The Power of Moments: A Review

The Heath Brothers have released their newest book, “The Power of Moments.”  It discusses how certain moments stay with us through a combination of factors.  Conveniently, the factors form an acronym, EPIC:

ELEVATION:  Defining moments rise above the every day. They’re special.

PRIDE:  Defining moments capture us at our best, moments of achievement or courage.

INSIGHT:  Defining moments rewire our understanding of ourselves or the world.

CONNECTION:  Defining moments are moments we share with others.

They give good examples for each of these areas.  Then they challenge you to make more of your interactions moment-worthy.  How do you break the script of the every day?  How do you build in moments that are extraordinary for others?

I’ve never read a Heath Brothers book before, but I enjoyed this one.  Of course, I am biased.  One of this blog’s stories is in the book, the very last story in the very last chapter.  It talks about a moment when Wendy had been in the hospital for many months and two nurses decided on the day that there was a huge snowfall, that they would team up to figure out a way to get Wendy some snow.  This was complex because at the time, she was in heart failure and had a severe water restriction, and of course she was going to eat some of that newly fallen snow.  So, the nurses scooped up some snow, measured it, melted it, measured it again, made a calculation, and then went out into the snow AGAIN and got more fresh snow to bring into Wendy’s room. You can read my blog post about it here.

Dan Heath shared with me while we were talking on the phone, that not only was it a wonderful, defining moment for Wendy and our family, but also for the nurses as well.  It was a tangible thing they could do to bring joy to a little girl from Vermont who had been in the hospital for months.  It was connection.  It was elevation.  It was insight.  It was pride.  And it didn’t cost a penny, just some time.

I really enjoyed reading the book, and I’m so grateful to the Heath Brothers for including our story in it.  One day an advance copy just arrived in the mail, with their special thanks. It is unlikely I will ever meet them, but it’s really cool that our story, Wendy’s story, is now in a book.

You can purchase the book today as it has just been released.  If you read it, please let me know what you think of it.  Here is the link to the book on Amazon.

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When to Divorce Your Doctor?

I was hot.

I was furious at Wendy’s endocrine practice.  This had been the third time in four years that I couldn’t get Wendy’s school orders without multiple phone calls that required phone trees and leaving messages on answering machines and waiting for someone to get back to me, multiple times. Every delay each year was for  a different reason:  wrong address, new medical management system, most schools start after Wendy’s school.  But I had had enough.

I decided that I needed to look elsewhere for another place for Wendy and for me.  This just wasn’t working for us.  This divorce has been a long time in coming, but like real marriages, there are positives and negatives to a medical relationship.    It’s when the bad outweighs the good, that you can safely feel like it’s time to walk away and join another practice.

But I didn’t want to do it just because I was angry, and it wasn’t because I had gotten bad news that I just couldn’t accept.  An important thing I learned is that in medical relationships, as in most relationships,  you can’t expect perfection, but you should expect to feel satisfied with the way you are being treated.  And I didn’t feel like we were being treated well.

Add to this the fact that Wendy’s actual endocrinologist was leaving for another opportunity, so we felt like if we were going to make a move, that now would be a good time, because we were going to have to meet and use a new doctor anyway, so we might want to consider going to another facility all together.

Luckily we had many other options, living in a city like Boston.  Not only do we have our hospital, but there are two other pediatric hospitals in the city.  Additionally, we have the Joslin Diabetes Clinic, the oldest and most prestigious medical center for diabetes in the world.  We had a lot of choices, and Michael and I really weighed them, because all of them were good options.

We decided to go with Joslin, because like Mass General Hospital, Wendy could transition from a pediatric patient to an adult patient within the same institution.  Also, since Joslin is a clinic and not an inpatient facility, Wendy’s hospital home would still be Mass General (as she would still see nephrology there.)  Finally, with Joslin there was an opportunity to possibly be part of new and interesting clinical trials that used a large sample size available to Joslin.  Taken all together, it was worth a try.

To be clear, we did not go down in a blaze of glory, when we left the endocrine practice, we just called Wendy’s primary care doc and stated that since Wendy’s doctor was leaving that we’d like a referral for a new doctor at a new clinic.  We made the appointment at Joslin with a new endocrinologist, a new Nurse Practitioner, and a dietician.  We were told to expect to be there all day and to bring Wendy’s records.

