We Brought Our Kids to the Vigil

By now you know about the terrible tragedy in Pittsburgh.  Eleven faithful Jews gunned down by a madman, fueled by rage and social media.  You know that it was the gathering time for a Bris, a naming ceremony for a baby boy, just eight days old.  A celebratory time, a time to welcome that baby into the congregation.

It was an unspeakable tragedy in America.  A collective gasp was heard across the nation, but in my town especially. I live in a small New England town with multiple synagogues, christian churches, and even a mosque. We have an active interfaith community.  To see the news unfold and to see the antisemitism in America grow and go unchecked is terrifying.

I contacted a rabbi in town and asked if there was going to be a vigil and she sent me the information.  It was to be held at the largest synagogue in town on Sunday evening. As I sat down for lunch with my family, before going to Wendy’s soccer game, I told them that we were going to the vigil to support the Jewish community during this time of mourning and fear.  I explained what happened in Pittsburgh and said that it was important for us to go.

The kids didn’t really want to go.  But I pressed the issue, along with Michael.  We said they didn’t have much of a choice.  We are not Jewish. And We were going.

Vigils are uncomfortable.  Looking at death is uncomfortable.  But it’s important for the community, especially the gentiles, to go and show support.  Stand up, show up, and shut up.  Our job is just to show them they are not alone.

As we walked to the synagogue that evening, I held Penny’s hand and told her that if she had any questions during the service, that she should ask them and I would do my best to answer, but to make sure she asked in a whisper because people will be lost in their own thoughts.  We thanked the police officers who were guarding the door for being there.

The synagogue  held hundreds of people and it was standing room only.  We ended up snagging four chairs in two different rows:  Penny and me together, Wendy and Michael ahead of us.  The rabbi of the congregation where we were meeting thanked everyone for coming, stating that just by coming we showed that we were not afraid to be in a synagogue after the violence.

Then the words of comfort from different rabbis of all the congregations in town. There were a few songs that they sung in Hebrew first and then allowed us to join later in English.  One rabbi asked us to be silent for a minute and a half.  Another asked us to introduce ourselves to the person next to us and looking around I saw lots of friends and neighbors, both Jewish and non-Jewish.  After the rabbis, a catholic priest spoke, words of healing and solidarity.  Then the imam from the mosque in town spoke with words of comfort.  At the end, all of the religious leaders stood together on the bema and spoke the names of those who died, and then we all rose and together sang “God Bless America.”

At the conclusion, there were lots of hugs.  The woman in front of me, who was sitting next to Wendy told me how lovely she was.  Penny spotted a friend and ran up to her to say hello.  But overall there were very few children, which was a shame.  There is a fine line between scaring children senselessly and showing them ugliness in the world in a way that has meaning.  Michael and I felt the girls were old enough.

And when I asked Wendy this morning in the car, what she thought, she said, “I think it was good.  It was good we went.  And I think it was important to sit in the temple to think about what happened and to show our support.”  And I realized that it really was the right thing to do, Wendy got it.  She understood the importance.

I felt like our little town got it right last night. I was glad to lend support to resilience, and I was glad my kids were there.  In a few weeks there will be an interfaith Thanksgiving at the same synagogue, and I hope to go with my girls, this time for a celebration instead of a great sadness.

It’s good to show my girls that communities come together in good times and bad times, but especially in bad times.  We all have trying times, but it is community that pulls us through. We stand together and lean on each other.

It’s what communities do.

Holiday Landmines for Kids with Dietary Needs

Happy Springtime!  Well, it doesn’t feel like springtime quite yet for much of the country, but the calendar tells us that the Spring Equinox has already  happened and Passover and Easter are just around the corner.

This can strike fear in the hearts of a lot of parents, especially parents of kids who have allergies or other dietary restrictions.  The reason is because a lot of spring holidays have ritual foods that go along with them, foods that are supposed to be used to celebrate the holiday, either through religious decree or family tradition.

