Only As Strong as the Weakest Link

I have a twelve year old.  She is chronically ill.  But she’s still twelve, and what I’m about to write is all “developmentally appropriate” but man, it burns me.

For the past couple of weeks, her blood sugars have been erratic.  I had been adjusting, modifying her basal rate, her insulin to carb ratio.  Wondering, is she growing?  Is she getting sick?  What am I missing?

The endocrinologist was perplexed too.  Blood sugar was rising at an unusual time.   Between dinner and midnight.  She asked me, “Is she having late night snacks?”

My answer was no.  But my answer was wrong.

Wendy was having unauthorized snacks after Michael and I went to bed.

I had noticed that some of the food had gone missing, bags of rice cakes, chips, pretzels, but I thought Michael was working late, we’ve had guests, maybe I’d miscounted.  I’d noticed that we were going through more fruit snacks than usual, which we use to raise Wendy’s bloods sugar.  But maybe they were tucked away in bags, for sports or the beach, or whatever.

Nope.

It dawned on  me at 2 am this morning.  2 am is when we check Wendy’s blood sugar every night.  The last few weeks, between her bedtime and our bedtime,  she’d come downstairs a few times, ostensibly to get the cat, or check her sugar, or say hello.  It seemed a little odd, but it was summer vacation, we thought it was just a new schedule, no big deal.

So as we were going to bed last night, she had checked her sugar, and it was 115.

When we checked it at 2 am, it was HIGH, which means it’s so high that the meter can’t read it.

Which means it was over 500.

So, from 115 to over 500 in four  hours……hmmm…..fishy.

I asked Michael if I could see the continuous glucose monitor…..And sure enough, right at the time Michael and I went to bed, her blood sugar skyrocketed.  It was clear, she was sneaking food.

The question then became how to address it.

Here’s what I did.  I took her garbage can and brought it downstairs. Then after she woke up, I went into her room and looked under her bed, behind her bed, in her desk drawers, and pulled out a ridiculous amount of bags and wrappers:

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I laid them all out in front of Wendy, and I asked her what she thought I would say.  Her answers were right:

I wanted to know what she was thinking.

I wanted to know why she did it.

I was going to punish her.

Here’s the part she didn’t know.  The part I told her.  I decided that today was the day to tell her the complications of long term diabetes.  The blindness. The amputation.  The difficulty in wound healing.  I decided to tell her all of the things I feared might happen to her when she was older.  The reason why her father and I were on top of her sugars all of the time, that these were cumulative effects.  That carelessness now would result in pain later.  That her father and I felt a terrific responsibility to keep her as healthy as possible now so that she could be a healthy 90 year old with great-grandkids.

I told her that we’ve always told her that we are a team, and that I wasn’t angry (I’m really not), but I am terribly disappointed, because she let the team down.

We are only as strong as our weakest link, and today she was the weakest link.

To her credit, she accepted her punishment, being grounded and no electronics for a week. She apologized.  She understood.  She also knows, I think, that it’s going to take time to repair the trust that was broken, but it’s not an impossible task. She’s a good kid, she’s got a lot of health problems, and she’s testing her boundaries.  I TOTALLY GET IT.  That doesn’t mean it’s not hard for me because it kills me.

I want to protect her from everything, even herself.

I read her this post, before I published.

 

 

 

“A Difficult Decision Was Made”

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

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

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

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

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

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

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

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

More to follow.

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

Don’t Count the Days

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

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

She was four years old.

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

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

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

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

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

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

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

Wendys first run

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

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

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

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

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

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

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

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

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

 

 

 

#projectW

This is a story of determination and luck.  And maybe some magic.

Once upon a time there was a little girl who had a lot of medical problems and saw the inside of a hospital for  many, many days.

She got sick, then a little better, then a LOT sicker, then better, better, a little better, and then better still.  But she still went into the hospital from time to time, by way of the Emergency Department.  It’s just the way life was for this little girl, and it wasn’t fair, but it just was.  It was nobody’s fault.  She made the most of it, by making routines of walking her mommy to the door every night with her father, through the halls of the hospital, to the farthest building that was still connected, and then going to see the fish in the PICU, and coming back and reading Harry Potter until they fell asleep.

She learned how to flush her IV lines and when unsuspecting people would come in, she would squirt them with the flushes she kept in her bed.  Then she would laugh maniacally.

