Understanding, But Not Sharing, Despair

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

But I’m going to try.

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

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

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

It’s exhausting.

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

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

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

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

Damn, it’s really hard.

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

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

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

Hug the ones you love today and thank them.

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

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

 

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What If I Don’t Know the Answer?

For a number of years now,  I have had  the honor of speaking to the brand new residents at our hospital.  These are often young doctors who likely graduated from Medical School, top of their class, in May.  I speak to them sometime in the third week of June, giving them enough time to pack all their worldly goods and travel to their placement between graduation and new residency.  They begin seeing patients sometime around July 1st.

A large proportion of these doctors do not have children of their own.  So they are experts on the anatomy and physiology of a child, but not necessarily experts on how to talk to them, or how to talk to their parents.

I get to speak to them on their first full day.   It says a lot about the administration of Massachusetts General Hospital for Children, that on the first day of the new residency, these new doctors speak to parents.  It sets the tone that the hospital is committed to family centered care.  It means that they are serious about good communication between doctors, patients and parents.

Every year, a few of the parents from the Family Advisory Council go together to this rather informal discussion.  We all introduce ourselves by way of our child’s illness.  We are what is known as “frequent fliers” in the hospital world, or kids  who are often in the hospital.

On this day, the first day of residency, we talk about bedside rounding.  As its name implies, bedside rounding occurs around the child’s hospital bed.  Everyone comes in and has the discussion together:  doctors, the child’s nurse, a pharmacist and the family.  The lead resident gives an introduction about the child and and her illness, and then discusses what they have done and what they need to do before discharge can happen. They will often discuss specific lab and test results.  Then they make a plan for the day, ask if there are any questions, and then move on to the next kid.

But it is a very different experience when doctors are talking among themselves and when they are talking to families.  Families haven’t gone to medical school, they don’t know the lingo.  They don’t know that afebrile means that the child doesn’t have a temperature.  They don’t know that emesis is vomiting. They don’t know what the thousands of maddening acronyms mean.  So the residents, who have spent all of this time learning all of these official terms, need to rethink the way that they report when the family is there.

The new doctors also have to deal with the fact that the parents, normally the ones who are in charge of every action and detail of their child’s life, are feeling helpless and scared.  That the child in the bed is also feeling that way, along with being in pain or discomfort.  The terms of the situation make matters worse.  No one is at their party best, so to speak.  Parents deal with this in different ways. Some parents don’t want to know anything technical, they just want the doctors to fix it as soon as possible so they can leave. Some parents want to know everything, down to every acronym and decimal point, so they can figure out what is going on.   Sometimes parents are hostile or sharp with the doctors as a defense mechanism.  Sometimes they burst into tears.  You never know what you’re going to get.

The temptation is to race through the bedside rounding, to cut corners, or to not answer all of the questions that the families have.  After all, these doctors are in charge of multiple children, multiple illnesses, hundreds of balls in the air on any given day.

We, the parents, are there to say that bedside rounding is important, even when it’s uncomfortable, sometimes especially when it’s uncomfortable.  We are a team, all of us, and we all need to be on the same page.

A team relies on trust.

Which brings me to my favorite question, that is asked every year:

“What if I don’t know the answer?”

These new doctors are used to knowing all the answers.  They are used to being the smartest person in any given room. They have encyclopedic memories.  They have been tested and they have been victorious.  But what happens if, for some reason, they are caught off guard and don’t know what the answer is to a question that a parent or a patient asks?

They are afraid that they will look like a fraud.

But who in the world knows all the answers anyway?  That’s not why they are there.  They are there to find the answers. They might not know them all.  And if a team is built upon the mutual trust of the participants, it is up to the doctor to say, “I don’t know the answer to that, but I will find out and get back to you.”  And the key is to follow through and do that.  They will win the respect of the family if they make that combination of confession and commitment to the truth.

It’s important to say one more thing, and we as parents say this every year too.  When we are all together in the hospital room, we are modelling behavior for our children. We are showing our chronically ill children, who will one day grow up and have to speak to doctors all on their own, how to be empowered to do so.  We are showing them that trust in medicine is important, that integrity is important, that bonds form when everyone is present in the discussion.

It is important to parents of chronically ill children to address the issue, try to fix it, with honesty and integrity, and to model this behavior for our children.  If you think about it, that’s the way life should go, but especially within the confines of a vulnerable situation like a hospital room.  Everyone needs to feel heard, everyone needs to feel respected, and great things can happen.

 

 

 

 

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.

 

Conduits of Care

The thing about being a parent of a chronically ill kid is that I am a storehouse of otherwise useless information.

