Shana Rush, PhD, CCC-SLP, HERO

I have a problem. How am I ever going to work, “Did you hear that Shana saved a kid’s life?” into casual conversation? It’s my unbiased professional opinion that my wife is the best pediatric neuropsychologist who’s ever lived. She’s hands-down the best I’ve ever even heard of. I’ve lost track of how many times she’s changed someone’s life by diagnosing and treating a cognitive, behavioral, developmental, linguistic, or even neurological disorder, but that’s what she does for a living. Also, since I’m in a related field and we share an office I don’t really find it very hard to say things like: “Which of her books is your favorite?” Once or twice I’ve even had the opportunity to say: “Did you know that Shana created the LANSE [the leading standardized brief measure of pediatric brain injured patients’ cognitive functioning] for her dissertation?”

This, however, could be tricky.

Human beings are complex. Health problems and stressors are cumulative. It is therefore critical for every member of the team to take personal responsibility for identifying and addressing every problem. If it’s not something that they can address themselves then they have to follow through on an appropriate referral. Not just a cursory “I’d get that checked…” comment; you must refer to the appropriate specialist, call the primary care physician, and follow through.

Shana does that every single time. This time she saved a life.

She evaluated a 17-year-old boy for an academic problem. Of course, as always, she sorted that problem out. While she was at it, she noticed subtle features of a genetic disorder. I can’t share the details because it’s rather rare and doing so would therefore identify the patient. However, the point is that she was suspicious of a diagnosis which is treatable but if untreated is usually suddenly fatal in one’s early thirties.

Seriously, these people can be minding their own business, going about their early-thirties lives—wife, kids, career, not yet gotten around to buying life insurance—and drop dead.

While remaining vague for HIPAA purposes, I must further say that this genetic disorder doesn’t have any cognitive, behavioral, or even neurological features. It isn’t by the remotest stretch of the imagination in her specialty.

Did you catch the part about this kid being seventeen? He was within months of adulthood. She nonetheless had the audacity—a neuropsychologist, not a physician—to suggest that he might have a completely coincidental and fatal genetic disorder which has been missed his entire life.

Long story short, she made an appropriate referral, the diagnosis was confirmed, and he’s being appropriately monitored. Odds are that he’ll live until his mid-seventies. She gave him over forty years of life.

Hey, did I ever tell you about my wife saving a boy’s life? And which of her books is your favorite?


Exercise vs Catastrophization

The largest single predictor of poor results from chronic pain management is catastrophization. Catastrophizing is technically defined as “an exaggerated negative mental set brought to bear during actual or anticipated painful experience” (Sullivan et al., 2001). I don’t personally find that phrasing especially helpful. I prefer to describe catastrophizing as a belief that pain, or even non-painful sensations such as cracking and popping of joints, is harmful.

The fact is, I can’t think of a single situation where noises from joints are indicative of ongoing harm. If you think you can then please call my office and make an appointment.

Pain isn’t harmful. Pain is a sensation. Technically speaking, in my business we refer to the sensation as nociception and to the entire experience as pain. That’s important because our beliefs and attitudes about our pain have a dramatic effect upon the experience. For example, thirty years ago I tore both menisci of both knees. Occasionally one of them will swell up and I have to inject some steroids. Of course it hurts when the needle goes through my skin, but two things keep it from being really unpleasant. First, I know exactly what the anatomy is and that the needle isn’t going to hit anything vital. Second, I expect that a couple days later my knee will feel much better.

In an unfortunately hopeless effort to avoid pain many people avoid exercise. I don’t expect someone in pain to be as athletic as they were before, but if they don’t at least do what they’re capable of then they become deconditioned and stiff in addition to being in pain. The fact is that the best thing to do is get moving despite the pain. If done consistently it almost always decreases pain and improves both physical and mental health.

I frequently recommend yoga, tai chi, HIIT, and Scott Sonnon’s videos. I’m also a fan of Pavel Tsatsouline, Bill Pearl, and Mark Rippetoe, all of whom have written extraordinary books about weight training which are inclusive of any level of fitness (or lack thereof). Low impact exercises like walking, biking, or swimming are also good.

