Seasons Greetings from the Island of Misfit Toys

I’m going to tell you a secret.  The holidays can be incredibly stressful for  a parent of a chronically or terminally ill child.

It’s because a lot of times we feel like residents on the Island of Misfit Toys.  You know that story, where Rudolph the Red Nosed Reindeer lands on an island of toys that are a little different. The Charlie-In-the-Box, the spotted elephant, the train with the square wheels, or the water pistol that shoots jelly.  They are toys that are different enough to be pushed to the sidelines, in favor of a more sparkly Christmas.

How do we feel different?

It’s the Christmas Cards, for a start.  The perfect pictures. The smiles. The letters that accompany them, telling of milestones and trips and accomplishments.  Don’t get me wrong, we LOVE that you are doing so well, that your kids are doing well, that you’ve done these amazing things.  But our child’s milestones might be different.  Our accomplishments, though amazing for us, seem delayed to some.  We don’t know exactly what to write about, what to share.  We feel a tiny bit of shame in this, the mix of envy and embarrassment, and the knowledge that a few of our kids won’t be around next Christmas.  We don’t want to bring you down with us, but for some of us, this is a reality.

Then, there are the families that spend the holidays in the hospital, and though the staff does its utmost to make the time special, the truth is that  it’s not home, it won’t be home, and it’s the last place that most people want to think about on Christmas.  That’s the reality.

I recently sat around with other parents of chronically ill kids, and this is what we talked about, the wanting to be happy for others, the burden of making the holidays special, and the feeling like you’re always not measuring up to the ideal.  For me, here is a small example. Wendy takes medication three times a day (besides her insulin.)  We are fastidious about giving it to her. We have a weekly pill organizer, and she never misses her morning dose.

Except on Christmas.

For the past three Christmases, she’s missed her morning dose, because we get up earlier and open presents. Then there’s a rush for coffee and breakfast, and cleaning up.  We usually realize around 10 am that we’ve forgotten.  There is always guilt with forgetting. There are parents who have kids in wheelchairs and on breathing machines.  Parents who have to do PT on their kids’ chests.  Medical care happens even on the holidays. Parents are vigilant even on the holidays.

We love our kids.  We love our life. And we love the holidays. But sometimes when we smile and say we are stressed, or busy, it’s more than that.  Sometimes it’s that we realize if we told you more it would ruin your holiday mood, and you deserve to be happier during the holidays.

If you’re really interested, ask more questions.

In the meantime, enjoy your holiday, and your family, and the season.

Happy Holidays.

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World Transplant Games: Community

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

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

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

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

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

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

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

They are warriors.

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

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

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

I am grateful to witness it.

Mothers of Imperfect Kids

Dear Mothers of Imperfect Kids,

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

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

You have become very good at listening to your gut.

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

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

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

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

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

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

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

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

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

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

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

They are imperfect kids, but perfect to you.

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

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

Happy Mother’s Day, Mama.

You are loved.

Understanding, But Not Sharing, Despair

I want to get this blog post just right, and yet I’m afraid that I will fail miserably.

But I’m going to try.

I read today about the Short family, a family from Pennsylvania who died of an apparent murder-suicide.  They had a chronically ill kid, a child who had received a heart transplant.  They had been featured in their local newspaper when their daughter Willow received the heart. The story was hopeful, it was upbeat.  There was a future thanks to a generous donor.  People like to think of it as a happy ending, but in reality organ donation is only a beginning.

A year later, the same family was featured in a New York Times article, detailing how hard it is to get the anti-rejection drugs compounded and filled, where it shows a picture of the mom dosing up the medicines, which by the way are the exact same medicines my daughter takes.  We have shared the same terror of worrying that you are going to run out of the medication that is keeping your daughter alive because of some stupid rule made by either the pharmacy or your insurance company.

