The Importance of Traveling

I was born with traveling in my genes.  My grandmother, who came of age during the depression, was a world traveler.  She would send me postcards from everywhere, written in her tiny script, and tell me all about the amazing things she’d seen.  I pasted them up on the wall above my bed in my pastel pink bedroom.  She would send Christmas Cards, with her on a camel in Egypt, or on an elephant in India, or on a donkey somewhere in the Yucatan.  One year was her parasailing, another water skiing.  After retirement, she spent her winters teaching English in Mexico, and her summers being a tour guide on Block Island for a light house.  She taught me that travel was possible no matter what your age or situation.

I started independent travel early, in my teens, and by the time I was thirty I had been to twenty-five countries, many of them with my boyfriend, then husband, Michael.  We were married in Italy in 2001, with fifteen wedding guests in attendance and gelato to eat directly afterward.   Wendy had been to Italy before she was a year old, the little old ladies lifting her up before asking my permission, calling her a piccola piccola (little, little),  allowing us to eat dinner without worry.  Wendy had her diapers changed in dilapidated Welsh Castles, she skinned her knees in the courtyards of French Chateaus.  She was given a time out once where Leonardo Da Vinci studied the mechanics of flight.

Then Wendy got sick.

I remember thinking that it was effectively the end of our family travel, that we were never going to travel the way we used to, ever again.  There were too many medications, too many medical devices, too many things to measure and calculate and take care of.  How could we possibly do it?  I told my father in law to cancel his annual gift to us, which was a subscription to Conde Nast magazine, a magazine of travel destinations that we really could never afford, but we could dream anyway,  and at some point, I thought we couldn’t even dream anymore either because it hurt too much.

Then, after Wendy’s kidney transplant, she said for her “Make a Wish” that she wanted to go on a Disney Cruise.  We talked to her doctors and they gave their blessing.  So Make a Wish set it all up, Door To Porthole.  A limo picked us up and took us to the airport.  We took the Disney Express from Orlando’s airport to the boat.  The boat took us to the Carribean.

And you know what?  The only word for it was that it was magical.  Not only did it fulfill Wendy’s wish, with a big boat with a pool and shows and movies and activities, but it gave us a chance to be a family again, together, relaxing, laughing, going on excursions. Everything didn’t have to be reactionary or just for survival.  It showed us that living was possible again, that maybe travel was possible again.

So we started small, and we learned a lot of lessons along the way.

A trip to Colorado.  There were some problems, headaches and vomiting.  It turns out she had altitude sickness.

A trip to Canada, that landed her in the children’s hospital in Vancouver and our first interaction with standardized health care.  She had a virus.  We learned that the US is the only country in the world that measures blood sugar this way when we told the doctors that her sugar was 127 and they all gasped.  Lesson:  bring a conversion chart.

A trip to Aruba, where the Insulin Pump went bad and we had to go back to injections and long term insulin and carry around ice packs for her medicine.  Lesson:  get an apartment, make sure there is a refrigerator.  Lesson:  have the pump company on speed dial.  Lesson:  carry double the supplies than you expect to use.

A wedding in Scotland, with a side trip in the Chunnel to Paris.  We were stopped in Heathrow because of all of her liquid medications and missed our connection.  Lesson:  get her medical letter translated, carry both copies.  Lesson:  get a longer connection time.

A trip to Italy with her grandparents, where after parking at the bottom of a hill town and walking up, we realized that we didn’t have any candy or juice to replace Wendy’s low blood sugar.  It was a saint day so the town was packed and no one would feed us without a reservation.  Lesson:  Learn to cobble together a way to say “My daughter is a diabetic and I just need a juice for the sugar,” in the local language.

Skiing and realizing that the diabetic monitoring devices don’t work in frigid temperatures.  Lesson:  keep the devices closer to the body, check blood sugar in the lodge.

I know what you’re thinking.  You’re thinking how can this still be fun with all of that worry, with all of those things to remember, with all of those unknowns?  Here’s why I think it’s still important to travel:

Travel in a foreign country evokes a sense of wonder.  Watching my kids navigate in a foreign language, figure out a metro map, make decisions about dinner, try something new, see something they’ve only ever seen in a book, all of those things are amazing.  Swimming in the Mediterranean Sea?  Drinking a soda while looking at the Eiffel Tower?  Walking in Stonehenge?  Who doesn’t want to do that?

