Communicating During Crisis

In the beginning of Wendy’s hospitalization, Michael and I arrived at Massachusetts General Hospital at different times.  I had first flown with Wendy from our home in Vermont to Dartmouth Hitchcock hospital in New Hampshire.  Then a few hours later when it had been determined that Wendy was in kidney failure, she and I were taken by ambulance to Mass General.  Michael and my mom followed later in the car, and typically, got lost in Boston because everyone does.

After we had both arrived and had gotten settled, one of the first things we did was go down to the coffee shop in the hospital.  We knew that we were in for a long haul.  Suddenly we were two states away, our parents were arriving, and we knew that things were going to be really tough medically, emotionally, financially, all of it.  In a whirlwind of chaos, we knew that we had to set down some guidelines for communication, and stick with them.  We were both horribly scared, but we knew that we had each other, and we had to keep our lines of communication open.  We agreed to some ground rules:

Be kind with your words.  “Don’t ever say anything that you can’t take back.” You know those words, spoken in anger, using absolutes like, “You Never” or “I Always”. Those aren’t helpful. We are a team and we will act like a team.

Be honest with your emotions. Just saying your emotions out loud makes you feel better because you’ve put a name to them. “I am scared” is a powerful phrase.  Don’t expect to have the other partner know how you are feeling, you need to state it.

Say when you need a break. Sometimes we need to take a step back, get a cup of coffee, walk outside and breathe a little fresh air. We would feel overwhelmed at some point in this journey. Those few minutes where you can separate and regroup your thoughts will save you in the long run.

I honestly believe that this agreement preserved our marriage.

These ideas didn’t fall out of the sky, we had done these things, more or less, over the years.  We had learned good communication through a number of avenues.  One way was living in the Czech Republic together. After dating for about a year, and after we had both graduated from college, we had the crazy idea that we would move to Prague and teach English to Czech students.  We didn’t quite realize the situation we had put ourselves into.  We had arrived in a small town well outside of the city and were essentially the only two people who spoke English.  Unlike western cities that had dual languages for menus or bus schedules, everything was only written in Czech. This made for humorous meals at the local restaurants when all we could do was point to something on the menu and hope for the best.  The other “English”teachers in our schools were the former Russian teachers, who were told overnight that they needed to switch to teaching English or face losing their jobs.  Not only was their English not good, but they weren’t thrilled to have native speakers teaching along side them.  We were on our own.

Michael and I lived in a single converted classroom in one of the two schools in town.  It was inconvenient, especially because it also housed the early care for children, who liked to just walk in to see what we were doing.  There was no telephone, and it was only the dawn of social media.  The situation was less than ideal.

We realized quickly that if we had an argument that there was no one else to talk to in the whole town.  Necessity became the mother of good communication.

Prior to that, we also had experience with something called a “Full Value Contract” from Gettysburg College, where we both attended.  A full value contract was introduced to us through Gettysburg Recreation Activities Board, or GRAB.  The idea was that everyone had an equal say and it was up to the individual to be clear with how they were doing, as no one is a mind-reader.  Neither Michael nor I were in GRAB, but one of our best friends, Hutch Hutchinson, was one of the first student leaders, and he led trips for student groups, including groups that we were in.   Michael and Hutch hiked 500 miles of the Appalachian Trail together.  (Hutch continues this work at Boston University, where he leads the Common Ground seminar for first year students.  You can see a video of it here.)  “Full Value Contract” was a part of the vocabulary we brought with us to the Czech Republic, and it served us well.

Lastly, Michael and I knew that when we were stressed, that we used a certain “tone”.  You know that tone.  It’s 50% of communication, and when the words and the tone don’t match, it’s the tone that trumps the conversation.  Way before we got married, we agreed to state when a day was going to be stressful.  We would say, “Today is going to be tough, so I want to say I love you now, in case I forget later.”   This might include buying our first house, or going on a trip, or going into labor and having a baby.  This was an inside joke, almost a code for us that we needed to treat each other well not knowing what the day held in store for us.

