We Cannot Lose Hope

I have been watching the world this week, and despair has begun to creep in. I remember this feeling, when Wendy was super sick, this feeling that it was all so overwhelming, that I didn’t know what to do, or where to begin.  It is a feeling of paralysis, like an elephant is sitting on your chest.  It is not knowing where to begin, and fearing you never will.

But the one thing I have learned in the ten years of being the mom of a chronically ill kid, it’s that the only thing you can’t lose is hope.

What is hope?

Hope is looking at the situation for what it is, but realizing that there is still room to make it better.  Hope is taking stock of reality and moving forward.  Hope is keeping the belief alive in your heart that there is still possibility.

Possibility.

Like love, hope is a noun and a verb, which makes it special.  You hope things will improve.  You hold hope in your  heart.  You get the idea.

When Wendy was in the PICU, hope was that she would go to the floor.  When she was on the floor, hope was that she would get released.  When we were home, hope was that she would improve.  When she improved, hope was that she thrived.

I did not lose hope.  It was always in a special place in my heart.  It’s still there.

The events of Charlottesville were a shock.  To see such hatred opened a dark space in our national consciousness, one we previously wished to not see.  There are other demonstrations across the nation tomorrow, and it is possible that they will end in violence.  People I had previously thought to be good and decent have taken the side of hatred, have rationalized it, have tried to shrug it off.  I stand in disbelief that we continue to have the problems of racism, antisemitism, sexism, Islamophobia, and xenophobia in 2017.   It’s like I’m waking up to a nightmare every day to see citizens of the United States openly fly the Nazi flag from their front porches.

I have thought about taking my girls to a rally tomorrow, because I want them to see that it’s important, to stand up to hatred.  But the Boston police have just issued warnings, to wear helmets and goggles, to bring masks.  That’s not peaceful protest, that’s preparing for war.  And I’m scared that I won’t be able to protect them if things go wrong.

But I still hold hope, and I have learned that hope can exist in small spaces and small actions.

And so we will make signs and we will post them outside.  We will create a flag.  We will talk about racism.  We will hope for a better tomorrow, a better September, a better 2018.

We cannot lose hope.

Sometimes You Win, Sometimes You Lose, Sometimes It Rains.

I’ve been thinking a lot about sportsmanship lately.  We  witnessed great teamwork and sportsmanship at the World Transplant Games in Malaga, Spain.  As I said in my previous post, I’m just so pleased that Wendy, and the rest of us for that matter, get to participate in these events.

The thing about the Transplant Games, is that every participant has a second chance at life, and so they are taking it.  That doesn’t mean that they are going to win their sport.  The games are competitive, but the point is that they’ve already won just by being there.  They are present because someone donated an organ and saved their life.  So, it really is a celebration of life, more than anything.  The competition is secondary, but let’s face it, it’s the reason we are all there; we can’t just sit around and think about how lucky we are all the time, we have to do something with it.

Wendy was asked at the World Transplant Games if she would fill in for a woman from Team USA for a swim relay.  Wendy was happy to do it.  But on the day of the relay, the woman decided that she was going to do the relay anyway.  You see, she was a double lung transplant recipient, as was her twin sister. They both had cystic fibrosis and both had double lung transplants in their twenties.  Her twin sister had died a few years ago.  This woman knew that this was likely going to be her last World Transplant Games, and even though she wasn’t feeling so hot, she wanted to do the relay.  Wendy will likely have many more World Transplant Games ahead of her, but for this woman, the experience was finite and she said as much.  Her mother and husband were there to cheer her on, and she wanted to complete what she had set out to do.  She swam and did well.    We cheered them on.  They didn’t win the medal.

It’s hard and yet an honor to bear witness to these moments, and to listen to these athletes acknowledge and give voice to their very real mortality.  It makes the athletic achievement more memorable knowing all those people have triumphed over their illnesses just to be there, knowing that they might not be back.  It’s humbling to know that your kid is in that boat as well.

It also allows you to see the big picture, and for your kids to see it too.

A few weeks later, Wendy was in a normal, healthy, kids triathlon.  She came in third for her age group, a fantastic feat.  But when it came time to announce the winners, Wendy’s name wasn’t called, and a girl who had a slower time was announced in her place.  Wendy looked at me, and so I went to the officials to ask what had happened.  It turned out that because of her transplant, she was in a different category in the computer, a category of one.  There was a mistake, but that other thirteen year old girl had already been given her trophy and was on her way home.

Wendy did not shed a single tear, did not display anger or frustration.

The organizers of the triathlon were apologetic, and wanted to announce her name anyway, announce that she was a kidney transplant patient and that she still came in third.  Wendy wasn’t interested in any of that.  She didn’t care that her name wasn’t called, she didn’t want it announced about her kidney.  She quietly shook the hands of the organizers and celebrities behind the grandstand, thanked them, and wrote down her address so they could send her a trophy.  That was it.

I was just as proud of her for that moment as I was during the World Transplant Games, when she won the gold medal for the 100 meter dash and broke the record for the games.  Why? Because she didn’t ruin the moment for anyone else, because the acclaim wasn’t the important part, but the recognition of the accomplishment was. She wasn’t a sore winner, or a sore loser.  She could see the big picture.

As we were driving home from the triathlon, I thought of the quote from Bull Durham, “Sometimes you win. Sometimes you lose.  Sometimes it rains.”

You just keep going, because you can.

And you’re grateful.