She and her parents would set up Christmas Lights at night, and then take them down during the day so they didn’t get yelled at.

She would ride on her IV pole when no one was looking.

She would have her toenails painted by her favorite nurse.

Sometimes she would sneak downstairs with her mom and get a hair cut, or go to the chapel, or go to the gift shop to get a prize.

That’s when she was feeling well, which wasn’t all the time, but she and her parents made the best of the times that they had when she was feeling better and in the hospital.

All together, she spent over two hundred days as an inpatient at Massachusetts General Hospital.

She didn’t really know it, but she was becoming AN EXPERT at being a hospital patient.  And she knew a lot more than other kids about it.

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Her name is Wendy, and she’s my daughter.  While this was happening, she was between the ages of 3 and 5.  Now she’s twelve.

A few years ago a neighbor called us.  You see, both of her kids were in the hospital.  One was an expected surgery and one was an emergency appendectomy.  The mom called us a few times to ask questions about what to bring, what to do, what to expect.  Wendy and I answered her questions together.  We realized together that we knew a lot of things that average people don’t about hospitals and how to handle them.  We decided to write a story about our experiences.

The story was designed to help kids who were waiting in the Emergency Room, and were probably in pain, and likely nervous or scared.  If those kids asked their parents what to expect, a lot of the times, their parents didn’t know how to answer and were worried themselves.  Wendy and I thought that together we could help both the kids and their parents.  Once we were finished, we wondered what in the world should we do with it now?

We decided to give it to the hospital, and find a way to get it published.  We thought it would make a great coloring book.  Well, like many things in a hospital, it had to have a committee, so everyone could look at it.  So with the help of the chair of the Family Advisory Council, a committee was formed, with doctors and nurses, and social workers, and child life specialists, and a few other people.

They said they loved it….but could we change it?

So we did.  We made it more technical, explaining more and more things.  But we hated it because it didn’t feel like Wendy’s story anymore.

The committee hated it too.  So we started all over again, and this time made it more personal.  That felt better.  We had a good working draft and it was approved.  Yay!

Then….tragedy struck.  The Emergency Department decided that when it went through renovations that it was going to go paperless.  So no book.

What do we do now?.  Then I thought maybe we could get it animated.  But money was a problem, I didn’t have any to put toward a project, and so I looked into an internship at the hospital for a student of computer animation.  We made a job description, we found a mentor at the hospital, we filled out all the paperwork.

We got an intern!  Yay!

But, then tragedy struck again.  It was too much for the intern to handle, too big of a project.  He didn’t tell us until the internship was over that he basically had nothing to show for his time.

And I thought, this is it, this is the end, after two years.  How in the world am I going to tell Wendy?  I had run out of options, and I did something I rarely ever do.  I felt self-pity.  I was so unbelievably sad.  I wrote about it on facebook, saying just that.  I had run out of ideas and I was going to have to give up, something I hated.

LOTS of people responded with ideas.  Lots of people gave names of people who could help.  One friend asked for the transcript, so I sent it to him.  Then Stu said, “Would you mind coming in tomorrow to talk to my team about it?”

And I said Yes, thinking that I was going to have to pitch the story to this group of people in an architecture firm, so I planned what I was going to say and I went to the meeting.

That’s when something magical happened.

The had already decided!  They were going to animate it!

Yay!  Again!

And so we have been working on this project with them for almost six months.  Wendy has given her voice to the story, and she will be the narrator outside of the scenes. The Architecture firm, Payette, has been to the hospital to take pictures of the rooms. They have drawn a cartoon Wendy.  They have recorded her voice.  It should be mostly ready in a few weeks.  And I just can’t help but marvel at it, at all the kids it’s going to help.   It’s right now being called #projectW.   The idea now is going to look like this:

A child and his/her parent come to the emergency room.  They go through triage, and are sent to the pediatric portion of the ED, a separate place.  While they are waiting for treatment, they will be given an Ipad with the story that they can watch, which will be about 10 minutes long.  Wendy will tell them lots of what they can expect.  It will be her person who will reduce their anxiety.  It will be the pictures that Payette has drawn that will show them the way.