It’s important for them to be uncomfortable sometimes so that they can see that other ways are possible.  People drive on the other side of the road in England.  Toilets and sinks look different but have the same function.  The same ingredients are used to make very different national meals.  All of these lessons are valuable and teach flexibility and resilience.

It’s also important to have them see us, their parents, be able to navigate in uncomfortable situations.  Michael and I are good travelers, but unexpected things happen and we need to make decisions. We need to negotiate with cab drivers, or tour guides, or cut something out of the itinerary. We need to lay low for a day because someone isn’t feeling well. We need to take more frequent breaks in the day.  It’s good for the girls to see us communicate with each other, deliberate what we are going to do, make a decision, and move forward. So much of everyday life is routine, it’s important for them to see that happiness is still possible even when things don’t go according to plan.

Finally, we keep traveling because we love it.  It’s worth the extra effort.  It’s worth the extra planning.  Sometimes things don’t work out.  But those moments that do work out, those magical moments where we climb the Leaning Tower of Pisa, or look at the Mona Lisa, or watch a local festival that’s been performed since Medieval Times, those are the things I want my kids to remember.

And I want them to remember that obstacles can be overcome, even medical ones, to keep living the way they want to.  It just takes more planning and thought.

Photo:  Checking Wendy’s blood sugar while skiing in Snowmass, Colorado, at 8000 ft elevation.

 

 

 

 

What If I Don’t Know the Answer?

For a number of years now,  I have had  the honor of speaking to the brand new residents at our hospital.  These are often young doctors who likely graduated from Medical School, top of their class, in May.  I speak to them sometime in the third week of June, giving them enough time to pack all their worldly goods and travel to their placement between graduation and new residency.  They begin seeing patients sometime around July 1st.

A large proportion of these doctors do not have children of their own.  So they are experts on the anatomy and physiology of a child, but not necessarily experts on how to talk to them, or how to talk to their parents.

I get to speak to them on their first full day.   It says a lot about the administration of Massachusetts General Hospital for Children, that on the first day of the new residency, these new doctors speak to parents.  It sets the tone that the hospital is committed to family centered care.  It means that they are serious about good communication between doctors, patients and parents.

Every year, a few of the parents from the Family Advisory Council go together to this rather informal discussion.  We all introduce ourselves by way of our child’s illness.  We are what is known as “frequent fliers” in the hospital world, or kids  who are often in the hospital.

On this day, the first day of residency, we talk about bedside rounding.  As its name implies, bedside rounding occurs around the child’s hospital bed.  Everyone comes in and has the discussion together:  doctors, the child’s nurse, a pharmacist and the family.  The lead resident gives an introduction about the child and and her illness, and then discusses what they have done and what they need to do before discharge can happen. They will often discuss specific lab and test results.  Then they make a plan for the day, ask if there are any questions, and then move on to the next kid.

But it is a very different experience when doctors are talking among themselves and when they are talking to families.  Families haven’t gone to medical school, they don’t know the lingo.  They don’t know that afebrile means that the child doesn’t have a temperature.  They don’t know that emesis is vomiting. They don’t know what the thousands of maddening acronyms mean.  So the residents, who have spent all of this time learning all of these official terms, need to rethink the way that they report when the family is there.

The new doctors also have to deal with the fact that the parents, normally the ones who are in charge of every action and detail of their child’s life, are feeling helpless and scared.  That the child in the bed is also feeling that way, along with being in pain or discomfort.  The terms of the situation make matters worse.  No one is at their party best, so to speak.  Parents deal with this in different ways. Some parents don’t want to know anything technical, they just want the doctors to fix it as soon as possible so they can leave. Some parents want to know everything, down to every acronym and decimal point, so they can figure out what is going on.   Sometimes parents are hostile or sharp with the doctors as a defense mechanism.  Sometimes they burst into tears.  You never know what you’re going to get.

The temptation is to race through the bedside rounding, to cut corners, or to not answer all of the questions that the families have.  After all, these doctors are in charge of multiple children, multiple illnesses, hundreds of balls in the air on any given day.