 

World Transplant Games: Community

We’ve recently come back from the World Transplant Games, in Malaga Spain. It is a bi-annual competition where transplant patients from around the word gather and compete in athletic events.  This year, over 1500 competitors came from over 50 countries.  Some teams had over 300 participants, some teams only had three participants.  All of them came to make connections and create community.

It used to be that people would identify themselves solely by the place where they were born, and while that is still true, people also identify themselves by who they are and what they’ve done, and they look for like minded people who share their experiences.   But what happens when you have a rather rare experience, like getting a solid organ transplant at a young age?  Wendy knows very few kids who have shared her experience, and she sometimes feels like a party of one.  It’s been important to Michael and Me to help her find her community.

The World Transplant Games are a great way for her to meet people from around the world who are just like her.

She competed in swim and track events. During those events, she met girls her age who also had organ transplants, but who were from Italy, Britain, Hungary, or Australia.  She and they would introduce themselves and gather before competitions, and then when it was time to compete, they would.  Then they would gather back together and giggle and exchange addresses.  All these girls, who were once gravely ill, who take medications multiple times a day, from all over the world, sharing this experience at the age of thirteen.

I don’t know what you were doing at the age of thirteen, but I was wondering if my mom could bring me to the Mall to meet my friends. I was not hanging out with kids from around the world who had organ transplants, and then competing my heart out when it was time.

Across the board, this group of girls broke world records in swim and track.  They are determined, they are fast.

Most of all, they are both defined by their transplants and transcend the commonly held belief that they are “sick kids”.  They are not.

They are warriors.

Then there is the group of men and women that Wendy met through Team USA.  We had over 150 competitors from all over the country.  They ranged in age from just younger than Wendy to members in their seventies.  They help to show her that yes, life has its ups and downs, but that you keep going.  I think (as a mom) that it’s super important for kids to get positive messages from adults who aren’t me, because at some point our kids turn our voices off.  So when Wendy was a part of the 4 x 100 relay race with women who were kidney, lung, and heart transplant patients, who taught her how to receive the baton, who showed her where to line, up, and who were her loudest cheering section while she ran, well those other women were real role models for her, and I am forever grateful to them.  They probably didn’t even know they had done anything.

In the coming days, I will be writing another post about Wendy and her individual journey at these games.  I’m super proud of her, and of her journey.  But this blog post had to come first.  This is a community worth celebrating, people who truly are living their best lives since they’ve been given a second chance.  Competitors who radiate gratitude at the ability to feel good and come together to compete.  A community that  supports each other, celebrates each other, claps for the person who comes in dead last as much (if not more) as the person who wins.  Because, and I say this without hyperbole, they have all won just by being there.

Wendy is lucky to be a part of this amazing community.

I am grateful to witness it.

The Cost of Living Vibrantly

(I came across this piece this afternoon, written when Wendy was 10 and Penny was not yet 5.  It’s funny, a few things have changed, but the core message of how we approach life has not  Enjoy.)

What is the cost of living vibrantly?  Living the life you want to live, with travel, adventure, love, laughter, good food, gratitude?  We all know the draw to living vibrantly: it’s living with your whole heart.  Who doesn’t want that?  But what are the costs?

I have a chronically ill child, Wendy.  She’s immune suppressed, thanks to a kidney transplant, and she has a constellation of added health complications like diabetes, abdominal surgeries, histories of high blood pressure and heart failure.  You wouldn’t know it to look at her.  She’s the fastest kid in her school, running the mile in under seven minutes.  Last week she placed third in the back stroke at her swim meet.  She’s run in races and triathlons.  She also plays two instruments, the violin and the trumpet.   And above all of that, she’s a funny, sweet, sensitive kid, a good big sister to our younger daughter Penny, a good daughter to us.  She tries very hard to be honest and fair, which is all her father and I ask of her. She is the definition of vibrant, she lights up a room when she walks into it.  People gravitate to her energy and her easy smile.  All this in a ten year old body.

Many years ago, when we were initially faced with her diagnosis and health complexities, Michael and I decided that we would do everything we could to make Wendy’s life as normal as possible.  She would go to public school instead being homeschooled.  She would play sports if she wanted to.  Michael and I know that we have to be present at all of these activities in case of exhaustion, low blood sugar, or if she’s just out of sorts.  Sometimes it’s a little grating on the nerves, it is often exhausting, but I always maintain that you don’t know what you signed up for when you agreed to be a parent and all of these difficult, time consuming things are a part of the package.  That’s it, the end.

We know that with every decision, we make a calculated risk.  We no longer eat at buffets or have “public food”, food that has been sitting around for fear of contamination or food borne bacteria.  We are fastidious about hand washing and not sharing food or drinks.  We love to travel, but when we do, we have Wendy wear a mask on the plane and bring our own pillowcases for the hotel room. We appreciate when friends tell us they are sick or have sick kids, and we avoid them, if you’ll excuse the pun, like the Plague.  These are our only defenses against unforeseen illness.  We know that they are not perfect and they don’t always work. We don’t keep Wendy in a bubble, nor do we want to.  We try really hard not to stifle her exuberance.  So, sometimes she gets sick, a side effect of living a vibrant life.   Looking back we can often see the warning signs, but might not be paying too much attention:  blood sugars going awry, a cough, some diarrhea or maybe an upset stomach, sometimes a headache.  Do these seem vague? Could they just be a tough day, a miscalculation? At what point do the small signs lead to a big problem?   Or maybe they just fade away, like most kids on most days.  A good night sleep and a band aid on the boo boo and send her on her way.

