels at peace for getting that off his chest while my stomach has just been turned.

This is just one department. And it’s only a fraction of this entire experience. Unfortunately, it’s much bigger than this. It’s not just about the poor performance of a single department. It is about trust. It is about the patient (and their caregivers) being heard. It is about trusting that the national standard of care is met. It is about trusting that a patient’s health can and will be protected by a medical institution. 

And that this is happening in the presence of caregivers and families, and a physician’s family to boot? I dread to think what else is going on for which the public is completely unaware. 

Yes, indeed. Hospitals are scary, scary places. Stay alert, folks. Your life and health depend on it.

Will She Live With Me Forever?

She was a well-intentioned soul, my neighbor from across the street. Two elementary-school aged boys, husband, no pets. She was at least 12 years older than I, married later in life. Her first, his second. She was a former teacher now retired, he was a geologist.

She appeared at my front door on a typical mission, or so I thought, possibly dropping off neighborhood newsletters or selling cub scout popcorn. I honestly don’t recall why she came to our house that day, and I don’t recall why I didn’t just simply invite her in. Maybe I was embarrassed by the mess of toys and a used refrigerator box in the middle of the den. There wasn’t anything particularly exceptional about all the toys, but the box? Albeit an effective tool for teaching Ashley to crawl rather than roll, pivot, and roll again to her intended destination, I’m sure it looked odd. And back in the day, I cared not to look different.

I’m sure I wasn’t a thing of beauty that day, or any day for that matter. I had likely pulled on the same gray sweat shorts I was known to wear, t-shirt, hair pulled back in a tight ponytail, no makeup. My “work attire.”

Yes, I was frazzled. Heck, that was my “state of being,” running from therapy to therapy, developmental activity to developmental activity, teaching sign language, implementing the newest Apple technology, serving meals or snacks in side-by-side matching high chairs, Ashley and Megan only fourteen and half months apart. (Yes, it was planned. And, no, I’m not nuts.)

So, I stood at the door, likely with one child on my right hip, possibly the second on my left. It was not unheard of, and all too common. I recall the conversation at the door was nice enough. Relatively short and sweet. It couldn’t have lasted long because I wouldn’t have been able to manage holding both girls for very long.

Then the idle chitchat was over and her curiosity got the best of her. She wanted an answer to a question:

“Will Ashley always live with you?” 

I mean, Ashley might have been 4 years of age at the time? Caught off guard, I lacked a great comeback, likely sputtering, “Oh, I have no idea” or “Too soon to tell.”

Parents of kids with special needs could easily share “the things not to say to a parent of a child with special needs.” Kind of like David Letterman’s Top Ten List, there is no doubt that question would make my cut. 

But top on my list would be “God only gives you as much as you can handle.” Oh, please. Spare me. If that were true and I couldn’t handle so much then would my child still be disabled? I’ve learned over the years to give my well thought out, decades-old, seasoned response: “My God is benevolent. He gives me the strength to handle what happens.” 

Oh, and by the way, shit does happen. It just does. No, I don’t have the “devil around me” because I have had so many difficult challenges. (Yep, I’ve had that one said to me.) And I am not in some “spiritual warfare.” (Yep, I’ve heard that one, too.) My question to the person who would say such things is, “Could your spiritual warfare be self-righteousness?” (No, I didn’t say it, but I sure thought about it!)

Oh, and God did not pick me for some weight-lifting contest. And if “adversity builds character,” enough already.

Another good one is “I couldn’t do what you do.” I’ve lost track of all the times I’ve been told this. I’ve heard it enough that I have my canned comeback: “Don’t underestimate yourself. You might be surprised what you are capable of!” Or, “You know, you have one of two choices: You either handle it or blow your brains out. I chose the former.” (I use the second response on folks who appear to need an extra dose of reality.)

But the question from this neighbor, asking me to predict Ashley’s living situation decades later, came early on in motherhood when pithy responses were not easily had. Geez, I wish I had a do-over. Young Kim was still swinging in and out of grief. Old Kim has acquired some defensive strategies.

But if I did have a do-over, after all these years? I might say one of the following:

“Adults…oops, kids…say the darndest things!”

“Shoot! My crystal ball is in the shop!”

“Next time I see my clairvoyant, I’ll be sure to ask.”

“It’s likely she will if she doesn’t get into medical school the first time.”

“Gosh, I hope so for the sake of my marriage. I hear empty nesters can be prone to divorce!”

“I’ve always wanted to do that Dallas/Southfork thing. I can see it now. I could be Miss Ellie and Hal could be Jock!”

“I was about to ask you the same thing. Do you think they’ll release your son into your custody, or do you think it will be an ankle bracelet at the halfway house?”

And lastly…

“How the hell do I know?”

It’s now shy of thirty-three years since Ashley’s birth, and about 29 since my neighbor showed up at my front door. Now my daughter is fighting for her life after a devastating stroke and I am fighting right along with her. I could no more tell you what 20 years from now looks like than what tomorrow will bring. What I do know is there are no guarantees for any of us. We are all but a breath or heartbeat from an eternal life.