We, the parents, are there to say that bedside rounding is important, even when it’s uncomfortable, sometimes especially when it’s uncomfortable.  We are a team, all of us, and we all need to be on the same page.

A team relies on trust.

Which brings me to my favorite question, that is asked every year:

“What if I don’t know the answer?”

These new doctors are used to knowing all the answers.  They are used to being the smartest person in any given room. They have encyclopedic memories.  They have been tested and they have been victorious.  But what happens if, for some reason, they are caught off guard and don’t know what the answer is to a question that a parent or a patient asks?

They are afraid that they will look like a fraud.

But who in the world knows all the answers anyway?  That’s not why they are there.  They are there to find the answers. They might not know them all.  And if a team is built upon the mutual trust of the participants, it is up to the doctor to say, “I don’t know the answer to that, but I will find out and get back to you.”  And the key is to follow through and do that.  They will win the respect of the family if they make that combination of confession and commitment to the truth.

It’s important to say one more thing, and we as parents say this every year too.  When we are all together in the hospital room, we are modelling behavior for our children. We are showing our chronically ill children, who will one day grow up and have to speak to doctors all on their own, how to be empowered to do so.  We are showing them that trust in medicine is important, that integrity is important, that bonds form when everyone is present in the discussion.

It is important to parents of chronically ill children to address the issue, try to fix it, with honesty and integrity, and to model this behavior for our children.  If you think about it, that’s the way life should go, but especially within the confines of a vulnerable situation like a hospital room.  Everyone needs to feel heard, everyone needs to feel respected, and great things can happen.

 

 

 

 

Transplant Games: Competition and Camraderie

Here are a few stories from the Transplant Games:

At the Track and field events, there are three girls and a high jump.  Two of the girls have never done the high jump before and it’s a fairly steep learning curve.  They are in competition with each other.  One girl has had a kidney transplant, one has had a liver transplant, one has had a heart transplant.  They are all 12-13 years old.  A man who is a living kidney donor and competed in high school gives them some pointers.  A man who is a liver recipient and his wife (who is also his donor) stand and watch along with family and friends.  The girls each try it a few times and then begin the official competition.  They cheer each other on. They encourage each other when they miss.  Eventually, they falter, place, and then later in the day meet at the podium to get their medals.  They hold their hands together and aloft in a winning pose, all smiles.

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At the swim competition, there are all shapes and sizes of people, all ages, all nationalities.  One man is missing a leg and still competes.  Older competitors are giving pointers to younger ones.  When the men line up on the swim blocks, you can tell what organ they got by the scars on their torsos:  vertical across the chest is a heart transplant, a loopy W shape along the rib cage is a double lung transplant.  A liver transplant is an upside down U across the abdomen.  A kidney is a vertical line along one side.  When someone was way behind in the races, the cheering gets louder for that person, rising to a crescendo when he or she finishes. When awards are given, you have never seen a person so happy as one who has been given a second chance at life and then wins an award for an athletic competition.  Some cried on the podium.  Some whooped with joy.  It was like they had won the lottery.  And, in fact, they had.

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The youngest competitors at the track race(ages 2-5) ran a 25 meter race.  The weakest of the runners was in a walker, and his dad had to help him.  It took him nearly three times the amount of time to cross the finish line than the other competitors, he struggled for every meter, with his father literally helping him move his legs to go forward.  The crowd gathered around him and cheered him on until he crossed the finish line and into his mom’s arms.  The crowd went wild when he finished.  The father stopped, held his arms up,  and thanked everyone.

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Wendy competed in the 100 yard dash, and is considered pretty fast.  Some little girl from Philadelphia beat her by a four-tenths of a second.  Competition for the pre-teens and teenagers was fierce because these kids fought with everything they had.  It was a tough race anyway, and then when you realize that the entry fee was a transplant of some kind, it was almost unbelievable.

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We met a woman from Georgia on the ride back to the hotel from the track and field event. She had gotten a heart transplant three years ago and decided to try the transplant games. She had a congenital heart defect so she had never been able to be athletic, but she trained and she tried her best. She said to me, “I didn’t place or get a medal, but never in my life have I been able to cross a finish line. Today I did it TWICE!”  Her brother had come all the way from Albany to watch her because he had never seen her compete for anything in the athletic arena, and they both cried at the end because they were so overwhelmed.   Then the woman saw Wendy and said, “You’re the girl who ran to get the award on the podium for the 1oo meter dash and then ran right back to compete for the long jump.   I’ll never forget that as long as I live.”

