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.


Thank you, Ann Coulter?

Dear Ann Coulter:

In your new book, In Trump We Trust, you’ve cleared up that pesky misperception that Donald Trump was mocking Serge Kovaleski, the New York Times reporter with a congenital condition called arthrogryposis. Here, this whole time, many of us thought Mr. Trump was using those exaggerated movements and exaggerated voice to deride Mr. Kovaleski for his disability and, specifically, joint contractures. I am so relieved that it was just Mr. Trump ONLY doing his “standard retard.” What a relief! I, personally, would never use that kind of malicious language toward Mr. Trump or anyone else. But I know Mr. Trump does not hold himself to political correctness so he would not be bothered to know that you, along with many, many other people…many…also see Mr. Trump in that way…because I wouldn’t use that word…but you did.

You were able to confirm that, indeed, Mr. Trump was “waving his arms and sounding stupid.” I would never say that Mr. Trump sounds stupid, especially when he waves his arms. But many, many…many…people say that. I would only say that other people say that. Many.

Again, thank you, Ms. Coulter, for clearing up this matter. I am not going to say that you are a despicable human being. There are many people who would say that about you but I’m not going to say that. I refuse to call you a despicable human being. If I did, that’s not nice. I didn’t say that. And I promised myself I wouldn’t say that.

And if you decide to clear up that you are not a gift to humanity then, by all means, please clear it up the same way you cleared up Mr. Trump “waving his arms and sounding stupid.”


The Mother of a Daughter With Multiple Disabilities Who Is Relieved to Hear That Mr. Trump May Finally Have A Diagnosis, Albeit Offensive and Politically Incorrect. But I Didn’t Say That. Did I?

A Mother’s Lament: Leslie Jones, Donald Trump, and Hate Speech

IMG_2475Last night I posted a sweet video on Facebook. It was of Ashley signing, laughing, communicating, and being her wonderful self. I thought it was touching. And I thought it might allow others to experience just how amazing she is, disabilities and all.

But this afternoon, my better judgment kicked in, and I deleted it.

I had just read today’s article about the dehumanizing hacking of Leslie Jones’s website. And I remember the awful things that were said about her previously on Twitter. She insightfully defended herself when she was the guest, and I was in the audience, of the live taping of Late Night with Seth Meyers: “Hey. Hate speech and freedom of speech: Two different things.”

I’ve also seen similar racist, disgusting, and offensive remarks on Facebook about President Obama, his wife, and their daughters by individuals I am sure would swear they are not racist.

And then I remembered Donald Trump on national television mocking an individual with disabilities. That did it. “Delete.”

The video of Ashley was just the sort of thing that some “troll” could have made fun of. Thanks to Donald Trump, my sense of opportunity and acceptance for Ashley felt tenuous the moment he mocked the New York Times reporter.

No, you wouldn’t understand.

Oh, sure, I am very aware it has happened discreetly behind our backs for years. And I can share painful stories when it has been far from discreet. Dementia will be the only thing that will erase those memories. And Donald Trump’s mockery will take the same to forget.

Indeed, there is something about this time in our history that feels different to me and makes me take pause. In case you missed it in late July, 19 individuals with disabilities were stabbed to death and another 26 were injured in a residential care home in Japan. The murderer told the police, “It is better that disabled people disappear.”

The murderer had previously written:

I envision a world where a person with multiple disabilities can be euthanised, with an agreement from the guardians, when it is difficult for the person to carry out household and social activities.

I believe there is still no answer about the way of life for individuals with multiple disabilities. The disabled can only create misery. I think now is the time to carry out a revolution and to make the inevitable but tough decision for the sake of all mankind. Let Japan take the first big step.

You likely never heard about this mass murder; it barely made the mainstream news. Maybe the media is indifferent to the slaughter of individuals with disabilities? Or maybe violence perpetrated with guns and knives has just become all too familiar.

But there is also an indifference to another kind of violence, a kind of modern-day, insidious “lynching.” Violence of words can be experienced in today’s climate of cyberbullying on social media, or the inflammatory rhetoric that is spewing from some political figures, or exhibited on your “newscast”-du-jour.

For me, the painful takeaway is that society is not ready to accept diversity and differences among us. Not even close. And I choose not to set up my daughter for potential ridicule and mockery without the ability for me to defend her since she is unable to defend herself.

So, if you didn’t see the video before I deleted it, you missed out. Albeit just a snippet, it was adorable. And it might have helped others understand what it is like to be uniquely Ashley.

