Tag: Advocacy

What If I Don’t Know the Answer?

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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.

 

 

 

 

“A Difficult Decision Was Made”

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A room full of people, a room full of stories.  That’s what we encountered the other night.  It was the opening ceremony of the Transplant Games in Cleveland, Ohio.  Attended by over 6,000 people from 40 different teams around the country, there were recipients, living donors and donor families, a term given to those who lost loved ones and even in their time of acute grief, decided to donate their loved ones’ organs and tissue.  You can read the open letter I wrote to Wendy’s kidney donor’s mother here.

The emcee for the evening started the event by saying, “We are all here tonight because a difficult decision was made.”  It’s important to get it out there right away, because it was the elephant in the room.  Everyone was there because of a donor.  Now there are living donors, and that is no small feat, someone who willingly gives a piece of themselves, literally, to keep someone else alive.  They are not only honored at the games, but they are invited to compete as well.  More than that, however, are the donor families that need to be honored for their loss.  Lives were cut short, and lives were extended.  Just because it is a celebration of life, hell, the name of the event is the Donate Life American Transplant Games, doesn’t meant that there aren’t hundreds of people hurting because they have lost someone whom they loved. They wore their loved ones on pins, they posted their pictures on placards, they wore necklaces.  I spoke to a woman who told me all about her son who died when he was in his early twenties, and she said to me, “His friends are all getting married and having kids and I miss him every day. Every day it hurts.”  The emotions will always be raw for them, but it helps ( I hope) to have them see that their loved ones helped to extend the lives of so many more.  That’s what the games are all about.

This was the first time we went to the games and I had to really think about what we were going to say about donor families and what “giving life” really means.  Before the opening ceremonies we talked a little with the kids about Wendy’s donor and how he died and how his parents decided to donate his organs, and that it was likely that they were going to hear a lot of those stories tonight.  The stories would be emotional, but they are powerful and important to bear witness to them.  And, of course, we could talk about it after if they had any questions.

But this is hard stuff.  Life is messy.  This topic is something you don’t often talk about, and here we are sitting in a room full of people, an AUDITORIUM of people, talking about it.  When a story came up on the screen about a father who donated his son’s organs after he had an asthma attack, Penny leaned over and said, “This is one of the stories you warned us about, Mom,” as she held my hand.

Here is the thing that goes along with this knowledge, that people died and their organs were donated:  Palpable gratitude.  An auditorium full of grateful people:  recipients and those who love them.  Families and friends.  Whole teams of people who have gotten together to celebrate this extension of life.

And these people are competing and attempting sporting events they might not ever have done before, because they were given a second chance.  I have lots more stories, there will be more blog posts about these games because I’ve learned a lot in the past few days about  community through resilience, about the power of multiple generations coming together, about giving voice to the pain and the grief and the gratitude all at once.  About how your story is just a part of the thousands of other stories, creating a mosaic of meaning.

I’m going to say one more thing before I close.  Register to be an organ donor so that your loved ones don’t have to make the decision.  Over and over again, I heard how much easier it was for them to donate their loved ones’ organs because they knew it was what the person wanted.

Don’t make your loved ones make that decision.  Make it for them, so they can just follow your wishes.

More to follow.

Photo:  The Auditorium at the Donate Life Transplant Games, waiting for everyone to arrive.

Pattern of Acceptance

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Once you get a diagnosis, how do you get to the point where you’ve accepted what’s happening to you, your child, your family, your life?

You may have heard of the Kubler-Ross model of grief.  At first it was applied to death and dying, but it has been spread out to many different kinds of grief.  You probably read about it in your psychology college textbook, because it’s not new.  I ran across it when Wendy was in the hospital and I realized that I was mourning our old life, the life before Wendy got sick, so I did some searching and rediscovered the Kubler-Ross model.  I am by no means a psychologist, but this helped me to get some perspective on our situation with a new diagnosis and a child that was never going to be the same again.  It’s a scary time, and your feelings and emotions run the whole gamut.  Sometimes I still check in to see where I am on the continuum.

