Every Storm Runs Out of Rain: Emerging from Virus Lockdowns and Vulnerable Populations

How are we going to end the COVID-19 virus lockdowns?  When are we going to go back to normal life?  You are surely wondering this, and your children are certainly asking you!  My teenager and ten year old would like to go back to their soccer games and birthday parties, and to be honest, so would I.  We miss human connection, and the opportunity to be with our tribe.  We miss pot lucks and barbecues, bake sales and tournaments.  We miss it all.  We even miss the things we used to complain about.

People are getting antsy in their second month of home confinement.  The common consensus is that with time, testing and slowly phasing out stay-at-home restrictions that we as a country will get back to normal.  I hate to be the one to break this to you, but this is a very rosy scenario, one that doesn’t take into account states and cities that are harder hit than others.  There’s no magic wand.  It’s not going to all go back to normal all at once.  In fact, it may not ever look the same in our lifetimes.

Most experts are saying normal life won’t resume until 2022.  That’s a long time. I have had a lot of anxiety about re-entering society.  As the mom of a child with multiple medical issues I’m worried about entering society too soon.  My daughter is one of the 20% of Americans who are considered “At Risk,”  along with cancer patients, diabetics, and people with auto-immune disease.  We already live with unpredictable futures and social distance.  We call it the Cost of Living Vibrantly.  If she gets sick, we go to the hospital. If one of her friends or our family gets sick, they notify us and we stay away. We’ve missed family gatherings at Thanksgiving and Easter multiple years due to family illness.  She’s been hospitalized over her birthday and Memorial Day. Everything can be dropped at a moment’s notice,  and though it is disappointing, it is necessary.  My daughter Wendy is exceptionally good at rolling with the punches, and it has served her well throughout her life because she’s missed out on a lot of events.

I’ve recently read a quote from Maya Angelou, who was quoting from a Country song:

“Every Storm Runs Out of Rain.”

It’s a version of “This too shall pass,” the idea that nothing is permanent, that nothing will last forever.  Winston Churchill once famously said, “If you’re going through Hell, keep going.”  But as I was thinking about the Maya Angelou quote more, I got to thinking that maybe we should think about some areas of the country right now as being rainier than others.  If New York City is suffering a deluge, South Dakota is in a drizzle.  Storms cancel events like concerts, soccer games, and other social gatherings.  When the rain or snow clears, and blue skies break through, people can start to go outside and see their friends.   It will be easier to reopen some parts of the country than others, and this is clearly an oversimplification, but it can in some ways be helpful. The question, “Should I go to Boston for my doctor’s appointment?” can be answered with the response, “Nope. Still too rainy.”

People, too, can be too rainy, or can have their own personal rainstorms. I like to think of Olaf from Frozen with his own personal flurry.  Where we live in southern Massachusetts might be ready to reopen, it might be considered “sunny,” but for my daughter, as well as for other people in the “At Risk” population, there’s still a chance for storms.  So we decide to stay home.  There will be a million situations in the next two years when we need to make this kind of decision, and a million situations among all the other twenty percent of people who have a medical condition.  It will be a patchwork quilt of decisions concerning risk and reward.

I would love it if our leaders considered a special recommendation for the “At Risk” population, to know when it’s safe to venture out.  When one out of every five people has a reason to stay inside, it makes sense to know when it’s Partly Cloudy, Chance of Rain, or a violent storm.  The combination of what the rain outside will be, along with personal rain clouds of people, will allow us to make better decisions.

I chafe at the idea that some people are posing that my child’s death, or the death of an elderly citizen, a war vet, or someone with underlying health conditions is an acceptable risk for the country to reopen in order to save the economy. I’ve spent a lot of my life keeping my own daughter alive.  There needs to be special measures put into place to protect as many citizens as possible, for as long as possible.  As I said in my last post, the people who are determining acceptable risk consider their “only” is actually my “everything.”  While I understand there is no playbook available on how re-opening is supposed to go, I beg the people who make these decisions to keep the At Risk population in their calculations for re-opening towns, cities, and states.

Please press your elected officials to consider the At Risk Populations when looking to emerge from Lockdown and stay at home conditions.  Thank you.