We brought all of these tools with us to the hospital, and yet we still felt the need to take time away and actively state our three ground rules for communication when we got to the coffee shop.  This isn’t the recipe for every happy family in the world that is going through the trauma of a chronically or terminally ill child.  But what I’m saying is that you have to find what works for you, what will sustain you even through the darkest times.  Only you know what will work for you and your partner, but they key is to find it, agree to it, and stick with it.

It will serve you well in the long run.

 

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Dear Mom of My Daughter’s Kidney Donor

Dear Mom of My Daughter’s Kidney Donor,

In just a few days we will celebrate the seventh anniversary of my daughter’s life saving operation, the successful graft of your son’s kidney.  Every year I prepare for this day, that is filled with such conflicting emotions.

You see, my daughter was so very sick and had been for almost two years at that point.  She was on five different blood pressure medicines.  Her heart had been weakened.  She was only allowed 750 mililliters of fluid a day, that we handed out to her a tablespoon at a time.  She was on fourteen different medications, that we gave to her every two hours around the clock.  We checked her blood pressure twice a day.  We checked her blood sugar eight times a day.  She was on a low potassium, low sodium, low magnesium diet.  She had two doctors’ appointments per week, one blood draw per week, and we spoke to her doctors twice a day on the phone.

Our lives revolved around keeping her alive.  There was no respite.

It was difficult to acknowledge  that I couldn’t be the donor, nor could my husband, nor could any immediate family members.  We had to jump through the hoops of getting on the list for a deceased organ donor, and we had to fight the insurance company to let us have the operation at the hospital that we considered to be our medical home, rather than the hospital on the other side of the city that the insurance company did the most business with.

Weeks went by and she continued to fail.  The doctors kept saying “Keep her healthy, the kidney is going to be coming soon.”  Her blood pressures were increasingly more difficult  to control.  I remember planning for her fifth birthday on January 9th, a swimming party at our local pool and while getting all of the decorations ready, breaking down and weeping because I wasn’t sure that she was going to have another birthday and then pulling myself together because it was going to be happy, dammit, it was going to be her best birthday.

We had a false alarm.  A kidney was ready.  We raced to the PICU, we brought her to surgery.  We went upstairs and waited.  The surgeon looked at the kidney and turned it down.  We were devastated.  I  can’t tell you how horrible that night was.  Wendy had finally reached the point where she had to go on dialysis, and so a few days later she went back into surgery to have the catheter placed.  I had to go for training to learn how to run the dialysis from home.  Supplies were ordered and sent to our apartment near the hospital.

To add to the worry, I was six months pregnant and wondered how long I was going to be able to keep everything together. These memories always are accompanied by the heaviness of pregnancy.  I wondered when the baby arrived, if I was going to be able to do everything that needed to be done.

On the night of January 31st, Wendy was in the hospital recovering from her catheter placement.  The nurse came in excited.  There was a kidney on its way.  We were to prep for surgery.  Now.  Wendy’s nephrologist came over from her home and brought Wendy a snow globe to keep her busy while we got her ready.  It was a weekend, at night, so the operating floor wasn’t busy.  In fact, it was really, really quiet.  I wasn’t allowed to go into the surgery with Wendy because of my pregnancy, so I waited in the hall, looking in to the surgery theater when the door opened.

I remember when the fellow walked down the hall with the kidney.  In my memory, the hallway feels very long, but I don’t know if it actually is in reality.  The kidney was in a wax covered cardboard box. The fellow carried it carefully, but had to put her mask on before entering the surgery room, and so she held onto the box with one hand and put the mask on with the other, and I worried that she would drop it!  Seriously, don’t they have a cart or something?

Finally, Wendy got settled, they got started, and we had to wait.  Again.  We got the call that everything went well and we were to meet them in the PICU around 2 am, February 1st.  We saw her come up in her bed.  The kidney had already produced urine.  After almost two years, it felt like a miracle.

From that day forward, she has continued to thrive.  Medicines were shaved down and removed altogether.  She progressively got stronger and stronger, exceeding what her doctors even expected.  Today, she runs a mile in under seven minutes, she competes in triathlons and wins them.  She plays soccer, skis, swims competitively.  She is an amazing and compassionate kid, a good big sister, thoughtful beyond understanding.  She is the kid that gets up for the old lady on the train.  She is the kid who gives her balloon up when the toddler loses his to the air above.