My latest favorite exercise program is DDP Yoga. Diamond Dallas Page, you may recall, was a professional wrestler in the 90s. He was in chronic pain from numerous injuries and rehabilitated by combining yoga with dynamic tension. He’s a colorful and charismatic man who does a great job leading the videos.

His program is geared toward people with injuries or health struggles. He strongly emphasizes scaling the movements to our own ability and constantly assures us that if we keep doing what we can then soon we’ll be able to do more. DDPY 1.0: Rebuild is meant for people who struggle to stand up from the floor independently. It starts with entire exercise videos done from bed or couch level, then progresses to chair level, then to standing while using the chair for support.

My wife and I have done seven DDP Yoga workouts so far and every time we’ve had to scale just a little less than the time before. We’re doing the main program, DDPY 2.0, most recently a workout called Energy. I really like it that in addition to DDP himself there are four other people exercising with him on stage. Two of them, yoga professionals, demonstrate how to scale the exercises. The other two are normal human beings; both were morbidly obese and one walked with crutches before starting DDPY. They demonstrate how to do the exercises without scaling.

There’s also DDPY 3.0: Extreme, which is targeted toward competitive athletes.

There are several workouts available in a free trial, including the first two of DDPY 1.0: Rebuild. There’s also a free kids program. I recommend you check it out at

Pretty amazing 23-minute phone call

“Hi, this is Dr Rush calling to check on Mary Ann*. I got your message and I spoke to her hospice nurse yesterday. It sounds like she’s in good hands. Dr Smith and his team are excellent. If there’s anything I can do, please call. My cell is 616.780.2324.”

Mrs Jones had left me a message: “Mary Ann is in hospice, doesn’t have much longer, has been on full hospice since March, wanted you to know what an incredible part of her journey you have been.”

That was so courageous and generous of her. It was unexpected, but I shouldn’t have expected anything less.

When I first met Mary Ann, I was wearing a gown, gloves, and a face mask with eye shield. She was in isolation because, like many people who spend a lot of time in hospitals, she’s colonized with antibiotic-resistant bacteria. In acute care hospitals, the policy is that every such patient goes into isolation. Even if they’re not necessarily putting their bacteria on other people, like if it’s in their stool and they’re continent, they nonetheless go in isolation. Every person she’d seen for weeks had been wearing the same getup. No wonder she became psychotic and needed Risperdal.

Mary Ann spent a great deal of time in hospitals. She was born with mild cerebral palsy and mild cognitive impairment. And severe dysfunction of her digestive tract. Parenteral nutrition is what we call the complicated IV fluids with protein and fats and vitamins that keeps people like Mary Ann alive. Unfortunately, your body really wasn’t made to absorb nutrition that way, and eventually it causes liver damage.

She was transferred to my service. The statistics on transmitting infections are different in rehabilitation hospitals, probably because the patients aren’t quite as sick and tend to have longer stays than acute care hospitals, so we didn’t have to wear hazmat suits and she could come out of her room. She got PT, OT, speech therapy, recreational therapy, psychology, and to see other kids. She no longer needed Risperdal.

We eventually got her up and walking and home with her parents and brothers and sisters. The chart says that I saw her several dozen times over the next six years. Her parents still took her to a lot of specialists who tried to cure her condition, but we put a larger emphasis on quality of life.

Her parents got her up and in cute outfits and out the door to school with her medical supplies in a backpack even though they knew she’d never graduate; to be happy she needed life with other children and school is simply where the other children are. A comprehensive neuropsychological evaluation found that she had some relative cognitive strengths. Working with the school they got her a good plan for some mainstreaming, some special education, realistic expectations, and avoided Mary Ann being unnecessarily stressed that academically she wouldn’t be able to keep up with her friends.

They didn’t just make good decisions. They didn’t just follow through on those decisions. They’ve kept doing it every single day for years without giving in to grief or losing hope.

Excerpts from Mary Ann’s last visit to my office:

Her parents have been working very hard to keep her healthy. She needs 12 hours of nursing every night; they only get 8. Her mom winds up getting 5 hours of sleep 5 days a week and then doing her care the other couple of nights. Mom expresses some concern that, with her fatigue, she might someday make a medical mistake. Mary Ann is on 28 medications.

Mary Ann’s affect is bright. She is the happiest I think I have ever seen her.