I just can’t wait the few more weeks until this is finished!!!!  Those of you who know me have been bored probably to tears hearing me talk about it, worry about it, work on it, or explain the many iterations.  I am sorry if that has happened.  But I promise that when it’s over, it will totally be worth it.  I just cannot wait!

Wendy is totally taking it in stride, like she becomes a cartoon character every day.  That’s just the way she is.

Like I said, determination, luck, and magic.

Photo:  the first working cartoon drafts of Wendy’s character.

 

 

Firefighters and Architects

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

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

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

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

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

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

They they retreat when the immediate assault is over.

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

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

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

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

 

 

Pattern of Acceptance

Once you get a diagnosis, how do you get to the point where you’ve accepted what’s happening to you, your child, your family, your life?

You may have heard of the Kubler-Ross model of grief.  At first it was applied to death and dying, but it has been spread out to many different kinds of grief.  You probably read about it in your psychology college textbook, because it’s not new.  I ran across it when Wendy was in the hospital and I realized that I was mourning our old life, the life before Wendy got sick, so I did some searching and rediscovered the Kubler-Ross model.  I am by no means a psychologist, but this helped me to get some perspective on our situation with a new diagnosis and a child that was never going to be the same again.  It’s a scary time, and your feelings and emotions run the whole gamut.  Sometimes I still check in to see where I am on the continuum.

But now, I like to think of it more as a pattern of acceptance than stages of grief.

Denial:  The first reaction is denial. In this stage individuals believe the diagnosis is somehow mistaken, and cling to a false, preferable reality.  I remember thinking not that the doctors were wrong in everything they were telling me in the “Room of Doom” in the PICU, but I remember thinking that they must be exaggerating.  They weren’t.  I hoped that once we got home Wendy would improve.  She didn’t.  I remember the night I realized that she wasn’t going to get better.  She just wasn’t.

Anger:   This is often accompanied by guilt.   “Why me? Why her?  What did we do to deserve this?”  I remember walking up and down the streets of Beacon Hill being jealous of families that were enjoying the summer.  There was a woman who was yelling at her child by the “Make Way for Ducklings” statues because he had gotten his hands dirty from his ice cream cone and it was all I could do to tell her to get over it, enjoy this moment, because your kid could be in the hospital right now.  Thankfully I kept my mouth shut.

Bargaining:  This is a hard one.  It involves the hope that we can somehow avoid this outcome.   I could understand why people go to the ends of the earth to find a miracle cure for their child.   People facing less serious trauma can bargain or seek compromise.  Sometimes it works.  My father said if Wendy survived that he would quit smoking.  You get the idea.  It’s trying to find what you can do to change the situation.

Depression:  This stage can last a long, long time, and some people argue that in part of this stage, Anger comes back.  Everything feels hopeless and you feel rudderless.  All of your expectations and plans have to either be put on hold or moderated. You wonder how it can all be so hard, and why it’s so unfair, especially for your child.  You might want to find a counselor to talk through your feelings.  It’s really hard for a long time, and then at some point you realize it’s not quite as hard, and you slowly move toward the next stage.

Acceptance:  “We’ve got this”.  This is the idea of doing the best you can with what you’ve got.  Gratitude sets in and you might find yourself being happy and being surprised at the happiness. You realize that life is moving on and you’re moving on with it.

I think, though, that for parents of chronically ill kids, that there can often be another stage:

Empowerment:  This is the stage where both you and your child take the hand you’ve been dealt and play it.  When you join advocacy groups, when you allow you child to re-join sports or after school activities or when you begin to travel again.  When you do the things you love even with the obstacle, even when it’s not exactly the same. You may be a mentor to other parents of chronically ill kids, or you may write or speak to groups.  Or you might not.  Just doing the best you can is enough, and it’s inspiring to others.

Other members of your family will find acceptance at different rates.  For us, one family member stayed longer in anger, one stayed longer in bargaining.  It’s totally an individual journey, and it’s important to realize that we don’t all come to the same understanding at the same time.  It takes a really long time to be ok with your life not being what you expected, and a new normal grows and takes hold, along with real, genuine happiness and gratitude.

The other thing that I want to say is that in this continuum, you might be knocked backward into other stages or have to start all over again with a new diagnosis.  We’ve been dealing with some new symptoms for Wendy and I’ve lately been keenly aware that we might be starting this cycle all over again, but that’s OK, we’ve done it before and we will do it again.  But that won’t mean it’s not difficult, or heart breaking, or painful or nerve-wracking, it just is.