Sometimes, you can see illness coming, seeping through Wendy’s immune system, and as a parent, you can’t help but worry.  Here is a good example.  We went to Colorado over Christmas.  We normally try to avoid winter travel because of all of the pervasive illness, but we had not been to Colorado during the winter as a family in over seven years, and skiing is Michael’s favorite thing to do, so we decided we would give it a try, knowing that every day of skiing she would be with us, and not with a ski school, knowing that there would be some down days.  It’s all part of the territory.   We mapped out where the nearest hospitals were that could treat Wendy, even including the possibility that we would be snowed in and the passes would close.  We had a Plan A and a Plan B. We had her medical letter packed along with all of her medication and additional supplies.  She wore a mask. We had the pillowcases.  We crossed our fingers and held our breaths and got on the plane.

The day we arrived, my father in law, with whom we were going to stay, came down with the flu and pneumonia.  He had been travelling to South East Asia and ended up with a nasty combination of illnesses, even though he had gotten the flu shot.  Not only did he feel awful physically, but it nearly broke his heart that we had to change our plans.  We were to have zero contact with him while he was sick.  Naturally, we had to change our arrangements as to where we were going to sleep for ten days, not an easy feat at a ski resort over Christmas break.  We ended up staying in three different places, and only saw my father in law on the last two days when he had finished his Tamiflu and antibiotics and seemed to be doing better.  But we had also been on planes and in airports, at restaurants and ski resorts, with daycares and group lessons and in tiny little gondola cars with people from around the world.  Hello, germs, let me introduce you to my immune suppressed kid.

A few days after returning home, my four year old, Penny, developed a cough.  Not a big deal, kids do that, they get snotty and coughy and life goes on.  Well, two  nights after that, Penny developed a fever of 101.7, which is significant but not alarming, and we just kept her from school, tried to keep the girls apart as much as possible, and went on.  By Friday night, Penny had a killer cough, one that you know just doesn’t sound right, so she went to the doctor and it turned out she had pneumonia, but not the flu.  She was put on antibiotics, and again we tried to keep the girls apart.  Wendy had even stopped using the same bathroom upstairs, “just in case” Penny had forgotten to wash her hands in the middle of the night.

That same week, Saturday comes and Wendy has a swim meet.  Michael goes with her because I’m staying home with the younger one.  He can’t seem to control Wendy’s sugars and the site where her insulin pump is attached is painful.  When they get home, we take off the pod (it’s a kind of insulin pump) and with it comes a glob of puss.  Uh oh.  I can remember when we put it on.  Wendy didn’t want to shower before the application like we always do, because she showered that morning, but we told her to quickly do a body washing shower and then we’d apply the pod.  Maybe she didn’t wash so well this time.  We applied antibiotic ointment, put a bandaid on it, put on another pod and sent her to her indoor soccer game.   Later that night, we squeezed it again, same result, same solution.  But she’s had staph infection before, it looks like a pimple, but it wreaks havoc on her body.  Look up pictures of staph on google and you’ll have nightmares for a week.

Monday morning Wendy woke up with an upset stomach and cough.  Her sister was staying home already, so I suggested to Wendy to go back upstairs and try to get some sleep.  Usually, Wendy can never get back to sleep, she hasn’t been a napper since 18 months and she has a hard time sleeping at night.  She usually goes to bed at her appointed time and then reads for another hour or two, and then wakes up with the sun.  Monday morning, however, I went up to check on her and she was sound asleep.  I checked but she had no fever.  When she woke up, she has had a few bouts of diarrhea.  And she still had an upset stomach and a cough.  She was pale and less than her energetic self.  She was not normal, and yet, she was not particularly sick either.

Maybe it’s staph.  Maybe it’s pneumonia.  Or both.  Or neither.  Maybe, but not likely, it’s something else entirely different.

It’s the strangest feeling in the world:  waiting for your child to get sick enough to go to the hospital, but there I was.  Waiting for something more, or something less.  More means something we can go on, call the doctors, get blood work, think about going to the hospital and getting admitted.  Less is that she’s well enough to go back to school the next day.  We want less, but we can’t control more.  What does one do on a day like that day?  I found myself making lots of food:  two quiches in the oven, two corned beefs in the crockpot.  I checked on my toiletry bag to make sure it had everything that was necessary.  I had not gone so far as to pack a bag for the hospital, but I had organized in my mind what I would take if we needed to go.  It’s an odd place to be in my mind.  I actively avoided making any plans for later in the week “just in case” and I warned work.  Mostly, I just worried and watched my two girls, keeping track of who ate their lunch or who coughed which time.  I spent a lot of mental energy worrying, and tried to put a lot of things in perspective.  It’s just another small illness.  We’re a team, we are going to get through this together.

But it’s hard, this waiting, for something, for nothing, for an answer.  And I worry about what Wendy’s anxiety might be, she who may be going through the pokes and prods, the blood draws and the chest X rays, the uncomfortable hospital beds and the bad hospital foods.  And then part of me is mad, really angry for thinking about all of that, for not crossing that bridge when we get to it.  The truth is, though, that we’ve crossed that bridge so many times that it’s become a rather well worn path and it’s an easy place to go to in my mind.

In twenty four hours we would know.