But these are scary times of violence, hate, and indifference.

And today, I hit “Delete.”

Today, I don’t care if you ever “get it.”

Seeing Life from the Outside In

To travel to Mayo Clinic is to be among the sickest of the sick. Some are only here for their routine medical care or for the peace of mind that they have done all that they can do to maintain good health. Others are here for that elusive diagnosis, or as a last resort for quality or quantity of life. They travel from near and very far, from states across the country, and from countries on the other side of the world.


It is humbling to walk the halls and ride the elevators with people, many in wheelchairs, too sick to support their own weight. The elderly being pushed by their elderly spouses, committed to their vows, “till death do us part.” Children being pushed by their parents, committed to the hope that they will outlive them. And some visiting alone, helped by Mayo volunteers and the kindness of strangers. But, no matter their age or circumstance, individuals are here looking for health but likely leaving with much more.

I’m no stranger to this place. I’ve spent over twenty years traveling to Mayo Clinic, enough so that I can recommend Rochester hotels, coffee shops, and restaurants, or a place to pray. For all these years, it has been as a mother, fighting for our oldest daughter to outlive me. Now into her thirties, I can say without hesitation that Mayo Clinic saved her life. And I can say without hesitation that Mayo Clinic has improved and maintained the quality of her life and of our family. I am deeply grateful. And now, for these last few years, I have come to Mayo Clinic as a patient.

Among the emotions I can see on the faces of patients, I often observe fear and despair. But I can’t help but see and feel hope. And I am always moved as I experience the dignity of the human condition. We will all die; it is just a question of when and from what. But, in the meantime, it is about life, about health, and about others.


I’m not convinced that one can truly comprehend the value of life and health unless one has experienced the suffering or death of a child. There’s a “wrongness” about it, something deeply moving yet troubling that life lessons must be learned at their expense. But what would be “more wrong” and “more troubling” is when those experiences provide no learning at all. Indeed, what a waste of a precious life.

Instead, it is a priceless opportunity to experience life from the “outside looking in” rather than from the “inside looking out.” It is an important lesson of empathy for another rather than only sympathy for oneself.

I don’t wish the need to travel to Mayo Clinic on anyone. But to experience it is to observe life’s lessons: the fragility of life, the importance of health, the value of compassion, the necessity of empathy, the gift of support, and the preciousness of love.

Embracing the Idealist

It’s been just over two weeks since returning home from a writer’s retreat at the Mabel Dodge Luhan Lodge in Taos, New Mexico. What an amazing seven days: powerful women writers with stories to tell, supporting one another in their journey to find their truth. Jennifer Louden’s inspiring leadership. A beautiful setting. And exquisite food that included scrumptuous bacon each morning and a vegetable tofu lasagna that even made tofu taste delicious! (Before Taos, I honestly never imagined “delicious” and “tofu” in the same sentence. Indeed, the Sangre de Cristo Mountains are magical!)

DepositionI came home completely enthused and rejuvenated. I started off my week at home by preparing a batch of gluten free homemade blueberry muffins in honor of our last Taos breakfast, brewed a strong cup of coffee, and settled in for some challenging reading. It was my 3-hour deposition from almost exactly twenty-five years ago to the day that was the result of taking on our school district over rampant segregation and discrimination. The deposition hadn’t seen the light of day in over two decades.

I waded through page after page of the deposition. Multiple times I had to put it down and walk away. Remembering that “thirty-something” idealist, and all the personal sacrifices made, was just too much. The attorney tried his best to give me quite a beating. I hadn’t forgotten. He was an asshole. I was a warrior.

Then I began to feel my week slip away. The reality of all that is required of me in my day-to-day life with Ashley’s 24/7 care took over. A few sleep-disturbed nights made the day following all the more challenging, and I struggled just to get through, much less write.

But I kept writing in my head, even when I didn’t feel strong enough, or focused enough, to commit my words to a text document. I began to recognize a potential structure in my approach. And I was reminded of the concept of “conditions of enoughness” that was so eloquently explained, and a point that was driven home, by Jen during the retreat. All those strong, wonderful women begin to identify their “conditions of enoughness.” Now it was my turn to define mine, not just at a retreat but in the context of the complexities of my life.

Two weeks later, I made it through to the end of the deposition. Dozens of colored tabs cover the one hundred and twenty pages. And I’m now ready to dig out the Letter of Findings from the federal investigation that has also not seen the light of day in decades.