Finally….when Kubler-Ross was interviewed years later, she said that she regretted putting the stages of grief into concrete categories, because while these are common stages, they aren’t definitive.  Where is room for confusion?  For frustration?  For complications?  For disillusionment?  These things that you feel, they are normal to feel.  Being aware about them, being in touch with your feelings and being able to both experience them and express them, will hopefully help you to heal.  Be gentle with others who are on this path with you.

Empathy goes a long way in the healing process.

Picture:  A winding road in Tuscany, leading to Montalcino.

 

Siblings of Sick Kids

This week, Wendy had four doctors appointments.  Four times we packed up and schlepped to a specialist or pediatrician.  Four times in the waiting room, four times for triage, four times in the exam room, five conversations with doctors, three with nurses, and one blood draw.

It was a tough week, a frustrating week, a week that even for us in this point in our lives is unusual.  Sure, we have more doctors’ appointments than the average family, but because it was school vacation week, we loaded up on the specialists so Wendy didn’t have to miss academic classes.  Add in a few problems and we got a few more appointments.  It was dismal.  It was awful for Wendy and was awful for me.

It could have been the worst, however, for my younger daughter, Penny.

Penny.  I got pregnant with Penny while we were waiting for a kidney transplant for Wendy.  We decided to name her Penelope after the wife of Odysseus.  In The Odyssey she is often called “Circumspect Penelope,” who is smart and shrewd, who has all of the skills of a politician, but who is known first and foremost for her patience.

We needed patience while waiting for the kidney.

There aren’t many worse times that I could have gotten pregnant.  I couldn’t handle some of Wendy’s medications because it was bad for the fetus.  I couldn’t go into the operating room when the kidney arrived because there were too many risks with anesthesia for a pregnant woman, and at the time I was in my second trimester.  We moved back to Vermont from Boston when I was in my 39th week; I gave birth three days later. Her arrival to our family was both joyful and grounding:  it served as a reminder that we couldn’t live in the past of Wendy’s medical history.   Suddenly there was another person who needed love and protection, patience and understanding.

Penny has never known a moment of her life without a sick sister.  To her it is the normal thing.  I remember when Penny was in kindergarten and she asked me when she was going to get her own kidney, when she was going to be a diabetic just like her sister whom she adores more than anyone in the world.  It was the same kind of questioning that I got when she asked when she could play soccer like her sister, run in triathlons like her sister or get her ears pierced like her sister.  The medical issues were just part of the deal.

When we go to the doctor now, Penny packs herself a bag of things that keep her occupied.  She’s reading chapter books now, so she brings one, along with an intricate coloring book and some markers.  Sometimes she will bring shopkins or stuffed animals to play with. She is exceptionally good at keeping busy.  She almost never complains she’s bored. But sometimes she wants to be on the exam table with her sister.  She often requests a snack after an appointment.  At our last appointment, she wrote me a note that said, “Mom, I love you.  And I’m Hungry.”

When I was a kid, we had dinner together as a family every night and 95% of the time my parents had cooked it.  I thought that’s what every family, everywhere did, and was shocked when I found out differently.  Sometimes I wonder if Penny will think that every family, everywhere knows exactly where to park at Massachusetts General Hospital, doesn’t need a map, knows the back door entries, walks to the science museum after a doctor’s appointment, goes to the park or picks the perfect place for lunch after an ultrasound.  That every family is comfortable in this environment, because we are.

I also wonder, and worry, whether Penny will look back on this time in all of the doctors’ offices and think it was all a colossal  waste of time.  For now, she’s too young to stay home alone, and we try to do fun things around the visits so they aren’t too onerous.  She is also too young for any support group for siblings of sick kids, and I wonder if she’ll want to go to them once she can.

The unavoidable truth is that a child’s illness doesn’t just affect the child who is sick, it affects the whole family, siblings included.

That’s one of the reasons that we moved back to the Boston metro area from Vermont.  When Penny was three years old and Wendy was post-transplant for three years, we weighed the pros and cons of moving to a town closer to Boston.  Yes, we were certainly moving to have Wendy closer to her medical home, but we were also moving so that there would be a community of support for Penny, so that we wouldn’t be four hours away from her when Wendy was in the hospital, or she wouldn’t be four hours away from her school, friends, and activities once she got older.  We were reassured that we had found the right community when numerous families offered to take Penny while Wendy went into the hospital a few months after we arrived in our new town.