The night before the appointment, I was really nervous, because it was the first time in a long time that we were dealing with new doctors in a new place.  I may have punched the printer in the morning using colorful vocabulary because it wouldn’t print Wendy’s labs from the patient gateway.

Ok, I may have punched it twice.

And the drive there was awful, it’s in a super-congested part of the city, there’s no good way to get there.  I thought to myself, “This better be amazing, because to drive here four times a year is really going to suck.”  Parking was just as bad, and there ‘s no coffee shop, no food of any kind in the building.

But the nurse practitioner was great.  She was patient and she answered all of our questions.  Wendy liked her right away.  She looked at Wendy’s numbers and made a few small changes, and then gave us all of her information as to how we could get a hold of her personally, not through multiple phone trees and receptionists and answering machines.

Wendy said that she felt like she knew this nurse practitioner more in the fifteen minutes we spoke to her than in the many years she knew the endocrine nurses at Mass General.  She also admitted, later, that she might have felt better about the new nurse because she wasn’t super sick when she met her, and because we already knew about diabetes.  Both observations were astute especially for a teenager.

When we met the doctor, who had been a fellow at Mass General, she complimented Wendy on her video for the Emergency Department, because she had been at the Grand Rounds where Wendy spoke about it, and she remembered to say something to her about it.  This had an instant effect on Wendy.  It was a great way to build rapport.

We broke for lunch and walked around the corner for sandwiches, and Wendy was excited to go to a new place to eat. When we go to Mass General, we often go to the same restaurants, as if in a rut.  Partially it’s because it’s easy and it’s comfortable. But Wendy really liked trying somewhere new and said so.

We arrived back to the clinic in time to meet the dietician.  Wendy really liked what she had to say. They went over her daily intake, each meal, each serving.  She helped Wendy come up with a plan to eat a little more calcium, a little more protein, which involved a cup of high protein chocolate milk with dinner.  Wendy was thrilled.  I gave in to the pressure and we now have it in our fridge.  It’s a little treat that makes Wendy feel like she’s in more control of her life.  Oh, and it’s chocolate.  At dinner.

After we got home, and after dinner, we all sat down together to debrief the day and figure out if we really wanted to make the change.   We decided we did.  Wendy liked the staff and felt heard.  I felt like Wendy was getting positive messages from adults that weren’t just me and her dad about her diabetes.  I also liked that Wendy was taking a little more control of her health, even if it included extra protein chocolate milk.

I called the old endocrine practice and cancelled our next appointment.  I just said we have decided to go with Joslin instead since Wendy’s doctor is leaving.  I need to decide if I’m going to write a letter to them explaining that we just didn’t feel like we  were getting the attention we needed with hard to attain answers to questions, no meetings with dieticians, and no real transition as Wendy got older.  I need to figure out the right tone, because we were grateful for the care we got when Wendy was younger, it just didn’t feel like we were being supported as she was entering her teenage years.

I’m still thinking about that part.

Divorcing your doctor is hard because you’ve built a relationship and sometimes it’s all you know.  But if you don’t feel like you’re being heard or taken care of, it’s worth it to look elsewhere.  You already know what you have, you don’t know what is possible.  So go find out, gather your data, and make a decision.

I wish you luck, whatever you decide.  It’s not easy.

It’s harder, I think, when it’s your kid, because you want to do the best by them, even when you’re not exactly sure what the best thing is.  Hopefully,  you can decide together.

 

Taking a Transplant to School!

Dear School Nurse:

My child has a transplanted organ.  Here is what I would like you to know.

My child can get sick faster and harder than most other kids.  As you know, schools can be a giant petri dish of germs, and the best way to discourage their spread is by careful hand washing.  Please make time to discuss with the class where my daughter is about what careful hand washing looks like.  Please have the teacher commit to taking time before lunch to have each child clean their hands, either with soap and water, or with a quick spurt of hand sanitizer as they walk out the door.  Discouraging the sharing of food would be good too.

Then, please write a letter home to parents, asking them to err on the side of caution when sending their sick kids to school.  Most parents, when they know that sending their borderline contagious kid might send my child to the hospital, will be  more likely to think twice about doing so.  If you mention that you’d be happy to talk to them on the phone to help them decide, they may or may not take you up on it.  I know it’s some extra work for you, but it will probably keep the school healthier as a whole.

