Students, About that Walkout: Totally Do It.

Hi Students,

Thanks for taking the time to read this.  I wanted to take a minute to talk to you about the walkout scheduled for March 14th (or April 20th, depending on where you are in the country.)  I am a history teacher and mom of two girls and I’m one of many adults that will tell you to totally do it.

The walk out has to do with protesting gun violence in schools.  It’s completely fitting that you, the students, would want to do this.  After all, you’re the ones who go to school every day, the ones who have to deal with this fear, the ones who have to go through the drills and the what ifs.  What if an armed intruder comes into the school. What do you call it?  An active shooter? A code red?  Whatever you call it, or your school calls it, it’s totally wrong that it’s something you have to worry about.  You should be worrying about what college you want to go to, who you want to go to the school dance with, whether or not you want to try out for the school play.  You should not have to worry about whether or not there’s a student with a gun who’s going to shoot you in school.

This is your chance to use your bodies in a political movement. The truth of the matter is that money moves politics, and the lobbyists have all the money.   There aren’t a lot of political options open to non-voters, but one of them is peaceful protest.  It’s a protection in the First Amendment, along with freedom of speech, freedom of the press, and freedom of religion.  Freedom to peaceably assemble is right there too.  It’s your right,all of our rights as American Citizens.  Thomas Jefferson called them “unalienable rights” along with Life, Liberty, and the Pursuit of Happiness.   I’d say that not getting killed by a gun in school qualifies toward Life, Liberty, and the Pursuit of Happiness, wouldn’t you?

There are a bunch of letters out there from other teachers who are encouraging you to have a Walk Up rather than a Walk Out.  The idea is that rather than using your bodies to politically protest, you use your bodies to sit down next to the lonely kid next to you, you share a sandwich, you be a nice kid.  And I want to tell you, that’s great, but you can totally do that 179 other days of the year.  In fact, sit down the day before the walk out next to the lonely kid, share your sandwich, and invite them to the Walk Out with you.

Because here’s the thing.  This is ONE DAY.  The walk out is a movement.  It’s a way to organize.  It’s a way to be powerful both individually and part of a group.  It’s being educated about a subject, and making a decision to do something about it, at the same time as everyone else.  It’s a national movement of all teenagers who have said, “Enough.  Enough of being afraid.  Enough of choosing the right of gun owners over the lives of kids.”  And doing it all together, all at the same time, gives it more power.  So Walk Out Proudly.

You might be getting pressure by principals and teachers to not participate in the Walk Out.  They might be threatening you with disciplinary action, detention or suspension, or whatever.  Keep in mind, these are the same people who celebrate people who hid Jews during the Holocaust, who teach you about Martin Luther King, and sitting at lunch counters in Woolworth, or about suffragettes marching for Women’s right to vote.  Here’s the thing.  All of those people whom  you read about and celebrate, they were acting against the law because it was the right thing to do.  It’s called Civil Disobedience.  Why are your principals and teachers against this idea of  your civil disobedience, but celebrate the civil disobedience of historical figures?  Well, let’s just say that democracy is messy and complicated, and it’s hard for your principal and other school leaders to see the light at the end of the tunnel. Their job is to protect you and to make sure that there is order and discipline.  They’re seeing the potential risks to having a bunch of kids walk out, not the potential greatness.

So here’s what you do.  You educate yourself on why you are walking out.  You organize with your friends.  You stay respectful to the adults in your life, while staying true to yourself.  Remember, this is only 17 minutes, from 10 am to 10:17 am, after that you go back in the school and go back to work taking notes and raising your hand, eating in the cafeteria and running track.

Here’s the other thing you do.  You bring your phone.  You take lots of pictures and videos.  And you post them on all of your social media accounts.  You make this go around the world again and again and again.  You show your power as soon-to-be-voters and internet savvy consumers.

