Siblings of Sick Kids

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

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

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

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

We needed patience while waiting for the kidney.

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

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

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

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

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

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

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

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

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

 

 

 

 

Dear Doctor S—-

Dear Doctor S—-

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

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

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

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

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

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

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

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

Yours truly,

Darcy Daniels

Snow Day in the Hospital

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

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

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

However, the staff came up with a plan.

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

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

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

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

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

 

 

Review: “Miracles from Heaven”

Confession:  I dreaded going to this movie, and I thought I was going to hate it.  Maybe I wanted to hate it, but that was just a product of my own fear.  It was impossible to hate it.  Be warned, there will be spoilers in this review, but if you’ve seen the trailer, then you already know everything there is to know about it.  If you would like to see the trailer, here is the link.

The plot is as follows:  The Beam family are a normal, everyday, God-fearing, southern family.  You like them almost immediately.  Their middle child Annabel comes down with a mysterious, incurable chronic illness that is both difficult and painful.  They go to multiple doctors to get answers, and get nowhere for a really long time.  It tests their marriage and their financial security as well as their faith.  Finally, they find a doctor at Boston Children’s Hospital who can’t cure their daughter, but can give them hope both with his knowledge and his bedside manner.  After multiple trips back and forth from home to Boston,and  lengthy hospital stays, Annabel is still in terrible pain and not much more can be done for her, so they send her home. While she is home her older sister talks her into climbing a big dead tree with her on their property, and when the branch they are sitting on is about to give way, Annabell jumps to a hole in the tree, falls through the trunk all the way down thirty feet, and is unconscious.   Rescue teams recover her and she turns out to be fine.  Better than fine.  She turns out to be cured of her terminal illness.  She tells her parents while she was unconscious that she had an out-of-body experience, met God, and he told her that she was going to have to go back, that she was healed.  The doctors can’t explain it, she is asymptomatic and does not require medication.  It’s a miracle.

There are subplots that I don’t love, like when the good meaning church ladies come to the mother Christy and ask if it was her sin or the sin of her daughter is what is keeping her daughter from getting healed by God.  This causes Christy to stop going to church, and is in fact the exact opposite of what a church community, or any good community is supposed to do:  they are supposed to support each other during the hard times, and what could be harder than having a child with an indescribable, incurable illness?  Casting judgement about a person’s spiritual guilt is a beyond petty, it is downright cruel.

But some parts are right on.  Seeing both the pain of the child, and the pain of the parents was very real.  There was one part where the parent was asked to hold down the child so that the nurse could perform an uncomfortable procedure.  I can’t tell you the amount of times Michael and I had to hold Wendy down for blood draws and IVs, participating in the needed trauma that had to happen.  Also the part about the parents being frustrated with not being able to get answers, and being stopped by hospital policy.  I’ve addressed this in my blog post Courteous Vs. Helpful, where hospital staff can be advocates for the parent or just polite.  Compassion of the staff make all the difference.

Another part that was real was how a child’s illness effects everyone.  The child, of course, to whom these horrible things are happening, but also the rest of the family, their friends, their community.  Everyone gives something up.  In the movie, the father had to sell his motorcycle to pay bills. The older sister misses her tryouts for a soccer team.  They all give up pizza because Annabel can’t eat it.  Annabel’s medicine schedule, on a whiteboard calendar, sits front and center in the dining room, a constant reminder that their lives are not the same, but they stick together and they tough it out because that’s what families do:  they support each other, they love each other.

The most powerful message, however, comes at the end, once Annabel is healed and they return to church.  Christy delivers the sermon, and though she is grateful for the miraculous healing of her daughter, she tells the congregation that miracles are everywhere.  This is the important part.  Miracles are the actions that others perform to support the people in need.  The neighbor who watches the kids.  The waitress who befriends them while they are in Boston. The receptionist who fits them in to the schedule.  The doctor who gives them hope.

This is what I can’t stress enough, because when Wendy was at her sickest, we had a whole network of people both seen and unseen who helped us.  Whether it was taking care of our house, watering our plants, feeding our cats, offering us places to stay, sending us gifts, bringing us Thanksgiving dinner, praying for us, helping us to move, calling to check in, offering up their sick days, taking the time to come up to Boston and help, all of these things are  miracles worth celebrating.  Never underestimate what your small effort can do to help a person.

The name of the movie really should be “Miracles are Everywhere.”

Ultimately, the real shame is that Christy Beam realized it once her daughter was healed, and not before.

Bring tissues if you go to see it, and let me know what you think.

Here is a link to the real Beam family, from People Magazine.

 

Sometimes You’re Not Ready

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

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

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

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

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

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

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

Instantly I remembered that day in the hospital.

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

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

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

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

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

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

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

But you will be.

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

Be gentle with yourself and this journey.

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

 

Confessions of the Alpha Parent

I am the Alpha Parent.

I’m pretty sure that for families with a kid who has special health care needs, there has to be one parent who has more control over the medical life of the child.  I have to say that my husband does a lot:  when Wendy is an inpatient at the hospital, he is the one who does the overnight shifts.  When we are home,  he gets up at two in the morning every night and checks Wendy’s blood sugar.  He is there in the morning to give Wendy her first round of medicine.  He helps with site changes for both her insulin pump and continuous glucose monitor.  And he is the one who largely deals with the health insurance that is connected to his employment.