Offer to go into the class to talk about organ transplantation.  Ask my child how much she wants her classmates to know.  Some kids want to share everything, some kids are afraid.  But it’s been my experience that the sooner you talk about it, the faster it becomes normalized.  My child might not be able to do some sports, like contact sports that involve getting hit in the abdomen, and it’s good to have these discussions in the beginning, so my child can say, “It’s because of my kidney,” if other kids ask.

Because my child is likely to get sick and hospitalized, please help me to set up a 504 as quickly as possible, so that if she is out for more than 5 days in a row, she can get tutoring services, and if she misses a lot of school, I don’t want her to be left back a grade.

This is a lot to ask in the beginning of the school year, and I know that you have a lot to do.  But if you help to do these things early, it will make the school year go much smoother.  I like to think of us as a team to keep my  daughter as healthy as possible.  We sort of have “joint custody” over her body–I have her on nights and weekends, and you have her days.  Please take care of her.  I worry about her all the time, and I want to be able to trust you.

And please, please, please, call me if you have any questions or problems.  I want to hear from you.  I want to work this out together.

Thank you so much for taking the time to listen to me.

Sincerely,

Darcy Daniels

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.

Please Ask Me About My Bikini

This summer, I will be wearing a bikini.  Not because I lost a lot of weight.

I haven’t.

Not because I have a burning desire to wear a bikini again.

I don’t.

The reason is because I have two daughters, and I want to show them that bikinis are ok, no matter who wears them.  Short, tall, skinny, fat, no matter the skin tone or the cellulite.

Let me tell you how hard this is for me.  I haven’t worn a bikini since I was in high school.  I’m not a small woman.  I don’t especially like to be looked at, especially when I’m in a bathing suit.   I couldn’t find a single picture of myself in a bathing suit, even though I lived across the street from the ocean for all of my childhood and went to the beach almost every single day.

Like most women,  I am very conscious of my weight, and am a product of a lifetime assault by the media about what my body should be.  I was on my first diet when I was in the third grade.  I read all those teen magazines trying to determine my shape and size.  I’m a pear, by the way.  I went through the low fat phase, I’ve joined Weight Watchers and LA Weight Loss.  Until this last house purchase, I didn’t own a full length mirror because I never especially liked what I saw, so I chose not to look.  Like our President who gives women a number, I graded myself with letters.  I was an A-B-C:  A intellect, B face, C body.

My parents have also always been on a perpetual diet, trying to lose weight for the next event:  reunions or cruises or the next beach season. My mother went through the slim fast phase, the cabbage soup diet, the grapefruit diet, the magical drops diet.  You name it.  They also were especially helpful monitoring my diet as a kid, limiting my portions, especially of sweets.

Since I’ve had daughters, I have tried mightily to not transfer my weight issues to my girls.  Our goal as a family is to eat healthy foods, make good choices, and stay active.  I’ve been in road races and triathlons.  I swim at least once a week.  The girls are active in team sports and individual competitions.  We don’t have women’s magazine in the house.  We don’t even have a scale in the house because I didn’t want the girls to see me worry about my weight.

So it came as a surprise to me when my daughter, Wendy, didn’t want to wear a bikini.  She’s thirteen, very active, and pretty self assured.  She also swims competitively.  The thing is, that a bikini would be so much easier for her because she has two medical devices on her body because of her diabetes:  an insulin pump called an OmniPod and a continuous glucose monitor.  A one piece bathingsuit is harder to get on and off and has a much better chance of knocking off the devices, causing lots of trouble (our insurance only covers so many applications per month).

Because she’s thirteen, I thought maybe it was a body image thing, as in, she’s got all these new curves now, so maybe she’s not exactly sure what to do about them.  So I talked to her about it, saying I really wanted her to try a bikini, that I’m sure we could find one she was comfortable in.

She replied no, over and over again.  It turns out that she doesn’t want people to see her scars.

Wendy has a constellation of scars on her abdomen.   The right hand side is from some intestinal surgeries.  The left hand side is from her kidney transplant, and the star shaped scar on the top is from a peritoneal dialysis catheter.  The truth is, you don’t really notice them, at least I don’t.  They’re not ugly or red or jagged.  When she’s examined by surgical residents at the hospital, they look at them in wonder, like they’re kids looking at the window of a candy store.  Those scars, to me, show me that she is a warrior, and they’re something to be proud of.

