Thanks, Carepages.

Carepages goes dark tomorrow and I am going to miss it.  What is Carepages?  It was a health blog that you signed up for to notify your loved ones about your health journey.  We have used it as a lifeline for the past ten years.  When Wendy was super sick, we wrote every day, sometimes twice a day, to keep our loved ones up to date.  As she got stronger and better, we reduced our notifications.  Recently we only used it to mark big milestones.

The thing I loved about Carepages is that it made you really sit down and take stock of the medical day.  In any given day of craziness, it was good to really evaluate what was good, what was bad, and what were the hopes for the next day. And it buoyed our spirits to get messages from our family and friends telling us that they were thinking about us, praying for us, praying for Wendy.  Hospitals can feel isolating, and it was nice to know that people were supporting us from afar.

Today I spent much of the day copying and pasting all of the updates, over 200 of them, over the course of our 10 year medical journey.  I have to be honest, I wept reading a lot of the updates.  Wendy was so young and sick, and I knew, reading the updates, that things were going to get worse before they were going to get better.  I was so young too, and angry at our situation, the unfairness of it all. In 2007 and 2008 Wendy spent every holiday in the hospital, some 180 days.  I left my job, and Michael took an extended leave.  I slept less than three feet from my parents in a hotel room for months, and it became clear that we needed to move into an apartment.  We had two blissful hours with Wendy in the apartment at Christmas, so she could open up her presents, before we had to bring her back to the hospital.

I marked the day that Wendy’s kidneys started working again, the first time we made it home, the day she coded in the PICU, the day she was put on the transplant list. I read the day of her transplant, and the first anniversary, the second anniversary, the fifth anniversary.

As I read, I also read messages from loved ones who hadn’t gotten married yet, or hadn’t had their babies yet.  Friends who hadn’t gotten divorced yet.  Stalwart friends who were battling their own illnesses and have since passed away.  I am so grateful for those messages, to be able to read them, to be able to keep them.

At some point, Michael and I had decided to make Wendy’s Carepage public, so that other people could take comfort in her story, as I had taken comfort in the stories of others over the years, especially when we were looking for stories of kidney transplants.  We had people follow us from all over the world, and they wrote messages of support as well.

I’m going to miss Carepages, it was a part of our life for a long time. Now in the age of facebook and WordPress, it seems almost quaint to have a blog site dedicated just to an illness journey.  Perhaps that’s why it’s going away.  But it marked our lives.   It marked Wendy’s life, her health, her strength.

Today, Carepages showed me how far we’ve come.  A new town, a new home, a new baby (now eight years old), and new friendships along with the strengthening of old friendships. So thank you, Carepages, for everything, for the good, the bad, and the ugly.

Thank you for the hope.  Thank you for the journey.

 

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Happy Birthday Wendy’s Welcome!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

When to Divorce Your Doctor?

I was hot.

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

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

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

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

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

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

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

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

Ok, I may have punched it twice.

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

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

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

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

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

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

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

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

I’m still thinking about that part.

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

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

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

 

Communication & Hope, Thanks to Hospital Chaplains.

What engenders hope?  Who holds hope?  How can a person foster hope in another?

These ideas roll around in my head, when I am meditating, or when I am exercising. I read about hope, I study it, I read to see what others have said about it.  I know, it’s unusual, but I usually find that when I’m on a project like this, there’s a reason, that things connect to it like a magnet.

Recently, I was sent two pieces of information about Hospital Chaplains, and how they engender hope through communication.  These pieces came to me from different sources, one from the Pediatric Chaplain at Massachusetts General Hospital, and one from the Bishop of the Delaware-Maryland Synod for the Evangelical Lutheran Church.   Both of them saw these items and thought I’d be able to blog about them.  And these stories have been rolling around in my head, along with thoughts about communication and hope.

I know, it’s a pretty messy place inside my brain.

The Chaplain of MGH sent me information about the Wilbert Foundation.  The Wilbert Foundation is a foundation that supports pediatric chaplains of hospitals, with support groups, continuing education training….and they Provide Bertie Bear Boxes.

Bertie Bear

This is Bertie Bear.

Bertie Bear comes in a box that is designed to look like his home.  He comes with a backpack, a note pad, and a maze. These are meant to keep the sick and sometimes scared child busy.  But these are not the most important things in the box.  The most important thing is the white board:

White Board with Emotions.PNG

The white board comes with emotions and a prompt.  So the child can write how he or she is feeling, and why that is.  Imagine if doctors walked into the hospital room and could tell by a glance not only how you are feeling physically, but what your emotional state is too. When emotions go up, vocabulary goes down, it’s hard to talk about how you are feeling.  Imagine if you didn’t have to say it — you could just put a magnet on a board.

Now imagine if you couldn’t speak at all.