And then you do one other thing.  You write to your Members of Congress.  You write to the President.  Maybe you even send them a picture.  You say that you’re a student who Walked Out and you tell them why you walked out.  And you tell them that you’re not going away.  And that they will be voted out if they don’t change the gun laws to protect kids in schools.  Governing is just a plan for the future. If you don’t like the way your representatives are running the government, you can vote them out in favor of someone that has a better plan .  You have the power, or you will very soon.

One more thing.  I want to tell you how proud I am that you’re taking a stand and making yourself visible.  You are going to be the leaders of the world, and I’m glad to see that you’re doing it with thought and responsibility.  That’s what this country needs more of, young people who speak truth to power.  Speak your truth.

Please share this with your friends, and let me know how it goes.  I can’t wait to watch this unfold. You are Brave Fragile Warriors. Be safe and have fun.




Family Centered Care is a Partnership

When you take your child to the doctor, or to the hospital, how much do you know about them?  How much do you influence them?  How much influence do you have over the nurses and the front desk staff, the phlebotomist or the technician?  Have you helped create the design of the location, or the layout of the room?  Have you influenced the way the providers interact with you?

How much influence do you want to have?

When Wendy was first sick, many years ago, we had no experience with doctors or hospitals.  We walked into a brand new situation, filled with well meaning and empathetic providers and a brand new Pediatric Intensive Care Unit.  But the unit was so new that no one knew where anything was, and I remember watching doctors rifle through drawers when Wendy was having a hard time breathing in order to get the right equipment to intubate her (put a breathing tube down her throat.)  I remember when she was breathing on her own again and a resident came in with a weird breathing apparatus that they wanted us to use so that Wendy’s lungs could get stronger, and then after the resident leaving, the nurse whispering that she would get us a bottle of bubbles instead.

I remember in this brand new PICU facility having the problem that Wendy wanted to pee on her own (at the age of 3) and there not being a toilet for her.  And I remember in this nice new facility that the television where we were watching the football game caught on fire.

All of these things were totally normal, understandable, but also preventable things. (Well, maybe not the Television Fire.) If a parent had been around to help with the planning of the spaces, to talk with the residents, to be a part of the process, then maybe some of these snafus wouldn’t have happened.

This is the idea behind family centered care.  The idea that as doctors, and nurses and other staffers, you’re not just treating the illness, you’re treating the person.  And with the case of little kids, you’re not just treating the person, you’re treating the entire family.  Lots of changes have been made since the day we walked into Massachusetts General Hospital almost eleven years ago.  Since our first day, the hospital has instituted bedside rounding, where the doctors go into the room to talk to the patient and the families to make a plan for the day, to see if the family has any questions, and to make things as clear as possible.  The nurses call once you’re discharged to see if you have any additional questions, or might have forgotten something, and to help you set up follow up appointments with your providers.  And you have the opportunity to rate your hospital stay, to mention what has worked and what hasn’t worked.

These are great improvements, real changes to the quality of care and the way parents and patients feel a part of the team.  These have been life changing improvements.

But whet if we could do more?

What if family centered care included the systemic planning of the care to begin with? What if families were asked to meet with providers before care ever took place to make the care itself better, seamless care?

I’ve been working toward this goal for a long time, as a member of the Family Advisory Council at Massachusetts General Hospital for Children.  First, I should tell you about the Family Advisory Council.  The FAC is made up of parents, doctors, nurses, social workers, child life specialists, and administrators.  Its goal is to foster better communication between patients, parents and families, and to make the hospital experience better all around.

One of the things that we do is work on projects that we feel are important, like a pediatric wheelchair pilot program.  The hospital didn’t have pediatric wheel chairs, can you believe it? So a group of concerned parents got together with administrators, went through all of the wheelchairs out there, and with the help of an occupational and physical therapist, chose the best one that would serve the needs of the most kids.  The hospital ordered a bunch and the results have been overwhelmingly positive.