But she was afraid that people would see them and ask her about them, and she would be forced to give her whole medical history at the pool or the beach.  I get it:  that’s a lot for a thirteen year old.

So we made a deal.  If she was willing to try on some bikinis, and found one she liked, that I would wear a bikini too.  I told her, “Don’t worry kid, If I’m wearing a bikini next to you, nobody is going to be looking at your scars.”

Well guess what? She didn’t just find one bikini she liked, she found two.

So…I’m not going to lie…..I panicked a little.

I am ashamed to admit that my first instinct was to go on some radical diet, but what exactly would that showcase to my daughters?  That only perfect bodies wear bikinis?  Wrong.

I told some of my best friends, who had a myriad of reactions. Some sent me suggestions that were over the top, ridiculous.  Star Wars themed, gold mesh, or string bikinis that  were smaller than a tissue. I wouldn’t be able to blow my nose on a triangle that small.  Some friends asked me if I could take it back, go back on my word, or wear a tankini.  That  would reduce Wendy’s trust in me, so I couldn’t do that.  Some friends shared their own insecurities or their negative body image.  Some friends applauded me.

Buying a bikini wasn’t the easiest thing in the world, but I found a lovely size 12 black bikini with white polka dots.  I bought a lovely cover up to go with it.  I’ve got a hat.

One thing is certain:  I’m going to need a lot more sunblock.

I’m not going to say that I’m going to love every minute  of wearing this bikini in public.  But I am going to “fake it until I make it” with confidence.  That is the very least I can do for my daughters.

I want them to know that their bodies are beautiful and powerful and theirs alone to love.

So this summer, if you see me, and I’m in my bikini, please ask me about it.

Mothers of Imperfect Kids

Dear Mothers of Imperfect Kids,

You have the hardest job in the world, a job with no instruction manual, and you have extraordinary circumstances because you’ve got a sick kid.

You have to take them to doctors and hospitals and blood draws and tests.  You have to understand what you’re being told, fight for your child, and then explain to them what the doctor said. Sometimes you have to hold your child down while the tests or the labs are being taken, and you hate that you are a part of your child’s suffering even if you know its for their own good.  You have to make the decision whether or not this illness presented before you is just a trip to the pediatrician or a larger trip to the hospital.  Can you manage it at home, or do you need help?  What if you’re wrong? What are the thresholds for taking them in anyway?

You have become very good at listening to your gut.

You have to measure out medicines, knowing that if you give the wrong dose or in the wrong order that you might hurt or even kill them.  You have to argue with the pharmacies to make sure you have enough.  You have to encourage your child to take them because they don’t want to.  They hate pills or the liquid tastes funny, or they don’t want to be on a schedule, or they don’t want their friends to know.

You learn how to use the medical devices, the ins and out.  You watch the videos, you read the blogs, you make decisions.  You become an expert in this tiny little area of medical technology.  It does not make you popular at cocktail parties.

You learn a new way to navigate the grocery store, the kitchen and your child’s dinner plate.  You learn what to avoid, what they can eat, and what they want to eat from the medically approved list.  You may have to restrict new items, or push more of something.  These are new battles on a well trod battlefield, food wars with your child and you find that you have to choose your battles carefully.

You have to answer all the questions of the loved ones, the people who care and really want to know.  You tell the story over and over, in an  upbeat way even if you don’t feel so upbeat.  You want the upbeat story to be the one your child tells when he or she is asked so you speak plainly and evenly, modelling the emotion.

You answer questions when other kids ask you why your child looks like that.  You wish you didn’t have to, wish their parent had taken them aside and answered for you, or told them it’s not polite to ask questions like that.  But they’re kids, and they are honest and they didn’t mean to hurt your heart, they just wanted to know.  So you take a deep breath, kneel down to their level, and try to explain why your child looks like that, or needs that medicine, or can’t eat that, or needs to leave early.

You answer questions when other mothers have them if your child doesn’t reach the same milestones.  You have a different normal.  You politely sit through the looks of pity or the awkward moments when someone says about their own child, “At least he is healthy” and then realizes that your child isn’t and doesn’t know what to say, and doesn’t know where to look.  You just smile a thin smile because you don’t know what to say either.