How many milliliters are in a teaspoon?  Five.

Pizza needs two doses of insulin because of the grease, it outlasts the first dose.

Blood pressure is best checked first thing in the morning.

The only way you’ll know how much cereal your kid eats is by having a measuring cup in the cereal container. At. All.  Times.

Sanitizer is easier on the hands if it has added emollients.

One of the things I know a lot about is what we really appreciated when Wendy was sick by the people who loved us, what to do, what to  say, how to show that you care.  People often ask me for advice on this topic when they have friends who have kids in the hospital.  They wonder what they can do that is both helpful and meaningful to the family going through the crisis.  I LOVE that I can be helpful in this way, and I love that my friends think of me as the person to ask when they want to be kind and giving.  I am a conduit of care!  (So are you.)   I thought that I’d write a few things here for everyone, but I encourage you to still ask me if you have questions.  That’s what I’m here for.

Anything you do, big or small, will be appreciated.  The family going through crisis will appreciate any small effort you make to show you care.

Having said that, some actions are more helpful than others.  I break these down into two camps:  survival and comfort.  There are things you need no matter what, and then there are things that will make you feel better emotionally. Both things are important, but for some reason more people like to focus on the latter.  Let me explain:

Survival.  In terms of survival, the family in crisis has an extraordinary circumstance:  a sick kid, a hospital trip, a scary diagnosis, a prolonged illness, you get the picture.  Yet, they still have all of the added stresses of normal, everyday, average life.  When we were in the hospital for prolonged periods of time, often leaving in an emergency, we left our cats and our plants, food in the refrigerator, a house with a lawn, etc.  Then we drove four hours away and often stayed weeks at a time.  When your kid is in the hospital, you tend to forget these things, but they still exist.  We had wonderful neighbors who first would come and feed the cats and then took them home with them, along with the plants. They took turns cutting our lawn when it got too high.  The local vocational school where I worked had students come who raked and bagged our leaves in the fall. Neighbors shoveled our walkway to the front door when the snow fell throughout the winter.  They took care of our normal problems.  We even had friends who came in and cleaned the house, changed the sheets, and put the basics in the fridge when we returned.  Every time.

Then there are gift cards that are helpful, both for gas and for food.  Don’t underestimate how helpful a gas card is to a family that has to make multiple trips to the doctor.  Don’t underestimate the Starbucks card for a parent that has spent a lot of time awake around the clock.  Even a gift card to a CVS or a Rite Aid, or some other pharmacy is a help.  These are incredibly bolstering for a family in need, and keep them afloat both financially and emotionally.  My cousin came to visit us in the hospital and then walked around and bought gift cards to all of the local restaurants, including the Whole Foods and the bagel shop, knowing that eating was necessary.

Making meals for the people at home is a great idea, but keep it simple, keep it organized.  There are services you can organize through online like meal train that will help you and your neighbors coordinate who is bringing what.  To me, there is nothing more healing than sitting down with my family like it’s a normal day, even when the day has broken open and all Hell is loose.  Having a time to sit together and have a meal is incredible.  It gives you hope that someday, everyday will be normal.

Maybe that means that food gives hope.   It also gives comfort.  Which brings us to our next category:

Comfort.  This is a tough one and it’s hard for me to give good, concrete examples because everyone is different.  When the family is in the hospital, something like a blanket or a fun pillowcase for the sick child is really worthwhile.  We still have those no-sew-throws that some family members made for Wendy.  A robe and slippers if they don’t have one helps with the awkward walk to and from the bathroom.  Do not send stuffed animals, even though it’s so very tempting.  They just take up room and collect germs.

Another idea, if the child is going to be in the hospital or recuperating for a while, is new things to entertain them, not necessarily board games because they can be awkward in the hospital.  One friend brought us a balloon animal kit which was a huge hit, and another friend brought a game that involved a large die, plastic bugs with velcro, and felt “sleeves” we had to wear.  We also got the game “Pretty Pretty Princess” and if you’ve never seen it, it’s worth a look.  The idea is that you spin a spinner and receive a different piece of plastic jewelry, whoever gets all of the pieces first wins.  This is especially amusing when your husband plays, and wins.

I always appreciated a good book, but keep in mind who your audience is.  I was given the book “Eat, Pray, Love”, a book about a woman who was in a loveless marriage and had to find herself by going around the world, eating in Italy, praying in India, and falling in love.  This might have been a book for me at some other time of my life, but when I was sitting next to my daughter who was on a ventilator and more medical pumps than could fit on one stand, I had a hard time relating to this woman who seemed to have everything but was unhappy anyway, which is clearly not the point of the book.