 

 

Fear and Resilience: Extreme Social Distancing

Greetings from Northern Vermont,

It has been a crazy week, and I’ve had some time to reflect.  Last week there was a confirmed case connected to Wendy’s high school, and as per her doctor’s recommendation we pulled her out, got a doctor’s note, and began the process of getting her tutored.  I asked if we could get the tutoring remotely because I planned on bringing her up to Vermont to ride out the coronavirus up here.

Because of Wendy’s multiple medical issues, even though she is young and in shape, she is in the twenty percent of people who are at high risk. It hurts my heart when people say that “only” twenty percent are at risk, because their “only” is my “everything.”  When I had spoken to her doctor, she laid it out very clearly to me:  there  is no vaccine, there is no treatment, and if you end up on ECMO, you are going to die, because they can’t do anything else.

So as far as I was concerned, we needed to keep her safe, no matter what.  She and her sister are my everything, not just a portion of the at risk population.

When Wendy called me on Monday morning (3/9) because of the coronavirus case connected to her school, I had just arrived in my parking lot of my own school (I am a middle school teacher at a private school a few miles away.) I informed my front office that I had to go back, told Wendy I would drive around to the back of the school, and then bring her home. She hasn’t been back since.

I then went to my own principal, and together we worked out a “remote teaching” schedule. The computer teacher put a large screen in my room, and colleagues manned the room on their prep periods while I taught classes from my house. This way, I wasn’t bringing home the virus to my daughter without knowing it.  I taught this way for the remainder of the week, until the 13th, and now the school is on our regularly scheduled vacation.  I am so indebted to my colleagues for doing this for me.  But to be honest, I still wasn’t sleeping.  I was worried that my other daughter Penny or my husband would bring home the virus.    We began to cancel social engagements left and right, soccer practices, karate classes, yoga, etc.  My husband asked to work from home, but still had to go in a few times to check on things.

I pulled her younger, healthy sister out of school on Wednesday after Governor Baker said that students would not be penalized for their absences, and when I asked for guidelines on how to teach Penny I was told that teachers were instructed not to give out any work, or any guidelines.  Schools have since been closed by the governor until April 7, but they have not been given any work, and will not be given any in the name of equity, but also because teachers’ unions don’t want to set a precedent.  Wednesday night President Trump gave his Oval Office address and the NBA shut down for the season.  Stock futures plummeted.

On Thursday, 3/12, after I taught my online classes, we made our way up to Vermont.   I had packed the car early in the morning.  Five days’ worth of clothes for each of us, lots of arts and crafts, a few puzzles, some food items I knew Michael wouldn’t eat, all of Wendy’s medical supplies, some games, school books, snow pants and outdoor gear, and yoga mats.  I made clear to the girls that there would be no stops.  No bathroom, no gas, we were travelling door-to-door.  After we unpacked at my parents’ house (they are not here, they’re snowbirds, splitting their year between Vermont and Florida,) I looked to see what they had and what I would need.  The answer:  they didn’t have that much and I was going to need to do a lot of buying.

This was a setback, as I had already prepared our house in Massachusetts.  Now I had to recalculate.  I already had all of Wendy’s medical supplies, but we pretty much needed to get all the food, and I was planning on being here for a month.  We went to the supermarket and bought enough for four weeks of staying here.  People looked at us like we were crazy.  Who needs all that food?  We do, because I don’t plan on going back out.

Here’s the deal.  There are people who have coronavirus with no symptoms, or minimal symptoms, and after testing, scientists at Princeton have found that the coronavirus can stay alive for up to three days on stainless steel and plastic.  So someone who doesn’t know they are sick can leave the virus on an object three days ago, and my kid can get sick from it today.  That’s terrifying.

Moving up to Vermont was strictly a numbers game.  There are fewer people in the state of Vermont than there are within the city limits of Boston.  More people, more potential illness. Fewer people, less potential.

But when I see citizen continue to go to amusement parks, and wearing green to go to  Saint Patrick’s Day parties at bars, or being told to continue going out to dinner, all I want to tell them is PLEASE STAY HOME.  Your social distancing will lead to fewer cases all at once, and fewer cases all at once means that our medical system won’t collapse under the strain.