And so if anyone showed up tomorrow at her hospital room and asked me, “Will Ashley always live with you?” I would absolutely respond, “Gosh, I pray she will.”

Ruminations of a Quasi “Writer”

It was a simple exercise performed at the beginning of my very first writer’s retreat that had me facing my subconscious. We were instructed to approach others in attendance, greet them with a handshake, and then proclaim, “I am a writer and I am here to write!” We moved from attendee to attendee until we had made the rounds and matter-of-factly greeted one another with these same words.

No big deal, right? Honestly? Wrong. It made me squirm, likely because I’m not exactly sure what a “writer” is. And I am not certain I am one.

No matter, saying those four simple words – “I am a writer” – stirred up some shit. Oddly, it quickly became an exercise in how I see myself – how I truly see myself – rather than how others may or may not perceive me.

“FRAUD” is the word that bellowed in my head. “Who the hell do you think you are referring to yourself as a writer?” “IMPOSTER!” was hidden behind my awkward smile. I’ve struggled my entire life with the measure of my achievements completely out of sync with my internal view of myself. And so there it was…again.

I don’t embrace titles or accomplishments well. And for those who know I have, among other things, written a book (that has been published, for gosh sake), you might find that curious, even strange. Yes, intellectually, I do, too. But to my way of thinking, a layperson bravely stepping forward to deliver a baby in a moment of crisis does not make one an obstetrician. So writing a book in an effort to help others did not make me “a writer.” In my estimation, all I did was deliver the baby.

And when the “imposter” in me reappears, that logic seems incredibly, and unfortunately, rational.

That is, until I had to say it over and over again: “I am a writer,” “I am a writer,” “I am a writer.” It begins to reach a level of sensibility to add “writing” to my list of hobbies because, well, hobbies are “safe.” “Reading, gardening, baking, knitting…writing.” I might consider being brave enough to identify with the -ing version of the word.

But the -er version of the word? Can I legitimately call myself “a writer?” Maybe the constant crashing and colliding of all those words in my brain is the “writer” trying to find a safe place to land: a piece of paper, a Word document, or an entry on the Notes app of my phone. If, on some level, that were not true, it would have been completely irrational for me to have been compelled to attend a writer’s retreat, and of all things, not once but twice.

Is there possibly a “writer” in me trying to find her way out?

For now, I may not be able to fully embrace “writer.” But maybe I can embrace “word pilot”: someone who carefully lands collections of ordered letters and reasonably articulated ideas safely onto a page. And then maybe I can admittedly breathe a sigh of relief each time I place the tires on the tarmac. The repeated touch and go maneuvers of my thoughts have been, and are, incredibly exhausting and not the least bit satisfying. I desperately need to create a runway to land my words.

So, may I introduce myself?

“I am a word pilot and I am here for a very hard landing.”

There. That I can live with.

The Thirty-Year Anniversary: A Betrayal

In a twist of fate, lives collided with my husband’s and missing pieces of our past were revealed.

As a cardiovascular anesthesiologist, he was in a case when the cardiovascular surgeon began chatting. They soon realized they had both trained at the same hospital. I can imagine they likely swapped names of familiar physicians, compared their years of training to determine whether they coincided, and reminded one another of the demands of residency.

And then, in the course of their casual conversation, the surgeon shared a fact about the well-known cardiovascular surgeon he had trained under: “He never looked upon children with Down syndrome as ‘whole people,'” likening them to “guinea pigs.” He believed “those were the good cases for the residents to train on.”

Over the years, I had received many disturbing phone calls from my husband, relaying stories of difficult cases, instances of serious morbidity, and even mortality. I recognized it as a way for him to decompress by talking about the challenges of his day. And so, after years of these calls, I had essentially gotten used to them.

But this one was different. This time he sounded particularly shaken.

The surgeon had no idea the significance of what he had said, and my husband never told him. The well-known cardiovascular surgeon he had trained under had performed our daughter’s first open chest surgery, and her subsequent open heart surgery when she was just two-and-a-half years old.

And he had no idea that our daughter, the one who had had open heart surgery, has Down syndrome.

When my husband repeated the surgeon’s words to me, it was as if a lifetime of what “could have been” flashed before my eyes. I recall being…shaken. Is that the word? Is there a word for the moment you realize you had handed your child over to a monster?

Thirty years later, I’m not over it. Will I ever be?

A few years later, I was still desperately looking for “closure,” as if there is such a thing for something so devastating. I demanded my husband call the cardiovascular surgeon to verify the story. The surgeon had since moved, but I needed to hear his words for myself. I found his address, then his phone number, and took it to my husband. But he would not call, unwilling to infringe upon the surgeon’s privacy, and convinced that it was not in my best interest. And hearing the story once was more than enough for my husband.

I let it go. And yet, to be honest, I never quite did.