Luckily, Penny is the kind of kid that just blends in with families, and even more luckily, we haven’t needed to rely on the good grace of our friends because Wendy’s been overall healthy.

One of the best pieces of advice I was ever given was, “As a mother, you are only as happy as your least happy child.”  We have to pay attention to the needs of both kids, as much as we can, and help them to be good, strong, empathetic, resilient adults, whether they have special health care needs or not.

 

 

 

 

Dear Doctor S—-

Dear Doctor S—-

I want to thank you.  Really.   Even though you gave us bad news, I want to thank you for your approach, courtesy, and helpfulness.

Truthfully, we don’t know you well.  Wendy goes to see you once a year, to get new glasses.  We were just there a few months ago.  But in the last month or so, she was having a hard time seeing again, and I thought maybe it was growth or puberty or whatever, and I took her back to you.  I had Penny in tow as it was school vacation week.

You remembered all of us and asked us each questions about work, school, sports, and our town.  You spoke about people we knew in common.  You were ok with Penny playing on the floor of the room while you conducted your exam.  You don’t know how much I appreciated that, most of the time doctors find the extra child to be tiresome at best and a nuisance at worst.  You totally went with the flow of our chaotic life.

You examined Wendy and realized that it wasn’t really her vision that was off, that her prescription didn’t need to change that much, so you looked for more problems.  It turned out that Wendy was seeing double.  You examined her and you asked her good questions.  She had a hard time explaining some things, and you encouraged her by telling her that you know these things are hard to explain, but she was doing a good job and she should keep going and he would ask questions for clarification.  Doctors don’t do this often enough, not only did you engage Wendy, but you encouraged her, and when she didn’t have the right words, you asked thoughtful, non-threatening questions to help her.  Then you let her and Penny go out to pick glasses.

And this is a small thing, but I need to mention it.  Your staff was totally fine with both girls trying on as many glasses as they wanted to, and Penny didn’t even need them.  They let them try on a hundred glasses, or what seemed like it.  They were patient when the girls wanted to try on the crazy cat eye glasses or the pointy square glasses.  Eventually they narrowed Wendy down to five pairs, then three, then two, but they let the girls explore and have fun in the process of finding just the right pair.  No one judged them, no one told them no, no one worried they were going to break something (except perhaps me.)

While the girls tried on their fashion accessories, you told me about your concerns.  Based upon Wendy’s medical history, her medications, and her symptoms,  that I should speak to her specialists immediately, and that I should contact her pediatrician and make an appointment. You answered all my questions.  You continued that I should ask about a neurology consult and that this likely will lead to more tests.  All of these things you did firmly but not in a way to try to scare me.  You just let me know that something was wrong, it was serious, and we needed to look into it.  Then, and this is important, you helped me by telling me EXACTLY how to look into it.

I’ve been doing this a long time now doctor, almost nine years.  I pretty much consider myself a professional hospital parent, and I have to tell you that you did everything right.  Your exam was thorough, you were ok with the extra kid, you validated Wendy and her explanations, you explained your concerns to me, and you helped show me the way to the next step.

I don’t know what the outcome will be, this is a new needle in the haystack of Wendy’s medical conditions, but I want to tell you how much I appreciated our encounter yesterday.

Yours truly,

Darcy Daniels

New Faces At Grand Rounds

One day while Wendy was in the hospital in late 2007, an endocrine fellow came in to ask us if we had any pictures of her that we would be willing to share.  The fellow was presenting Wendy’s medical case at Grand Rounds and she wanted to add a few pictures to  the slide show.

At the time, we didn’t know what Grand Rounds was.  Grand Rounds is an opportunity for doctors to present challenging or unusual medical conditions to their colleagues, along with what the course of treatment was, and allows a venue for the presenter to be challenged by his or her  peers.  It is a way to educate doctors both whom are going to the presentation and for the presenters themselves.  It was a novel approach to have pictures of Wendy in the slide show, because for the most part Wendy is just supposed to be a “case” to be discussed, not attached to a face.

I remember thinking that like other parents, someday I wanted Wendy to be famous, but I never thought it would be like that.