I strongly suggested to Mrs. Jones that she and her husband ask their counselor how they can give themselves permission to take credit for how well Mary Ann is doing as the result of all their hard work.

The message I didn’t leave on Mrs Jones’ voicemail, but which was going through my head, was: “I’m looking at a picture of my daughters. One of them is the same age as yours, and the thought of one of them suffering is crushing my chest.” Of course, I couldn’t say that. This isn’t about me.

She called me back. We talked about her heartbreak and her many fears. Fears that Mary Ann might suffer more, and that she can’t accept losing her, and that she’s being selfish because she thinks it’s about time to withdraw all care but she’s not ready to let go. About how much easier this would be if it were her dying and not her daughter.

We talked about another of my patients who passed away in hospice a couple of years ago. That little girl also had severe disabilities and her mother knew all along that she wouldn’t have a long life. Afterward, she apparently decided that the purpose of her life is to love and adopt severely disabled children. She chose to create a larger purpose, even a larger future, from her daughter’s short life.

I pointed out that it’s not all about Mary Ann. And it’s not all about her parents. It’s about Mary Ann’s brothers and sisters, and demonstrating to them that afflictions may be borne with grace. Her parents have been demonstrating this particular life lesson for 12 years. Soon they’ll have to demonstrate how one accepts the death of a loved one. That’s what this is about.

We laughed. We cried. Pretty amazing 23-minute phone call.

Mrs Jones thanked me for making Mary Ann’s life better. I told her that she was welcome and that it had been a pleasure. Working with kids with complex disabilities is never easy, but her parents’ consistency and the sweet personality of a child who’s obviously been treasured made it easier.

I sometimes feel overwhelmed by what seems like an unending stream of disabled and injured children, most of whom I can never actually cure. I know this. I still wish that I could.

I had hoped that Mary Ann’s parents could permit themselves to take credit for how well Mary Ann had done. Now her mother has returned the favor, given me permission to take credit for how well Mary Ann has done as the result of all my hard work.

And it is about me.

“Human life begins on the far side of despair.” Jean-Paul Sartre, The Flies (1943)

Addendum: This happened a few years ago. The little girl died not long thereafter. I went to her viewing; the hospice team did an amazing job of giving her entire family as much closure and release as possible.

* All names and numbers changed. I nonetheless obtained permission before publishing. Her mom said: “By all means, you may certainly publish it. Thank you for writing it, sharing it, and cracking the door on what people endure. And NEVER forget that were and continue to be a valuable and important part of [Mary Ann’s] journey!  Thank you for the unending care of all of us.”


Not too long ago, I had an interesting experience. I can’t tell you exactly how long ago because then you might figure out exactly which patient I’m talking about. The entire concept of rigid anonymity is flawed; sometimes the community has a greater right to knowledge and understanding than the individual has to privacy, and if I’m not qualified to determine that then who is? However, I digress, and the point is moot, since these events were so vivid that I’ll never forget them, so you’ll never know for sure to which of many abused children I refer.

I had a patient (a child, of course) on my service rehabilitating from his injuries (that’s what I do, I supervise the repair of broken children). I have a pretty good imagination, I even thought at one time that I’d write fiction professionally and applied to the University of Iowa Writer’s Workshop—you know, the one that produced Kurt Vonnegut—but I didn’t get in. Apparently they were no longer interested in science fiction, because the sci-fi short story I submitted totally rocked. So, anyway, I don’t have any difficulty visualizing what probably happened to this child. If you don’t have my imagination: You’re blessed. But, again, I digress.

Anyway, this child had obviously been beaten within an inch of his life, on numerous occasions, and then been left in a closet to die.

In case you’re hoping to hear that his family loved him and somehow or other a depraved stranger had gotten their hand on this child… I’m terribly sorry. That sort of thing more often happens in fiction.

Somehow or other he was rescued, and hospitalized, and came to me. He demonstrated the usual pediatric resilience. By the time I met him the whip marks were almost healed.

Nice child. Desperate for attention and approval and he stashed food in his room, but nice child.

However, his toes were falling off. They were dry and dead and had no possibility of healing. Their only remaining purpose was to serve as a sterile dressing while underneath his tissue healed. It’s called dry gangrene.