Here are some other things that the Family Advisory Council does:

  •  Meet with new residents the very first day of their residency and talk to them about what it’s like to be parents of chronically ill kids and the importance of communication.
  • Meet with fellows who have been through residency and are now seeing patients in clinic and let them ask us questions about challenging interactions with patients and parents.
  • Host an annual Grand Rounds that usually surrounds communication between patients, parents, and providers.
  • Review public health documents before they go out to the public, to make sure that they make sense, that they have  met their goal of communication.
  • Review plans for new spaces to see if there’s anything that might have been missed (more electrical outlets or hooks for coats for example.)
  • Facilitate workshops on the difference between being “courteous” and “helpful” for front desk staff, because it’s possible to be very polite but not the least bit helpful at all.
  • Interview key new staff members who will interact with families, like nurse managers, etc.
  • Sit on standing committees in the hospital including Ethics, Quality & Safety, Inpatient Satisfaction, etc.

The idea is that if parents are a part of multiple systemic areas of the hospital, that the whole experience, for every patient and family, is better, because parents have been a part of the process.

This has been an evolution, each step was challenging.  Just a few years ago I asked if I could be a part of interviewing for a new position and was resoundingly told no.  Change has also been over a long period of time.  I’ve been the parent of a chronically ill child for eleven years, and all of this work is voluntary, and I have a job on top of that.  Other parents on the FAC have similar stories.  You have to have the will and the drive to make the hospital a better place and you have to find champions within the hospital who are willing to see the change as innovation.  Sometimes, that means being abrasive or sitting through discomfort.  A lot of change relies on trust, and trust needs to be built both on the personal level and on the institutional level.  It’s a partnership.

I’ve put this list here not because I want to trumpet our horn, but because these are concrete examples on how your hospital can move forward toward more patient and family centered care. I learned of a lot of this though an organization called The Institute for Patient and Family Centered Care. They are a non-profit organization that helps hospitals really self-evaluate where they are on the care spectrum and how they can move forward.  They’re having an international conference this summer in Baltimore Maryland.  I’ll be there.  If you come, please come by the poster session and say hi.

In a world where health care is already scary, its really great to minimize problems.  Having patients and parents be a part of the planning for systemic care can help to minimize those problems, but because this hasn’t often been done in the past, it’s often met with resistance.   Work through the resistance.  Sit with the discomfort.  Move forward together with trust.  Become a partnership.




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.




Happy Birthday Wendy’s Welcome!

It’s been one year since Wendy’s Welcome to the ED has been released.  The video, which was written by Wendy and myself and animated by Payette Architecture Firm, is an introduction to the Emergency Department for pediatric patients.  Wendy is the animated narrator for the nine minute film.  Here are some of the reviews we have received in the last year from the Child Life Specialist who works in the Emergency Department and has collected comments:

11year old – “It let me know about things that were going to happen and that I would have to talk to a lot of people.  My favorite part was learning about the special light in the room.”

Numerous children– Upon entering the exam room “Where is the rainbow light?”

10 year old Chronic patient- “It is cool that a kid, like me, made this!”  I could see his little wheels start turning, wondering what he could create to help other kids too. 

10 year old-  “I know what you do (talking to child life) because I watched the video.” 

15 year old-  “The most helpful part was telling me about all the people I will meet and that I might have to wait a long time”.

4 year old- “ I know I need to change into these (pointing to hospital pajamas). I saw it on TV.”

Paige Fox, R.N., CPEN   “It’s really great to be able to offer our patients a video that teaches them about the emergency department from the voice of a child.  Wendy explaining her own unique experience seems to help kids understand what to expect and make their stay with us go more smoothly.” 

Ari Cohen, MD, FAAP  Chief, Pediatric Emergency Medicine- “It is a perfect example of what can be achieved when good people come together and listen to the ideas of a child.”

Dr. Cohen recently mentioned to me that “Everybody that has seen the video is impressed (meaning ED leadership)and it is being used as an example of what is needed to help the adult patients manage their expectation for their ED visit.” 