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I wasn’t sure what to expect by going to the Transplant Games with Wendy.  I had hoped it would be a good experience, but it was really amazing–beyond amazing–I wish I had the right word.  People from all walks of life, from all over the country, with a thousand stories of hardship.  Older people helping younger people not just in athletics, but also showing that even when life is difficult you can still go on.  Younger people competing hard but still cheering each other on.  People taking inspiration from each other, supporting each other, celebrating the victories.  The gratitude of a second chance.  The celebration of a second chance.  A community built around competition and camaraderie.

Wendy did really well at the games, she got a lot of medals, she placed in almost all her events.  And yet, that’s not the important part of the trip.  Even if she didn’t place, even if she was dead last, she would have garnered so much from the experience, and in the years that follow there will be times that she doesn’t feel well, doesn’t place, because her body isn’t cooperating, or maybe she’s on dialysis, or maybe she’s recovering from an illness.  There will still be a place for her at the American Transplant games, that’s what is so encouraging, and fulfilling.  It is a community of people that know the highs and lows of organ transplantation because they’ve lived it too. That is the best gift that  has been given to Wendy I think.    That is the best experience.

Photo: Wendy competing in the long jump, also for the first time.  She placed second.

 

 

“A Difficult Decision Was Made”

A room full of people, a room full of stories.  That’s what we encountered the other night.  It was the opening ceremony of the Transplant Games in Cleveland, Ohio.  Attended by over 6,000 people from 40 different teams around the country, there were recipients, living donors and donor families, a term given to those who lost loved ones and even in their time of acute grief, decided to donate their loved ones’ organs and tissue.  You can read the open letter I wrote to Wendy’s kidney donor’s mother here.

The emcee for the evening started the event by saying, “We are all here tonight because a difficult decision was made.”  It’s important to get it out there right away, because it was the elephant in the room.  Everyone was there because of a donor.  Now there are living donors, and that is no small feat, someone who willingly gives a piece of themselves, literally, to keep someone else alive.  They are not only honored at the games, but they are invited to compete as well.  More than that, however, are the donor families that need to be honored for their loss.  Lives were cut short, and lives were extended.  Just because it is a celebration of life, hell, the name of the event is the Donate Life American Transplant Games, doesn’t meant that there aren’t hundreds of people hurting because they have lost someone whom they loved. They wore their loved ones on pins, they posted their pictures on placards, they wore necklaces.  I spoke to a woman who told me all about her son who died when he was in his early twenties, and she said to me, “His friends are all getting married and having kids and I miss him every day. Every day it hurts.”  The emotions will always be raw for them, but it helps ( I hope) to have them see that their loved ones helped to extend the lives of so many more.  That’s what the games are all about.

This was the first time we went to the games and I had to really think about what we were going to say about donor families and what “giving life” really means.  Before the opening ceremonies we talked a little with the kids about Wendy’s donor and how he died and how his parents decided to donate his organs, and that it was likely that they were going to hear a lot of those stories tonight.  The stories would be emotional, but they are powerful and important to bear witness to them.  And, of course, we could talk about it after if they had any questions.

But this is hard stuff.  Life is messy.  This topic is something you don’t often talk about, and here we are sitting in a room full of people, an AUDITORIUM of people, talking about it.  When a story came up on the screen about a father who donated his son’s organs after he had an asthma attack, Penny leaned over and said, “This is one of the stories you warned us about, Mom,” as she held my hand.

Here is the thing that goes along with this knowledge, that people died and their organs were donated:  Palpable gratitude.  An auditorium full of grateful people:  recipients and those who love them.  Families and friends.  Whole teams of people who have gotten together to celebrate this extension of life.

And these people are competing and attempting sporting events they might not ever have done before, because they were given a second chance.  I have lots more stories, there will be more blog posts about these games because I’ve learned a lot in the past few days about  community through resilience, about the power of multiple generations coming together, about giving voice to the pain and the grief and the gratitude all at once.  About how your story is just a part of the thousands of other stories, creating a mosaic of meaning.