She still has hurdles, still has health issues.  She is still a diabetic, she still takes medication daily, worries about infections, has some dietary restrictions.  But in comparison these are manageable things.

We call the anniversary of her transplant her “Kidneyversary” and celebrate it like a birthday, with friends coming over, chili for dinner (kidney beans!) and a cake.

But, Mother of my Daughter’s Kidney Donor, I have felt guilty about celebrating the life of my child when your child has died.  That the best day of my life, the fulcrum of it, the time stamp where everything else is measured against it as “before the transplant” or “after the transplant” seems horribly unfair knowing that it is also the fulcrum for your life as well but for the opposite reason, the nightmare of every parent.

My only solution to this has been to make the official date of the transplant in my mind be February 1st, when the surgery was finished, not when it began the night before.  On the 31st of January, I give you the day to mourn, and I mourn with you, for the life of your child,  your fourteen year old boy, who would have been twenty one this year.  It is the next day that I celebrate in gratitude for your amazing gift to my family.

Wendy knows about your son, that her kidney is  a “boy kidney” as she calls it.  We give thanks to you and your family at our holiday toasts, I give thanks for your every day in my morning meditations.

I guess ultimately, what I want you to know is how often I think of you, and your son, and your sacrifice.  Your gift is truly a gift of grace, one that you gave and expect nothing in return.  In fact, your gift can not be measured, and there is nothing I can do to repay  you.  I can only be grateful.

This letter is written to you to let you know that I truly am.  Thank you, thank you, from the bottom of my heart.

Sincerely,

Darcy Daniels

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Courteous Vs. Helpful

Wendy and I have spent a lot of time in various doctors’ offices lately, and I’ve been reminded that there is a right way and a wrong way to treat a young patient and her family.

Here’s an example of a doctor’s visit that didn’t go so well last week.  It started late in the afternoon, after school.  The doctor was new to us, arrived fifteen minutes after we were in the exam room, did not introduce herself, nor called me anything but Mom.  She did not address Wendy by her name once.  We were there because Wendy had hurt her knee, but the doctor asked a lot of questions about her medical history.  It bordered on nosy.  Granted, Wendy’s medical history is chock full, and I understand that there are a lot of questions, but not necessarily for a hurt knee, other than the fact that she can’t take NSAIDs like ibuprofen because it is bad for her kidney. The doctor also commented on her bifocals as unusual, again nothing to do with Wendy’s knee.  As we left (and thank God that Wendy was out of the room already) she said to me, “Don’t worry mom, she has to do SOMETHING the normal way.  Maybe her knee will be it.”

Unhelpful comment, doctor.  It is not your place to editorialize my daughter and her medical history.  It’s your job to tell us what to do about her knee. Meet us where we are in this moment.

Today we had a totally different experience.  We saw a doctor who has been following Wendy since the beginning of her illness, almost since the first day of it.  First, she saw us downstairs in line waiting for coffee and paid for our order. Then she met us upstairs, where we addressed concerns I had about medication and blood pressure.  She had the nurse come in both to say hello and to confirm medications and prescriptions.  She ordered labs, and though it was a new computer system, made sure that it was working, printing out the labs herself after the front desk couldn’t find them in the new system.  She looked at Wendy’s ultrasound, told us what it said, and we arranged for a meeting in a month.  She wished Wendy happy birthday, and we left.

Granted, this second doctor has known us for a long time, and we have a very special relationship with her, but that doesn’t mean that the first encounter with the first doctor was what we should be willing to accept as care for a child.  For the sake of argument, let’s say it is the difference between being courteous and being helpful, and it applies to everyone from the doctor to the receptionist at the front desk.

Being courteous is answering questions directly, but not necessarily providing any solutions for the patient or parent.  Being helpful is when you team with the parent, even momentarily, so that you can come up with a solution to the problem at hand, so that the parent doesn’t feel like they’ve been hung out to dry.  Being courteous is saying that your patient needs a test and it’s in Building Such and Such.  Being helpful is showing the parent how to get there, why it needs to be done, and what the results will mean.