The video never would have been possible without the support of the Family Advistory Council at MassGeneral Hospital for Children.  Sandy Clancy, the co-chair of the FAC, helped to keep the project going by setting up committees and getting upper administration to view it and sign off on it.  It was her work in the hospital and Payette’s work outside the hospital that kept the project moving forward, and we are forever thankful to them both.

Wendy’s Welcome has been viewed over two thousand times this year on the Massachusetts General Hospital Website.  Wendy has been interviewed by local news stations and magazines about the video and other hospitals have contacted us for ideas on how they can create their own welcome videos for their pediatric patients.

It’s changing medicine and it’s changing how providers can manage expectations for their patients.  It’s also opening doors for more patient and family participation on the systemic level of health care.  Cooperation between patients and their families with their doctors leads to favorable outcomes across the spectrum.

It has also won three awards.  The Patient’s View Institute honored Wendy last year with the Partners in Care Award and also honored Payette with the Patient Champion Award. In addition, the Institute for Patient and Family Centered Care honored Sandy and me with a Partnership Award for cooperation between patients/families and hospital staff.

What a year!  We are so grateful that Wendy’s Welcome is making such a positive impact on healthcare!



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.

When to Divorce Your Doctor?

I was hot.

I was furious at Wendy’s endocrine practice.  This had been the third time in four years that I couldn’t get Wendy’s school orders without multiple phone calls that required phone trees and leaving messages on answering machines and waiting for someone to get back to me, multiple times. Every delay each year was for  a different reason:  wrong address, new medical management system, most schools start after Wendy’s school.  But I had had enough.

I decided that I needed to look elsewhere for another place for Wendy and for me.  This just wasn’t working for us.  This divorce has been a long time in coming, but like real marriages, there are positives and negatives to a medical relationship.    It’s when the bad outweighs the good, that you can safely feel like it’s time to walk away and join another practice.

But I didn’t want to do it just because I was angry, and it wasn’t because I had gotten bad news that I just couldn’t accept.  An important thing I learned is that in medical relationships, as in most relationships,  you can’t expect perfection, but you should expect to feel satisfied with the way you are being treated.  And I didn’t feel like we were being treated well.

Add to this the fact that Wendy’s actual endocrinologist was leaving for another opportunity, so we felt like if we were going to make a move, that now would be a good time, because we were going to have to meet and use a new doctor anyway, so we might want to consider going to another facility all together.

Luckily we had many other options, living in a city like Boston.  Not only do we have our hospital, but there are two other pediatric hospitals in the city.  Additionally, we have the Joslin Diabetes Clinic, the oldest and most prestigious medical center for diabetes in the world.  We had a lot of choices, and Michael and I really weighed them, because all of them were good options.

We decided to go with Joslin, because like Mass General Hospital, Wendy could transition from a pediatric patient to an adult patient within the same institution.  Also, since Joslin is a clinic and not an inpatient facility, Wendy’s hospital home would still be Mass General (as she would still see nephrology there.)  Finally, with Joslin there was an opportunity to possibly be part of new and interesting clinical trials that used a large sample size available to Joslin.  Taken all together, it was worth a try.

To be clear, we did not go down in a blaze of glory, when we left the endocrine practice, we just called Wendy’s primary care doc and stated that since Wendy’s doctor was leaving that we’d like a referral for a new doctor at a new clinic.  We made the appointment at Joslin with a new endocrinologist, a new Nurse Practitioner, and a dietician.  We were told to expect to be there all day and to bring Wendy’s records.

The night before the appointment, I was really nervous, because it was the first time in a long time that we were dealing with new doctors in a new place.  I may have punched the printer in the morning using colorful vocabulary because it wouldn’t print Wendy’s labs from the patient gateway.

Ok, I may have punched it twice.

And the drive there was awful, it’s in a super-congested part of the city, there’s no good way to get there.  I thought to myself, “This better be amazing, because to drive here four times a year is really going to suck.”  Parking was just as bad, and there ‘s no coffee shop, no food of any kind in the building.

