Good Night Lights!

There has been a growing movement to bring cheer to sick kids at hospitals.  Not just during the Christmas season, but all year round.

It’s called Good Night Lights.

Picture this.  At 8:30 every night, the city stops and blinks its lights for a minute to say goodnight to the sick kids in childrens’ hospitals. The kids are given flash lights to blink back.  Restaurants and boats participate.  Skyscrapers and police cruisers.  They all blink their lights for a minute to say goodnight.

A few months ago I shared with you the story of the University of Iowa Hawkeyes, how between the 1st and second quarter of their football game, the fans all stand and turn around and wave to the kids in the UI Children’s Hospital.  It’s amazing.  You would think a small thing like that wouldn’t be such a big deal, but the kids LOVE IT.  Their parents LOVE it. Even the staff LOVES it.  Why you may ask?  Hospitals aren’t great places for kids.  They are there because they are sick and sore.  There is very little to look forward to.  This is something special.

That’s just during football season, though.  How many games?  Eight?

Imagine having one thing to look forward to every night, a way to cap off the day and welcome the evening?  And it’s super easy.

I first heard about Providence, Rhode Island, and their Good Night Lights Program on the radio, and I looked it up. Boats and hotels and even restaurants blink their lights to the kids that are sick at the Hasbro Children’s Hospital. You can read about it here.

It has become so popular that it has spread to Orlando, where the city blinks its lights to the Arnold Palmer Children’s hospital.  You can read about that too, right here.

It’s also a thing at Beaumont Children’s Hospital in Detroit.

I want to do this for Boston!

But Boston has specific problems that need to be overcome.  It has a number of childrens’ hospitals.  There’s Tuft’s Floating Hospital.  There’s Mass General Hospital for Children and there’s Boston Children’s Hospital.

pediatric hospitals boston map

How do we triangulate efforts to make this work?

How spectacular would this be if we COULD make this work?

Let’s brainstorm this.

Please leave me a message if you have ideas!

 

 

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Last Minute Wishes

Sometimes the season gets us down. There’s a lot of expectations to make the holidays picture perfect, and a lot of times we just can’t live up to all of that, any of us.  And as the end of the year winds down, it’s nice to take stock of the year, see what our successes are, and where we were found wanting.

Brave Fragile Warriors did not have as many posts as last year, my attention was divided and I just didn’t write as much. The first year, I was determined to write once a week, but I realized not many people want to read a once-a-week-post, so I wrote instead when the spirit moved me.  Hopefully that means that my posts were richer and more meaningful.  Hey, a girl can hope, right?  When I look at the analytics, it was viewed in 70 countries around the world.  That’s pretty cool.    I was also contacted to reprint my posts in Today’s Kids In Motion, and The World Transplant Games asked if they could put my blog post in their newsletter (note:  the link is to a PDF).  Probably the biggest part was that one of the blog posts is now in the chapter of a book, The Power of Moments, by the Heath Brothers.  These are huge honors and I feel really lucky that these stories are getting out there.

I did a lot more public speaking this year than I ever expected to (outside of my classroom, of course.)  Topics ranged from the importance of telling your story, to helping to minimize anxiety in an Emergency Room Setting, to creating partnerships within the hospital between patients and providers, and what it looks like to be the parent of a sick kid.  All of these topics are near and dear to my heart, but honestly, public speaking is not my favorite thing in the world.

I also spent a lot of time, both on the blog and in person, advocating for the health care of children.  It’s so important to speak up for kids who are sick, and for their parents who are in crisis.  For the first time ever, I wrote to my congressional representatives, and I even traveled to their offices to speak to their staffers.  I wrote a letter for STAT news that was published about the necessity of the Affordable Care Act for kids like my Wendy.  I worry about funding for CHIP that will only last through March, and I will keep fighting for funding for those kids as well.