But now, I like to think of it more as a pattern of acceptance than stages of grief.

Denial:  The first reaction is denial. In this stage individuals believe the diagnosis is somehow mistaken, and cling to a false, preferable reality.  I remember thinking not that the doctors were wrong in everything they were telling me in the “Room of Doom” in the PICU, but I remember thinking that they must be exaggerating.  They weren’t.  I hoped that once we got home Wendy would improve.  She didn’t.  I remember the night I realized that she wasn’t going to get better.  She just wasn’t.

Anger:   This is often accompanied by guilt.   “Why me? Why her?  What did we do to deserve this?”  I remember walking up and down the streets of Beacon Hill being jealous of families that were enjoying the summer.  There was a woman who was yelling at her child by the “Make Way for Ducklings” statues because he had gotten his hands dirty from his ice cream cone and it was all I could do to tell her to get over it, enjoy this moment, because your kid could be in the hospital right now.  Thankfully I kept my mouth shut.

Bargaining:  This is a hard one.  It involves the hope that we can somehow avoid this outcome.   I could understand why people go to the ends of the earth to find a miracle cure for their child.   People facing less serious trauma can bargain or seek compromise.  Sometimes it works.  My father said if Wendy survived that he would quit smoking.  You get the idea.  It’s trying to find what you can do to change the situation.

Depression:  This stage can last a long, long time, and some people argue that in part of this stage, Anger comes back.  Everything feels hopeless and you feel rudderless.  All of your expectations and plans have to either be put on hold or moderated. You wonder how it can all be so hard, and why it’s so unfair, especially for your child.  You might want to find a counselor to talk through your feelings.  It’s really hard for a long time, and then at some point you realize it’s not quite as hard, and you slowly move toward the next stage.

Acceptance:  “We’ve got this”.  This is the idea of doing the best you can with what you’ve got.  Gratitude sets in and you might find yourself being happy and being surprised at the happiness. You realize that life is moving on and you’re moving on with it.

I think, though, that for parents of chronically ill kids, that there can often be another stage:

Empowerment:  This is the stage where both you and your child take the hand you’ve been dealt and play it.  When you join advocacy groups, when you allow you child to re-join sports or after school activities or when you begin to travel again.  When you do the things you love even with the obstacle, even when it’s not exactly the same. You may be a mentor to other parents of chronically ill kids, or you may write or speak to groups.  Or you might not.  Just doing the best you can is enough, and it’s inspiring to others.

Other members of your family will find acceptance at different rates.  For us, one family member stayed longer in anger, one stayed longer in bargaining.  It’s totally an individual journey, and it’s important to realize that we don’t all come to the same understanding at the same time.  It takes a really long time to be ok with your life not being what you expected, and a new normal grows and takes hold, along with real, genuine happiness and gratitude.

The other thing that I want to say is that in this continuum, you might be knocked backward into other stages or have to start all over again with a new diagnosis.  We’ve been dealing with some new symptoms for Wendy and I’ve lately been keenly aware that we might be starting this cycle all over again, but that’s OK, we’ve done it before and we will do it again.  But that won’t mean it’s not difficult, or heart breaking, or painful or nerve-wracking, it just is.

Finally….when Kubler-Ross was interviewed years later, she said that she regretted putting the stages of grief into concrete categories, because while these are common stages, they aren’t definitive.  Where is room for confusion?  For frustration?  For complications?  For disillusionment?  These things that you feel, they are normal to feel.  Being aware about them, being in touch with your feelings and being able to both experience them and express them, will hopefully help you to heal.  Be gentle with others who are on this path with you.

Empathy goes a long way in the healing process.

Picture:  A winding road in Tuscany, leading to Montalcino.

 

Siblings of Sick Kids

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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—-

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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

Find Your Tribe

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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

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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.