As Michael took the night shift with Wendy in the hospital, he read multiple chapters of Harry Potter to Wendy as their evening ritual before she went to “bed.”  When Wendy isn’t feeling good even to this day, she loves to be read to.

Once the dust has cleared and the family in crisis is home, offering to watch the kids for an evening so the couple can go to a movie or get a massage, that is huge and again helps to make the mom and dad feel like things are going back to normal.

Don’t be afraid to jump in and help!  Lots of times the family doesn’t even know what they need, so don’t be shy about offering.  I love to bring a meal and sit and talk for a while, or more importantly, I like to sit and LISTEN.  Lots of time, people just want a new person to talk to, to unload on, to cry to.  Be prepared to listen.  I often think, overall, that just being there and listening is the best thing I can do for friends and family in crisis.

These are all exercises in grace, where you give without expectation of return, or even thanks.  Don’t worry, they really really are grateful for what you do, they may be too embarrassed to say it, or to say the depth of which they feel the gratitude.  Sometimes “thanks” is all they can get out when what they really mean is “Thank you for being there for me, for taking care of me, for letting me be myself for a few moments.  Thank you for not forgetting me, shunning me, leaving me to worry  through this whole mess by myself.  Thank you for taking care of the little things so they don’t multiply, all of the things I had to let go of to take care of my sick child and keep my sanity.  Thank you from the bottom of my heart.”

That’s what they mean to say, I promise.  I’ve been there.

Photo:  Lasagna, my favorite.  🙂

 

 

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.

 

 

 

 

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.

Snow Day in the Hospital

This unexpected snowy day got me to thinking about a day when Wendy was in the hospital, many years ago.  She had been there for months, literally, and one day in late December there was a heavy snowfall.

Looking from the window of the 17th floor of the Ellison Building at Massachusetts General Hospital, the whole city of Boston looked so clean and amazing.  We were on the river side, and the Longfellow bridge looked like it was topped in cool whip.  Being a child from Vermont, Wendy desperately wanted to go outside, but it just wasn’t a possibility.  She was in heart failure, and we were measuring every ounce of liquid that was going into her.  There was no way we could account for how much snow she would eat, and how much liquid that would be equivalent to.

Wendy was so disappointed, but there wasn’t much we could do as parents.

However, the staff came up with a plan.

The PCA (Patient Care Assistant) went down and got a bowl full of snow.  Wendy’s nurse measured it out, put it on a scale, and slowly let it melt.  They then poured it in a graduated cylinder.  After they figured out how much snow by weight equaled how much water, the PCA went down to the quad again and got Wendy some new, fresh snow.  Can you imagine, a child who has only seen the inside of a  hospital room for months, who only knew the sounds of the machines and the buzzers ,the television, the woosh of the forced air, who only knew the sterility of the meal trays, the plastic covered hospital bed, the stethoscope hanging over her head, getting a bowl of snow?

It is those moments of compassion and spontaneity that we are grateful for, now, looking back.  It’s easy to forget the monotony of the endless days that stretched together during her recovery. But that one moment of brightness, that is one moment that we will never forget. They sustained us then, and they sustain us now.

I was recently reminded of the story when I heard of a similar one on NPR.  The Show is Called “On Being” and it airs on Sunday morning.  One morning in January, I was listening to a man who had tragically lost three limbs through an electrocution accident, and the one thing that brought him comfort in the burn unit was when one of his nurses brought him in a snowball, connecting him back to the real world in profound ways.  I highly recommend taking the time to watch his TED talk which I’ve posted here.   Somewhere in the middle, he tells the story of the snowball.   He now works a as the executive director of the Zen Hospice Project in San Francisco, where the idea is that life still happens even when death looms and it is a combination of compassion and dignity that makes a medical caregiver a healer.

Whether it is called compassion, palliative care, or hospice, the world needs more healing moments.

Photo:  Wendy, the year after the long hospitalization, finally making a big snowman.

 

 

Sometimes You’re Not Ready

Sometimes you’re not ready to hear the bad news.

Bad news:  the news the doctors need to tell you, the diagnosis, the prognosis, the estimations, the best guesses.  Sometimes, even if you want to be, emotionally you’re just not there yet.

When Wendy was struck with her initial illness,  the doctors didn’t have a lot of positive things to say.  She was incredibly sick, and if she survived, there would be a lot of lingering health problems to contend with.  I could tell just by the looks on their faces during morning rounds that things were not going well.  Many years later, the division chair of Infectious Disease told me, “I dreaded coming into your room every day, because I never had any good news for you.”