A few months later, I was approached to speak at Grand Rounds myself.  The Family Advisory Council at MGHfC spoke at one Grand Rounds a year surrounding the topic of family centered care, the idea that it is not just a child that the hospital is treating, but the family of the child as well. This Grand Rounds was designed to ask parents and patients if they had anything they felt was important to share with doctors of their children.  Michael helped me prepare as to what I was going to say, and I have to say I was nervous, but it was a really positive experience. The doctors asked good questions and it was all together well received.  The Family Advisory Council has sponsored Grand Rounds around conversations and communications between providers and parents, as well as asking doctors to speak as to how they have changed their medical practice as the result of having a sick child.  These are unique opportunities for doctors and parents to arrive at the same goal:  understanding each other in the quest to give the best possible care to children.  It has been an incredibly successful  endeavor.

Now, a new approach: having the pediatric patients speak directly to the doctors at Grand Rounds. This was the first time that an entire panel of speakers was all pediatric patients, at least at Massachusetts General Hospital, but I suspect that this is new territory for a lot of children’s hospitals across the country.

Wendy spoke yesterday with three other patients about their experiences.  All four patients were teenagers, (well, Wendy was twelve and the youngest), and they were all what we would call “frequent flyers” in the medical world:  they were patients who had been there a lot.  One teen had cancer of the jaw, one teen broke a vertebrae while playing football, and two teens had undergone kidney transplants.

The themes were rather universal and centered around anxiety and communication.  The teens asked to be listened to fully, have procedures explained to them, be addressed by their names and really be a full partner at the table.  Isn’t that what we all want in medical care?  What’s funny is that doctors know this, and I would be willing to wager that they think they are doing a good job at communication, especially those who work in pediatrics.  Yet the gap in communication remains.

Here’s why I think yesterday was most beneficial.  One:  people connect to stories, and these kids had stories to tell.  They are survivors in the medical world.  They have grit. And they are vulnerable enough, willing enough, courageous enough to tell their stories, to tell what could be improved upon, to their doctors.  Doctors don’t often get the opportunity outside of inpatient setting or the clinic to hear how they can improve.  Two:  a lot of these teens really made an impact on their doctors just by returning. They had been so sick and had such a positive outlook nonetheless, and they were succeeding in the world, not just as patients, but as people.  They were inspiring.  I don’t think that doctors often get to see their success stories years later, when patients leave they don’t come back, much like students and their teachers.  Both medicine and education have a long term return that you don’t often get to see:  the success of the child due to the efforts of the doctor/teacher.  After grand rounds, so many doctors came up to me to tell me how wonderful Wendy looked and how grateful they were to see her.

Pediatrics is a tough field, but one of the things that a doctor said yesterday is that it also garners hope, which is a powerful motivator. Those teens yesterday might not know how incredible they are, they just know that they have an extra burden of medical issues.  It’s the adults in the room who are affected by their tenacity in the face of adversity. Not just their tenacity, but their optimism and sense of self.  They are not patients, they are people.  They are success stories.  They have a voice.

This is the new face of medicine, partnerships in success through communication.  Yesterday was just one of the steps in the process.

A very welcome step.

 