A good friend of mine found out that her daughter has egg allergies. How do you celebrate Passover without eggs?  Its one of the parts of the traditional plate, and it’s the key ingredient for many traditional dishes like Matzoh Brei and Kugel.  It was just inconceivable that they would have to go without eggs during the eight day holiday, where they can’t eat any leavening either. They decided to continue using eggs, but to minimize the use.

There’s no doubt, sometimes you need to get creative if you have a child with dietary restrictions, and this creativity can be seen as assertiveness, not always in a positive way.  Traditions are hard to break.

This might lead to a few family misunderstandings, so thoughtful communication and patience is necessary.  One friend told me of her child’s tree nut allergy and how a lot of Passover recipes have tree nuts in them, so they need to be careful not only looking at the labels, but also informing friends and loved ones to be diligent in their preparations for Passover.  She also finds that she needs to ask on the day of the family gathering to make sure all the rules were followed.  Not everyone loves to be reminded.  Sometimes that means your mother in law might tell you how much better the dish *would have been* if the nuts had been added.  Another friend has a child with celiac disease, so they don’t have Matzoh with wheat in it, and if someone brings Matzoh with wheat, they need to eat it outside.

When it comes to Easter, if your child has allergies, you have to get creative with holiday traditions as well.   A lot of the times that means making new ones with ties to the past.  One friend in Vermont told the story of how she has tried to recreate her mom’s cinnamon rolls using her dietary restrictions.  One friend told of how they make their own food and their own traditions around allergies.  One family only has easter egg hunts at their house because they need to know that peanut free chocolate never touched the inside of a plastic egg.

Here’s a great resource for kids with allergies and Easter Products they might enjoy.

For parents of diabetic kids, you realize quickly after diagnosis, that every holiday revolves around food, and that since all food has a certain number of carbs, you need to keep track. This leads to some awkward encounters…who really wants to count the number of jelly beans for one serving?  Did the child eat one ounce of the chocolate bunny’s head or one-and-a-half ounces?  Do you weigh the bunny before and after?

Suffice to say, the holidays can be stressful. But it’s important to take a moment and be grateful for the things you have:  children who are happy, family who loves you , food to eat, a warm house, and laughter.  The rest are hurdles to be jumped, and stress that comes along with it can be managed. Just remember, parents of Brave Fragile Warriors, you’re brave too.

Whatever spring holiday you celebrate, I wish you the best of health and  happiness!

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.

 

 

Where Unicorns Run Free

My cell phone rang one hot August evening, it was a friend from college.  He and I often text, but hardly ever speak on the phone. I could tell almost immediately that something was wrong.  It didn’t take him long to get to the point.

“Charlotte has been diagnosed with Type 1 Diabetes,” he said, and then “I thought maybe we should talk to you about it.”

We have been friends for twenty years.   He and Michael never lived more than two doors away from each other the entire four years of college.  One summer, the four of us all lived in the same apartment, working random landscaping jobs for extra money.  We had shared laughs and beers, practical jokes and serious moments, accidents and deaths and then marriages and births.  When Wendy was in the hospital, Charlotte’s mom was pregnant with her and she never came, but Charlotte’s dad came and mustered other friends to help.  He brought books and jokes.  He sometimes just sat with us when it was all too terrible for words.  That was ten years ago.

We are still present in each other’s lives.  Michael and Charlotte’s dad go out for an occasional beer after work.  Our kids just recently were in a film together to promote the National Park Service.  When I was approached about looking for kids who would be willing to tromp around Minute Man National Park with tri-corner hats and wooden muskets, I could not think of a more perfect family to share this adventure with.  The kids learned about the Revolutionary War, and the adults got two whole days to sit around together.

