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.

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What If I Don’t Know the Answer?

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

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

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

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

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

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

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

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

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

A team relies on trust.

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

“What if I don’t know the answer?”

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

They are afraid that they will look like a fraud.

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

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

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

 

 

 

 

Conduits of Care

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

How many milliliters are in a teaspoon?  Five.

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

Blood pressure is best checked first thing in the morning.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Photo:  Lasagna, my favorite.  🙂

 

 

Siblings of Sick Kids

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

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

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

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

We needed patience while waiting for the kidney.

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

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

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

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

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

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

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

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

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

 

 

 

 

Find Your Tribe

It’s important to find groups and organizations who support you in your journey as a caregiver, both in the short term, and in the long run.
Wendy had a strange illness. It wasn’t a genetic defect, or cancer, or cystic fibrosis. She was born completely healthy. Her illness was a result of a bacterial infection that turned into a syndrome. As a result, there weren’t a lot of support or advocacy groups out there.
Advocacy groups are great. They are a clearing house for information , because usually the thing you worry about for your child is a normal worry associated with that illness. There are so many advocacy groups out there for cystic fibrosis, heart disease, low birth weight, cancer of all kinds, food allergies Crohn’s disease, kidney disease, you name it. Many times you can find a local chapter of your needed advocacy group nearby and it helps to talk to people who are going through exactly what you are going through.
We found that though the syndrome didn’t have an advocacy group, that there were other avenues we could travel down for the same kind of support. One was STOP foodborne illness, which is an advocacy group that supports people who have been struck by illness associated with food, like e-coli or salmonella. They do work in the legal sphere trying to cut down the use of antibiotics in factory farming, but they also support people who have been struck down by the illnesses they are trying to prevent.
We also turned to the diabetes advocacy groups. As a result of her illness, Wendy’s pancreas works at 15%, which means that she needs insulin on a daily basis to digest her carbs and sugars. She’s neither a type 1 or a type 2 diabetic, but she has the same concerns as a diabetic kid. She feels isolated and left out as a result of her illness, because she’s the only one who has to check her sugar, count her carbs and give herself insulin. She LOVES being in a room where everyone else is doing those things too. She loves to go to diabetes camp as a result. She loves to belong to a bigger group.
We also are a part of the transplant community. This one is a little more ambiguous. It’s multi-age, and multi-organ because there aren’t many people in the world who have organ transplants. I like this group because it’s amazing to sit in a room full of people who wouldn’t otherwise be there except for the generosity of a donor or a donor’s family. And as a result, the people who are the recipients just radiate gratitude. They know they’ve been given a second chance in life. They know what’s important.
Part of being in groups like these isn’t just receiving their collected wisdom, it’s also about participating and giving your energy as well. It’s just as important to give back, once you are in a place to do so. Obviously you can’t give back when you are in a time of crisis, nor does anyone expect you to. But once you’ve calmed down, it’s important to give back to an organization that you have used as a support and an anchor. I’m not just talking about money, but manpower as well. Wendy does a run every year to raise money for her diabetes camp, The Barton Center. It’s a summer camp dedicated to diabetic girls, with nurses in every cabin. It emphasizes self reliance and not putting barriers on yourself. It brings in speakers who are both diabetic and amazing, like triathletes or ultra marathoners. It shows the girls that anything is possible, and diabetes is just a part of their identity, not their whole identity.
Wendy also is going to participate in the American Transplant Games this year, in Cleveland Ohio. She is going with Team New England and she is going to participate in both the swimming and the track and field events, and she’s going to kick butt if I do say so myself. But more importantly, Wendy’s participation and the participation of all of the transplant recipients showcases the worth of organ donation. When you see all of the people who have been touched by organ donation, in one convention center, it is a very powerful thing.  I’m sure that I will be blogging from there in June.
It’s not just about joining a group, and I can’t stress this enough. As a parent of a chronically ill kid, your time is stretched too thin already. It’s about finding meaning and purpose in a group, and it might be a group that isn’t centered around your child’s illness, exactly, but will still do a world of good.
The best thing that I do is sit on the Family Advisory Council at Massachusetts General Hospital. It’s a body that is half parent and half provider-staff. We meet once a month and help to make the hospital better for all children. Often we are a resource to proofread new source material for the public, give feedback on architectural designs for new departments, or run workshops on staff helpfulness. We speak to new residents about what it’s like to be the parents of kids who are in the hospital a lot. We sit on hospital wide committees for quality and safety, ethics, or inpatient satisfaction. We even sponsor a Grand Rounds once a year that focuses on family centered care. It not only improves care for every child through fostering communication between provider, parent and patient, but it makes the hospital better for MY daughter, every time. I know more of the doctors, more of the nurses. At the very least the residents and fellows have all seen my face, and I know a lot of the attending physicians by name. It keeps a connection so that the next time we go in to the hospital (because there will always be a next time) that we’re not met with brand new faces in a large city hospital. I honestly think it’s some of the best, most measurable, work I do on a macro scale.
Another benefit of being on the FAC at Mass General is that I also come in contact with parents just like me who are not only concerned, but passionate about making the hospital better, who come to the work not out of anger because of the hand they have been dealt, but constructively taking their experiences and working with doctors, nurses, and staff to collectively make the hospital stay better. Honestly, sometimes I look around that room and marvel, the men and women sitting at the table could be considered “professional hospital parents” because their child (or children) have been inpatients so often, some of whom have passed away as a result of their illnesses, and yet they choose extra time to be there, in the evening, to work out the snags and make the hospital better. I take strength from their strength.
Being the parent of a chronically ill kid is isolating, but there are places of refuge. Advocacy groups, hospital committees, or even online groups. But don’t just be a bystander, don’t just be a taker. Give back. Your contribution not only makes the organization stronger, but makes you stronger as well.

