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.

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“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.

 

 

Impatient, Empowered

Yesterday, Wendy received the Patient View Impact Award, the only national award given to patients who make a personal impact in medicine. Payette was given a special award too, for being a champion of the project.  (In reality, without them it wouldn’t have been possible. )  The awards were given by the Patients’ View Institute, a non-profit organization committed to organizing and amplifying the patient voice, so we can have more impact on the quality of care we receive.

The Patients’ View Institute collects patients’ stories, organizes them, and allows them to be viewed by others going through similar circumstances.  It also awards a few great stories once a year at the annual meeting of the Leapfrog Group.  The Leapfrog Group is a non-profit committed to transparency in medicine.  Hospitals send them their quality and safety reports, and Leapfrog gives them an A-F grade based upon their reporting. The best hospitals are brought to this annual meeting to receive their award.

So, Wendy was given an award in front of representatives of the best hospitals for quality and safety in the nation.  Think on that for a second.  If you could tell three hundred people who have the power to change the day-to-day  operations of a hospital, if you had their undivided attention, what would you say to them?

Here’s what struck me about the day.  Everyone in the room was trying to make healthcare better.  Everyone was worried about the cost, the consistency, and the safety of healthcare.  But most of the people were looking at it from the institutional side of it, the bean-counting side, if you will.

Wendy’s story was one of a few individual stories of patients who were empowered to make change in the medical world.  The most prominent story, however, was the keynote speaker, Epatient Dave, who talks about patient engagement and empowerment.  His TED talk is one of the most viewed talks in history.  I highly recommend it.   He empowers patients to know their health history, and to connect with each other.

Another parent was there winning an award, named Becky White, is also the parent of a medically complex child.  Not 0nly did she go back to school to get her nursing degree, but she went back again to get her MBA.  She stressed that as a parent of a medically complex child, that she needed to know how to speak three languages:  the language her child would understand, the language the medical world would understand, and the language that the business world would understand.  She invites hospital administration to round with her when she is taking care of children so that they understand what is necessary for caring for a medically complex child.

Another parent, Liz Minda, is an advocate for her child who has had over 11,000 seizures in her lifetime.  Liz advocates for medical marijuana, and has spoken to media and legislatures about its impact on her daughter’s health.

You can read about both of these women here in the PVI press release.

It took me some time to process the whole day.  There was so much information, so  much intention by everyone in the room to improve health care, that it was hard to keep it all straight.  I took copious notes.

What struck me about the other patients and parents, though, was that they were both empowered and impatient.  They were there because they were creating change.  Wendy and I were there because we wanted change too.  The kids in these stories are extreme cases, but they don’t have to be, they don’t have to be the kids who are frequent fliers in the hospitals.  I think, though, that the amount of time our children spend in the hospitals make us as parents want to make the entire medical experience better.

Some people write books about their experience; some write blogs.  Some people speak at TED talks.  Some people create cartoons.

What can the average person do?  That’s what I was thinking about last night. Does it have to be such a grand gesture?  Of course not.  Those things get noticed, surely, but lots of good can be done without a media blitz surrounding it.

I came to this idea of the Patient and Family Advisory Council.  It is a council at hospitals that really bridges the divide between patients (or families) and providers.  Let’s say a family has an experience at a hospital and they know a way that it can be improved.  For example, a family notices that there are no pediatric wheelchairs.  Where can they go to get them ordered?  The Family Advisory Council.  A family notices that the pain medication that was prescribed in the Emergency Department doesn’t transfer up in the orders when they reach the floor.  Who can they tell?  How do they create the change?  The Family Advisory Council can point them in the right direction.

When Wendy and I wrote the story for the Emergency Department Cartoon, I brought it to the Family Advisory Council to help me figure out what to do with it.  The co-Chair of the FAC, Sandy Clancy, helped me to create a committee of people who needed to see it to approve the content, including doctors, nurses, social workers, child-life specialists, psychologists, you name it.  There would have been no way for me to know whom to contact or how to do it.

Likewise, the Family Advisory Council is a resource for the hospital as well.  Different departments come to us for advice about any variety of things.  New blueprints for new departments are brought to the FAC to see if they have any suggestions.  FAC members review and edit information that is given to the public. Parents speak to residents on their first day in their new job about the importance of bedside rounding.  We even sponsor a Grand Rounds every year about family centered care.