As fate would have it, months later, my husband provided anesthesia for a second cardiovascular surgeon. Operating room gab not uncommon, the conversation again turned to residency. Sure enough, he, too, had trained at the same hospital as my husband. He, too, trained under the same well-known cardiovascular surgeon. And he, too, had no idea that idle conversation in the operating room would uncover something of personal significance to my husband: That well-known surgeon “often left the room during the procedure, sometimes to play golf,” leaving the case in the hands of the resident.

This is all likely incredibly disturbing for those of you who have ever handed your children over to another for care. “Primum non nocere.” The Hippocratic Oath. “Do no harm.”

My God, I had handed our daughter over to someone less than human.

Had her outcome been “good,” even “just okay,” this would have been at best “disturbing.” But, for our daughter, the outcome of her surgery was catastrophic.

From my book Teaching by Design (Woodbine House, 2005):

“The severity of Ashley’s complications were not completely revealed until we read her hospital discharge summary. Her blood pressure had fallen even lower than we were originally told. Ashley had experienced a severe ischemic encephalopathy: Not enough oxygen had reached her brain for so long that brain cells had died. Only time would reveal how much she would improve.

 Ashley returned home to us a profoundly different child. Drawn up and tight on the right side of her body, she was fitted with a resting hand splint to try to keep her arm in a more “relaxed” position and prevent her muscles from permanently contracting. In contrast, her left side was limp. Her left eye was turned in. She was unable to perform even the most rudimentary physical tasks, such as holding her head up or moving it from side to side.

 …She had lost the ability to nurse or drink…

 …Ashley’s thermal regulation had also shut down…

 …Ashley was capable of going for days on end without sleep…

 Unfortunately, Ashley’s surgery continues to haunt her. The challenges that she faces that result from Down syndrome are always eclipsed by these additional acquired disabilities. She is legally blind, a result of a decreased field of vision and loss of depth perception. She has a severe language disorder, including expressive aphasia and apraxia, which greatly limits her ability to speak. And she is agraphic which impairs her ability to write. Other health-related hardships have followed, including another open heart surgery to repair her mitral valve, major hip surgery to correct a dislocating hip, arthritis, and chronic pain.”

When I was performing research for the section of my book about Ashley, long before my husband had learned of these new revelations, I had always wondered what had happened to that resident. I had never forgotten his name. I found him and emailed. To be honest, I can’t remember what I wrote, but I do recall I didn’t have the heart to ask him any specifics about our daughter’s surgery. But, even before these recent revelations, I always had an inkling he felt significant responsibility.

For months, all work stopped on my book. I had read medical journal articles wanting to understand the science behind the insult on our daughter’s brain. That was the scientist in me. Articles described what had happened to our daughter down to the cellular level. And it was the first time that it was clear to me that the hospital staff was also complicit by withholding information.

I can retrospectively recognize that I fell into a deep depression. The mother in me couldn’t handle it.

Now, with this new information, I was all but certain that the resident had performed at least some, if not all, of the critical parts of our daughter’s surgery, likely not properly suturing her pulmonary artery, causing excessive bleeding, drop in blood pressure, and subsequent brain damage.

“We never saw her surgeon again after that one conversation in the family waiting room when “all went well.” His chief resident came to our room and cried with us. Staff continued to provide very little information, although we were told, “If she does not improve significantly within two weeks, we don’t know how you will be able to care for her at home.” I was overwhelmed with dread. Though their veiled threat to institutionalize her was never an option, I wanted to scream at them at the top of my lungs!”

Years after her first open heart surgery, and in preparation for her second open heart surgery a decade later, Mayo Clinic informed us that her pulmonary valve had been removed during her first surgery. We had never been told. She continues to be followed to this day for potential life-threatening complications due to the loss of this valve.

The more recent revelations continued to haunt me, and on September 6, 2011, I searched for the resident again. This time I stumbled upon a medical journal article for which he was the lead author, along with our daughter’s original pediatric cardiologist, and the well-known surgeon. I know the date because I immediately emailed my husband. No subject line, just two lines of text: the title of the article, the name of the publication, the page numbers, and the date.

Likely affected by Ashley’s outcome, the chief resident chose to do his research on the efficacy of the procedure that probably caused her stroke. Pulmonary artery banding was the open chest procedure that had been performed on our daughter in early 1985 when she was just three-and-a-half months old. And the removal of the band, and the reanastomosis of her pulmonary artery during her subsequent open heart surgery, is most likely what lead to her brain damage.

The effective dates of the “25-year experience” addressed in the article were May 1962 through April 1987. It surely wasn’t by coincidence that our daughter’s open heart surgery, and the devastating complications, was left out of the study. It was by design.

The date of her surgery was May 19, 1987. Thirty years ago today.

Every so often I look for the obituary of that well-known surgeon. When I see it, I will know he is gone. I will know he has finally been judged by a higher authority.

And maybe I can move on. Maybe I can finally forgive him.