But the nurse practitioner was great.  She was patient and she answered all of our questions.  Wendy liked her right away.  She looked at Wendy’s numbers and made a few small changes, and then gave us all of her information as to how we could get a hold of her personally, not through multiple phone trees and receptionists and answering machines.

Wendy said that she felt like she knew this nurse practitioner more in the fifteen minutes we spoke to her than in the many years she knew the endocrine nurses at Mass General.  She also admitted, later, that she might have felt better about the new nurse because she wasn’t super sick when she met her, and because we already knew about diabetes.  Both observations were astute especially for a teenager.

When we met the doctor, who had been a fellow at Mass General, she complimented Wendy on her video for the Emergency Department, because she had been at the Grand Rounds where Wendy spoke about it, and she remembered to say something to her about it.  This had an instant effect on Wendy.  It was a great way to build rapport.

We broke for lunch and walked around the corner for sandwiches, and Wendy was excited to go to a new place to eat. When we go to Mass General, we often go to the same restaurants, as if in a rut.  Partially it’s because it’s easy and it’s comfortable. But Wendy really liked trying somewhere new and said so.

We arrived back to the clinic in time to meet the dietician.  Wendy really liked what she had to say. They went over her daily intake, each meal, each serving.  She helped Wendy come up with a plan to eat a little more calcium, a little more protein, which involved a cup of high protein chocolate milk with dinner.  Wendy was thrilled.  I gave in to the pressure and we now have it in our fridge.  It’s a little treat that makes Wendy feel like she’s in more control of her life.  Oh, and it’s chocolate.  At dinner.

After we got home, and after dinner, we all sat down together to debrief the day and figure out if we really wanted to make the change.   We decided we did.  Wendy liked the staff and felt heard.  I felt like Wendy was getting positive messages from adults that weren’t just me and her dad about her diabetes.  I also liked that Wendy was taking a little more control of her health, even if it included extra protein chocolate milk.

I called the old endocrine practice and cancelled our next appointment.  I just said we have decided to go with Joslin instead since Wendy’s doctor is leaving.  I need to decide if I’m going to write a letter to them explaining that we just didn’t feel like we  were getting the attention we needed with hard to attain answers to questions, no meetings with dieticians, and no real transition as Wendy got older.  I need to figure out the right tone, because we were grateful for the care we got when Wendy was younger, it just didn’t feel like we were being supported as she was entering her teenage years.

I’m still thinking about that part.

Divorcing your doctor is hard because you’ve built a relationship and sometimes it’s all you know.  But if you don’t feel like you’re being heard or taken care of, it’s worth it to look elsewhere.  You already know what you have, you don’t know what is possible.  So go find out, gather your data, and make a decision.

I wish you luck, whatever you decide.  It’s not easy.

It’s harder, I think, when it’s your kid, because you want to do the best by them, even when you’re not exactly sure what the best thing is.  Hopefully,  you can decide together.


We Cannot Lose Hope

I have been watching the world this week, and despair has begun to creep in. I remember this feeling, when Wendy was super sick, this feeling that it was all so overwhelming, that I didn’t know what to do, or where to begin.  It is a feeling of paralysis, like an elephant is sitting on your chest.  It is not knowing where to begin, and fearing you never will.

But the one thing I have learned in the ten years of being the mom of a chronically ill kid, it’s that the only thing you can’t lose is hope.

What is hope?

Hope is looking at the situation for what it is, but realizing that there is still room to make it better.  Hope is taking stock of reality and moving forward.  Hope is keeping the belief alive in your heart that there is still possibility.


Like love, hope is a noun and a verb, which makes it special.  You hope things will improve.  You hold hope in your  heart.  You get the idea.

When Wendy was in the PICU, hope was that she would go to the floor.  When she was on the floor, hope was that she would get released.  When we were home, hope was that she would improve.  When she improved, hope was that she thrived.

I did not lose hope.  It was always in a special place in my heart.  It’s still there.