I got to do one of my favorite things the other day, which was wrap presents for parents who have kids in the hospital for Christmas.  There are a number of charities that buy presents throughout the year and bring them all in to Massachusetts General Hospital so parents can “shop” for their sick kids and then we get to wrap the presents for them.  In fact, Brave Fragile Warriors was inspired because of this event a few years ago.  I love it because it’s easy, right?  I go in and wrap presents.  But the parents, who have had their kids in the hospital for who knows how long and who are in total crisis mode, are so grateful. It’s one less thing to worry about.  There were two sets of twins at the hospital, each with older siblings at home. One mom had a pile of knit hats, that she added along with her toys for her son who was going through chemotherapy and had lost his hair.  One mom separated her gifts for each child so that she had something to give to each of them. One mom was telling me that the Christmas Tree was still tied to the top of the car since last week because they had to go straight to the Emergency Room and hadn’t left the hospital since.  Think about that for a minute.  It made all of my crises seem rather small in comparison to twins in the hospital and a tree still tied to a car.

It’s too late for a lot of us to help kids and their families in crisis right now, this year, in person.  But I would suggest finding a charity to donate to, for kids, and you’ll feel better, even if your holiday isn’t going so well right now.  If you don’t have a favorite children’s charity, then I would suggest the Make A Wish Foundation.  They give kids with life threatening illnesses the chance to make one wish.  Whether it is to meet a personal hero, or to take a special trip, or to have a certain event.  When Wendy had her Make A Wish, she chose to go on a Disney Cruise, and I can honestly say, it was one of our first steps toward healing and feeling like a family again.  Other kids choose to swim with dolphins, or to be Batman for a day.  You get the idea.  For Wendy it was a big boat with a pool and water slide, and Mickey too.

Happy Holidays to you and yours.  Celebrate the season together.  Make good resolutions.  Rediscover gratitude.  Lend a helping hand to those who need it.

These are my last minute wishes for you.

 

Seasons Greetings from the Island of Misfit Toys

I’m going to tell you a secret.  The holidays can be incredibly stressful for  a parent of a chronically or terminally ill child.

It’s because a lot of times we feel like residents on the Island of Misfit Toys.  You know that story, where Rudolph the Red Nosed Reindeer lands on an island of toys that are a little different. The Charlie-In-the-Box, the spotted elephant, the train with the square wheels, or the water pistol that shoots jelly.  They are toys that are different enough to be pushed to the sidelines, in favor of a more sparkly Christmas.

How do we feel different?

It’s the Christmas Cards, for a start.  The perfect pictures. The smiles. The letters that accompany them, telling of milestones and trips and accomplishments.  Don’t get me wrong, we LOVE that you are doing so well, that your kids are doing well, that you’ve done these amazing things.  But our child’s milestones might be different.  Our accomplishments, though amazing for us, seem delayed to some.  We don’t know exactly what to write about, what to share.  We feel a tiny bit of shame in this, the mix of envy and embarrassment, and the knowledge that a few of our kids won’t be around next Christmas.  We don’t want to bring you down with us, but for some of us, this is a reality.

Then, there are the families that spend the holidays in the hospital, and though the staff does its utmost to make the time special, the truth is that  it’s not home, it won’t be home, and it’s the last place that most people want to think about on Christmas.  That’s the reality.

I recently sat around with other parents of chronically ill kids, and this is what we talked about, the wanting to be happy for others, the burden of making the holidays special, and the feeling like you’re always not measuring up to the ideal.  For me, here is a small example. Wendy takes medication three times a day (besides her insulin.)  We are fastidious about giving it to her. We have a weekly pill organizer, and she never misses her morning dose.

Except on Christmas.

For the past three Christmases, she’s missed her morning dose, because we get up earlier and open presents. Then there’s a rush for coffee and breakfast, and cleaning up.  We usually realize around 10 am that we’ve forgotten.  There is always guilt with forgetting. There are parents who have kids in wheelchairs and on breathing machines.  Parents who have to do PT on their kids’ chests.  Medical care happens even on the holidays. Parents are vigilant even on the holidays.