Today, I believe I can begin to share my truth. I can be hopeful. I can recognize the “thirty-something” idealist that still resides within me. I can start a new week. For now, that’s enough.

World Down Syndrome Day: It’s Complicated

73790_654435883269_2378773_nMarch 21st is World Down Syndrome Day, 3/21 representing 3 copies of the 21st chromosome. For me, I have complicated emotions. Sure, Ashley has the physical facial features that identify her as having Down syndrome. But with her additional disabilities related to her brain injury, she has so much more to deal with. And there’s no World Hypoxia Following Open Heart Surgery Cuz It’s Difficult Day so we’ll go with today’s designation.

But to generalize any of our children related to one particular talent or disability is for me missing the point. Each of our children are woven into these amazing individuals, much of it related to the miracle of “genes.” And for each thread I am thankful because every strand of DNA makes each of us special. For Ashley, beneath all the medical complications, maybe there is a woman with “just Down syndrome?” We’ll never know. But that still wouldn’t define her any more than her brain injury does. She’s Ashley, she’s awesome, and we love her dearly. And the lessons she teaches us are invaluable. We all just have to be willing to learn and to support one another for our “sameness,” but more importantly for our differences. I think that’s what today is all about.

Duh. It’s a Civil Right!

Last night, I saw a Facebook post to the group of our local Down syndrome association. The post was “Interesting study!” with a link to an article out of the University of Kansas, one of the preeminent special education programs in the country. The article is titled, “It’s time to end segregation of special education students, professors say…” and discusses recently published research titled “Stars in Alignment,” in the journal of Research and Practice for Persons with Severe Disabilities (a publication of TASH).

Lovely thought, wouldn’t you say? Except Dr. Wayne Sailor, one of the professors at the University of Kansas who co-authored this research, published this same idea “to end segregation of special education students” in the book The Comprehensive Local School: Regular Education for All Students with Disabilities (Paul H. Brookes Publishing, 1989) when he was at San Francisco State University. That’s over a quarter of a century ago! The reason I recognized it? Because that book was my “Bible” of sorts that inspired me to spend a large part of my adult life fighting public education (and prevailing) over segregation and discrimination of special education students.

In the foreword of his book published in 1989, Madeleine C. Will, former Assistant Secretary for the Office of Special Education and Rehabilitative Services (OSERS) of the United States Department of Education, well-known national advocate, and parent of a son with Down syndrome, writes:

The provision of the law calling for maximum integration is based on a recognition that separating children with disabilities from their peers, when not required for educational reasons, can impair the quality of the education they receive. Segregation often leads to the isolation of children with special needs. It can limit their opportunities for social interaction and make it more difficult for them to develop appropriate interpersonal skills. The lack of such skills creates obstacles to proper adjustment. Without the experience of living and working in community settings, it becomes more difficult for students with disabilities to live and work in the “real world” after they leave school. In addition, separate placements can stigmatize children with special needs. A sense of being different may cause a child to develop a negative self-image which can prove to be a greater obstacle to living a fulfilling life than any disability or learning problem…

 …The Comprehensive Local School: Regular Education for All Students with Disabilities is part of the continuing effort to develop models that will make it possible for all children with disabilities to be educated in regular educational settings.

That we are still discussing this concept of “inclusion” as if it were novel is disturbing and disheartening. And that the United States Department of Education continues to fund redundant research and programs, such as Sailor’s Schoolwide Integrated Framework for Transformation (SWIFT) to the tune of $24.5 million, the “largest grant in KU’s history,” for concepts that have been long-since proven to be educationally beneficial yet not implemented, has got to stop.

Once the 19th Amendment passed, I don’t recall over 25 years later hearing about women showing up at the polls only to be refused a ballot. And I don’t recall over 25 years after the passage of the Civil Rights Act hearing about signs mysteriously reappearing above water fountains for “White” and “Colored.”

So, who is to blame? The United States Department of Education and their Office for Civil Rights, first and foremost! No matter how you slice it or dice it, segregation and discrimination in special education is a civil rights issue. And, until we see it as such, there will be no concerted effort to end segregation and discrimination for individuals with disabilities so that they, and their families, can move forward permanently. We cannot champion this cause as fractionated groups related to a specific disability, be it autism, Down syndrome, cerebral palsy, hearing impaired, visually impaired, learning disabled. Until we see ourselves as ONE community, speaking for ONE civil right – the right to be counted, the right to be included – nothing will change.