The middle of the night she spiked a fever, 102.4, and we knew that we were going into the hospital.  Our hospital home is Massachusetts General Hospital.  I remember when we first were sent there from Dartmouth in Hanover, New Hampshire, when the attending told me that was where we were getting transferred, I asked if it was any good, and he laughed.  It’s only one of the best in the world he told me.  We have been going there now for almost seven years, and yet it still surprises me when a doctor or nurse recognizes us.  After all, when you walk into an emergency room that services thousands of patients a year, you don’t expect the triage nurse to say, “Oh, hi, the kidney transplant patient, right?”  I don’t expect the Pediatric Attending of the Emergency Department to say, “Hello, Darcy.  My name is  _______.  I treated your daughter years ago.  I’m sorry you are back but it is nice to see you.”

After deliberation between the doctors and tests that need to be done, a basic plan is set into place, and that usually includes hospitalization for observation.  No one is going to send an immune suppressed kid home with a 102 fever.  No one.  So we settled in for the inevitable.  The wait.  The transport.  The room on the pediatric floor.  We always know we are staying when she gets and IV port.  That’s the ticket to upstairs.  It’s the first to get put in and the last to go before you’re released.  It’s like a passkey, you don’t get in without one.

We have been in dozens of hospital rooms, and yet they are all the same. The colors are soft, never overbearing, never what someone might call offensive in any way.  The floors are always clean looking.  The cabinets are made of some kind of laminate; they could never be considered a masterpiece of natural wood.  The tables and bed stands roll for ease of movement.

We fall into a regular pattern for the day.  Doctors come first thing in the morning to examine Wendy.  They poke and prod and press on her belly, they ask her if she is in pain, they listen to her heart and lungs, they look at the monitors.  Then they leave.  Nurses come in the first part of the day for weighing and measuring, for giving daily medications.  Then breakfast, some sort of protein like a hard boiled egg, sometimes a strip or two of bacon.  Wendy always orders a sugar cereal that she would never in a million years get at home, and I let her because I think to myself how many pleasures will she get in this day, how many small victories?

We see staff members, the woman who brings the breakfast, the man who cleans the room, the Child Life Specialist asking what Wendy might like to play with that day.  Sometimes there’s a special event like music therapy or a visiting sports team or therapy dog, and I find that I’m grateful for the distraction, grateful to give something for Wendy to concentrate on other than feeling awful  and confined.

Then there are rounds, where a whole swarm of doctors come by and report on Wendy.  If she is there for a long time, they give the whole history, and for those who have not heard the story, I watch to see them mentally calculating all of the complications and things that can go wrong.  There is something disarming about watching young, smart doctors think through a problem. Sometimes when a young resident is reporting and doesn’t know the answer, they have to refer to their notes or the computer that is brought along on a rolling stand.  If the attending physician is upset with that young doctor and they feel it is something he or she should know off the top of their head (and if the attending knows me and my head for numbers) they will say to the young resident, “Ask the mom, she knows the answer,” and I recite Wendy’s creatinine, or her BUN, or some other number from her drawn blood. I can tell you all of Wendy’s medications in doses and milligrams, I can tell you her insulin to carb ratio and how much fluid she is required to drink in a day.   I don’t mind being used as an example of a good mom, but I do feel badly for the resident who is slightly embarrassed.  A plan is then made for the day, I push for definitive times and actions, and sometimes get answers.  They know that I will keep asking until the definitive answers are provided and they respect that, many of them thinking that it is what they would do if in my place.

A hospital room is more about what it lacks than what it has.  It lacks any sort of comfort or human warmth.  It lacks background music.  It lacks pictures on the walls, or pictures in frames.  It lacks a comfortable down pillow or a duvet cover.  It lacks plants or any other living thing.  It often lacks happiness, it often lacks laughter, and it often lacks children, at least healthy children, at least children who are healthy enough to joke and dance and sing.  There are very few hugs because of all the tubes and wires that are hooked into Wendy.  There are a lot of sighs and shifting and worrying.

It is not comfortable.  It is not meant to be. You are never fooled into thinking that you are home.

The most difficult times in a hospital are in the afternoon, when no one comes to visit, when doctors are writing their notes and nurses are taking their lunch breaks, and all I can do is sit next to Wendy and watch TV with her, or watch her fitfully and uncomfortably sleep while I look out at the world.  If we are lucky, we have a room on the river, which is beautiful, especially at sunset.  I try to think of the good things like watching the Duck Boats in the water, seeing the runners along the paths, sometimes seeing the rowing crews and their darting precision.  I try very hard not to think about what I am missing, what Wendy is missing, in that outside world.  Sometimes, though, the thoughts creep in.  I try to keep these thoughts at bay by making future plans.  This last time we were in the hospital we made a list of all the people we wanted to come to our party to celebrate the 5th anniversary of Wendy’s kidney transplant, what we called her “Kidneyversary.”  It helped us keep perspective.

Then it’s late afternoon and shifts change.   A new nurse arrives and does vitals.  Doctors visit before they go home to families and dinners and soccer games.  A plan is made for the evening and if we are lucky, we get a forecast for the next day.  Then maybe I play a game with Wendy or take a trip to the toy room.  Sometimes a volunteer will come in and I can take a break, get a cup of coffee, walk a lap around the hospital complex, make a few calls to my parents and best friends to give them an update.

It’s hard to know how many days we will be in the hospital, but I know that the doctors try to get us out as quickly as possible.  They monitor everything. I know Wendy is getting better when she starts to complain that the hospital is boring, that their water tastes funny, that the food is gross.  She gets restless.  We begin to lobby for release, and it’s more like a negotiation with the doctors.  IF Wendy’s labs look good and nothing grows, IF she can eat and drink normally, IF her fever starts to trend down, IF she can take oral instead of IV antibiotics.  We set goals, we make Wendy a part of them.  We push and the doctors push back.  This is part of the game we all play.