We love our kids.  We love our life. And we love the holidays. But sometimes when we smile and say we are stressed, or busy, it’s more than that.  Sometimes it’s that we realize if we told you more it would ruin your holiday mood, and you deserve to be happier during the holidays.

If you’re really interested, ask more questions.

In the meantime, enjoy your holiday, and your family, and the season.

Happy Holidays.

“Wonder”: Review by a Mom of a Sick Kid.

The movie “Wonder” is the story of a young boy, Auggie, who has a facial deformity.  He has been in an out of the hospital for his entire life. The whole family revolves around his care, and everything else gets put on hold:  Mom’s academic career, sister’s attention, and poor dad doesn’t even get a chapter devoted to him.  Auggie, however, has the hardest time, he knows that he looks different from other kids, and now he has to face the horror of going to school for the first time, in *gasp* middle school.  Now, let’s just say it here and now, middle school is tough for everyone involved, but to start at a school for the first time with a noticeable difference, well, that makes it all the harder.

I admit, I cried for at least 75% of the movie “Wonder.” (Wendy cried for the whole movie.)  And why not, there were moments that I could relate to, because at some point in her childhood, my beautiful teenage daughter looked different from other kids, but she was too young to notice.

Because of Wendy’s incredibly high blood pressure, she was taking five different  blood pressure medications.  One of them, minoxidil, is a vasodilator; it expands the blood vessels, which lowers the blood pressure.  You might have heard of the drug, minoxidil, it’s the main drug in Rogaine.  It’s side effect is that you grow extra hair, hair that is darker and more coarse.  For Wendy, she went from a blond to a brunette in just a few months, and her hair grew so quickly that I needed to get her hair cut every three weeks.

Wendy had other things going on, a patch that she wore just below her collar bone for another drug that helped control her blood pressure, and the hair wasn’t just on her head, it was all over:  arms, legs, forehead, back.  She looked….well….different.   Obviously, different.

Wendy was only four, and being the vibrant child that she was, she didn’t notice. We still went to museums and the park, and walked to the hospital twice a week for blood work.  She still swam in the public pool and played in the splash parks. She had an easy smile and a friendly, outgoing personality with other kids.

But the other moms, well, they looked a little nervous around my child.  And the kids, well, they would ask what was wrong with Wendy, why she looked like that.  Thank God, Wendy never noticed.  I would explain that Wendy has an illness and she takes a special medicine to make her feel better, but the medicine makes her grow extra hair.  That satisfied the other kids, maybe not so much the other moms.

Then there were the times where people who knew Wendy didn’t recognize her because she had gone from a blond to a brunette, because she had the puffy cheeks due to her kidney failure, because she had the patch below her collar bone.  Those people would see me and ask where Wendy was, and then visibly startle when I pointed to the child next to me.  Those are the ones Wendy noticed.

There was a woman who cut Wendy’s hair, every three weeks, at Supercuts. We would arrive, and the other beauticians were visibly concerned over how to cut Wendy’s hair, and this woman would just scoop her up, ask about her day, give her two lollipops, and say, “See you in three weeks.” I loved that woman, because she didn’t make a big deal about Wendy.  Wendy was just another kid to that woman.

I cried because I could relate to some, but not all, of the feelings that the mother, played by Julia Roberts, was going through.  Yep, my life had been put on hold.  Yep, my life revolved around Wendy’s care.  Yep, I still worry that Penny doesn’t get enough attention.  Yep, I worry about every new step forward that Wendy has to take ( like going to Washington DC this spring with her 8th grade class for a week without me.  I think I might die.)

But the truth is, that most of us, thankfully, are not Auggie, and we are not Auggie’s mom.  Most of us aren’t Auggie’s sister, or dad.

Most of us are Auggie’s friend, Jack Will.

Jack knows that Auggie is different, and doesn’t know what to do about it.  He’s nice to Auggie because he has been asked to be, and because he is a scholarship student, he’s feeling like he really has to do it.  But he learns that Auggie is sweet and kind and funny and smart, and they really become friends.  But Jack still knows that Auggie looks different. Jack says the wrong thing on Halloween, about his appearance, hurting Augie’s feelings and having to make amends.  Spoiler alert:  it turns out to be ok. Jack Will realizes his mistake when Auggie starts to avoid him.