They did their best to deliver the bad news to us slowly, and sometimes we were receptive to it, and sometimes we weren’t.  It is hard to hear from anyone that your world has been completely altered and some doctors are better at delivering bad news than others.

I remember one of the first doctors who came in to deliver bad news.  It turns out that Wendy’s pancreas was pretty much destroyed, making her an insulin dependent diabetic.  Unfortunately, that is  how the doctor opened the conversation, over Wendy’s hospital bed, in the Pediatric Intensive Care Unit.  She looked at me and said, “Don’t worry, some day in the future Wendy will come to you and want a cupcake, and you’ll know that it’s so many carbs, and you’ll give her the insulin.”

And I remember thinking,  in that moment, that she was absolutely crazy.  I would never, NEVER, be that ok with giving my daughter insulin.  I thought that she might as well be telling me that I’d never notice that hook she now has for a hand and she will eventually learn how to tie her shoe. (Just an example, Wendy’s hands are fine.)  I remember thinking that it was all too overwhelming to bear.  Blood sugar checks eight times a day?  Shots?  Carb counting?  Seriously, What the Hell?  How could this doctor be so callous in her delivery?  Didn’t she have a heart?

A few years later, when Wendy was in kindergarten, a student brought in cupcakes, and the nurse called me.  I approved the cupcake, instructed the nurse to give her insulin for sixty carbs, and hung up the phone, no problem.

Instantly I remembered that day in the hospital.

Damn. That doctor was right.  I just wasn’t ready to hear it.

While Wendy was initially in the hospital, other days were harder.  The day the doctors took us into the conference room to break the bad news about Wendy’s long term condition.  The charts we had to look at, the medicines we would be expected to give.  I remember crying so much that there was no point in trying to stop the tears with a tissue, they just silently ran down my face.  The doctors looked at me with pity and said, “We can do this another time,”  and I replied, “I’ll cry like this then too, let’s just get it over with.”

I later learned that the doctors call that particular conference room the “Room of Doom.”

Then the  the doctors told us that Wendy would need a kidney transplant.  Almost every doctor in the practice told us at different times.  The first doctor told me early on, in the parking lot, in passing.  I hoped he was joking.  Two others told us while Wendy was in the hospital.  One told us in the outpatient clinic.  It wasn’t a sit down intervention style of news breaking like in the “room of doom”, it was just giving an idea of what was coming up in the near future. No tears those times, because the news seemed so abstract.

I remember meeting with another mom whose daughter had a kidney transplant, who told me that I’d likely have to quit my job permanently to take care of all of the details of Wendy’s illness, and the tears came back in a flash. Nothing was going to be the same again.  There was no pretending that it would be like it used to be, I was the mom of a chronically ill kid and all the rules had changed.  It’s fear of the unknown combined with the crushing knowledge of what you ALREADY know that makes it so hard to bear.

Sometimes the messenger IS the problem, like the doctor who tells you bad news like ripping off a band-aid.  It stings and you wonder if they couldn’t have been just a tiny bit more gentle. An ophthalmologist once  told me that it didn’t matter how well we controlled Wendy’s blood sugar, that she would probably go blind eventually anyway.  That could have been more tactful. I still wonder why she said it that way. Some people don’t think about the consequences of their words on a patient or her parents.

Even if the doctors do the best they can to tell you, even if they explain it clearly, even if what they says makes sense.  Sometimes you’re just not ready.

But you will be.

With time. With Healing.  With understanding.  With education.    With support.  With love.

Be gentle with yourself and this journey.

You will be ready to hear the bad news, and move forward.

 

Resilience, A Beautiful Oops

Penny came home from school today SUPER EXCITED.

She said, “Mom, Just WAIT until you SEE this BOOK that I got at the LIBRARY!!!!!”

She showed me the book, Beautiful Oops! by Barney Saltzberg.

The gist of the story goes like this:  Even when something goes terribly wrong, with a little imagination, you can create something that will make you smile, and with the right point of view, it is beautiful.  Take a ripped piece of paper for example, it can turn into a crocodile.  Take a bent corner  and it can be turned into a penguin.

The idea is that even when life doesn’t go your way, you make it work.

And I thought, “Oh My God, she understands resilience.”  Or, at the very least, she knows that we value it as a family.

I wear very little jewelry.  But I happen to wear two bracelets, which I never take off. I even sleep with them.  They are both on my right wrist and from from Mantra Bands.  One says, “Persevere” and the other says “Choose Joy”.  I wear them because I have to be reminded every day, and some days are harder than others.  I’ve sometimes thought of getting a tattoo, but I don’t want to think about what it will look like when I’m ninety.