Find Your Tribe

It’s important to find groups and organizations who support you in your journey as a caregiver, both in the short term, and in the long run.
Wendy had a strange illness. It wasn’t a genetic defect, or cancer, or cystic fibrosis. She was born completely healthy. Her illness was a result of a bacterial infection that turned into a syndrome. As a result, there weren’t a lot of support or advocacy groups out there.
Advocacy groups are great. They are a clearing house for information , because usually the thing you worry about for your child is a normal worry associated with that illness. There are so many advocacy groups out there for cystic fibrosis, heart disease, low birth weight, cancer of all kinds, food allergies Crohn’s disease, kidney disease, you name it. Many times you can find a local chapter of your needed advocacy group nearby and it helps to talk to people who are going through exactly what you are going through.
We found that though the syndrome didn’t have an advocacy group, that there were other avenues we could travel down for the same kind of support. One was STOP foodborne illness, which is an advocacy group that supports people who have been struck by illness associated with food, like e-coli or salmonella. They do work in the legal sphere trying to cut down the use of antibiotics in factory farming, but they also support people who have been struck down by the illnesses they are trying to prevent.
We also turned to the diabetes advocacy groups. As a result of her illness, Wendy’s pancreas works at 15%, which means that she needs insulin on a daily basis to digest her carbs and sugars. She’s neither a type 1 or a type 2 diabetic, but she has the same concerns as a diabetic kid. She feels isolated and left out as a result of her illness, because she’s the only one who has to check her sugar, count her carbs and give herself insulin. She LOVES being in a room where everyone else is doing those things too. She loves to go to diabetes camp as a result. She loves to belong to a bigger group.
We also are a part of the transplant community. This one is a little more ambiguous. It’s multi-age, and multi-organ because there aren’t many people in the world who have organ transplants. I like this group because it’s amazing to sit in a room full of people who wouldn’t otherwise be there except for the generosity of a donor or a donor’s family. And as a result, the people who are the recipients just radiate gratitude. They know they’ve been given a second chance in life. They know what’s important.
Part of being in groups like these isn’t just receiving their collected wisdom, it’s also about participating and giving your energy as well. It’s just as important to give back, once you are in a place to do so. Obviously you can’t give back when you are in a time of crisis, nor does anyone expect you to. But once you’ve calmed down, it’s important to give back to an organization that you have used as a support and an anchor. I’m not just talking about money, but manpower as well. Wendy does a run every year to raise money for her diabetes camp, The Barton Center. It’s a summer camp dedicated to diabetic girls, with nurses in every cabin. It emphasizes self reliance and not putting barriers on yourself. It brings in speakers who are both diabetic and amazing, like triathletes or ultra marathoners. It shows the girls that anything is possible, and diabetes is just a part of their identity, not their whole identity.
Wendy also is going to participate in the American Transplant Games this year, in Cleveland Ohio. She is going with Team New England and she is going to participate in both the swimming and the track and field events, and she’s going to kick butt if I do say so myself. But more importantly, Wendy’s participation and the participation of all of the transplant recipients showcases the worth of organ donation. When you see all of the people who have been touched by organ donation, in one convention center, it is a very powerful thing.  I’m sure that I will be blogging from there in June.
It’s not just about joining a group, and I can’t stress this enough. As a parent of a chronically ill kid, your time is stretched too thin already. It’s about finding meaning and purpose in a group, and it might be a group that isn’t centered around your child’s illness, exactly, but will still do a world of good.
The best thing that I do is sit on the Family Advisory Council at Massachusetts General Hospital. It’s a body that is half parent and half provider-staff. We meet once a month and help to make the hospital better for all children. Often we are a resource to proofread new source material for the public, give feedback on architectural designs for new departments, or run workshops on staff helpfulness. We speak to new residents about what it’s like to be the parents of kids who are in the hospital a lot. We sit on hospital wide committees for quality and safety, ethics, or inpatient satisfaction. We even sponsor a Grand Rounds once a year that focuses on family centered care. It not only improves care for every child through fostering communication between provider, parent and patient, but it makes the hospital better for MY daughter, every time. I know more of the doctors, more of the nurses. At the very least the residents and fellows have all seen my face, and I know a lot of the attending physicians by name. It keeps a connection so that the next time we go in to the hospital (because there will always be a next time) that we’re not met with brand new faces in a large city hospital. I honestly think it’s some of the best, most measurable, work I do on a macro scale.
Another benefit of being on the FAC at Mass General is that I also come in contact with parents just like me who are not only concerned, but passionate about making the hospital better, who come to the work not out of anger because of the hand they have been dealt, but constructively taking their experiences and working with doctors, nurses, and staff to collectively make the hospital stay better. Honestly, sometimes I look around that room and marvel, the men and women sitting at the table could be considered “professional hospital parents” because their child (or children) have been inpatients so often, some of whom have passed away as a result of their illnesses, and yet they choose extra time to be there, in the evening, to work out the snags and make the hospital better. I take strength from their strength.
Being the parent of a chronically ill kid is isolating, but there are places of refuge. Advocacy groups, hospital committees, or even online groups. But don’t just be a bystander, don’t just be a taker. Give back. Your contribution not only makes the organization stronger, but makes you stronger as well.

Find your Tribe.

Everyone benefits, and as a result, there are flashes of brightness in the dark. Together you can find a way to make your child’s illness better, and hopefully the experiences of other families better too.