Finally, the  doctors decide to discharge us.  Then we wait.  For the medications.    The coordination.  The final orders and the follow up appointments.  The last thing to go is the IV port.  We know when that is out of her arm that we are really going home.

When we are released, we turn the music up loudly in the car on the way home. Once we are finally home, we all strip down out of our clothes and wash everything we brought to the hospital whether we wore it or not.  I make spaghetti and meatballs and Wendy requires a salad every day for a week with balsamic vinaigrette and kalamata olives.  She takes a long, hot soapy bath and we scrub off the adhesive from the bandages.  We snuggle down in to her bed with her stuffed animals and read stories.  We all go to bed early and sleep in the next day.

After all of these years in the hospital with Wendy, I find that I continue to be terrified with every unexpected trip, not knowing what brought us in this time, what micro-organism or virus or part of her body is malfunctioning.  The part that is easier is that we know a whole cadre of doctors and nurses who know and like us, who stay for a while to talk, who hug us when we leave.  We know the names of their children and where they are going on vacation.  All of these things add up to the knowledge that they are going to do the best they can for Wendy, they know her well, know her history, know us as her parents.  I am confident in their abilities, I trust them and that can go a long way toward comfort and one less thing to worry about.

So what is the cost of living vibrantly?  For Wendy, it’s the same cost.  She will go into the hospital when she gets sick.  But she would anyway, even if we kept her in a bubble. We have no way of knowing if she would go into the hospital more times or fewer times if we kept her sheltered, but that’s not the point. The difference is the outlook.  We are helping her live her best, most authentic, most exciting life.  As the parent of a chronically ill child, worry is a part of everyday life, and trips to the hospital are inevitable.  Being prepared, mentally physically, and emotionally is all I can do.   But we choose not to let our fears make our decisions for us.  The rest is up to chance and that is never easy to accept.  I wish that I could control it all, but it’s not possible.  So instead we live the way we want to live, and we teach Wendy to do the same.  Perhaps that is freedom.

Your Story Matters, Share It

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

That happened to me.

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

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

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

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

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

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

I gave my speech for Your Best 10 yesterday.

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

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

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

 

 

Giving Yourself Time

Caring for the Caregiver, Part One.

No one ever says “I want to be the parent of a chronically ill kid.”  No one.  Ever.  Yet, here we are, extra worry, extra stress, sometimes extra pounds due to poor eating choices.  We move forward because we have to, there is no one else who is going to carry this burden for us, though we cherish our friends all the more deeply because they do lighten our loads in more ways than we thought possible.

So you take care of your sick kid, and you take care of your family, and you talk to doctors and pharmacists and insurance companies.  You take care of your house, animals, house plants if you have them.  But do you take care of yourself?  Have you taken steps to make sure that you are as healthy as you can be?

I know the answer:  probably not.

Because we always put ourselves last.

But that’s not the right thing to do, for a number of reasons.  First of all, you are showing your kids that it’s ok to not take care of your body.  In this world, that is not what we want to be showing our children, we want to show them that their bodies are super important and will carry them through the rest of their lives.  When my daughters get their new teeth in, I say to them, “Take care of that tooth, it has to last ninety-five more years,” and they laugh at me, but I’m being serious.  This is the only body they get.  Yours is the only body you get.  You have to show them that it’s sacred.

Next reason:  you can’t be the best person you can be unless you take care of yourself.  You will eventually collapse.  It’s true, and you know it.  We all want to think that it won’t happen to us, but we all know, secretly, that it will.  But we can’t create more hours in the day, so what exactly do we do?

When I was a stressed out college student, I went to the counseling center, and the counselor there gave me a week’s calendar.  It was broken up by hour.  Twenty-four blocks for each day.  Imagine.  Then he had me block off eight hours for sleep a night and three hours for eating.  That was eleven hours, and it still gave me thirteen.  After then blocking out the time for each class, and time for studying for each class, I was amazed to see how much time I had left.  I am a visual learner, so this helped me actually see my days.

This is a great excercise, I highly recommend doing it.  (Make sure you give yourself the 8 hours of sleep and three hours to eat!)

https://www.template.net/business/schedule-templates/24-hour-schedule/

Ok, now you can see your day.  What are you going to do for you?  Small steps yield big results. I would first recommend daily meditation.

You read that right:  daily meditation.

Here’s what you need to do.  Find a spot, the same spot every day.  Sit down.  Clear your mind, breathe, and just be.  I know, I know, you think that this is impossible, that you have too many things running in your brain to shut down, and I can tell you, it takes practice, it takes discipline.

I sit at the side of my bed, on the floor cross legged.  I concentrate on my breath, four counts in, four counts out.  I ground myself with a mantra.  Everyone’s mantra is different.  It’s the thing that you can say that tells you that this is your moment.  My mantra is two sentences.  I say them, and then I let my thoughts go.  And I sit in breathing stillness, for about ten minutes.

I didn’t start with ten minutes.  I started with two.  I would set a timer.  And then I worked out to three, then four, up to ten.  My girls know that this is an important time for me, because I’ve told them so. Actually I told them unless they’re bleeding or on fire not to interrupt me during my ten minutes.