My friend Susan lives in Rome, and today (3/17) I was going to fly on a plane and visit with her. She works at the UN, in the FAO, and I was going to speak to a committee there about foodborne illness, which is originally how Wendy got sick.  Through her unfortunate experience of living in the age of coronavirus in Italy, Susan has been coaching me on what to expect, how to prepare, and when I suggested Vermont, she thought it was the right move.  In Italy the medical system has collapsed, and the entire country is in lock down, because Italians didn’t take it seriously, didn’t act fast enough. 

We can do better.  We have to do better.

Thank God my parents have this house.  Thank God I have access to it.  Like everyone else, I’m trying to navigate the daily activities of my kids so we all don’t go crazy. We have a schedule, they have academics, and I’m grading papers and working toward my virtual schooling that I will be transitioning to.  We go for daily walks, we are working on a 1000 piece puzzle of Star Wars. After dinner we play UNO and watch something on Netflix on a laptop. (My parents don’t have cable.) We eat lunch and dinner together, and I’m trying to teach them to monitor their snacks, how to do laundry, and how to entertain themselves.

I’ve started offering yoga every morning at 9 am on Facebook Live, as a way to connect to the outside world, and it’s nice to connect to my friends and bring something good into their lives, because like them, I’m in self-isolation.  But for us it’s pretty extreme and the potential consequences are dire.

Honestly, I’m finally sleeping again because we are here, though I miss my husband who is still at our home, with our cats, and who isn’t sure when he will be able to make it up.  Wendy thanked me when we got here, she had been worried too. The girls only want limited knowledge of what is going on in the world, and they don’t want me to talk about number of deaths.  so a lot of that information I have to keep to myself.

Wendy has mentioned to me that in a way she feels like a princess in a tower, like in the fairy tales. I think that’s an accurate way of putting it.  It’s better than being a princess in a hospital bed.  So I guess if we are working through the roles of the fairy tale, then I’m playing the part of both the knight and the dragon, protecting and guarding the kids.

I have no way of knowing what will happen, I can only do what I can to protect my kids.

Please, don’t go out unless you need to.  Practice social distancing so kids like my Wendy, and families like my family, don’t have to practice Extreme Social distancing.  We are scared enough every day as it is.

 

 

 

 

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.

Happy Father’s Day to all the Kickass Dads Out there.

Father’s Day is a hard day for my husband, because it was on Father’s Day 2007 that Wendy first announced she had a stomach ache.  That stomach ache turned into a life threatening bacterial infection, that turned into cascading organ failure, sepsis, and an eventual kidney transplant, abdominal surgeries, and a variety of secondary diagnoses.

I can understand why he doesn’t like the holiday. But I wish he would get over it because he’s a kickass dad and we need to celebrate that.

When Wendy was in the hospital, over 200 nights as an inpatient, he spent almost every single night with her.  They had their own routine: They would walk me down to the entryway, come back, set up the beds, brush teeth, get in pajamas, and then read Harry Potter.  While in the hospital they read almost the entire series.  After hours they would sometimes go for walk in the hospital, to the PICU to see the fish tank, or to look in the gift shop window.  When I arrived in the morning with coffee, we would both stay to listen to rounds and then he would head back to our hotel room to take a nap, because honestly how much sleep did he honestly get on a tiny bed in a hospital room?

When Wendy was released, and the family still had to live in Boston to be close to the hospital, my husband looked for an apartment that we could afford and where I would be comfortable being there alone with her.  He found one that not only fit those requirements, but also allowed for a free shuttle back and forth to the hospital. Then he went back to work in Vermont, working three twelve hour days at work, and driving down to Boston for the long weekend, and to relieve me a little bit of the child care.  When he was offered a new job, even though he was worried that he couldn’t commit to it entirely because of Wendy’s health and said so, his boss said, “So you’ll be at 80 percent the first year, and you’ll make it up in the  coming years, I can live with that.”  And so, Michael took a new job as we waited for a new kidney.

When I found out I was pregnant with our second child, also while waiting for the new kidney, I was terrified of telling my husband, because I was scared that it was the one thing that would put him over the edge.  But he was so excited, so happy, that I couldn’t be that worried.  Ok, I was still worried.  New job, new kidney, new baby, in that order.

Now we’re in the present, with two girls who are relatively healthy and stable, and he goes to every sporting event, every recital, every activity.  He arranges the family schedule and sends me and Wendy our invites.  He is his happiest when he is watching his girls perform, especially sporting events, but also for music recitals and art shows.  Everything else comes second to those things.