Jack was my favorite in the book, and he was my favorite in the movie because while Auggie’s family doesn’t have much choice, they need to be supportive of Auggie.  Jack does have a choice, and he chooses to be kind.  Which is the point of the story.

The author, R.J. Palacio, wrote the book Wonder because of a real life experience.  Her young son burst out crying, seeing the face of a young boy with a facial deformity at an ice cream shop.  She was so mortified, because her child wasn’t emotionally prepared to be kind to this young boy, and she went home and wrote the book, from multiple perspectives.  Each perspective in the book speaks from one of the characters (except the Dad, which gets me angry).  Each perspective shows that living life with a loved one who is ill isn’t easy, but you make room for kindness. Bad days will happen, but you move forward, together.

Auggie’s presence changed the tenor of the school, because he was kind as well.  And the other students became protective of him when they saw how the outside world viewed him because they didn’t know him.  You would be tempted to say that the moral of “Wonder” is don’t judge a book by it’s cover, but you would only be half right.

The other half of the moral is it’s ok to be afraid and kind at the same time.

That’s the lesson we want to teach our kids.

 

 

Hawkeyes’ New Tradition, Good Medicine

You know, sometimes you stumble upon a story and it stays with you for a long time.  This is one of those stories.   The University of Iowa Stead Family Children’s Hospital just recently opened a few new floors to their hospital.  These overlook the Hawkeye’s Stadium. The staff decided that they would dedicate a portion of the new construction to a “press box”, a place where sick kids who are inpatients and their families could watch the Hawkeyes play home games.

One mother had an idea, and she wrote to the team on facebook. Wouldn’t it be nice, she said, if at some point in the game, the whole stadium got up and waved to the kids watching in the hospital?

The team decided to do it.  They started in September.  Now, between the first and second quarter, the whole stadium stands up and waves to the kids in the hospital, and they wave back. It’s like a seventh inning stretch, but it  connects the two worlds.  It helps the sick kids and the families feel like they are being seen.  It creates awareness for those who go to the games that there are sick kids there all the time, through all the seasons, and through all the holidays.

And the best part, is it doesn’t cost a thing.

All because a mom of a sick kid wrote to a team, and told them what would be nice.  She told them what she wanted.  And it has changed a culture.

How amazing is that?

Here is a video of the story!  Watch the whole thing!

Watch and share with your friends.

Imagine if parents were always heard like this and communities helped in the healing process.

 

 

 

Please Advocate With Me

There’s been a lot going on in the news, and here are some of the things that I’m worried about.  Let’s start with CHIP.

CHIP stands for Children’s Health Insurance Program.  It is a jointly funded program, so each state shares the cost with the Federal Government.  Founded in 1997, it was designed to help the working poor afford health care for their kids. This insurance is for children only and you can only get CHIP for your kids if you don’t qualify for Medicaid but you can’t afford private insurance.  In other words, you need to be slightly above the poverty line to qualify for CHIP.

Congress let that funding expire as of September 30 of this year, leaving states to either carry 100% of the funding or let the program die.  This is a program that gets kids physicals, gets them vaccines, or gets them to the dentist.  It keeps them healthy, and personally I’m a big advocate of healthy kids.   When kids are healthy and well fed, they learn better, they do better and they keep other kids around them healthier too.  To me, it is worth a few extra pennies of taxes.  It’s for children.  It’s the responsibility of all of us to keep our children safe, and when I say our children, I mean ALL children.

Then this last Wednesday, President Trump signed an executive order that  instructs federal agencies to look for ways to expand the use of association health plans and broaden the definition of short term insurance.  As a result, the Trump administration could make cheaper plans with less generous benefits more widely available. This undermines the system of the Affordable Care Act, where the stronger and healthier help to bolster the sicker and weaker, with the idea that someday they will also be sick and weak and they will need a robust health insurance in place to cover them in as well.  That’s the way health insurance works.  you pay now, when you’re well, betting that someday you will be sick.