Here’s what happens.  My breathing slows.  My mind sometimes thinks of things, but I let them go.  My body tells me what is hurting, so I often do a few stretches after the meditation.  (I actually call this my stretching and meditation time.) Sometimes my intuition tells me to check in on certain people during the day (It’s amazing what your subconscious picks up and you don’t realize it.  Which kid is feeling left out, who is acting stressed, etc.)  Then I end with thanking God (or the Universe if that’s what you prefer) for all of my blessings, sometimes naming them, sometimes not.  Then I take a deep breath in, breathe out, stand up, and start my day.

So basically, I take deep breaths, I listen to my body and my intuition, and I express gratitude.

Not so hard, right?

I try to do this every day, but in reality I might miss once or twice a week. In those days I notice that I’m more scattered with my thoughts, I might get flustered or angry easier.  But the good news is that the more you do it, the better you feel.  And though I do it first thing in the morning, you can do it anytime.  I have been known to meditate another time in a day if I know my evening will be stressful, it’s not often, but I know I can go back to that space and give myself a few moments to collect myself.

This may seem too New Age for you, and I get that.  But taking a few moments every day to check in with yourself can only help you.  If you start, let me know a few months down the road how you’re doing.

Time management and giving yourself time.  Imagine how much better you will feel.  Good luck.

Life happens, adulting is hard, coffee helps.

I was hurrying from my classes the other night, on the way to the launch of Wendy’s cartoon at the Boston Society of Architects.  There were roughly seventy people there, all there to support the endeavor that took over two years to create, from start to finish.  There were some of Wendy’s doctors, some college friends, some neighbors.  There were the architects who worked on the cartoon, some administrative types from Massachusetts General Hospital, and other parents from the Family Advisory Council.  Wendy brought a half dozen of her closest friends, and wore her Christmas Tree hat to celebrate both the cartoon and the season.

If you told me ten years ago that this is what my life would look like, I would tell you that you were patently insane.

Ten years ago I was living in a small Vermont community, with a perfectly healthy, almost-three-year-old daughter.  I had been to Boston for two weekends in my life.  I had never heard of Massachusetts General Hospital, knew exactly one architect, had never met someone who had received an organ donation, and had only heard of e-coli from the Jack in the Box outbreak from 1993.

One year later, my almost-four-year-old was fighting for her life, on more pumps than would fit on the pole, with no clear answer what was causing this massive infection that had weakened her heart as well as all of the damage done to her other organs.  She spent every holiday in the hospital that year and we lived on and off in Boston for a year and a half in hotels, apartments and hospital rooms.

It just goes to show you that you never know what life is going to throw at you.

Now, we live in a different town, we have different jobs, we have additional friends.  I’m on the Family Advisory Council at MGH, we open our homes to strangers through Hospitality Homes, and I’ve met amazing advocates for patients and families in the world of health care.

It has been a very long road, but here are some things that I’ve learned.

Don’t pray for deliverance.  Pray for strength.

Make decisions from facts and not fear.  When you know you are looking to fight another battle, figure out what you need, and then make it happen.  That’s the reason we moved, to be closer to the hospital.  We knew that big battles would come in the future, and we wanted to be as prepared as we could possibly be.

Ask for help when you need it.  There is an ethos in place that we shouldn’t ask for help, but the fact of the matter is that we all need help sometime, and you need to be able to clearly define what you need when you are going through a crisis.  People who love you want to help you, but they don’t know how.  Help them to help you by telling them exactly what you need.

Let yourself feel the feelings, and give them a name.  If you’re scared say so.  If you’re angry, say that too.  If you’re nervous, figure out why.  Once you name your feelings, they have less power over you because when you name them you are no longer ashamed to be feeling them, and shame makes all of those negative feelings double.   Be prepared that others will be surprised when you give a name to these feelings.

Even when you are going through hell, listen to others’ worries and fears.   Really listen. They have hard times too.  Even when you are going through your worst days listen to the stresses of your friends and give them the space to express them.  That is friendship.

Be grateful, even when it’s really hard.  Find things to be grateful for.  Be grateful for the small steps.  Be grateful for the people who support you.  Be grateful for the sunrise.  Tell people how much they mean to you.  Thank people for small actions.  It will help the everyday crap that you have to slog through, because we can escape a lot of things, but not bureaucracy and bullshit.

Be open to new experiences, even when they’re hard and you are worried or scared or nervous.  I actually have to say to myself, “I am open to this moment.  I am open to this experience.”

Give back.  When you’re ready.  When you can.  With what you have.

Know that hard times are going to come.  All of our roads are bumpy.  But while I don’t believe that everything happens for a reason, I do believe that we do the best we can with what we’ve been given, and then we’re grateful for that too.

Teach your kids that these things are important, and not just with actions, but with the words that go along with them.  It encourages you to be a better person and a parent when you actively remember that your kids are watching, they are listening.

Life happens, adulting is hard, coffee helps.

And finally, I’m not sure that being the parent of a chronically ill kid ever gets easier.  It is always scary.  There is always a feeling helplessness.  The difference is, now I know it can be done, whereas before I thought it might be impossible.

That is perhaps the greatest lesson.

Happiness, All Tied Together

It wasn’t much to look at.

The creche was a simple creation of olive wood carved by an average craftsman.  Mary and Joseph, just a few inches high, knelt on either side of the baby Jesus already in the manger, all glued down to a single wooden platform.  Sheep lay down on either side of the manger and a camel and donkey were separate, meant to be placed along the sides.    Instead of golden colored and shining, everything in the box  was green and gray and slightly fuzzy.  We hadn’t taken it out for two years, and the box that held the pieces had apparently gotten wet and became a breeding ground for a devastating mold that had grown over the whole thing.