I am lucky to have a kind and caring partner, who loves being a dad as much as this man does.  Our road has been bumpy with health problems and moves and changes of jobs, but he remains constant.  And so, I really really want to celebrate him on Father’s Day, even if he doesn’t want to be reminded of it, because it’s what started all the trouble, but in its own way, it also started all the grace and greatness of this man.

Happy Father’s Day to all the kickass dads, especially those who are fathers of chronically ill kids, or those who carry an extra burden as a single dad. The world doesn’t give you enough credit, but I certainly do.

The Heroes We Need

I don’t know what I thought motherhood was going to be like so many years ago, but whatever I thought it was, I was wrong.

I recently ran across this quote from Joan Ryan, author of the book, The Water Giver:

“Motherhood is about raising and celebrating the child you have, not the child you thought you would have.  It’s about understanding that he is exactly the person he is supposed to be.  And that, if you’re lucky, he might just be the teacher who turns you into the person you are supposed to be.”

Of course this reminded me of the quote from Batman, our kids aren’t the heroes we deserve but  the heroes we need.

A few weeks ago, I was fortunate enough to hear the remarkable story of Ario Nour and his family.  Ario had a brain tumor and had to go through a therapy that requires you to remain perfectly still with a mask on your face as you are put on a medical bed in a room, alone, while you have targeted radiation therapy.  It’s called proton beam therapy, and it’s necessary for little kids, to zap the tumor but save the precious brain tissue surrounding it.  As you can imagine, this can be terrifying and many children need anesthesia to undergo this treatment.  The problem is, this isn’t a one time treatment, it’s five days a week for many weeks.  That’s a lot of anesthesia.

Ario, at the age of seven, was very clear when he began his treatment:  he didn’t want anesthesia every day, he would find a way to stay still all by himself.  And he did.  The nurses and social workers were so impressed with him that they had an idea:  Maybe Ario could teach other kids to lay still too.  He tried mentoring another child. It worked.

And this peer mentoring program was born. Kids with brain tumors teaching kids with brain tumors what to expect, what to do, how to lay still.  To practice at home, before the treatment, kids try lying on the couch for increased amounts of time, often with something over their faces, like a washcloth or a spaghetti strainer.  They are allowed to listen to music, books on tape, or something else that will keep them occupied.

Then they get their mask specially made to form fit their face. They get to decorate it, and they use it every time they get treatment.

Other kids, after going through treatment and surviving, went on to mentor other kids.  They are proud to be the experts at something, and to show newbies who are sick and scared that they’ve done it and succeeded. That it was possible.

And the program grew.  It wasn’t just one kid helping one kid. It was a program.  Ario had started a peer mentoring program.

I got to hear him talk at the Family Centered Rounds at Massachusetts General Hospital for Children. Ario has had to go back three times for more treatments.  (Read:  He’s had more than one brain tumor.)  Now he’s in high school, and he’s a normal kid.  Smart, shy, humble.

His parents spoke too.  Not only do they support Ario’s efforts for the peer-to-peer program, but they also support and ride with him for TEAM ARIO, where they ride their bikes 50 miles in the Granite State Quest and raise money to fight pediatric cancer.  Ario and his family have raised over $300,000 and Ario has been honored as one of “The One Hundred.”  It’s a dinner that honors one hundred people at Massachusetts General Hospital who have worked hard to fight cancer.

As I listened to this story, truly an inspirational story, it’s important to remember, Ario isn’t cured. He has recurring cancer.  And his parents have this burden to carry, something no parent ever wants to deal with.  And yet, here they are, parents of a child who started a peer-to-peer program, who’s raised hundreds of thousands of dollars, and yet, who is still chronically ill.

He’s not the hero they deserve, but he may be the hero they need.

Of course, Ario is a dramatic example, but think about your kids and what they have taught you. Have they taught you patience?  Selflessness?  Sharing? Have they taught you how to communicate better or how to fight more fairly?  Mine have.

I’m including the video of Ario here, for you to watch. Grab your tissues.

And take a moment to think about how your kids have changed you for the better.

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!

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.

 

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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.