His caseworker was horrified the first time that, leaving just a shiny pink nub, he shed a toe. I explained about the whole sterile dressing thing, and she was okay. Well, okay-ish. Then he shed another one. She asked me to explain exactly why it was that his toes were dead in the first place. Why didn’t the whole foot die?

Well, if you know anything about vascular anatomy, you know that most parts of your body have redundant circulation. If the blood flow to a particular spot on your skin or muscle or even your heart or brain is cut off then there’s usually enough flow from neighboring blood vessels to make do—we call it “collateral circulation”. But that’s not true for your pointy bits, the pieces of you that stick out: the tip of your nose, earlobes, fingertips, your penis or clitoris or whatever you call your happy part. And your toes. The rest of your foot, however, has collateral circulation from several different vessels.

This very nice woman was obviously the sort of optimist who believed that the world can be a better place, that all bad things come from misunderstandings or perhaps psychiatric or substance-abuse disorders, at the very least merely from poverty. I explained to her that from the pictures I’d seen and records I’d read that someone had deliberately beaten the soles of this child’s feet. Probably with a belt. Maybe a hanger or an extension cord or whatever else was handy when they surrendered to the psychopathic urge to share their personal pain with the rest of the world and their cowardice kept them from sharing it with a part of the world that might fight back. I explained that his feet had swollen up, basically applying a tourniquet to each of his toes, while the blood supply to his feet per sé remained intact. So his toes died but his feet lived.

In this conversation, I watched her emotions shift from desperate hope there was some rational explanation as to what was wrong with his toes to desperate hope it was a horrible accident. Then she comprehended that it’d been done deliberately and that, while his family probably hadn’t known in granular detail just what was going to happen when they beat his feet and left him in a closet to die, no one could plausibly imagine this to be less than deliberate.

We haven’t spoken since, but I believe that in that moment she realized that evil is real.

The child went to a foster care family. I don’t usually pay much attention to adults and can’t tell you more than that they seemed nice. I’m sure that, all things considered, that child will be fine.

The caseworker? I’d like to think that this experience changed her from a naïve do-gooder into a fierce and pragmatic warrior against evil. If she didn’t have the strength to be a warrior I hope that she found some other way to make the world a better place. I really hope that she wasn’t the kind of person who gives up and stops trying.

If she did find herself to have the strength to become a warrior then perhaps someday she’ll need an expert medical opinion. Or a sidekick. Or an alibi.

I’ll be here.

I Love the Future

Specifically, I love practicing medicine in the future. I frequently use genetic testing to guide pharmacotherapy (that’s “medication selection” to you). It helps me minimize the risk of side effects and maximize the chance of efficacy. Not perfect, but it improves the odds. Beats trial and error.

Strep and mumps and H flu and measles and chicken pox and polio killed, disabled, or just made miserable so many millions of kids. They crowded pediatric units across the country. Now they’re unusual infections; residents and medical students are called in to see something they might not see again for years.

Every day children are born extremely premature, unable to breathe or suck or regulate their temperature or digest milk, and after some time in a neonatal ICU they eventually have normal lives. Every day kids drown and don’t breathe for 15 minutes and go on to normal lives.

Even the ones who don’t get full recovery often have full and productive lives. I personally know doctors, nurses, and therapists with cerebral palsy, spinal cord injuries, polio, amputations, strokes, seizures, and Parkinson’s who every day make other people’s lives better. I have several patients or former patients with spinal cord injuries, cerebral palsy, and brain injuries who are good parents. One’s a social worker. Several are in college right now working toward medical school.

Some don’t recover. I like thinking about the boy who drowned for 15 minutes and walked out of the hospital. I haven’t seen him in years; he doesn’t need me. Another boy who survived the same thing barely blinks. I see him all the time; keeping him loose and comfortable has been challenging. While over half of children born extremely premature (less than 27 weeks gestation, as opposed to the usual 37-42) are typically abled, many aren’t. Some are neurologically devastated.

I have numerous patients for whom I’m just providing comfort care. I’m talking about severely disabled children; only half of all neurologically devastated four-year-old children see their eighteenth birthday. I can’t make them functional in any way. The best I can do is keep them easy to care for, try to optimize their medical management, minimize the risk of complications.