Michael and I looked at each other, not knowing exactly what to do.

My first thought was to just throw it out, it was beyond redemption, but I could tell by the look on Michael’s face that this revolting thing had to be saved.

It held sentimental value.  Michael’s grandparents bought it the year he was born in Jerusalem.  They had it all the years of his life in their small apartment in a retirement village in Westminster, Maryland.  When Michael’s grandmother died, I was pregnant with Wendy, and she had specifically said that we should have the crèche.  In fact, when we were cleaning out her apartment, it had a note attached to it in her shaky handwriting with our names on it, where they bought it and the year.

Michael’s grandparents were incredibly good with labels and history and legacies.

We hadn’t opened the box for two years because Wendy had been in the hospital the year before.   We spent every holiday in the hospital that year, but I will never forget the Christmas of 2007.  Wendy was so sick that the doctors wouldn’t discharge her, would only let us take her out for a few hours to our apartment two blocks away.  Everyone was released at Christmas, all the kids were cleared out except for the really hard luck cases.

Wendy was apparently one of those hard luck cases in the year of 2007.

The following year, 2008, we were gratefully at home.  Wendy was able to travel to Vermont, in the lovely snow, for a few short days and Michael and I were determined to have the best Christmas ever for her.  The e-coli had done so much damage that she was in kidney failure.  We were waiting for a call any day for a new kidney for Wendy knowing that it could come at any time, and Wendy, brave little soul that she was, continued to fail.

Yet, we were still so grateful to have her.

We were going to make this a happy holiday, because we didn’t know if she was going to make it to the next Christmas.  I traced Wendy’s hands and made a wreath with them.  She and I made bookmarks for everyone in the family.  We made tiny plaster ornaments and decorated a live Christmas tree.

And apparently, this crèche had something to do with all of it:  Michael’s grandparents and Wendy and happiness all tied together.  Somehow it became the symbol of the mission.

How do you clean a moldy crèche?

First Michael wanted to buff off the mold, and we found a spin toothbrush in the bathroom.  He went outside with a work shirt and gloves in the cold and buffed off as much as he could, then brought them inside.  We filled the kitchen sink with hot soapy water, we added some bleach and white vinegar and let them sit, where the glue became unbound and the figures floated to the top.

I remember thinking that the baby floating reminded me more of the story of baby Moses than baby Jesus bobbing in and out of the bubbles.

I scrubbed and scrubbed and scrubbed.   The soapy water covered my hands, my arms, splashed onto my forehead.  I was pregnant at the time, the time of my quickening, and I could feel little flutters in my belly.  I thought that maybe I should put on rubber gloves because I didn’t want the bleach to leach through my skin and hurt the baby I hadn’t met yet, but I already knew it was a little girl.

Joseph was the easiest, he had the least damage.  I put him aside on the red towel.  The baby Jesus  was next.  Floating in the water, I retrieved it and scrubbed it with the spin toothbrush, the whirr of brush making my hands a little bit numb.  Then came the animals.  The camel was in the worst shape, it needed to be scrubbed and soaked and scrubbed again.

Finally I set to work on Mary.  I really connected with her story as I scrubbed the likeness.  Pregnant, riding a donkey for days, giving birth in a stable, carrying the burden of this child and not knowing the future.  I thought, I’ve just got to work hard and get through all of this, Christmas, the kidney, the recovery, the baby.  So much to carry and no choice but to do it, because no one else could do it for me.

The scrubbing done, I had to think about what to do to make sure all the mold had gone away.  So I broke out the hair dryer and dried the pieces of wood, where they went from shiny to dull, dark to light, and they looked so very plain and ordinary, like a little kid had carved them from a scrap of wood.  Something had to be done to protect them, and I thought of olive oil.  The figures were made out of olive wood, so I thought that I could season them with olive oil.  I found  a small paint brush from Wendy’s Crayola watercolor set and sat down to paint the figures with oil and then let them sit on the paper towel to dry.

Needless to say, we had the most labor intensive crèche, decorating a desk that had been in Michael’s family for two hundred years, and I am pretty sure that Wendy didn’t notice it once.

It wasn’t our merriest Christmas.  Or maybe it was.  It was tender, and heartbreaking and gentle and sweet.  It was desperate and terrifying.

And yet it feels like yesterday. All the emotions come rushing back.

I am always reminded of this story when we pull the crèche out again and again,  every year at Christmas.  Christmas memories tend to be tied together, with the special items we pull out to decorate the house.

Happiness is tied into them.

Brave Warriors, Courageous Parents

It’s Thanksgiving week, and I have much to be thankful for.  I have found that since I started writing this blog, that I have been put into contact with lots of amazing people, who help both sick kids and their parents. One of those people is Blyth Lord, founder of Courageous Parents Network.

Courageous Parents Network is dedicated to supporting parents of children with serious or life-limiting illness.  It was started when Blyth’s child was diagnosed with  a genetic disease that is very rare and always fatal.  Her husband is an identical twin and his twin brother’s child had the same disease.  The cousins were diagnosed a few months apart and died a few months apart.  Yet, the families got through it together, supporting and understanding what the other family was feeling and encountering.  There was strength in their solidarity.  Blyth  wanted to bring that solidarity to other families, so she started the Courageous Parents Network, a series of blogs and videos that deal with different topics from diagnosis, to communication, to partnering with doctors, and self-care.