In short, I am by no means alone in this partnership.

However.

I am an adjunct professor at small college ( I teach three classes per semester).  It’s part-time, so much of the day-to-day responsibilities fall to me.  These include, making Wendy’s lunch with a break down of the carbohydrates, having near encyclopedic knowledge of all of the carbs in her life, checking her blood sugar and making adjustments to her insulin ratios as needed, keeping in contact with the school nurse, making and keeping appointments with Wendy’s doctors, along with other tests and bloodwork, keeping track of her prescriptions, and being the “parent on call” in case of emergencies.  These emergencies might include high blood sugars, fevers, or symptoms that might land Wendy in the hospital.  Because she is immune suppressed, she gets sick easier and faster than other kids and it is a constant, everpresent fear.

This is, of course, in addition to the normal parenting duties: carpools, after school activities, sports, sleepovers, cooking dinner, and keeping the house clean enough so I’m not mortified when we have company over.  Oh, and then there’s the never ending paperwork for all of the above, and the fundraisers for Diabetes Camps and Transplant Olympics, and the few committees that I’m on at the hospital to make it a better place for sick kids.  It’s  a lot of work, parenting is hard, and these extra health issues make time tighter and more stressful.  I always maintain, though,that none of us know what we signed up for to be a parent, and we walk the path that we are given.  Mine just happens to have a lot more medical intricacy than most.

The bottom line is that, ultimately, I’m the one that keeps it all together.  I keep both the pantry and the medicine cabinet stocked.  I make sure that appointments are made, met, and followed up on.   I have the memory of all the medication, the insulin ratios, the carb count of numerous items, all that I can recall on command, along with most of Wendy’s current blood chemistries and her A1C.  I keep the ship afloat, so to speak.

So what happened when I was offered an opportunity to go with a group of students for a week to Central Europe to study the Holocaust?

Well, to put it bluntly, I panicked.

The thing was that  I really really wanted to go and had  a lot of offer my students:  I used to live in Central Europe, I’ve written a novel about it, I know the cities, the people, the culture, the history.  I’d be really good at this thing, leading students through holocaust sites and memorials.  It would be intellectually fulfilling and meaningful to me, as most part-time jobs just tend to be place holders for someone else, this would be real work that would affect the global outlook of these students.

I hadn’t been away from my family for a week since Wendy was born, and certainly not since she had gotten sick.  Michael had been away a few times, for a week or longer, but the longest I had ever been away was for four nights, and that was only with one child.  Now we had two.

Michael  was supportive of the trip.  He said I should go, that he would handle it.  So I set a schedule with all the names, dates, and phone numbers of the extra kids I pick up in the morning, or kids that come for an hour after school, all of the minutia that I probably hadn’t told him throughout the weeks.  I stocked the fridge with easy meals (Michael doesn’t cook) and I made sure that there was enough medicine. I also made sure that there were no doctors’ appointments, outstanding library books, or gaps in child care.

Then I took a leap of faith and left.

And nothing happened.

By nothing, I mean that I had a fantastic time.  I got to see a lot of places I haven’t seen in years, I got to be the “resident historian” on the trip, and I got to have real interaction with students, many of whom were going to Europe for the first time.  I missed my family, but they had a normal week, with all of their activities and events.  No one landed in the hospital, no one had an emergency.  It all went smoothly.

This fall, I was asked to go again over spring break 2016, same cities, same schedule.

I said yes.

And, predictably, I panicked.

AGAIN.

I guess that I’m a little bit of a control freak. As long as I have everything scheduled and monitored, I feel like I’ve got the best chance of keeping Wendy out of the hospital.  Fortune favors the well prepared.  But being in Europe fosters all of the “what ifs” in my life.  What if she gets sick before I leave?  What if she gets sick while I’m gone? What will Michael do? Who will watch Penny?  How long will it take me to get home?  Will my family feel abandoned?

Seriously, these things run a loop through my mind, along with the accompanying guilt and worry.

Having said that, I know that Michael is incredible and capable.  I know that we have a caring community filled with people who would help if there was a problem.  And I know that we have family that can fly in if necessary and get there before me.  I also know that Wendy’s in a really good place, that her health has been stable for a while, and that in the future it may be more questionable for me to leave, right now it’s a safe wager to go.

But as the Alpha Parent, it’s really hard to let go of the worry and guilt, which ultimately lead to doubt.

It’s the doubt that I have to overcome.

(Photo:  The John Lennon Wall, Prague)

“Life is what Happens when you’re busy making other plans.”  –John Lennon

 

 

 

 

Resilience, A Beautiful Oops

Penny came home from school today SUPER EXCITED.

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

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

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

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

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

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

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

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

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

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

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

MFA lady boat

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

 

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

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

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

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

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

penny wendy halloween 2011

 

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

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

Make it work.

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

 

Link

Courteous Vs. Helpful

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

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

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

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

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

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

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

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

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

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

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

Dear Health Care Provider:

Please read the chart before you walk in the door.

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

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

Please listen to my concerns.

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

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

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

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

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

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

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

Compassionate Care makes a stressful situation better.

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

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

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

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

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

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

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

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

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

 

My Most Helpless Moment

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

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

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

It was like living in a nightmare.

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

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

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

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

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

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

That was my most  helpless moment.

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

And we will again.

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

 

 

Brave Fragile Warriors

Happy New Year!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And so, a blog is born.