Once a year, all of the adults (including other college friends) go out for a giant fondue dinner, three courses, lots of wine, more jokes and more laughter.  This year, due to unforeseen circumstances, I had to cancel at the last minute, and these friends made a “Pocket Darcy”:  a picture of me pasted on a Popsicle stick, to be a part of all of the pictures so I would still feel loved and a part of the night, even though I was reading 300 names at a college commencement that had been rescheduled.

When Charlotte was diagnosed, her parents had an idea that something was wrong, she wasn’t acting like herself on their summer vacation.  But she was diagnosed just a few days before school was about to begin, and so they were thrown into a whole new world of counting carbs, and blood sugar checks and two am wake ups to check it again.  They had to trust the nurse with something they had only just began to tackle themselves.  They were nervous.  They called a few times, and we tried to be supportive.  Michael strictly instructed me to be a good listener, not to give out too much advice.  When I told Charlotte’s dad this he responded, “No, I don’t care how much advice you give, I just want to hear your voice and tell me it’s going to be ok.”  So that’s what I told him.

And it was the truth.  Sort of.

The truth is that when your daughter gets diagnosed with diabetes, your world changes. There’s a lot more structure built into every day, . There are a lot more plans that need to be made about birthday parties and sleep-overs.  There is more worry, there’s no way to sugar coat that.  It’s manageable, but it’s lots of worry.

Charlotte’s mom would occasionally email me for advice, and at some point she asked if Charlotte and Wendy could get together, and I suggested Wacky Weekend at The Clara Barton Center for Diabetic Girls.  I’ve written about the camp before, it’s Wendy’s favorite place, and I thought that Charlotte would love to try it out for a weekend, with just some time alone with Wendy. Oh, and with dozens of other kids who have diabetes too.

Charlotte was SUPER EXCITED ABOUT IT!!!!

Her mom and dad were nervous.  She was only ten; she had never been to sleepaway camp before.  They asked me if I would be the emergency contact for the forms.  Then we decided that maybe Charlotte’s parents should just spend the weekend with us.  Their younger child and our daughter Penny could soak up all of our attention, while Wendy and Charlotte enjoyed camp.

It was a win-win.  We dropped off the girls and then took the younger kids to museums and National Parks.  We had card games and sleepovers at our house.  But throughout the weekend, understandably, Charlotte’s parents were nervous that she would be unhappy. They were nervous that the nurses wouldn’t be used to her.  They were nervous that Charlotte would be homesick, or wouldn’t like the camp, or she and Wendy wouldn’t get along as roommates in a cabin.

All of these worries, while understandable, turned out to be unfounded.

Sunday afternoon, when we all arrived at camp to pick up the girls, Charlotte came running up to her camp, hugged them both, told them how much she loved the whole place, and gave them a tour.  She told them she really wanted to go there for the summer camp program.  She read them her journal that she wrote a few times a day about all the fun she was having, even though she missed her parents.

They cried.  Out of joy and relief.

And I had to walk outside and dry a few tears of my own. Who would have thought that this would be something that we shared too.  Our daughters with the same condition, going to the same camp, twenty years later.

I walked to the fire pit in the center of the camp, where bricks have names and inscriptions written in them along the walkway and around the ring of stones.  Written among the bricks is a poem by Shel Silverstein:

This Bridge

This bridge will only take you halfway there

To those mysterious lands you long to see;

Through gypsey camps and swirling Arab fairs

And moonlit walks where unicorns run free.

So come and walk awhile with me and share

The twisting trails and wondrous worlds I’ve known

But this bridge will only take you halfway there–

The last few steps you’ll have to take alone.  

Our girls would have a whole history without their parents, but with each other, at camp.  They wouldn’t be alone.   They would always have someone who understood what they were going through.

So would their parents.

There was something sweet in knowing that.

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.

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.

 

 

Life happens, adulting is hard, coffee helps.