The events of Charlottesville were a shock.  To see such hatred opened a dark space in our national consciousness, one we previously wished to not see.  There are other demonstrations across the nation tomorrow, and it is possible that they will end in violence.  People I had previously thought to be good and decent have taken the side of hatred, have rationalized it, have tried to shrug it off.  I stand in disbelief that we continue to have the problems of racism, antisemitism, sexism, Islamophobia, and xenophobia in 2017.   It’s like I’m waking up to a nightmare every day to see citizens of the United States openly fly the Nazi flag from their front porches.

I have thought about taking my girls to a rally tomorrow, because I want them to see that it’s important, to stand up to hatred.  But the Boston police have just issued warnings, to wear helmets and goggles, to bring masks.  That’s not peaceful protest, that’s preparing for war.  And I’m scared that I won’t be able to protect them if things go wrong.

But I still hold hope, and I have learned that hope can exist in small spaces and small actions.

And so we will make signs and we will post them outside.  We will create a flag.  We will talk about racism.  We will hope for a better tomorrow, a better September, a better 2018.

We cannot lose hope.

Sometimes You Win, Sometimes You Lose, Sometimes It Rains.

I’ve been thinking a lot about sportsmanship lately.  We  witnessed great teamwork and sportsmanship at the World Transplant Games in Malaga, Spain.  As I said in my previous post, I’m just so pleased that Wendy, and the rest of us for that matter, get to participate in these events.

The thing about the Transplant Games, is that every participant has a second chance at life, and so they are taking it.  That doesn’t mean that they are going to win their sport.  The games are competitive, but the point is that they’ve already won just by being there.  They are present because someone donated an organ and saved their life.  So, it really is a celebration of life, more than anything.  The competition is secondary, but let’s face it, it’s the reason we are all there; we can’t just sit around and think about how lucky we are all the time, we have to do something with it.

Wendy was asked at the World Transplant Games if she would fill in for a woman from Team USA for a swim relay.  Wendy was happy to do it.  But on the day of the relay, the woman decided that she was going to do the relay anyway.  You see, she was a double lung transplant recipient, as was her twin sister. They both had cystic fibrosis and both had double lung transplants in their twenties.  Her twin sister had died a few years ago.  This woman knew that this was likely going to be her last World Transplant Games, and even though she wasn’t feeling so hot, she wanted to do the relay.  Wendy will likely have many more World Transplant Games ahead of her, but for this woman, the experience was finite and she said as much.  Her mother and husband were there to cheer her on, and she wanted to complete what she had set out to do.  She swam and did well.    We cheered them on.  They didn’t win the medal.

It’s hard and yet an honor to bear witness to these moments, and to listen to these athletes acknowledge and give voice to their very real mortality.  It makes the athletic achievement more memorable knowing all those people have triumphed over their illnesses just to be there, knowing that they might not be back.  It’s humbling to know that your kid is in that boat as well.

It also allows you to see the big picture, and for your kids to see it too.

A few weeks later, Wendy was in a normal, healthy, kids triathlon.  She came in third for her age group, a fantastic feat.  But when it came time to announce the winners, Wendy’s name wasn’t called, and a girl who had a slower time was announced in her place.  Wendy looked at me, and so I went to the officials to ask what had happened.  It turned out that because of her transplant, she was in a different category in the computer, a category of one.  There was a mistake, but that other thirteen year old girl had already been given her trophy and was on her way home.

Wendy did not shed a single tear, did not display anger or frustration.

The organizers of the triathlon were apologetic, and wanted to announce her name anyway, announce that she was a kidney transplant patient and that she still came in third.  Wendy wasn’t interested in any of that.  She didn’t care that her name wasn’t called, she didn’t want it announced about her kidney.  She quietly shook the hands of the organizers and celebrities behind the grandstand, thanked them, and wrote down her address so they could send her a trophy.  That was it.

I was just as proud of her for that moment as I was during the World Transplant Games, when she won the gold medal for the 100 meter dash and broke the record for the games.  Why? Because she didn’t ruin the moment for anyone else, because the acclaim wasn’t the important part, but the recognition of the accomplishment was. She wasn’t a sore winner, or a sore loser.  She could see the big picture.