Let’s face it, families are rarely in the doctors’ office because something good is happening. Therefore, the parent is often stressed.  The child is either sick or in pain, and additionally he or she can pick up on the parent’s distress.  Add to the mixture the traffic getting in, finding a parking spot, the possibility of getting bad news,  any new information that might be thrown at the parent, and there’s an overwhelming sense of doom in the waiting room.  No one is there because they want to be.

So it’s important to treat these families better, then say, someone who is ordering a double-tall-skinny-latte at the drive up window at Starbucks.  “I’m sorry, I can’t help you with that,” rings a little hollow when you have a sick kid in tow, knowing that tests will be ordered, waiting for bad news, in a room that (let’s face it) could be a little more child friendly.

The difference is compassion.  Compassion is the key to a successful trip to the doctor.

Compassion is the empathetic concern for the misfortunes of others, accompanied by the desire to help to alleviate that suffering.

Most people get into the health care business because they are compassionate people who want to make a difference in the world. They have bad days too, and hey, they’re human.  When you encounter a whole office that is merely courteous, however, then you know that something is wrong. Sometimes the system has beaten compassion out of them with deadlines to see so many patients per day, etc.  So for the sake of argument,  let’s go through some of the things that make a health care professional helpful.

Dear Health Care Provider:

Please read the chart before you walk in the door.

Please learn my name and don’t just call me “Mom.”  If it’s possible, learn if my child has a nickname.

Please tell me who you are and what you job is, and how you can help us.

Please listen to my concerns.

Please listen to my child and talk to her like she is a full partner in this process, because she is.

Please explain what the next steps are and what your concerns are; tell me why we are doing what we are doing.

Please follow up as promptly as you can with information on tests.

Additionally, the truth is that it’s the little moments, those little compassionate moments, that we remember in health care.  We remember when the doctor gets on the floor to play with our kid, we remember when they sing a song together.  We remember when the nurse looks for samples so you don’t have to immediately go to the pharmacy.

We remember when the doctor tells us bad news and holds our hand.

Ask any parent of a chronically ill kid about a compassionate moment that a health care provider showed, and they will be able to give you ten, because those are the moments that we WANT to remember.  It provides dignity and humanity to an already suffering population.

It is the compassion that binds us together, and it’s better for the bottom line. People who feel that they are valued come back.  The Schwartz Center for Compassionate Care in Boston has tried to measure compassion.  In this article, they show that hospitals that recruit candidates with compassion, train how to be more compassionate, and reward those members who show true compassion have better retention rates, and fewer return visits to the Emergency Department.

Compassionate Care makes a stressful situation better.

What if you’re not encountering helpfulness and compassion?  Some things I do as a parent include introducing myself to everyone in the room:  Doctors, nurses, medical students, you name it.  I introduce my daughter.  I give a brief history if the doctor hasn’t done so to everyone in the room.

If I am not getting the answers I want, I say so, sometimes not so nicely.  I have been known to say, “If I ask you a thousand questions you need to answer them, because I’m the mom” (Please note, this perhaps wasn’t my finest moment.)

If I’m nervous, I write down my concerns ahead of time to make sure we get to them.

I ask why questions.  “Why are we doing this test?  Why do  you think that?”

I thank the health care provider and try to name the thing they’ve done.  Every time. I make Wendy do it too. “Thank the Phlebotomist for the blood draw.”

I’ve also written complaints when something has gone seriously wrong with patient care.

My daughter is more than a diagnosis, she’s a person.  The health care system can’t just treat her, they have to treat the whole family.  It’s just the way it is.  We are a package deal.

If you are a health care provider, please consisder be more compassionate, more helpful, and not just courteous.  Just being courteous won’t get you anywhere.

Rather, it will encourage me to find a better experience for my daughter and my family.

 

My Most Helpless Moment

As a mom of a chronically ill kid, there are things that get thrown at me all the time with doctors, nurses, school nurses, pharmacies, insurance companies, etc.  My daughter takes a nice cocktail of daily medicines, along with blood sugar checks and other concerns due to her immuno-suppression.  Yesterday alone, I had two calls from the school nurse, two from the specialist’s office about prescriptions and appointments, another to confirm an ultrasound, and one visit to the primary care physician, for (of all things)  a sprained knee.  There are no breaks with this child. It’s a lot, and it can wear on you.  However, I have grown as a person and a parent since Wendy was originally diagnosed, and sometimes when I’m feeling a tad overwhelmed,  it’s helpful to visit my most helpless moment to see where I am today, how far I’ve come, how far we’ve all come.