To me, the combined message on my bracelets the definition of resilience, persevering and choosing joy, and this is what I try to teach my kids.

I’m not going to be some glib, everything is going to be all right, happiness peddling soothsayer. It glosses over the real hardships of life.  The truth is that being a parent is hard, being the parent of a chronically ill kid is (arguably) harder, and there are lots of things that you can’t control that will drive you crazy, make you cry, and wonder about the fairness of the world.

But in our family, you take the problems, you look at what you’ve got and you either make it work or you change it and if you have a choice, you choose happiness.

When Wendy was recovering and we were waiting for a kidney, we found ourselves in an apartment in Charlestown, Massachusetts, a full two states away from our home.  Though we had amazing, uplifting support from friends and family, not many people lived near by.   Most of our week was taken up with doctors’ appointments, visiting nurse appointments, and lab tests.  But this was also a time for Wendy to recover and grow stronger.  We had decided to not send her to the rehabilitation hospital at Spaulding, because to put it quite bluntly, it was depressing and we just couldn’t do it.  Day care was absolutely out of the question, but Wendy needed to see and be around other kids, healthy kids.  I couldn’t just keep her in the apartment watching TV.

What we ended up doing was buying family memberships to four museums:  The Museum of Fine Arts, the Children’s Museum, the Science Museum, and the Aquarium.  Every day that we had a doctor’s appointment, we also went to a museum.  I would pack all appropriate medication that she needed along with a lunch, and we would be gone for the day.

MFA lady boat

At first , Wendy was so weak that she was just in a stroller and she tired easily.  We would have patterns of things we would do at each museum.  At the MFA, we would go to the gift shop first and pick out three post cards of art work she liked.  Then we would go on a scavenger hunt and find the pictures.  When we found each one we would sit for a moment and look at it and talk about what we thought was important or create a story from what we saw.  As she got stronger we found statues and mimicked their postures. (See picture at head of blog post.)

 

At the Science Museum, we always went to see the science in the park exhibit, where you could see science in action from outdoor equipment like the swings or the teeter totter.  We would also go and see the chicks and the monkeys.

At the aquarium, we would go to see the penguins.  For Wendy’s birthday, because she had been in the hospital for so long and because she spent her birthday in the hospital, the Child Life team adopted a penguin for her, whom we named Poppy, and we would go and visit him, then walk up the corkscrew ramp, while looking at all of the sea life in the giant cylinder that was surrounded by the ramp. When we got to the top we would look for the turtles. Then we would take a ferry home from the Long Wharf.

At the Children’s Museum, we would play with the trucks or the water works.  When Wendy got stronger, she would climb the webbed construction in the center of the museum while I would sit at the bottom and watch her.

On the days that we didn’t have a doctor’s appointment, we would walk to different parks around the city.  As Wendy got stronger, she would attempt newer and more exciting structures at the playgrounds.  It was rehabilitation and education through play, and gave our days structure besides just going to the doctor, getting a blood draw, having the visiting nurse come.  We made it work.

Another issue was Halloween.  How do you go trick or treating with a diabetic kid?  For other parents the question might be, How do you take a kid with nut allergies trick or treating?  How do you keep your kid safe while still feeling like a normal kid?  Our solution at first was to go ahead of time to neighbors and give them items that Wendy could eat so that when she came trick or treating she could enjoy what they gave her. As she got older, we paid her for her candy, by the piece.  We would let her pick out 10 pieces and then pay her for the rest, which we would give away to charities, friends who didn’t trick or treat, or to the college students who studied where we worked. We had to make it worth Wendy’s while, so that she wouldn’t think it was unfair that she couldn’t eat all the candy she got.

penny wendy halloween 2011

 

Now there is the teal pumpkin project, which is an amazing solution.  Parents agree to have both candy and non-candy items, and then paint a pumpkin teal to tell parents of kids who can’t have traditional sweets that there is something their child can enjoy.  It’s a fantastic idea.

Every day we try our best to make Wendy feel as normal as possible enjoying as many of the things that non-chronically ill kids enjoy.  The target is always moving, both with Wendy’s health, her growing up, and new technologies that are on the horizon. The latest challenge has been sleepovers at other kids’ houses. But we do the best we can, with what we’ve got.  We teach our kids to do the same thing, find solutions that work.  Solve the right problem.  Be flexible.

Make it work.

Sometimes with the right point of view, the result is beautiful.