As we were driving home from the triathlon, I thought of the quote from Bull Durham, “Sometimes you win. Sometimes you lose.  Sometimes it rains.”

You just keep going, because you can.

And you’re grateful.


World Transplant Games: Community

We’ve recently come back from the World Transplant Games, in Malaga Spain. It is a bi-annual competition where transplant patients from around the word gather and compete in athletic events.  This year, over 1500 competitors came from over 50 countries.  Some teams had over 300 participants, some teams only had three participants.  All of them came to make connections and create community.

It used to be that people would identify themselves solely by the place where they were born, and while that is still true, people also identify themselves by who they are and what they’ve done, and they look for like minded people who share their experiences.   But what happens when you have a rather rare experience, like getting a solid organ transplant at a young age?  Wendy knows very few kids who have shared her experience, and she sometimes feels like a party of one.  It’s been important to Michael and Me to help her find her community.

The World Transplant Games are a great way for her to meet people from around the world who are just like her.

She competed in swim and track events. During those events, she met girls her age who also had organ transplants, but who were from Italy, Britain, Hungary, or Australia.  She and they would introduce themselves and gather before competitions, and then when it was time to compete, they would.  Then they would gather back together and giggle and exchange addresses.  All these girls, who were once gravely ill, who take medications multiple times a day, from all over the world, sharing this experience at the age of thirteen.

I don’t know what you were doing at the age of thirteen, but I was wondering if my mom could bring me to the Mall to meet my friends. I was not hanging out with kids from around the world who had organ transplants, and then competing my heart out when it was time.

Across the board, this group of girls broke world records in swim and track.  They are determined, they are fast.

Most of all, they are both defined by their transplants and transcend the commonly held belief that they are “sick kids”.  They are not.

They are warriors.

Then there is the group of men and women that Wendy met through Team USA.  We had over 150 competitors from all over the country.  They ranged in age from just younger than Wendy to members in their seventies.  They help to show her that yes, life has its ups and downs, but that you keep going.  I think (as a mom) that it’s super important for kids to get positive messages from adults who aren’t me, because at some point our kids turn our voices off.  So when Wendy was a part of the 4 x 100 relay race with women who were kidney, lung, and heart transplant patients, who taught her how to receive the baton, who showed her where to line, up, and who were her loudest cheering section while she ran, well those other women were real role models for her, and I am forever grateful to them.  They probably didn’t even know they had done anything.

In the coming days, I will be writing another post about Wendy and her individual journey at these games.  I’m super proud of her, and of her journey.  But this blog post had to come first.  This is a community worth celebrating, people who truly are living their best lives since they’ve been given a second chance.  Competitors who radiate gratitude at the ability to feel good and come together to compete.  A community that  supports each other, celebrates each other, claps for the person who comes in dead last as much (if not more) as the person who wins.  Because, and I say this without hyperbole, they have all won just by being there.

Wendy is lucky to be a part of this amazing community.

I am grateful to witness it.

Please Ask Me About My Bikini

This summer, I will be wearing a bikini.  Not because I lost a lot of weight.

I haven’t.

Not because I have a burning desire to wear a bikini again.

I don’t.

The reason is because I have two daughters, and I want to show them that bikinis are ok, no matter who wears them.  Short, tall, skinny, fat, no matter the skin tone or the cellulite.

Let me tell you how hard this is for me.  I haven’t worn a bikini since I was in high school.  I’m not a small woman.  I don’t especially like to be looked at, especially when I’m in a bathing suit.   I couldn’t find a single picture of myself in a bathing suit, even though I lived across the street from the ocean for all of my childhood and went to the beach almost every single day.