It was one of the first weeks that we were in the PICU of Massachusetts General Hospital.  We had been transferred first from our local hospital to Dartmouth, and then transferred again to Mass General.  Wendy was three and a half, and normally active to the point of hyperactivity. She was always running, always joking, always testing the limits of EVERYTHING including my sanity.  Then her illness came and she was in terrible pain, she was dehydrated, her kidneys had shut down along with other organ failures. She was in really bad shape.

Doctors came in and out, whole teams of them, explaining to us what was going on, what was happening, what they were trying, how long we would be there.  It was terrifying and isolating and we had to learn a whole new vocabulary over night.  I would stand at rounds and take notes, of the doctors, their names, their specialties, what they were saying, what I didn’t understand, and then after they left, I would sit down and google the terms and try and piece together what the hell was going on.

It was like living in a nightmare.

Wendy was largely unconscious, and had tubes in and out of her with medicines and different solutions.  I had a flurry of emotions:  fear, isolation, uncertainty,  but the  number one thing I felt was helpless.

As a parent, I was used to calling the shots for everything (with my husband of course.) What Wendy ate, what she wore, making sure she brushed her teeth, making sure she had the proper  number of minutes for her time out.  Worrying whether she’d make her milestones, if she was eating enough vegetables, you know the drill.  Too many decisions that we as parents make ourselves crazy over, wishing there were a no-fail guide book to read and learn from.

Likewise, every parent has felt helpless at some point.  We all have to let our kids experience life on their own terms, and that means getting hurt.  How many of us felt helpless when their kid rode with out training wheels for the first time?  Sang solo in a musical production?  Had to get vaccinations?  Had a badly scraped knee?  We are helpless because we just have to let the  moment happen, but hopeful that it will go as well as it can go.  That’s parenthood:  responsibility, helplessness, hopefulness, angst and joy.

Early on in Wendy’s illness was when I was the most helpless because I went from being the Primary Parent In Charge, to just sitting there while other people tried to save her life.  I couldn’t do much more than answer questions, sign consent forms, try to make sense of it all, and hold her tiny hand.    At some point, one of the nurses took pity on us and decided that we should hold Wendy, that it would be good for all of us if we could do this one, simple, thing.  But it’s not simple with all the tubes and wires, all the timing, all the schedules.

It took the nurse the better part of an afternoon to plan when to unhook, when to drain, when to unplug certain wires and tubes.  Between rounds of dialysis, before labs.  Slowly things were capped off and Wendy was ready to be held.  They sat me in a chair and brought her the two feet she needed to travel from the hospital bed to my lap.

Here is where the most helpless part kicks in.  When they put Wendy in my arms, I was holding her with both of my arms supporting her from beneath.  And I couldn’t help it, I started crying, out of the pain that she was suffering and the joy of holding her again, and the uncertainty of our future.  The tears just ran down my face.  But I couldn’t wipe them.  They rolled down my face and splashed onto Wendy, and my arms were pinned beneath her.  I couldn’t wipe my own tears and other people had to wipe them for me so they wouldn’t fall on my impossibly sick child and I couldn’t do anything about it.

That was my most  helpless moment.

It is unlikely that I will ever be that helpless again, because I know so much more, can do so much more, and Wendy is so much stronger.  But it helps to remind myself that even at my most helpless, that people were there to support me, and even at my most helpless, we all made it through.

And we will again.

(A Note about Picture:  This is Michael holding Wendy, same day as described above.  A picture of me wasn’t taken.  It turns out it had been three weeks of being in the hospital.)

 

 

Brave Fragile Warriors

Happy New Year!

This past Christmas, I was given an opportunity to wrap lots of presents for sick kids in the hospital.  We as a family have spent our fair share of days as residents of Massachusetts General Hospital.  In fact, we have spent every major holiday there at one point or another.  We are what might be called “frequent flyers.”

But that’s not why I was in the hospital on December 23rd.  I was there to wrap Christmas presents for other kids and their families.