You advocate at your child’s school to make sure that every teacher, every administrator, every coach and the school nurse know what’s going on.  You make special provisions for after school activities and class trips.  You know what the difference is between an IEP and a 504, and you sit down with the child study team and the nurse both hoping your child qualifies and dreading the fact that your child qualifies.

You often have to quit your full time job or make it part time to accommodate the doctors appointments, the class trips, the hospital visits and the multiple phone calls to insurance providers, pharmacies, biotech companies, and medical providers.  It is what it is, but you miss your old job,  your old identity.

You have to help your child cope with their new reality, while also trying to hold it together to face your own new reality.  You cry when your child can’t see:  in the shower, in the car, late at night.  You wonder how life got this crazy, you wonder why this happened.   You realize that your child will have a challenging life. You have moments of despair.

Then you push past the despair because you have to.  Kids still need to get fed, lunches still need to get packed, laundry still needs to get folded, toilets still need to get scrubbed.  The world still spins even if you are in crisis.

You work really hard to be a mom.  You worry all the time if you’re a good one.  You worry about whether or not your child feels normal, even when they aren’t.  They are extraordinary and you love them for exactly who they are.  Their milestones are still incredible, their hugs are still amazing, their smiles still so sweet.  You are grateful for the moments where you can feel the pure, raw joy because of a success you’ve seen your child reach.

They are imperfect kids, but perfect to you.

So, Mother of a Sick Kid,  Happy Mother’s Day.  Because every other day is harder for you, today is sweeter.  I see you, and I hear you,  and I know you.  You didn’t ask for this extra burden, but you carry it nonetheless, and for that you should be celebrated.

The world may not know how hard you work, and your child may never know all you did for him or her.  But I know, and you know, and other mothers of sick kids know too.

Happy Mother’s Day, Mama.

You are loved.

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.

Match Day! March 17!

This Friday is Match Day.

Match Day is always the third Friday of March, and it pairs soon-to-be medical school graduates with hospitals for their residency.   These medical students have been interviewed and vetted.  They fill out their top preferences, and so do the hospitals.  Then it all gets sent to a centralized matching service.

The results are this Friday.

After graduation in May, they then pack up their things and move to the teaching hospital that they have been matched with.  The old residents, those who are moving onto fellowships or into private practices, leave at the end of June, and the brand spanking new residents start on July 1st.

It’s an inside joke that the beginning of July is a bad time to get sick.  Now you know why.

Wendy entered the hospital at the end of June of 2007.  By the time we got a handle on who did what, and some familiar faces, they all changed on July 1st.

As a parent, I have a different idea of Match Day and new residency now.  At first I hated the July 1st day, because everything would change, and change is hard.  Now, I go in and talk to the new residents on their first day, to tell them what it’s like to be the parent of a chronically ill kid, to tell them what it’s like to basically be a professional hospital parent.

The truth is, parents know a lot, but we still manage to be scared and feel helpless when our kids are sick and in pain.  We can’t help it, that is the way we are wired.

Another truth is, a lot of new residents don’t have kids yet. They’re in their late 20s, they’re just starting to settle down with a life partner. They haven’t had kids, and even if they do, they might not have sick kids.  Yes, they are super-smart, in fact they are used to being the smartest person in the room, but they might not know how to talk to kids, how to talk to parents, to understand what life in a hospital bed is like, what a hospital room feels like. They don’t know to rely on a parent’s hunch that something isn’t right. They don’t know how to go from technical speech to parent speech, and then to kid speech.

They don’t know these things Yet. But they will.

We are a part of their learning process. We give them space to ask questions.  One of the medical students asked the question, “What if I don’t know the answer?”  Imagine, if every doctor asked that question and was given a safe space to talk through it.

I saw a quote today that said, “Making Mistakes is Better than Faking Perfection.”

Do you know doctors whom you wish had been given permission on their first day of residency to ask that question?

I do.

March 17th is known as St. Patrick’s Day.  Here in Boston it’s also known as Evacuation Day, the day that British Troops Abandoned Boston during the Revolutionary War.

But this year, It’s also Match Day.  I wish those new soon-to-be residents the best of luck, the Luck of the Irish.

I’ll see them at the end of June, to tell them my story.

Related:

Last year’s blog post:  What If I Don’t Know the Answer? (6/20/16)

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.