I was hurrying from my classes the other night, on the way to the launch of Wendy’s cartoon at the Boston Society of Architects.  There were roughly seventy people there, all there to support the endeavor that took over two years to create, from start to finish.  There were some of Wendy’s doctors, some college friends, some neighbors.  There were the architects who worked on the cartoon, some administrative types from Massachusetts General Hospital, and other parents from the Family Advisory Council.  Wendy brought a half dozen of her closest friends, and wore her Christmas Tree hat to celebrate both the cartoon and the season.

If you told me ten years ago that this is what my life would look like, I would tell you that you were patently insane.

Ten years ago I was living in a small Vermont community, with a perfectly healthy, almost-three-year-old daughter.  I had been to Boston for two weekends in my life.  I had never heard of Massachusetts General Hospital, knew exactly one architect, had never met someone who had received an organ donation, and had only heard of e-coli from the Jack in the Box outbreak from 1993.

One year later, my almost-four-year-old was fighting for her life, on more pumps than would fit on the pole, with no clear answer what was causing this massive infection that had weakened her heart as well as all of the damage done to her other organs.  She spent every holiday in the hospital that year and we lived on and off in Boston for a year and a half in hotels, apartments and hospital rooms.

It just goes to show you that you never know what life is going to throw at you.

Now, we live in a different town, we have different jobs, we have additional friends.  I’m on the Family Advisory Council at MGH, we open our homes to strangers through Hospitality Homes, and I’ve met amazing advocates for patients and families in the world of health care.

It has been a very long road, but here are some things that I’ve learned.

Don’t pray for deliverance.  Pray for strength.

Make decisions from facts and not fear.  When you know you are looking to fight another battle, figure out what you need, and then make it happen.  That’s the reason we moved, to be closer to the hospital.  We knew that big battles would come in the future, and we wanted to be as prepared as we could possibly be.

Ask for help when you need it.  There is an ethos in place that we shouldn’t ask for help, but the fact of the matter is that we all need help sometime, and you need to be able to clearly define what you need when you are going through a crisis.  People who love you want to help you, but they don’t know how.  Help them to help you by telling them exactly what you need.

Let yourself feel the feelings, and give them a name.  If you’re scared say so.  If you’re angry, say that too.  If you’re nervous, figure out why.  Once you name your feelings, they have less power over you because when you name them you are no longer ashamed to be feeling them, and shame makes all of those negative feelings double.   Be prepared that others will be surprised when you give a name to these feelings.

Even when you are going through hell, listen to others’ worries and fears.   Really listen. They have hard times too.  Even when you are going through your worst days listen to the stresses of your friends and give them the space to express them.  That is friendship.

Be grateful, even when it’s really hard.  Find things to be grateful for.  Be grateful for the small steps.  Be grateful for the people who support you.  Be grateful for the sunrise.  Tell people how much they mean to you.  Thank people for small actions.  It will help the everyday crap that you have to slog through, because we can escape a lot of things, but not bureaucracy and bullshit.

Be open to new experiences, even when they’re hard and you are worried or scared or nervous.  I actually have to say to myself, “I am open to this moment.  I am open to this experience.”

Give back.  When you’re ready.  When you can.  With what you have.

Know that hard times are going to come.  All of our roads are bumpy.  But while I don’t believe that everything happens for a reason, I do believe that we do the best we can with what we’ve been given, and then we’re grateful for that too.

Teach your kids that these things are important, and not just with actions, but with the words that go along with them.  It encourages you to be a better person and a parent when you actively remember that your kids are watching, they are listening.

Life happens, adulting is hard, coffee helps.

And finally, I’m not sure that being the parent of a chronically ill kid ever gets easier.  It is always scary.  There is always a feeling helplessness.  The difference is, now I know it can be done, whereas before I thought it might be impossible.

That is perhaps the greatest lesson.

Diabetic Misadventures In Italy

I love coming back from vacation and telling my friends and family about it.  Ok, I don’t really love coming back from vacation, but I do love sleeping in my own bed, petting my kitty cats and seeing friends that I’ve missed.  This year was a very special trip to Italy and its large southern island of Sicily.  While there, we visited with family and friends, we returned to the site of our marriage fifteen years ago, and we saw amazing places along the way.