Find your Tribe.

Everyone benefits, and as a result, there are flashes of brightness in the dark. Together you can find a way to make your child’s illness better, and hopefully the experiences of other families better too.

The Magnitude of Small Choices

We’ve tried really hard to let Wendy help to steer her medical road, but it hasn’t always been easy.

She got sick when she was three, so in the beginning, we did most of the steering.  But even still, we tried to give her as many choices as we could.  We would let her choose which finger she wanted to get her blood stick for her diabetes.  We would let her choose her 15 carb snack if she was low.  After a doctor’s appointment, we would let her choose where she wanted to go for lunch. You get the idea, little choices, but ones that gave her a stake in her own care, which we felt was important.

As she got older, she started to take more control.  She liked to negotiate with the phelbotomist or the IV nurse where she thought the best place for her IV site should be.  She liked to help flush the lines with the nurse.  She would ask for warm packs for her IV site or warm blankets if she was in the Emergency Room.

When she neared the age to go up to the next floor at the hospital, somewhere around 6 or 7, she would state very clearly to the Emergency Room nurse that she preferred to be on Ellison 17 (which is the younger floor) because she knew and liked all the nurses there.

When she is an inpatient, we choose to have bedside rounding, so the doctors all come into the room to discuss the problem and what the plan for the day will be.  She watches us ask questions of the doctors and we always ask her if she has questions, or has anything to add to the conversation.  Most of the time, she doesn’t have any questions, but it’s important to us for her to see the exchange as this is going to be a regular part of her life and she is a part of her care team.

When she is released and we have our normal clinic visits, on the drive in I ask her if she has any concerns or if she plans on asking the doctor any questions about her care.  We also talk about the right way to address doctors and nurses and I remind her that no screens are to be on when a doctor or nurse is in the room.

When she was ten years old, she wanted to start packing her own lunch, but she didn’t have much of an idea of carbs versus protein, so I set up an appointment with a nutritionist who went through it with her.  (She didn’t want to listen to me, I was her mom.) We set up a list of things that needed to be in each lunch:  a protein, a carb, a fruit, a vegetable and a dessert.  We made a list like a Chinese food menu, pick from columns ABCD & E.  We went to the supermarket so she could pick out her favorite fruit and vegetable for the week.  And we put down each item on the chart along with the carb count.  She would choose from ABCD & E, find the carbs for each, and create her own itemized list of the food on a post-it note to give to the school nurse, just like I did every day for her.

When she was eleven, we got her a cell phone so she could more easily go over to friends’ houses without a parent present because these were no longer little kid “play dates”.  She checks her own sugar, and texts me the information about how much she is going to eat, sometimes taking a picture of the plate so that we can figure out the carbs.  When she started sleeping over at friends’ houses, she sets herself an alarm at 2 am to check her own sugar, and then texts her father the number, to make sure that she is in the normal range.

She knows she gets sicker faster than other kids because she is immune suppressed and she knows to wash her hands before each meal.  Sometimes she snacks when she’s  not supposed to, but just like the rest of us, it’s hard to pass an open bag of chips and not take a handful.  She knows that she can’t have “open food” at a buffet, and she knows to get her food first when we are at a party before other kids “double dip” or lick their fingers.

When she says she doesn’t feel good, I ask her if she thinks it’s serious enough to go to the hospital and I trust her answer.  We talk about her symptoms, call the doctor, and make the best decision based upon the information we have.

I always tell her that we are a team and we will get through her illness together.

These are all conscious, concerted efforts.   It’s not easy to plan all of these ways to empower Wendy, but both Michael and I think it’s important. She’s twelve, and she has a lot of issues to deal with, but it’s important to know that she can take care of herself, both for her self esteem and for our peace of mind.  We want to nurture in her a strong sense of self, complete with all of her aspects.  We want to show here that we are a team:  her doctors, her parents and herself.  She needs to know that she can interact well and intelligently with the medical world, because she will need them for the rest of her life.  It would be so much easier to do these things for her, but it’s important to show her how to do them herself.  Like the old adage of teaching a man to fish, we are showing Wendy  how to navigate the medical world, trust her instincts,  and be a strong self-advocate.

Probably the road will get bumpy again as we encounter the teenage years, but that’s all a part of it.  It’s just important to lay the foundation that she can do this, we can do this, we are a team, and she will have us when she needs us.  It’s all any parent wants for their child, but it is both especially challenging and especially important for the parent of a chronically ill child.  It takes planning, preparation, determination and the willingness to watch your kids safely fail.

These small choices add up to a great result:  a strong confident woman ready to commit to self care and interact with her health care providers.

At least, that is the hope.