Here’s the deal. Christmas in the hospital totally sucks and everyone knows it.  Doctors and nurses do everything they can to get kids home because no one wants to be in the hospital for Christmas.  But sometimes, kids can’t go home.  So there are wonderful, generous, kind-hearted people who do the best they can to make Christmas as nice as it can be for these sick kids (and their parents) who just don’t want to be there.    There are sports players and pop singers who come for visits. Santa comes by.  There are special events to make Christmas Cards or crafts.  There are special cookies on the food trays.  There might be someone who comes by to sing Christmas Carols.  All of this helps, but it’s not the same as being home and we all know it.

The Child Life Services at MGH along with their charity organization, “Angels Above” had managed to buy or procure dozens, perhaps hundreds of presents and spent about a week setting them up in a storage room so that parents could “shop” for their children. Each parent could choose five presents for their child.  Sometimes, if they had more than one child (only one of whom was sick), they would divide the presents up:  three for the sick child, two for the well child.  They would be given a shopping bag and the opportunity to find something special for their kids because time and money are tight when you’ve got a sick kid.

They were so grateful, they couldn’t say thank you enough.  Thank you for the presents. For the thoughtfulness. For the wrapping.  It was the kind of overwhelming and exhausting gratefulness of people who were simply worn so thin that all they could do was express their gratitude.  They had spent all of their emotion and energy showing up, talking to doctors, putting on a brave face, and trying to make sense of it all.  You could see the weariness in their eyes, in their smiles.

Bags of toys in hand, they would then come to me.  I was  in the family room, in the corner, with big windows that overlooked the State House with its golden dome. The weather outside was gray but it hadn’t snowed yet.  I had a special wrapping station with paper of any color and bows, and cards, and ribbons.  I would wrap their packages. They would sometimes help, but most of the time they would just sit.  And then, ever so slowly, they would talk.

What exactly do you say to a parent in this situation I wondered, and so I started with the question, “Tell me about your child.”  And they would.  Who they were, how old, where they lived.  Then, what they were in for, how long they had been there.  How much their child inspired them.  How grateful they were to the doctors.  How scared they were all the time.  All while I was wrapping presents.  All with other parents in the room.  The overwhelming theme was that their kids were their heroes.

There were people from all walks of life, from all ethnicities.  There was a Chinese woman who so wanted to be understood, that she spoke slowly  and in clipped phrases.  Her son was in pain.  He was scared. She was scared.  They had been there two weeks.  She had no family in America.  Tears spilled down her cheeks as she trembled trying to get the words out.

There was a grandparent couple there with their granddaughter who was their whole world, who travelled back and forth from New York State for treatments.  Another little boy with the same diagnosis and his parents from Maine, when the parents and the grandparents found out, they compared notes on symptoms and side effects, on doctors and treatments.

There was a South American Woman who was afraid she was going to lose her job because she was in the hospital so often with her child, who had weak lungs.  She lived locally, so she tried to do the work at night as best she could.

When the Child Life staff came by to ask if I needed anything, the only thing I could think of was tissues, because sometimes these parents got a little teary, a little emotional.  Can anyone blame them?

Now here is the thing.  I was only there for two hours. All of this happened in two short hours.  As one of the parents was leaving, she looked at me and thanked me, not just for the presents, and the wrapping, but she thanked me specifically for the conversation. She said, it was so nice to talk to someone new.

And I remembered feeling exactly the same way when Wendy was in the hospital.

That day was the genesis for this blog.  Sure, in the past I have thought about writing my experiences, in fact people have told me I should write a memoir.  For now, that’s not my focus.  I think it’s important to talk about our brave, but fragile, warriors.  And talk about how difficult it is to parent them at times, because we want them to be normal kids but they have extraordinary circumstances.

The truth is that a lot of the things we want to talk about make other parents uncomfortable, even our friends.  It’s like they don’t know where to look when I talk about Wendy’s next kidney transplant, or the horror of having no  health insurance, or the many hours and days I spend in the hospital. It’s not that they don’t love us, it’s just that it’s very difficult for them to relate without triggering their own deepest, darkest fears of having a sick child.

Our sick kids are not only the brave fragile warriors.  We as their parents are too and we deserve a place to talk about it, to comfort each other, to celebrate the victories and band together in the defeats.

And so, a blog is born.