I’m going to say one more thing before I close.  Register to be an organ donor so that your loved ones don’t have to make the decision.  Over and over again, I heard how much easier it was for them to donate their loved ones’ organs because they knew it was what the person wanted.

Don’t make your loved ones make that decision.  Make it for them, so they can just follow your wishes.

More to follow.

Photo:  The Auditorium at the Donate Life Transplant Games, waiting for everyone to arrive.

Don’t Count the Days

“Don’t Count The Days, Make the Days Count.”  This is a quote by the late, great Mohammad Ali.  There were a lot of amazing quotes by him, all dragged out this weekend when it was learned that he had passed away.  One of my favorites, though, was the “Don’t count the days” quote.

As you know by now if you’ve followed this blog, I’ve got a chronically ill kid, who has gone through various stages of wellness.  When we were waiting for a kidney transplant, we decided to move closer to the hospital.  Wendy was on five different blood pressure medications and a medication for her heart.  Besides that she had medications to help her kidney function, and of course, she was a diabetic.  So, in a nutshell, she took fourteen different medications in a day, by different routes (patches, oral medication and injections), in different combinations, about every two hours, around the clock.

She was four years old.

You can imagine my shock, dismay, and utter fear when she decided that she wanted to play soccer.

We didn’t know if we could do it.  Could we manage  the medical part and keep her safe while letting her play soccer?  Was it even possible?  Could we emotionally handle it, knowing that her body was already going through a ton of modifications just to keep living like a normal kid?

It would be so much easier for everyone if she didn’t want to do it.  But she wanted to play, she wanted to play BADLY, and we wanted to make it happen for her.

We spoke to her doctors and their answer was:  If she wants to, let her do it. Her body will tell her when she’s had enough.

So we did, with some guidelines in place.  She could play sports that weren’t a ton of contact…..so ice hockey, or football, or even gymnastics were out.  Of course we had her insulin and sugar at the ready.  We also had a glucagon with us, which is an injection in case she passed out. We had snacks.  We packed up her medications and gave them to her at her normal times.  We filled out the waiver with all of her medical history.  We agreed that one of us would always be at every practice, every game, every time.

We held our breath, and we let her go.  And, the child has NEVER looked back.  Here she is, three months from a kidney transplant, playing soccer:

 

She got her kidney transplant.  The next year,we found out that she was fast.  In fact, she won first place for her age group for the mile run the first time she ran:

Which eventually led to the swim coach asking her if she wanted to swim competitively, and guess what? She did.  Guess what else?  She was good at that too.  Here she is with her continuous glucose monitor on her arm at the suburban championship, where she placed first for the backstroke:

Oh, and did I mention that my kidney transplant recipient, diabetic child decided that she wanted to do triathlons?  Yep.  She won those too:

The point was, and still is, that these things terrify me.  Truly.  But Michael and I have never put limits on what she can do.  If she wants to do it, if she wants to try it, we are there as a team to support her.  And she has shown us, over and over, that she is a tough competitor who has this inner drive to succeed.

And we are there, every practice, every game, every time.

It’s a huge amount of support.  Wendy isn’t a drop and go kid, I can’t run errands or go to the supermarket while she is playing.  I have to be there.  And when she goes down, when there’s a problem, I totally want to rush on that field and take care of her.  But I take a breath and I let the coach handle it, and if the coach calls for one of us, we go over.  We do not keep Wendy like a china doll, because that’s never what she wanted to be.  She is making the days count.  We are making them count with her.

And I have to say, that Wendy has set a good example for our younger daughter, who also plays soccer and races in triathlons, who also is tough as nails and who wants to be just like her big sister.

I’ve been reflecting on this because this week we will be traveling with Wendy to the American Transplant games in Cleveland, Ohio.  This is our first venture into the national scene of competition for Wendy. It’s like the Olympics for transplant patients.  I want her to do well, but I’m also just so grateful to be going, to be a part of it, because it’s what Wendy wants to do. She is a competitor, she is a fighter.  She always has been.  And we will be there to support her.  I imagine that I will have a lot of reflections from the American Transplant games. This is just the first.

Don’t count the days, make the days count.

Photo at the top:  My girls after a kid’s triathlon, enjoying some ice cream.