Recently, Courageous Parents Network had a Story Corps podcast event.  They had asked five different families to reflect on living with a sick child, some of whom have passed away.  They then edited the thirty or forty minute interviews  down to five or six minutes each and compiled them, so that we could listen to them together in small booths.  Some of them were interviews with parents, and some were interviews with siblings of sick kids.  All of them were raw and powerful.  These are shadows in the conversations of our lives.  These are the unspeakable things that no one wants to talk about, no one wants to think about.  And yet, these families are living them, every day.

Blyth had asked me if they could include the Story Corps interview that Wendy and I had done this past summer, and to be honest, I had to think about it.  Wendy, though chronically ill, is not terminally ill. I wasn’t sure that we would be a good fit.  Blyth assured me, however, that though the circumstances are different that the core feelings are the same, that of worry and helplessness, of finding joy in small moments, and discovering our own strength as a person and a parent.  So I agreed.

The night was beautifully laid out, with a modest dinner of sandwiches, salad and cookies.  There was an introduction given by Blyth and by a  parent who had lost a child to cancer and had also done a Story Corps interview with her husband about her daughter’s last year of life.

I have mentioned before that people have a ripple effect in their lives, and it turns out the the parent speaker and I had never met but had contact over the internet and by phone.  Her child had suffered from the same infection as Wendy and though her daughter fully recovered from that infection, many years later she was diagnosed with cancer and passed away.

However, the mother still followed Wendy on her CarePage.

In the listening booth, filled with balloons and transparent pictures, we listened to the stories of each other, and of other parents.  Tears were shed, hugs were given, and I’m not sure that I will ever see those people again but we did have this moment where we understood each other as parents.  We were a community for a moment in time.

All of the podcasts can be accessed on the CPN website, under Podcasts..  They are incredible.  Take some time to listen when you can.

This work, giving direction to parents who have seriously ill kids, is both challenging and meaningful. It is hard to talk about palliative care and hospice all the time.  It’s hard to meet people at their most vulnerable states.  But imagine if Courageous Parents Network wasn’t there, the loneliness and isolation would only compound itself.  It’s hard work but it’s good work, and I’m happy to be a witness to it, and to help it when I can.

It’s a funny thing, once you put your flag in the sand and say “I stand for making room in this world for sick kids and their families,” how many people enter your life and how many connections you make.  In this week of Thanksgiving, I am thankful for the connections, thankful for the hard work, thankful for the relationships I’ve made along the way, thankful for this blog to convey the journey, thankful for the people who read it and encourage me to continue.

This blog was a New Year’s resolution, to write one post a week. It turns out that a post a week is ambitious, and I can’t believe that I’ve almost been doing this for a year.  I’ll have to decide how I want to continue and move forward.

To be continued.

Our Kids Inspire Us

Often times, it’s our kids who inspire us.

They don’t know that they’re supposed to feel bad for themselves.  They just want to feel better so they can get back to being kids.  They bounce back quicker, not just because they are young, but because they want to move forward, they want to get past their illness.

They don’t dwell.

Even if they’ve had a crappy day, a day filled with pain and anxiety, with pokes and prods and tests and sticks, even after surgeries, or chemotherapy, or dialysis, or injury, they go to sleep and the next day they re-evaluate.  If they are better, even just a little bit, you can tell because their eyes are clearer, their smiles are wider, they want to do more things.    We as parents help them celebrate small victories, marking their progress the way we mark their height in tiny increments on the kitchen wall.  We are their cheerleaders, and they are our heroes.

SickKids in Toronto has launched a new ad campaign called “VS.” It’s a moving video showing sick kids versus their illnesses. It shows kids as knights, or prize fighters, or motorcyclists, or professional wrestlers.  It shows them beating the odds.  It is powerful because it manages to show you the steep hill they are climbing with these illnesses in a short amount of time.

Watch it here.  Have tissues ready.

The picture I’ve posted above is of Wendy.  Here, she is four years old.  She had spent over 100 days in the hospital, she was taking 14 medications in different combinations, every two hours.  She was on five blood pressure medications, and she was getting up to eight shots a day of insulin. You might not recognize her because she had chubby cheeks because she was in kidney failure and one of her medications made her grow extra hair all over her body.   But just look at that smile.  That’s a kid who still played on the playground, climbed up trees, swam in the pool.

We just worked the medical stuff around her.

The other night Wendy and I were lucky enough to be invited to an event for the hospital, called the Storybook Ball.  At it, there were many people who had heard of her video and came up to her, both to tell her that they had cared for her as a patient, and that they were inspired by her video.  It couldn’t have been possible without the Architectural Firm Payette, who led the way through the whole cartoon.  They utilized all of their extra talents, the ones they don’t use every day, to create this video.  Wendy inspired them, and they created an inspirational work.

They have written about the video from their perspective, and you can read that on their website.  It is fair to say that it is impossible to thank them enough.

One of the sweetest moments since the release of the video last week, was a short email from an Emergency Room Attending Physician.  She wrote to say that she was already using it with her patients when they arrived and that it seemed to be entertaining and calming to them.

It’s so amazing to know that after all that time, after all that work, that it’s going to make a difference in the life of kids who are in pain.  It’s actually working.

This kid inspires.  Lots of kids inspire.  They teach us to keep moving forward.

I’m going to end this rather short post with one of my favorite quotes, one that reminds me of lots of kids like Wendy, lots of Brave Fragile Warriors:

“Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.”
Mary Anne Radmacher