That’s when the  other piece of information came to me from Bishop Bill Gohl.  It was about a chaplain who designed a board that allows people in the ICU to express their emotions and ask for simple comforts.  It’s called a spiritual care board, but again, it serves many more purposes:

Spiritual Care Board.PNG

The idea with the spiritual care board is that you can discuss your emotions, and then ask for help. Perhaps you are feeling helpless, and would like to have someone read to you.  Perhaps you are feeling uneasy and would like to have someone hold your hand.  You can point to the pictures, and a caretaker can understand what you want.

Imagine the relief when your emotional pain is registered and attended to when your physical pain is also registered and attended to.  That’s when real healing begins.

When people feel heard, when they are able to communicate, they feel more hopeful that they will get better.  They feel that they can begin to move forward.  These are powerful tools that can and should be used in both pediatric and adult hospitals, don’t you think?

Here is the link to the Wilbert Foundation, to learn more about Bertie Bears.

Here is a link to a CNN story about the Spiritual Care Boards.

Consider mentioning these to your local hospital, or your congregation.  It might be worth a sponsorship from your church, synagogue, or mosque.

More communication is needed in this world.  So is more hope.

 

 

Your Story Matters, Share It

Do you know  how sometimes there’s a synchronicity and you’re not sure what it all means yet, but you know it means something?

That happened to me.

A few months ago, I was asked if I would speak at a college event called “Your Best 10.” They asked 10 people to speak for 10 minutes on a topic they are passionate about.  After a lot of thought, I decided to talk about the importance of sharing stories.  After all, I am a peddler of stories, as a history professor, I feel like that’s a lot of my class and a lot of my life.

But it took me a long time, perhaps too long, to realize that my story was important too.  I always thought that my story wasn’t worth telling.  But a lot of research has been done recently that shows that telling your story is both healing for you, and creates connection and empathy with the person listening to the story, even if that person is not in the room with you.  That is why programs like “Story Corps” or “The Moth” are so successful on the radio.  People like to be told stories, and they stay with you long after the story itself is over.

Two weeks ago, I was at a meeting for the Family Advisory Council at Massachusetts General Hospital.  The speaker was a woman named Dr. Annie Brewster. She is a doctor who has started a non-profit organization called Health Story Collaborative.  It’s a non-profit that facilitates a patient telling his or her story with a person that they can talk to, and audio equipment with which to record the conversation.

Then people can listen to your story in a sound booth or online.

But, what if the person you are telling your story to is your doctor, and the story you are telling is about your health journey?  Wouldn’t that create connections and empathy with someone whom you really want to connect?

This has become a movement in healthcare, encouraging healthcare professionals to take a few minutes and listen to their patients tell their stories, not just rely on the data presented. It has been used as a tool for residents and fellows.  It is now part conferences for medical professionals.

I gave my speech for Your Best 10 yesterday.

Unrelated, today I got a phone call.  I was asked to speak at a Patient Experience Summit at Massachusetts General Hospital.  It’s funny how things work.  First I speak about the importance of telling your story, and then , the very next day, I get a call to ask me to tell my story.

What’s funny is that I don’t think my story is any better or worse than any other story.

The difference is that, now,  I’m willing to tell it.

 

 

Match Day! March 17!

This Friday is Match Day.

Match Day is always the third Friday of March, and it pairs soon-to-be medical school graduates with hospitals for their residency.   These medical students have been interviewed and vetted.  They fill out their top preferences, and so do the hospitals.  Then it all gets sent to a centralized matching service.

The results are this Friday.

After graduation in May, they then pack up their things and move to the teaching hospital that they have been matched with.  The old residents, those who are moving onto fellowships or into private practices, leave at the end of June, and the brand spanking new residents start on July 1st.

It’s an inside joke that the beginning of July is a bad time to get sick.  Now you know why.

Wendy entered the hospital at the end of June of 2007.  By the time we got a handle on who did what, and some familiar faces, they all changed on July 1st.

As a parent, I have a different idea of Match Day and new residency now.  At first I hated the July 1st day, because everything would change, and change is hard.  Now, I go in and talk to the new residents on their first day, to tell them what it’s like to be the parent of a chronically ill kid, to tell them what it’s like to basically be a professional hospital parent.

The truth is, parents know a lot, but we still manage to be scared and feel helpless when our kids are sick and in pain.  We can’t help it, that is the way we are wired.

Another truth is, a lot of new residents don’t have kids yet. They’re in their late 20s, they’re just starting to settle down with a life partner. They haven’t had kids, and even if they do, they might not have sick kids.  Yes, they are super-smart, in fact they are used to being the smartest person in the room, but they might not know how to talk to kids, how to talk to parents, to understand what life in a hospital bed is like, what a hospital room feels like. They don’t know to rely on a parent’s hunch that something isn’t right. They don’t know how to go from technical speech to parent speech, and then to kid speech.