Upon our return to the States, I tell our friends and family about swimming in the Tyrrhenian Sea, about eating at the same restaurant we did on our wedding night.  I talk about the flavors of Gelato, beautiful candy and earth colors of them lined up along the freezer, and of choosing new flavors like jasmine or pistachio-chocolate or green fig.  I tell them about the massive Greek temple ruins that the girls clambered along, about the graceful Baroque churches, or about the bell-towers or domes we climbed to get the best view.  I might tell them about the harrowing drives along the Amalfi Coast, with narrow roads hugging the cliffs or navigating traffic in Sicily where the street signs and traffic lights are more like suggestions than laws to native Italian drivers.  Maybe I share stories of encounters with the locals, like the sausage man who threw rings of salami in the air to the kids and persuaded us to buy a link as long as my seven-year-old’s arm.  These are the stories I tell them.  These are the stories that they want to hear.

But vacations are not all wonderful moments, and when you have a child with special health care needs, you not only have to plan more, but you have to be ready to roll with the punches when they come along, and that’s all a part of the journey, but not a part anyone wants to hear about.

My twelve year old has multiple health problems, but one of them is that she is a type one diabetic, which means that she cannot produce her own insulin to digest carbohydrates.  We have to give her insulin with every meal based upon what she eats so that she will stay healthy.  This has to be given subcutaneously, or under the skin, in order for it to work.

The first moment of terror for me this vacation was when I realized, suddenly, that we had foolishly forgotten the extra insulin for my daughter at home.  We had enough for a week, but we would be away a few days longer than that.  Calls were made to our insurance company, and we discussed overnight shipping, ice packs, and reliable addresses.  This didn’t sound like a good option.  So I learned how to say in Italian, “My daughter is a diabetic, and I would like to buy some more insulin,” Normally, my Italian is limited to restaurant menus and directions to the WC, so this was a stretch. We were in a tiny hill town called Castel Gandolfo, some twenty miles south of Rome, it holds the summer palace of the pope and contains the dairy cows used to make his special milk.  It sits on the edge of an old volcanic crater that now has a lake.  Our apartment looked out over the lake and we could walk the whole circumference of the hill town in under a half hour.  We went to the first farmacia, the Italian word for pharmacy, with a green fluorescent cross outside its door, located in the shadow of the summer palace. The pharmacist understood what I was trying to say, but told me in Italian that he didn’t have what I needed, but not to worry, other farmacias would, I just needed to keep looking.  Ok, onto the next stop.

This was the town of Amalfi, when fifteen years earlier my husband and I got married in the presence of a handful of close friends and family.  We had planned to have dinner at the same restaurant as we did on our wedding night, so we arrived early to the town, walked around and waited for the restaurant to open.  I spotted a farmacia tucked away in a little square.  Amalfi is a seaside community, with steep cliffs and rocky beaches, and I was standing in line at the farmacia with beach goers who had gotten too much sun or mothers that needed more formula for their babies.  But luck was with me, the woman at the farmacia produced what I needed:  a vial of Humulog.  I finally was able to relax knowing that we could take care of our daughter for the whole vacation, and get insulin as we needed it.

Which was good, because we needed it again, in a more dire way.  My daughter wears an insulin pump, and we were in the small Baroque town of Noto in south east Sicily.  We were admiring the large cathedral in town that was showing off its new dome, because the old dome had collapsed in the 1990s and it had just been reconstructed.  The church was beautiful, clean, cream colored, with gorgeous statues along the walls and spacious pews making the whole church feel light and airy.  When we heard the high pitched alarm, we knew immediately what it was, Wendy’s insulin pump had malfunctioned, and needed to be replaced.  I sat in a corner of the church looking at a statue, getting out the medical supplies, and making a new “pod” of insulin so we could put it back on Wendy.  That involves disconnecting the old pump, filling a new one with a large syringe and a vial of insulin, making sure it works, then re-attaching it, and turning it back on.  I wondered if anyone was going to stop me with the large medical bag and beeping equipment, but no one did.    I filled the new pod with the last of the insulin, and then I handed it to Wendy to apply it in a bathroom with an alcohol pad.  Normally I would help her, but Italian bathrooms are notoriously tiny, so she did it herself.

