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.

Global Warming: A “Sort of” Tongue-In-Cheek Guide to Keeping One’s Mouth Shut

If you can’t even name and draw the configuration of the simple gases that come out of your own body, and explain how they are formed, then you are NOT qualified to argue the legitimacy of global warming. If the word “fart” is all that comes to mind then you don’t have a place in the conversation.

If you think photosynthesis refers to a digital photo printing process, step out of the debate.

If you have no concept of geologic time and believe the Jurassic Period is a reference to Steven Spielberg’s now defunct amusement park in Tennessee…oh, wait, that’s Dollywood, and it’s still open. Anyway, you get my point. Do us all a favor and push back from the table of the global warming discussion.

If you think “mean” and “mode” contribute to road rage emotions, and “median” only refers to where you might end up when the nut case runs you off the road, then you know nothing about statistics. Find another smorgasbord to fill your opinionated plate while standing on your shaky soapbox.

I’m smart enough to leave my car’s engine to a qualified mechanic. Don’t leave the enormously important issue of global warming to people like an 81-year-old career politician from Oklahoma who was a so-so businessman and is now the chair of the United States Senate Committee on Environment and Public Works. He has a Bachelor of ARTS and refers to global warming as a “hoax.” Does “fart” come to mind again, preceded by “old?” He shouldn’t have a place at the table either.

Or a presidential candidate who believes global warming is “bullshit,” “created by and for the Chinese in order to make U.S. manufacturing non-competitive.” He is probably single-handedly responsible for the hole in the ozone layer from CFCs in hairspray can propellants. And he is likely unfamiliar with the difference between chlorofluorocarbons and “cash for clunkers,” otherwise known as Trump University.

We don’t have to be as smart as rocket scientists to leave the argument of global warming to folks as smart as rocket scientists. Good news: There are environmental “rocket scientists!” And if they haven’t been funded, or paid off, by a “Monsanto-esque” company, we might all benefit from listening to their wisdom.

Humor aside, science is real, people! Leave it to the chorus of environmentalists who are saying global warming is here, rather than the ensemble of politicians who make it a habit of singing that same old song that is apparently all you want to hear.

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.