One of them was in the office today. He makes eye contact and he smiles. His sisters like to play with him. One of them was tickling his face with her hair today and he loved it. His father and mother are proud of him. I think perhaps that they see his beauty.

What is the meaning of his life? I’ll tell you.

He is here to remind us of all the millions of children we’ve been able to save. We need to be reminded of them. They’re invisible. It’s not like they carry around signs saying, “I’m a typically developing child who survived extreme prematurity.” Or drowning. Or a stroke. Or who wasn’t killed or disabled by some vicious infectious disease for which we now have a vaccine.

One of my patients died this week. She wasn’t severely disabled, only mildly, but she had an incurable medical condition. She went to school, she hung out with other kids, she carried her own medical supplies around in a cute backpack. She was happy and she was loved. She was twelve.

Her life meant something, too. The universe has been here almost 14 billion years, our species only 200,000. The oldest person ever just 122. What does it matter whether we live twelve years or one hundred and twelve?

Her life meant that we are winning this war. We’ve saved many lives. We’ve made many lives better.

I love 2017.

Ankle Braces and Robin Hood Shoes

There are several kinds of developmental disabilities: gross motor, fine motor, social, communication, and intellectual. In my opinion that list is in ascending order of importance. Nonetheless, we often tend to focus on gross motor, probably because it’s easy to quantify. Everybody notices if their kid doesn’t walk on time.

The first criterion for a good gait pattern is a stable base of support, so we write for a lot of orthotics.

Orthotics are named based on the joints they cross. There’s lots of different designs in order to solve different biomechanical problems, but the idea is always to provide as much stability as necessary without over-restricting range of motion or being too heavy. This is an AFO, or ankle-foot orthotic.

All the orthotics on this page are made by Cascade, the largest-selling brand. By the way, the purpose of this post isn’t to bash Cascade at all, they do solid work. I’m especially a fan of their UCBLs.

This is a SMO, or supra-malleolar orthosis. The malleoli are the bumps on the sides of your ankles, so a SMO comes up just a little higher than that. The idea is to stabilize the foot and ankle without restricting ankle range of motion.

And this is a UCBL. The nomenclature is unconventional, it stands for University of California Biomechicanics Laboratory, where it was invented. Notice that it’s more than just the gel inserts I put in my hiking boots, it cups and It controls the hind- and mid-foot.

The idea of the SMO is to give some ankle control without being as restrictive as an AFO. In order to control a joint there has to be pressure on the skin on both sides of the joint. Roughly speaking, the height of an AFO above the center of the ankle joint is 10x more than that of the SMO, so it has 10x the leverage. Furthermore, the AFO has about 10x the area of surface contact on the skin above the ankle joint. Therefore, in order for the SMO to control the ankle joint as well as an AFO there has to be 100x as much pressure per square inch of skin. That, of course, leads to skin breakdown, so the orthotist has to flare out the top of the SMO. Cascade’s are pre-flared. Might as well be, if otherwise they’re going to erode your kid’s ankle.

Once you flare out the top of the SMO the area of skin contact isn’t really any different from that of a UCBL, except for that part on the top of the mid-foot.

So, AFOs are good for kids with ankle muscles so weak that they’d otherwise collapse (e.g. spina bifida), and also for kids with too much tone so they’d be up on their toes (e.g. cerebral palsy).

UCBLs are good for kids with floppy feet (e.g. Trisomy 21 or Down Syndrome, Ehlers-Danlos, Marfan, lots of others).

It happens that there aren’t many situations where you just need to stabilize the mid- and hind-foot, including the top and not just the bottom, and not the ankle. While I see kids wearing these things all the time I only write for them once or twice a year.

To my knowledge, no one has every published a study wherein they demonstrated the superiority of a SMO versus either a UCBL for foot issues or an AFO for ankle issues. They’ve only been demonstrated to be superior to nothing at all.

So why do so many doctors write prescriptions for them? What are the flared tops good for, a fashion statement?

These are Robin Hood shoes. Not made by Cascade. In case you’re looking to spice up your wardrobe they’re sold on Amazon by Red Star Fancy Dress.