We walked around the lovely town thinking we had dodged a bullet, climbing the bell tower and looking at the magnificent view, but when we found a local trattoria and ordered our dinner, we noticed that Wendy’s blood glucose was too high and gave her a bolus of insulin before dinner.  It didn’t work and she went higher, so we gave her another bolus, but that didn’t work either.  Something was wrong.

It turns out that Wendy didn’t apply the new pod well to her skin and it wasn’t working.  I had used the last of the insulin on the new pod, and we had more in the refrigerator back where we were staying, an hour away.  We were with another couple, a childhood friend of my husband and his family, and we had all visited the town together, had dinner together, and we had promised the four children gelato if they did well in the restaurant.

The problem was that Wendy’s glucose was too high to go untreated and give her gelato too.  It would have sent her sugar up to dangerous levels.  But all of the other kids were expecting gelato, in fact, the town of Noto is supposed to have the best gelato in Sicily.  We couldn’t tell them just wait while we drive an hour to get more insulin, reapply a new pod, hope it works, and drive back another hour.  It was late, it was dark, and the kids expected the best gelato in Sicily.

An option could have been to let the other kids have gelato but not Wendy, but honestly, that would be a scarring memory for her, and while we want her to know that she is extraordinary, we want her to know that she is normal too, that she can do normal things, just like the other kids, and that includes sampling the best gelato in Sicily.  Imagine watching your friends all eating gelato and you can’t at the age of twelve.

Now tell me what you would do as a parent.

So we went to a farmacia in Noto.  I spoke my sentence in Italian.  The first one didn’t have a vial.  We walked to a second one, and thank God, they did.  We opened the box, opened the vial, pulled out an insulin syringe that I also happen to have with me in the medical bag, calculated what she would need to give her to both reduce her glucose and give her insulin for a gelato too, and we filled the syringe, gave her a shot in the arm right there in the farmacia, admist little boys with tummy aches and people who needed band-aids, handed the used syringe to the pharmacist to dispose of safely, and we left the store.

Then we walked to the restaurant with best gelato in the world and ate it.

And it was delicious.

After it was all over, after the alarm, the new pod in the church, the dinner, the two farmacias, the injection and finally the gelato, it had taken the better part of the afternoon and evening, just for one little girl, just for one diabetic, just for one vial of insulin, just for one cup of gelato.

And what was the best part of the day for me?  My twelve year old, when it was all over and we were walking back to the cars after the gelato, ready for the drive back to where we were staying, took me aside by the arm, kissed me on the cheek, and thanked me for going through all of that.  She understood the effort it took, and she was grateful. That’s what I’ll remember, not how hard it was, but how much she appreciated being able to be just one of the the other kids joking and laughing and eating the best gelato in Sicily.

This is not a story I’m necessarily going to share with my family and friends when I get home.  Why not?  It’s not exactly what they want to hear.  They want to hear about the swimming and the churches and the beautiful art, the stories of the crazy drivers and the marketplace hawkers.  They don’t want to hear about the hard stuff, the worry, the difficulties.  Vacations are supposed to be fun, right?

But to me, this isn’t just a vacation, it’s showing my daughter that her medical difficulties can be overcome, that problems can be sorted out, even in another country, even when we don’t speak the language.  That if she really wants something, we will find a way.  That she shouldn’t be held back by the difficulties, but should look at them as challenges to be worked through.  Yes, it’s a beautiful location to learn this lesson, and yes, we are lucky that she’s healthy enough to do the travelling in the first place.  But to me, the travelling is showing her that solutions are possible.