They don’t know these things Yet. But they will.

We are a part of their learning process. We give them space to ask questions.  One of the medical students asked the question, “What if I don’t know the answer?”  Imagine, if every doctor asked that question and was given a safe space to talk through it.

I saw a quote today that said, “Making Mistakes is Better than Faking Perfection.”

Do you know doctors whom you wish had been given permission on their first day of residency to ask that question?

I do.

March 17th is known as St. Patrick’s Day.  Here in Boston it’s also known as Evacuation Day, the day that British Troops Abandoned Boston during the Revolutionary War.

But this year, It’s also Match Day.  I wish those new soon-to-be residents the best of luck, the Luck of the Irish.

I’ll see them at the end of June, to tell them my story.

Related:

Last year’s blog post:  What If I Don’t Know the Answer? (6/20/16)

Impatient, Empowered

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

 

 

That Time We Did StoryCorps

I had this silly idea: Wendy and I should do StoryCorps!!!  It is the NPR and National Archive Project that allows for loved ones to interview each other on any topic they choose.  Some are chosen for the Friday morning slot on NPR, and all of them have the opportunity to be housed in the National Archives.  As a historian, I love this for a number of reasons.  Wendy and I would have our voices in the National Archives.  She could take her grand kids to hear it someday.  And, if you had the chance to hear your grandmother’s voice again, wouldn’t you take it?

I also thought it would be a good chance for us to connect and talk about her illness…..You know, the thing she’s been living with for the past nine years.  We often talk around the subject, or it’s a part of our lives like the furniture, but we don’t often just open it up and examine it.

I knew we were going to be in Vermont during the last weekend of August, after Camp Sunshine, to see my father in a dinner theater/murder mystery/town library fundraiser that was being held in the North East Kingdom.  For those of you who don’t know, the North East Kingdom is the northeastern region of Vermont, which has its own eccentricities, a thicker than usual Vermont accent, and a distinct mix of French Canadian customs.  My parents live a few miles from the Canada border. I love it there for all of the above reasons and many, many more.

The thing about StoryCorps is that you need to register ahead of time and put down a deposit, which I did.  I chose a time the day after my father’s event in Burlington, Vermont.  When I did, I wrote to Wendy, who was away at Diabetes Camp, to tell her.  She misread the email from me and kept calling it “StoryCrops” instead.

So here I had this opportunity that I didn’t want to waste, and I wondered what we would talk about.  I didn’t want it to just be about her illness, I also wanted it to be about her resilience, how the illness is just a part of her, not the whole her.

As per the StoryCorps website, we wrote down our questions ahead of time.  We agreed that we would ask each other three questions, with follow ups.  My questions were:

  1.  What do you already know about your illness?
  2. How often do you think about your illness?
  3. What do you want people to know about you when they meet you now?

Wendy had written down her questions, and she shared them with me too.  Her questions were:

  1.  How was I different between when I was born and when I went into the hospital for my kidney transplant?
  2. What was it like for you guys while I was in the hospital?
  3. Will I ever be able to do normal things like other kids?

It was at that moment I knew that I was going to need a box of tissues to get through this interview.

The morning of the interview came, beautiful in the Northeast Kingdom, the leaves just starting to turn, the blueberries and blackberries just about finished for the season.  We left my parents’ house early because it was about a two hour drive to get to Burlington.  We parked right at the parking lot by the ECHO science center, right on Lake Champlain, with the ferry docks just before us.  The little StoryCorps airstream camper was waiting there for us, but we grabbed lunch first, walking up to Church Street, a cobblestoned pedestrian zone, complete with graffiti that still celebrates Bernie Sander’s magnificent, iconic hair.  We ate ramen and wondered if it was going to rain.  I was nervous and I could tell Wendy was too.  We both have a way of growing sullen before we’re about to do something that stretches us.  We’re not fun to be around, but Michael and Penny continued on like nothing was the matter, making their own plans for what they were going to do while we were recording, mostly going to the lake and playing Pokemon Go.

Wendy and I had paperwork to fill in.  I did most of it, having her sign at the end.  We arranged our questions, and when the moderator came to get us, we were ready.

The mobile sound studio was basically a fast food booth with two good microphones.  Wendy and I sat at either end and got ready.

And you know what?  It was really good.  We had a good conversation, a conversation I want to be recorded, one I want her to remember.  We talked about her illness, and her resilience.  I answered her questions as best I could.  I only cried twice.

It was odd, some of the things I told her, that I had never told her before.  I told her that she coded, and then asked her if she knew what that meant, and then I had to describe it.   “It’s when your heart stops.”  I told her about the boy who lost his life and she now has his kidney.  I told her some good stories and some sad stories.  I am proud to say that I held it mostly together.

We were given a CD of it when we left.  I think I’m going to put it in our safety deposit box.