And eventually, someday comes.

It’s come for my family.  I am the mother of a chronically ill kid who was born healthy but acquired a bacteria that wrecked her little three-year-old body, causing extensive organ damage and resulting in a kidney transplant among other things.  The executive order that the president signed will undermine my ability to keep her healthcare.  It will make premiums go way up.  It will make it increasingly difficult for my husband or me to change jobs.

Imagine what the combination of the expiration of CHIP and the Executive Order signed this week will do to the working poor, with a child who has asthma, or a peanut allergy, or was born premature.

Is it possible to convince people that it is in the interest of society to care for our sickest and weakest members, to care for the health of children?  I think it is.  I’m their advocate, I speak for them, that is literally what advocate means.  It means, “I give voice to.”  And so, I am speaking for the chronically ill kids, the working poor kids, the kids who are the sickest and the weakest among us.

I am asking you to call your Members of Congress to re-instate CHIP.

I am asking you to contact the White House to ask the president to revoke the Executive Order.

It is the job of the strong and stable to bolster the weak and the sick.

That’s what communities do, and this country is just one big community.

Please Advocate with me.

 

The Power of Moments: A Review

The Heath Brothers have released their newest book, “The Power of Moments.”  It discusses how certain moments stay with us through a combination of factors.  Conveniently, the factors form an acronym, EPIC:

ELEVATION:  Defining moments rise above the every day. They’re special.

PRIDE:  Defining moments capture us at our best, moments of achievement or courage.

INSIGHT:  Defining moments rewire our understanding of ourselves or the world.

CONNECTION:  Defining moments are moments we share with others.

They give good examples for each of these areas.  Then they challenge you to make more of your interactions moment-worthy.  How do you break the script of the every day?  How do you build in moments that are extraordinary for others?

I’ve never read a Heath Brothers book before, but I enjoyed this one.  Of course, I am biased.  One of this blog’s stories is in the book, the very last story in the very last chapter.  It talks about a moment when Wendy had been in the hospital for many months and two nurses decided on the day that there was a huge snowfall, that they would team up to figure out a way to get Wendy some snow.  This was complex because at the time, she was in heart failure and had a severe water restriction, and of course she was going to eat some of that newly fallen snow.  So, the nurses scooped up some snow, measured it, melted it, measured it again, made a calculation, and then went out into the snow AGAIN and got more fresh snow to bring into Wendy’s room. You can read my blog post about it here.

Dan Heath shared with me while we were talking on the phone, that not only was it a wonderful, defining moment for Wendy and our family, but also for the nurses as well.  It was a tangible thing they could do to bring joy to a little girl from Vermont who had been in the hospital for months.  It was connection.  It was elevation.  It was insight.  It was pride.  And it didn’t cost a penny, just some time.

I really enjoyed reading the book, and I’m so grateful to the Heath Brothers for including our story in it.  One day an advance copy just arrived in the mail, with their special thanks. It is unlikely I will ever meet them, but it’s really cool that our story, Wendy’s story, is now in a book.

You can purchase the book today as it has just been released.  If you read it, please let me know what you think of it.  Here is the link to the book on Amazon.

Your Story Matters, Share It

Do you know  how sometimes there’s a synchronicity and you’re not sure what it all means yet, but you know it means something?

That happened to me.

A few months ago, I was asked if I would speak at a college event called “Your Best 10.” They asked 10 people to speak for 10 minutes on a topic they are passionate about.  After a lot of thought, I decided to talk about the importance of sharing stories.  After all, I am a peddler of stories, as a history professor, I feel like that’s a lot of my class and a lot of my life.

But it took me a long time, perhaps too long, to realize that my story was important too.  I always thought that my story wasn’t worth telling.  But a lot of research has been done recently that shows that telling your story is both healing for you, and creates connection and empathy with the person listening to the story, even if that person is not in the room with you.  That is why programs like “Story Corps” or “The Moth” are so successful on the radio.  People like to be told stories, and they stay with you long after the story itself is over.