How to Succeed in Psychotherapy

A lot of my patients need psychotherapy. Kids with disabilities—whether congenital or acquired, static or progressive—struggle with accepting their limitations. Kids with chronic pain, even if they aren’t depressed, panicked, or catastrophizing, need to learn coping strategies. A lot of the kids with chronic pain have survived sexual abuse (what does it say about our society that we need a comfortable euphemism which diminishes the reality of the rape of children?) and perceive their post-traumatic stress in terms of physical pain. Families need to repair broken relationships. Parents need to stop blaming themselves for something that wasn’t their fault.

Sometimes they need to stop blaming themselves for something that actually was their fault. I once had a patient with a spinal cord injury (well, a great deal more than once). Like 80% of all people with vertebral fractures he was neurologically intact after his accident. When his dad helped him get up and into the car to go the hospital his unstable fractures sheared through his spinal cord. His injury was complete and permanent. I was impressed that his dad had the courage to ask me whether his son’s paralysis was his fault. Hopefully he finds peace with that. I’ve seen people get through worse.

It is unusual for someone to initially agree to get psychotherapy. They protest that “it doesn’t work” or say that talking about their problems would make them uncomfortable. Often they’ve been to therapy before but it turns out that they, consciously or not, sabotaged the process.

Of course it’s not pleasant. The whole point of therapy is to address and resolve issues they’ve been avoiding. It’s yanking off a Band-Aid, it’s lancing an abscess, it’s obviously the right thing to do but so painful they can’t do it themselves. And only a narcissist would want to reveal their most hidden thoughts.

Modern psychotherapy isn’t like what you see on television. Someone pouring out their soul on a couch while some guy in a tweed coat takes notes makes for good drama: “So, tell me about your relationship with your mother… ” But your therapist doesn’t need to know every single little detail of your life to help you. I’m sorry to disillusion you, but human beings really aren’t as unique as they like to think they are. The same patterns of experiences and behaviors happen over and over and over again.

Modern psychotherapy is usually some variation on cognitive behavioral therapy (CBT). It’s exactly what it sounds like. In CBT the therapist and the patient think about things the patient can do differently so that they are cured. If the patient can’t do the things that they need to then together they break it down into smaller steps, identify barriers, problem solve, and so on.

For the process to begin, first the patient has to believe that the therapist is competent (please assume for the purposes of argument that the therapist actually is competent). Second, the patient has to trust them. Fearing that your personal secrets will wind up on Twitter doesn’t encourage candor. Third, there has to be a reasonable degree of match of personality and communication styles. For lack of a better term, they have to “click”. Note that I didn’t say the patient has to especially like their therapist. Paying someone a couple hundred dollars to be your friend for an hour is an entirely different… proposition.

Next the patient needs to define their objective outcome goals. “Feel better” is too vague. “Go to school fulltime” is a good long-term goal for a pain patient. “Not think about my kid’s illness” is unrealistic, but “Don’t cry at doctor’s appointments” is doable.

Often, of course, the patient doesn’t know their goals. In that case the very first goal is to identify some realistic and objective goals.

Once goals are established then together they’ll identify some target behaviors. These are “specific, measurable, and reproducible”* actions which are likely to help. There might be quite a few. Early steps for a chronic pain patient would involve resuming some basic structure in their life: getting out of bed, taking a shower, taking medications, eating regular meals, doing homework, going to bed, all on a schedule. Later there’d be physical therapy, meditation, an exercise routine, going back to school, and so forth.

Of course the patient’s going to perceive all kinds of barriers to these behaviors. If they didn’t have barriers then they’d already be doing these things on their own. So barriers are identified, broken down into smaller barriers, and the patient goes home with some homework, some strategies to try out to overcome their barriers.

The final ingredient is accountability. When the patient follows up the therapist has to hold them accountable, has to ask them what happened when they tried their strategies. If they worked then great, move on to the next issue. If not, figure out why not, break down the barriers into even smaller ones and identify some new strategies. Go forth and repeat.

Is the process pleasant? Of course not. But it works. So don’t tell me, “Therapy doesn’t work.” What you’re really saying is, “I’m scared.” That’s okay. Aren’t we all?


* Influencer, The Power to Change Anything, Kerry et al, 2008.