I wrote a piece about family advisory councils for Courageous Parents Network a few months ago.  You can read it here.  (It lists me as Casey Daniels, though.  🙂

If you want to be a part of a Family Advisory Council, contact your hospital and see if they have one.  Usually there’s an application process.  If your hospital doesn’t have one, consider starting one.  The Institute for Patient and Family Centered Care has created a whole series on how to start an FAC in your area.  You can look at their information here.

In conclusion, though it’s not exactly important what I said at the conference with 300 quality and safety people in it, since I posed the question, I will tell you what I decided to say, concerning the cartoon.

I said, since we all arrived by airplane and every airplane in America has a safety introduction before they take off, everything from fastening your seatbelt to what to do in the event of a water landing, why don’t we have introductions to every Emergency Department in America, when people are sick and scared and hurt?

Though it may not change anything, hopefully it gave people something to think about on their flight home.

 

 

 

 

 

Brave Warriors, Courageous Parents

It’s Thanksgiving week, and I have much to be thankful for.  I have found that since I started writing this blog, that I have been put into contact with lots of amazing people, who help both sick kids and their parents. One of those people is Blyth Lord, founder of Courageous Parents Network.

Courageous Parents Network is dedicated to supporting parents of children with serious or life-limiting illness.  It was started when Blyth’s child was diagnosed with  a genetic disease that is very rare and always fatal.  Her husband is an identical twin and his twin brother’s child had the same disease.  The cousins were diagnosed a few months apart and died a few months apart.  Yet, the families got through it together, supporting and understanding what the other family was feeling and encountering.  There was strength in their solidarity.  Blyth  wanted to bring that solidarity to other families, so she started the Courageous Parents Network, a series of blogs and videos that deal with different topics from diagnosis, to communication, to partnering with doctors, and self-care.

Recently, Courageous Parents Network had a Story Corps podcast event.  They had asked five different families to reflect on living with a sick child, some of whom have passed away.  They then edited the thirty or forty minute interviews  down to five or six minutes each and compiled them, so that we could listen to them together in small booths.  Some of them were interviews with parents, and some were interviews with siblings of sick kids.  All of them were raw and powerful.  These are shadows in the conversations of our lives.  These are the unspeakable things that no one wants to talk about, no one wants to think about.  And yet, these families are living them, every day.

Blyth had asked me if they could include the Story Corps interview that Wendy and I had done this past summer, and to be honest, I had to think about it.  Wendy, though chronically ill, is not terminally ill. I wasn’t sure that we would be a good fit.  Blyth assured me, however, that though the circumstances are different that the core feelings are the same, that of worry and helplessness, of finding joy in small moments, and discovering our own strength as a person and a parent.  So I agreed.

The night was beautifully laid out, with a modest dinner of sandwiches, salad and cookies.  There was an introduction given by Blyth and by a  parent who had lost a child to cancer and had also done a Story Corps interview with her husband about her daughter’s last year of life.

I have mentioned before that people have a ripple effect in their lives, and it turns out the the parent speaker and I had never met but had contact over the internet and by phone.  Her child had suffered from the same infection as Wendy and though her daughter fully recovered from that infection, many years later she was diagnosed with cancer and passed away.

However, the mother still followed Wendy on her CarePage.

In the listening booth, filled with balloons and transparent pictures, we listened to the stories of each other, and of other parents.  Tears were shed, hugs were given, and I’m not sure that I will ever see those people again but we did have this moment where we understood each other as parents.  We were a community for a moment in time.

All of the podcasts can be accessed on the CPN website, under Podcasts..  They are incredible.  Take some time to listen when you can.

This work, giving direction to parents who have seriously ill kids, is both challenging and meaningful. It is hard to talk about palliative care and hospice all the time.  It’s hard to meet people at their most vulnerable states.  But imagine if Courageous Parents Network wasn’t there, the loneliness and isolation would only compound itself.  It’s hard work but it’s good work, and I’m happy to be a witness to it, and to help it when I can.

It’s a funny thing, once you put your flag in the sand and say “I stand for making room in this world for sick kids and their families,” how many people enter your life and how many connections you make.  In this week of Thanksgiving, I am thankful for the connections, thankful for the hard work, thankful for the relationships I’ve made along the way, thankful for this blog to convey the journey, thankful for the people who read it and encourage me to continue.

This blog was a New Year’s resolution, to write one post a week. It turns out that a post a week is ambitious, and I can’t believe that I’ve almost been doing this for a year.  I’ll have to decide how I want to continue and move forward.

To be continued.