The rewards can be sweet.

Being A Kid Without Explanations

This is the week we begin to pack for sleepaway camp.

Let me tell you, when we first started doing this whole sleepaway camp thing, I was terrified.  First of all, I had never been to sleepaway camp.  My family and I lived at the Jersey Shore, and both of my parents were teachers with the summers off.  So neither of them ever felt the need to send me away, nor did they have the money to do so.

After Wendy had been diagnosed with type 1 diabetes, I did a lot of reading about how to be a supportive parent, and one of the suggestions was to send your child away to a diabetes camp.   As luck would have it, the one camp the book mentioned was in New England, called the Barton Center for Diabetic Girls.  We decided to give it a try.

The Barton Center is a unique place.  It is named after Clara Barton, because her birthplace is on the site of the camp.  You may remember that she was the founder of the American Red Cross.  It’s a camp exclusively for diabetic girls, ages 6-16.  Wendy naturally wanted to go as soon as she was old enough at 6 years old.  At the time, she had been a diabetic for roughly three years and had her kidney transplant about a year prior.

As you can imagine, I was super nervous.  We had never had the opportunity to be away from Wendy since her illness because there were a lot of medications to be taken, as well as monitor her insulin needs.  One of the features of the camp, though, is that there is a doctor on site and a nurse in every cabin, to administer medication both by mouth and with injections.  Knowing that Wendy was going to have that kind of monitoring made me feel a little better.

She was going to go away for the “short program”, which was only five nights.  It’s meant to ease girls into camp without too much worry about homesickness.  Five nights felt like an eternity to me.  What in the world was I going to do with myself?

Packing for camp is its own sub-special category.  Finding clothes for five days that you don’t care what condition they return in, ripped or stained, or better yet, lost.  Sandals, shower shoes, sneakers, a caddy for toiletries, sunblock and bug spray to round out the list.  Oh, and a flashlight, and extra batteries.  All of these things dutifully labelled so that the chances are better that you might get them back.  Ha.

We drove Wendy the four hours from our house in Vermont to camp.  She was excited and nervous.  I was nervous.  We got to camp and had to wait in line to see the nurse.  I had all of Wendy’s medications, i had filled out all of her paperwork, I had signed all the releases.  We had a cold pack for the liquids, a ziploc bag for the pills.  It took twenty minutes to go through everything, and while I did, Michael took Wendy to her bunk to make her bed and place her Teddy.

The time had come, time for us to leave.  Leave my little girl that had gone through so much, that I woke up every morning at 2 am to check her blood sugar, that I had spent every day fixing her meals, counting her carbs, giving her the right medications before and after her meals.  I was handing her off to smiling teenagers and a nurse.  I thought I might just die on the way home.  Wendy was very brave, she said her goodbyes, and went in the cabin, but before we got a few steps, she ran out and gave another hug and another kiss just to be sure.  She had tears in her eyes.  i had tears in my eyes.  Michael did too.

Then we left.

Ok, now it’s time to tell you the first thing we did when we got home.  Michael and I ate ice cream sundaes for dinner.  Mint chocolate chip ice cream, m-n-ms, hot fudge, whipped cream, and a cherry.  Something we could never do with a diabetic daughter.  We also went away for a night to the North Shore of Massachusetts.  We walked around Salem, famous for its witch trials, and popped into book shops and candy shops and read when we wanted to, ate when we wanted to, relaxed with no schedule of medicines or insulin.  We re-set, we relaxed, we re-energized.  Five days later, we were ready to get her.

I was so excited to go get Wendy from Campj I didn’t sleep the night before.  I had missed her, and I was ready to see her.  When we arrived, she was weeping, WEEPING, huge tears coming down her face, and I thought, “Oh My God, what have we done?”  We had made a mistake, she was too young, we should have waited.