Two weeks ago, I was at a meeting for the Family Advisory Council at Massachusetts General Hospital.  The speaker was a woman named Dr. Annie Brewster. She is a doctor who has started a non-profit organization called Health Story Collaborative.  It’s a non-profit that facilitates a patient telling his or her story with a person that they can talk to, and audio equipment with which to record the conversation.

Then people can listen to your story in a sound booth or online.

But, what if the person you are telling your story to is your doctor, and the story you are telling is about your health journey?  Wouldn’t that create connections and empathy with someone whom you really want to connect?

This has become a movement in healthcare, encouraging healthcare professionals to take a few minutes and listen to their patients tell their stories, not just rely on the data presented. It has been used as a tool for residents and fellows.  It is now part conferences for medical professionals.

I gave my speech for Your Best 10 yesterday.

Unrelated, today I got a phone call.  I was asked to speak at a Patient Experience Summit at Massachusetts General Hospital.  It’s funny how things work.  First I speak about the importance of telling your story, and then , the very next day, I get a call to ask me to tell my story.

What’s funny is that I don’t think my story is any better or worse than any other story.

The difference is that, now,  I’m willing to tell it.

Match Day! March 17!

This Friday is Match Day.

Match Day is always the third Friday of March, and it pairs soon-to-be medical school graduates with hospitals for their residency.   These medical students have been interviewed and vetted.  They fill out their top preferences, and so do the hospitals.  Then it all gets sent to a centralized matching service.

The results are this Friday.

After graduation in May, they then pack up their things and move to the teaching hospital that they have been matched with.  The old residents, those who are moving onto fellowships or into private practices, leave at the end of June, and the brand spanking new residents start on July 1st.

It’s an inside joke that the beginning of July is a bad time to get sick.  Now you know why.

Wendy entered the hospital at the end of June of 2007.  By the time we got a handle on who did what, and some familiar faces, they all changed on July 1st.

As a parent, I have a different idea of Match Day and new residency now.  At first I hated the July 1st day, because everything would change, and change is hard.  Now, I go in and talk to the new residents on their first day, to tell them what it’s like to be the parent of a chronically ill kid, to tell them what it’s like to basically be a professional hospital parent.

The truth is, parents know a lot, but we still manage to be scared and feel helpless when our kids are sick and in pain.  We can’t help it, that is the way we are wired.

Another truth is, a lot of new residents don’t have kids yet. They’re in their late 20s, they’re just starting to settle down with a life partner. They haven’t had kids, and even if they do, they might not have sick kids.  Yes, they are super-smart, in fact they are used to being the smartest person in the room, but they might not know how to talk to kids, how to talk to parents, to understand what life in a hospital bed is like, what a hospital room feels like. They don’t know to rely on a parent’s hunch that something isn’t right. They don’t know how to go from technical speech to parent speech, and then to kid speech.

They don’t know these things Yet. But they will.

We are a part of their learning process. We give them space to ask questions.  One of the medical students asked the question, “What if I don’t know the answer?”  Imagine, if every doctor asked that question and was given a safe space to talk through it.

I saw a quote today that said, “Making Mistakes is Better than Faking Perfection.”

Do you know doctors whom you wish had been given permission on their first day of residency to ask that question?

I do.

March 17th is known as St. Patrick’s Day.  Here in Boston it’s also known as Evacuation Day, the day that British Troops Abandoned Boston during the Revolutionary War.

But this year, It’s also Match Day.  I wish those new soon-to-be residents the best of luck, the Luck of the Irish.

I’ll see them at the end of June, to tell them my story.

Related:

Last year’s blog post:  What If I Don’t Know the Answer? (6/20/16)

Compassion is Sometimes Foreign

A while ago, I was at a dinner sponsored by The Schwartz Center for Compassionate Care.  It was a dinner for all of the Patient and Family Advisory Councils of Massachusetts General Hospital.  We have eight of them, and so the room was quite filled with not only patients and families, but with administrators at all levels.