Like most women,  I am very conscious of my weight, and am a product of a lifetime assault by the media about what my body should be.  I was on my first diet when I was in the third grade.  I read all those teen magazines trying to determine my shape and size.  I’m a pear, by the way.  I went through the low fat phase, I’ve joined Weight Watchers and LA Weight Loss.  Until this last house purchase, I didn’t own a full length mirror because I never especially liked what I saw, so I chose not to look.  Like our President who gives women a number, I graded myself with letters.  I was an A-B-C:  A intellect, B face, C body.

My parents have also always been on a perpetual diet, trying to lose weight for the next event:  reunions or cruises or the next beach season. My mother went through the slim fast phase, the cabbage soup diet, the grapefruit diet, the magical drops diet.  You name it.  They also were especially helpful monitoring my diet as a kid, limiting my portions, especially of sweets.

Since I’ve had daughters, I have tried mightily to not transfer my weight issues to my girls.  Our goal as a family is to eat healthy foods, make good choices, and stay active.  I’ve been in road races and triathlons.  I swim at least once a week.  The girls are active in team sports and individual competitions.  We don’t have women’s magazine in the house.  We don’t even have a scale in the house because I didn’t want the girls to see me worry about my weight.

So it came as a surprise to me when my daughter, Wendy, didn’t want to wear a bikini.  She’s thirteen, very active, and pretty self assured.  She also swims competitively.  The thing is, that a bikini would be so much easier for her because she has two medical devices on her body because of her diabetes:  an insulin pump called an OmniPod and a continuous glucose monitor.  A one piece bathingsuit is harder to get on and off and has a much better chance of knocking off the devices, causing lots of trouble (our insurance only covers so many applications per month).

Because she’s thirteen, I thought maybe it was a body image thing, as in, she’s got all these new curves now, so maybe she’s not exactly sure what to do about them.  So I talked to her about it, saying I really wanted her to try a bikini, that I’m sure we could find one she was comfortable in.

She replied no, over and over again.  It turns out that she doesn’t want people to see her scars.

Wendy has a constellation of scars on her abdomen.   The right hand side is from some intestinal surgeries.  The left hand side is from her kidney transplant, and the star shaped scar on the top is from a peritoneal dialysis catheter.  The truth is, you don’t really notice them, at least I don’t.  They’re not ugly or red or jagged.  When she’s examined by surgical residents at the hospital, they look at them in wonder, like they’re kids looking at the window of a candy store.  Those scars, to me, show me that she is a warrior, and they’re something to be proud of.

But she was afraid that people would see them and ask her about them, and she would be forced to give her whole medical history at the pool or the beach.  I get it:  that’s a lot for a thirteen year old.

So we made a deal.  If she was willing to try on some bikinis, and found one she liked, that I would wear a bikini too.  I told her, “Don’t worry kid, If I’m wearing a bikini next to you, nobody is going to be looking at your scars.”

Well guess what? She didn’t just find one bikini she liked, she found two.

So…I’m not going to lie…..I panicked a little.

I am ashamed to admit that my first instinct was to go on some radical diet, but what exactly would that showcase to my daughters?  That only perfect bodies wear bikinis?  Wrong.

I told some of my best friends, who had a myriad of reactions. Some sent me suggestions that were over the top, ridiculous.  Star Wars themed, gold mesh, or string bikinis that  were smaller than a tissue. I wouldn’t be able to blow my nose on a triangle that small.  Some friends asked me if I could take it back, go back on my word, or wear a tankini.  That  would reduce Wendy’s trust in me, so I couldn’t do that.  Some friends shared their own insecurities or their negative body image.  Some friends applauded me.

Buying a bikini wasn’t the easiest thing in the world, but I found a lovely size 12 black bikini with white polka dots.  I bought a lovely cover up to go with it.  I’ve got a hat.

One thing is certain:  I’m going to need a lot more sunblock.

I’m not going to say that I’m going to love every minute  of wearing this bikini in public.  But I am going to “fake it until I make it” with confidence.  That is the very least I can do for my daughters.

I want them to know that their bodies are beautiful and powerful and theirs alone to love.

So this summer, if you see me, and I’m in my bikini, please ask me about it.