Storms Make Trees Take Deeper Roots

Fitting into the working world as a mom of a chronically ill kid can be challenging.  I have found that for the most part, part-time work has been the best fit.  It’s flexible, it’s convenient, and it allows me to still take Wendy to doctor’s appointments, or call insurance companies, or figure out prescriptions and durable medical devices, or whatever.  Being the mom of a chronically ill kid can be a lot of work.

But I still want to be a professional, and I have trained to be a historian, or a teacher of history.  For the past ten years I have worked part time as a history adjunct in both Vermont and Massachusetts.  Recently, the college where I worked shuttered its doors.  It was devastating to all involved:  students, professors, and administrators.  We had all been cut adrift with not so much warning; we were told in April that the college would close in May.

So I needed to take stock of what I had done for the past ten years.  I had cared for my very ill child, I had advocated for her in a hospital setting. I had monitored and adjusted her 24 different medications, her three different insurances, and her doctors in three different states.  I had spoken at Grand Rounds, had spoken to medical students and new residents.  I had helped to revise documents released to the public about medical conditions.  I had created a welcome video for children when they arrived in the Emergency Department, sick and scared.  I had lobbied politicians and representatives for medical insurance rights.

Here’s the thing:  no one cared.  No one in the medical world would give me a job based on these qualifications.  They thanked me for my service and after the initial interview I never heard from them again.

I also applied to many different part-time teaching jobs.  I had lots of experience, I’ve taught lots of different subjects, from world history to American history, to Native American, African American and women in American history.  I’ve taught courses on totalitarianism and brought students to concentration camps.  But when I was asked why I worked part-time, my response of taking care of my daughter while working was seen as a liability.  They thanked me for my services and after the initial interview I never heard from them again.

Let’s be clear:  I’ve worked hard for the last ten years.  I’ve had to do things to and with my child that I would not wish on my worst enemies.  I have been brought to the edge of sanity with grief and worry and sleep deprivation.  But as I suspected long ago, the rest of the world does not value that kind of commitment, or organization, or dedication to taking care of my child.  Most people see me as a liability, though I’ve never missed work, I’ve always managed.

I’m an excellent teacher.  I’m an excellent caregiver.  I can be both.  I have been both.

This time has really damaged my self-esteem, because even though being a parent of a chronically ill kid is hard, to be honest, I really thought I had my shit together.  The college closing was like a slap in the face,  the world I had created was shattered like a false mirror, revealing what the rest of the world really knew, really thought of parents of chronically ill kids.

I wondered if keeping this blog, after my experiences this spring and summer, was just an exercise in vanity.  Maybe, I thought, I should stop writing.  But I realized other people, other parents, must feel the way that I do, working the hardest job in the world, and feeling undervalued by society.  So I’ll keep writing, at least for now, or until no one reads the blog posts anymore.

As a postscript, I have found a job, and I really love it.  The problem is that it’s full time, and I’ve been struggling mightily with the other aspects of care.  My chronically ill daughter and her doctors’ appointments and insurances.  My other daughter who is well but seeing less of her mom.  My husband who is valiantly picking up my slack in those departments and whom I couldn’t do any of this without.  I’m sure that these will be other blog posts in the future.

Moms and Dads of chronically ill kids, know that I value you and I know how hard you are working.  I know from experience.  The world may not value the struggle but other parents recognize the hard work it takes to resemble normal.

Keep going.  Storms make trees take deeper roots.

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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.

 

 

 

 

 

“A Difficult Decision Was Made”

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

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

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

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

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

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

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

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

More to follow.

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