Unknowingly, I was sat next to the moderator who stood at the beginning of dinner, and asked us all to think of a  moment of compassionate care.  Then a runner went around the room with a microphone where people could share their stories.  And all of the stories were good ones, small acts of kindness that at the time made the pain of the moment more bearable.  We all have had those moments.  The truth is, I have a hundred stories of compassionate care, but I had chosen one of my favorite stories, one that truly went above and beyond.  It was the first one I had thought of.

I had no intention of sharing it with the larger group.

But the  moderator, at some point in this discussion, asked the microphone runner to come up to her, and then she looked at me and said, “Darcy, I bet you have one that you can share with the group.”

Busted.

So I stood up, and here is the story I told:

“My daughter, Wendy, was born healthy, but had an infection that shut down the small blood vessels of her body.  She spent over 180 days in the hospital.  At the time we were living in a small Vermont town, but we had to move down to the Boston area to be closer to the hospital, especially once we knew that Wendy needed a kidney transplant.  So once we moved, Wendy’s nephrologist, after Wendy’s [outpatient] appointment was over, looked at me and asked me how Wendy was doing with all of this, how we as a family were doing with all of this.

“I answered that our apartment was fine, transportation to and from the apartment was good, but I was worried because Wendy had no friends.  She couldn’t go to preschool because she was so medically compromised, and she had been in and out of the hospital for so long that she really didn’t have any interaction with any kids at all.

“The doctor looked at me, was silent for a second, and said, ‘I have a daughter.  She’s only a few years older than Wendy.  Let’s have them meet.’

“And so, maybe once a week for a number of weeks, we would meet at the Playground by the Frog Pond in Boston Common, and Wendy would play with Ashley.”

You could hear gasps in the banquet room.  Maybe because this was so unusual, maybe because it was so special. It wasn’t medical, it was emotional.  I wanted Wendy to have a friend in this new place where we lived.  Wendy’s doctor, as a mother, understood exactly what I needed, what Wendy needed.  She needed to feel like a normal kid.

Would it surprise you to know that I was asked to retell that story many times over the next few months?

I’ve been thinking about this doctor a lot lately.  This doctor, who when she goes on vacation, often will come back with a present for Wendy. This doctor who brought a snow globe for Wendy to hold while she got wheeled into the operating room when she was getting her kidney transplant.  This doctor, who when Wendy got air lifted  to the hospital while in heart failure and I couldn’t go on the helicopter with her, this doctor called me on my cell phone and told me not to worry, she would be there to meet the helicopter while Michael and I drove down from Vermont.  This doctor, whom recently when Wendy had an MRI and they told us it would be a week until they let us know (if Wendy had a brain tumor or lesions) went down herself and badgered a radiologist to read it with her, and then called me to tell me it was clear.

This doctor.  This doctor is an immigrant.

She is an Indian woman, Dr. Sharma.  Her accent is incredibly thick and she talks a mile a minute.  Her grammar and syntax are sometimes laughable.  She uses idioms wrong, like instead of saying, “You are between a rock and a hard place,” She would say, “You are between two hard places” and your brain has to figure out what she meant while she plows on with her rapid speech.  This doctor, whom the first time I met on the other side of Wendy’s bed in the PICU spoke so quickly and with such a thick accent I despaired that we were doomed because I hadn’t understood a word she said.

And yet, today, I can’t imagine our lives without her.

Shock waves went out among the medical community this past week with the new travel ban and executive order to build a wall along our southern border.  The truth is, the United States Medical system relies on immigrants.  Hospitals have had to scramble to figure out exactly what they are going to do, because the new President has made it very clear that his “America First” makes all immigrants suspect.  And yet, more than 25% of all physicians in the United States are foreign born.

So is America First just a slogan?  Does it mean America First with fewer immigrants, or does it mean America First with the best medical system in the world?

It seems to me, in a country that was founded on immigration, you need the best minds working on the hardest problems in medicine, in science, in public health.

No matter their country of birth.