I generally hate running into people that I know from real life at work. I can’t help it, of course, as Grand Rapids isn’t a very large place. But nobody who doesn’t work there ever wants to go to a pediatric hospital. A few years ago I learned that my daughter’s former kindergarten teacher’s son had an inoperable brain tumor when I ran into her in the elevator at DeVos (Helen DeVos Children’s Hospital).

I also dislike running into people from work in real life. I have a narrowly defined but often very intense relationship with my patients and their families. It’s not easy to see someone in some other context and pretend you don’t know way too much about them.

Today was an exception.

My daughter Belle is in competitive dance. For the uninitiated, it’s sort of a cross between beauty pageants and travel hockey. She had a competition this morning. I had to get up at 4:45 because her first dance was at 7:13. Let’s just say that I was even less in the mood for overstimulation than usual (I’ve been to the American Girl™ store, with packs of prepubescent girls running amok—this is fairly similar, but with loud music and garish makeup).

Dancers get a lot of injuries and their culture is “the show must go on”. Instead of being sensibly helped off the field and immediately evaluated like a concussed football player, dancers will just keep dancing despite sprains and strains. Then they’ll keep on going for months, until they are completely unable to function, before they get help.

As soon as I sat down to suffer through the first of about 60 routines, I found some woman waving at me from a few rows away. Then she came and sat next to me. I’m in pediatrics, I think adults are kind of boring and thus easily forgotten, so I knew she was a patient’s mother but didn’t know whose until she finally pointed out her daughter, Susan (not her real name).

Susan has a very common genetic disorder of connective tissue called Ehlers-Danlos syndrome type 3. It generally just makes people very flexible, they don’t even know that there’s something wrong with them until they hyperextend or dislocate joints. They also tend not to heal up quite as well from injuries as the rest of us do. So, ironically, their flexibility probably helps make them good dancers, but then they develop lots of scar tissue and chronic pain.

Susan had been really easy to work with. Athletes are, once you get past their pathologic overconfidence. In just a few months she went from miserable to sunny, mostly through physical therapy and persuading her to avoid moves that caused her to hyperextend her elbows and knees.

I think that this was just her second competition since she was able to return to dance. Her mom thanked me, told me that they wouldn’t be there if it weren’t for me, and I learned that Susan’s already gotten an apartment and a summer job after graduation, then she goes to college in the fall. This final season must be very special for her. I watched her dance and she was very good. She complimented Belle and gave me a hug.

Susan’s group placed first in their division. She cried.

Belle had two routines, one ballet and one jazz. She got a first and a second.

I got validation and a sense of gratitude.


Every parent wants their child, and their child’s life, to be perfect. We also want to be perfect parents, and we judge ourselves on the basis of our children’s success. Sometimes that can be unhealthy—pageant moms, helicopter parents—and sometimes that drive to make things better is a good thing.

I met a little girl this week whose parents have not had a good experience with the healthcare system. Not misdiagnosis or the wrong medications or anything like that, there just doesn’t seem to have been consistent communication and follow-through. It could have been a lot better. But they’re still trying, engaging and communicating, not giving up or getting toxic (not the best way to get good service in any industry). They’re starting to succeed and I think that things will get better.

I saw another little girl in follow-up this week. She has cerebral palsy. The greatest predictors of independence as an adult are communication skills and education. She’s sweet, polite, and on the right track in school (she’s also very pretty, which can’t hurt), but her mom still wants her to walk and run just like other kids. She’s spent years in physical therapy, then she had a selective dorsal rhizotomy so she no longer has problems with spasticity in her lower limbs (that’s what physiatrists call legs, what we call legs are what you call the thing between your knee and ankle), then she had more world class (if I say so myself) rehabilitation thereafter. But, she still has weakness and incoordination in her ankles. That’s not fixable. She walks, albeit slowly, she runs in a somewhat discombobulated sort of way. But I can’t make it any better than I already have. And neither can her mother.

I attempted to reassure her mother that she’s done everything humanly possible. That because of her persistence and consistency (when one of my kids is sick I have a hard time giving them medication three times a day for a week, and she’s stretched that kid every day for years, taken her to physical therapy twice a week for years) her little girl walks, and will be able to keep walking, for the rest of her life. I tried to tell her that she should be extremely proud of herself, that she should see herself as a hero.

I hope I succeeded.