CAREgiving, defined

We will all be CAREgivers at some point in our lives, whether it be to a parent, a spouse, or a child.  When you are a parent of a chronically ill child, it is likely that your CAREgiving duties will overlap, because your child needs constant care, but other people in your life get sick as well.  It can feel overwhelming and isolating all at the same time.

I’ve been thinking a lot about what being a caregiver means, and I’ve come up with a helpful acronym.  A CAREgiver Coordiantes, Advocates, Manages Resources and Educates:

Coordinate.  You coordinate your child’s care.  You arrange for doctors’ appointments, other therapists appointments, prescriptions, food and drink limitations or special considerations. You calibrate any medical devices that your child needs.  You coordinate the care that is necessary daily, weekly, monthly yearly:  finding the people and the products that will best serve your child.

Advocate.  You make sure your child has what they need to be successful in all areas of their life.  You talk to your school administrators, you request an IEP (Individual Education Plan), or a 504 (Individual Medical Plan).  If your child needs certain accommodations, you arrange for them, whether it is a nut-free table at the school lunchroom, or an extra ramp to enter a room more smoothly. Advocating also means making sure the janitor doesn’t wipe the peanut tables and the peanut-free tables with the same sponge.  In my case, advocating means asking the school nurse to write a letter home at the beginning of the school year to remind parents to keep their kids home if they are sick, because they can put my daughter in the hospital. It can also mean speaking out for other children who have the same medical condition, or one similar.  Additionally, it might mean joining a Family Advisory Council or advocacy group in your child’s specific illness, to make the world a better place in the future for your kid and those like your kid.  It’s a large umbrella.

Resource management.  I don’t need to tell you this.  Medical supplies are expensive, even if they’re covered by insurance.  My daughter wears two medical devices, neither of which are fully covered by insurance.  Also not covered are the tegaderm films that go underneath each device.  Occasionally the devices cause a skin infection, so we have to make sure the certain antibiotic topical ointment that works is always at home and always available.  Her anti-rejection meds are covered by insurance but her supplements (that the anti-rejection meds strip from the body) are not.  Quarterly visits with specialists are necessary, along with their co-pays and the occasional trip to the Emergency Room rounds out the payment.  What isn’t said are the things that aren’t bought or are pushed off because of the payments that fulfill medical need.  I’ve had the same snow boots for twenty years and I live in New England, so they get used.  Most of my clothes come from thrift shops.  Michael wears his shoes until literally there are holes in the bottom.  This is how you make money stretch.  And I consider us to be very lucky, we live a good life, with good food and a warm home.

Educate.  Parents of chronically ill kids are constantly educating. We are educating the other adults in our child’s life:  for birthday parties and sleepovers and soccer games. When the time is right, parents educate their children about their illness and (hopefully) help them slowly transition to self-care.  We often educate the public, bringing awareness to our child’s condition, or the condition of those like him or her.  We also educate ourselves, we are mini-experts on our child’s diagnosis and condition, we keep up on the newest technologies and research studies.

This is what we do both as parents and as caregivers, but it’s amplified when you are both parenting your child, and also are a CAREgiver to them.  Now, add onto the fact that other people get sick too, in the short and the long run. What happens when your spouse or your parent, or God forbid, another child gets an extended illness.  Now all of your specialized training gets stretched or even thrown out the window.  You may know all there is to know about your child’s disease, but you’re not a medical professional, you don’t know all the illnesses.  You need to learn a new language, a new set of doctors, a new protocol of medicine.

It’s a terrible burden, and it’s constantly shifting.  It reminds me of the picture of the world, that is being held up by elephants on the back of a turtle.  It’s heavy, unpredictable and unrelenting.

I hate to be gloomy about this because there are beautiful moments to being present in the difficult moments of your loved ones, but it takes practice to see the beautiful moments, the sunrises and the warm cups of coffee, the smiles and the small favors.  None of us knew what we were signing up for when we decided to become parents, there was no instruction manual or warning label.

I take the month of November as a month of gratitude, and write down one thing a day that I’m grateful for.  Some things are quite large and some are tiny. but it’s an actual daily vigilance, because let’s face it, some days really suck.  But even in the worst days there is something to be thankful for if you look hard enough.

Good luck, CAREgiver.  Try to find something beautiful in each day, something you’re grateful for.