Nope.

She was weeping because she didn’t want to leave.

Finally she had found a place where she didn’t have to explain blood sugars and insulin, or be different.  Everyone was like her.  Everyone checked at the same time, everyone got insulin at the same time, everyone knew the deal.  Wendy was one of many, even if she was the youngest one.  And they laugh, and sing, and make crafts, and play silly games, and go horseback riding, and have “hands free dinner” and are just kids without explanations. She had never been so happy since her illness began.  She begged us to let us stay longer, but it wasn’t possible that year.  The next year she went for two weeks, and has continued to do so for the many years after.

If I were to ask her where her favorite place on earth is, she would say camp.

So this week, I again lay out the dozen pairs of underwear, the dozen pairs of socks, the toiletries, the sandals, the sneakers, the flashlight with batteries, the bug spray.  Teddy still goes too.  And I miss her, I MISS HER.  Every day of those two weeks.  But I know that it’s good for her, it’s good for both of us, to have this experience.

(And Michael and I still have hot fudge sundaes for dinner on the first night she’s away.)

Firefighters and Architects

“This will be a new litmus test for your friendships,” he said as we were walking down Cambridge Street. It was a warm summer day, and Mark was his usual affable self.  A friend from college, I remembered that he had the same email address as the doctors at the hospital,  so when I wrote to him, and said, “Hey, do you work at Massachusetts General Hospital?”  he came by the PICU that day and took me out to a bagel shop around the corner from the hospital.  A psychologist by training, he worked at MGH and managed to take us around a little at a time, orienting both Michael and me to the hospital and surrounding area.  He took us to the chapel, the central quad, and the Healing Garden:  a rooftop garden that overlooked the Charles River and had both inside and outside seating.  He brought us a loaf of banana bread that his wife made.  He cracked stupid, softball jokes.  He was just what we needed at the time.

He was right.  Our trauma, the medical trauma of our child, reordered our friendships, reshuffling them like a deck of cards.

There were some people whom we found drifted away.  For whatever reason, they couldn’t handle our trauma with us, whether it was because they had their own more pressing problems, or because they didn’t know what to say or do. Phone calls and emails got fewer and farther apart.    The loss smarted like a sunburn, but we all moved on.

Some people whom we had considered acquaintances, nice people but with whom we didn’t normally hang out, they were a nice surprise because they rose to the occasion, they met us at our lowest place and helped to lift us up.   They helped Wendy, by bringing toys and gifts.  They helped us with food and ideas and cards and hugs.  This was our nicest surprise, and those friendships have survived beyond the initial trauma.

Mostly, though, we found that our friend base, and even our families, fell into two groups:  Firefighters and Architects.

Firefighters rush in. They fix the immediate, broken parts.  They take care of the schedules, the child care, the food, the logistics.  They say, “I’m on it,” and they take care of whatever “it” is with efficiency and without you having to ask again. They are the ones who immediately call. They are there in the trenches with you, helping you to fight the immediate acute battle.  Their actions are their help.

They they retreat when the immediate assault is over.

In move the architects, who rarely are the first to call, but who sit back and wait to see what you will need later.  They are the ones who listen to your problems and offer long term solutions.  Often they are the ones who will tell you the hard truths,  help you make the big life changes,  help you to systematize and reorganize.  They help you to look at the wreckage and begin building again.  They stick around longer.  Their advice is their help.

Let me be clear, you need both of these kinds of people.

Rarely do you have a friend who is both a firefighter and an architect, each person has a  definite strength.  Sometimes a good friend will try really hard to be both, but to be honest, it’s exhausting when you are playing against your strength, and one set of characteristics usually rises up.  We found that often in a couple, one person is the firefighter and one is the architect, which makes sense because they balance each other out.  They are doing the best they can with what they’ve got.  So are you.

Friends and families will get you through the initial trauma, and the after effects.  It won’t be until later when you are looking back that you realize how much they helped.