I’ve included the interview here in case anyone wants to listen to it.  It’s roughly thirty minutes long, and it’s uncut.  It’s more like a podcast, really, something to listen to while you are driving or doing other things.  I could only convert it to a YouTube Video, so it just has the picture from the top of this blog post and the audio playing along with it.

https://www.youtube.com/watch?v=h7SGQCIpvxc

But I really do love the richness of it.  And I’m so glad that we did it.

I’m not sure how Wendy feels about it, or will feel about it in the future.  She was glad it was done and that we went for Maple Creemees afterward (another Vermont tradition.)

14080053_10209100602328912_1944994776563715061_n

If nothing else, it’s something that will always be there for her, even when I’m not.

 

 

 

 

Understanding, But Not Sharing, Despair

I want to get this blog post just right, and yet I’m afraid that I will fail miserably.

But I’m going to try.

I read today about the Short family, a family from Pennsylvania who died of an apparent murder-suicide.  They had a chronically ill kid, a child who had received a heart transplant.  They had been featured in their local newspaper when their daughter Willow received the heart. The story was hopeful, it was upbeat.  There was a future thanks to a generous donor.  People like to think of it as a happy ending, but in reality organ donation is only a beginning.

A year later, the same family was featured in a New York Times article, detailing how hard it is to get the anti-rejection drugs compounded and filled, where it shows a picture of the mom dosing up the medicines, which by the way are the exact same medicines my daughter takes.  We have shared the same terror of worrying that you are going to run out of the medication that is keeping your daughter alive because of some stupid rule made by either the pharmacy or your insurance company.

In fact, up to this point, I know exactly how they feel.  Scared, hopeful, struggling.  There’s not a lot of place in this world for a sick kid.  I’ve said that for so many years now I feel like a broken record.  Not a lot of place, so parents of these kids keep fighting.  Fighting for prescriptions, fighting for 504s or IEPs in school.  Fighting for doctors’ appointments, fighting to be heard by doctors and nurses, by other hospital staff, by pharmacies and insurance companies.  Giving the thumbnail version of your child’s illness to every new person on the phone, every health care worker you meet, every time.

It’s exhausting.

And yet, none of us know what we sign up for as parents, and we have to move forward.  We are not just caregivers, but nurses, social workers, dieticians, pharmacists, and medical managers.  No one is going to do it for us, and no user manuals are included.

There are other kids in the family, kids who might not get as much attention as they deserve because the parents have to deal with the sick kid, the emergency, the crisis.  They are unwitting victims of the tragedy.  That adds pressure, too, the fact that you know you’re not able to be the kind of parent you want to be to all of your kids because there simply aren’t enough hours in the day.

There are stresses with work, normal stresses, but nothing more stressful than the idea of losing your job, because you need those health insurance benefits more than anything else.  So you make fewer waves even if something might be wrong because you can’t afford to be unemployed.  There are sacrifices you make, as little as sleep or as large as a professional life, in service to the illness and the medical needs of the chronically ill child.

All of these problems contribute to difficulty in a marriage.  You promise to love, honor and cherish when things are at their brightest and the future has all sunshine and rainbows, but stress, bills, worry, and problems are unrelenting.  You are constantly afraid that the delicate balance you’ve constructed will get tipped again with an emergency. You are waiting for the other shoe to drop.

Damn, it’s really hard.

The mom in this tragedy blogged about her struggles with PTSD, from dealing with her daughter’s medical issues.  She talked about her survivor’s guilt, knowing that another child died while her child lived.  I can personally attest to that guilt, and have blogged about it before in my piece, Dear Mom of My Daughter’s Kidney Donor.  It is a unique and exquisite combination of gratitude and guilt that parents of kids who have received organs from deceased donors share.

Now there are five dead bodies, six if you include the dog, in a murder-suicide. A family that seemed very public about their struggles, struggles that I share as the parent of a chronically ill kid.  And I feel so many emotions connected to it.  Anger at the futility of it, and anger for the donor family too.  Sadness, a bottomless sadness for the family.  Horrible unrelenting understanding at the dark side of the situation.   Gratitude for the love and support from my family and friends, because through all of the many years now I have never, ever felt alone.

Because the truth is, that while there’s not a lot place in this world for sick kids, there’s not much place in this world for their parents either.  It’s only through the personal connections you have and make that carry you through the hard times.  It’s knowing you’re never alone, that there’s always someone there to listen, laugh with, or help you problem solve.  It’s combating the feeling of isolation with the knowledge that there’s always someone there for you, and you are there in return for them.

Hug the ones you love today and thank them.

My deepest sympathies and condolences to those who knew and loved the Short family.

The National Suicide Prevention 24 Hour Hotline: 1-800-273-8255

 

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.amalfi coast

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.castello gandolfo

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.

noto dome

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.

single gelato

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.

Farmacia Italy-746316

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.