In fact, up to this point, I know exactly how they feel.  Scared, hopeful, struggling.  There’s not a lot of place in this world for a sick kid.  I’ve said that for so many years now I feel like a broken record.  Not a lot of place, so parents of these kids keep fighting.  Fighting for prescriptions, fighting for 504s or IEPs in school.  Fighting for doctors’ appointments, fighting to be heard by doctors and nurses, by other hospital staff, by pharmacies and insurance companies.  Giving the thumbnail version of your child’s illness to every new person on the phone, every health care worker you meet, every time.

It’s exhausting.

And yet, none of us know what we sign up for as parents, and we have to move forward.  We are not just caregivers, but nurses, social workers, dieticians, pharmacists, and medical managers.  No one is going to do it for us, and no user manuals are included.

There are other kids in the family, kids who might not get as much attention as they deserve because the parents have to deal with the sick kid, the emergency, the crisis.  They are unwitting victims of the tragedy.  That adds pressure, too, the fact that you know you’re not able to be the kind of parent you want to be to all of your kids because there simply aren’t enough hours in the day.

There are stresses with work, normal stresses, but nothing more stressful than the idea of losing your job, because you need those health insurance benefits more than anything else.  So you make fewer waves even if something might be wrong because you can’t afford to be unemployed.  There are sacrifices you make, as little as sleep or as large as a professional life, in service to the illness and the medical needs of the chronically ill child.

All of these problems contribute to difficulty in a marriage.  You promise to love, honor and cherish when things are at their brightest and the future has all sunshine and rainbows, but stress, bills, worry, and problems are unrelenting.  You are constantly afraid that the delicate balance you’ve constructed will get tipped again with an emergency. You are waiting for the other shoe to drop.

Damn, it’s really hard.

The mom in this tragedy blogged about her struggles with PTSD, from dealing with her daughter’s medical issues.  She talked about her survivor’s guilt, knowing that another child died while her child lived.  I can personally attest to that guilt, and have blogged about it before in my piece, Dear Mom of My Daughter’s Kidney Donor.  It is a unique and exquisite combination of gratitude and guilt that parents of kids who have received organs from deceased donors share.

Now there are five dead bodies, six if you include the dog, in a murder-suicide. A family that seemed very public about their struggles, struggles that I share as the parent of a chronically ill kid.  And I feel so many emotions connected to it.  Anger at the futility of it, and anger for the donor family too.  Sadness, a bottomless sadness for the family.  Horrible unrelenting understanding at the dark side of the situation.   Gratitude for the love and support from my family and friends, because through all of the many years now I have never, ever felt alone.

Because the truth is, that while there’s not a lot place in this world for sick kids, there’s not much place in this world for their parents either.  It’s only through the personal connections you have and make that carry you through the hard times.  It’s knowing you’re never alone, that there’s always someone there to listen, laugh with, or help you problem solve.  It’s combating the feeling of isolation with the knowledge that there’s always someone there for you, and you are there in return for them.

Hug the ones you love today and thank them.

My deepest sympathies and condolences to those who knew and loved the Short family.

The National Suicide Prevention 24 Hour Hotline: 1-800-273-8255

 

Diabetic Misadventures In Italy

I love coming back from vacation and telling my friends and family about it.  Ok, I don’t really love coming back from vacation, but I do love sleeping in my own bed, petting my kitty cats and seeing friends that I’ve missed.  This year was a very special trip to Italy and its large southern island of Sicily.  While there, we visited with family and friends, we returned to the site of our marriage fifteen years ago, and we saw amazing places along the way.

Upon our return to the States, I tell our friends and family about swimming in the Tyrrhenian Sea, about eating at the same restaurant we did on our wedding night.  I talk about the flavors of Gelato, beautiful candy and earth colors of them lined up along the freezer, and of choosing new flavors like jasmine or pistachio-chocolate or green fig.  I tell them about the massive Greek temple ruins that the girls clambered along, about the graceful Baroque churches, or about the bell-towers or domes we climbed to get the best view.  I might tell them about the harrowing drives along the Amalfi Coast, with narrow roads hugging the cliffs or navigating traffic in Sicily where the street signs and traffic lights are more like suggestions than laws to native Italian drivers.  Maybe I share stories of encounters with the locals, like the sausage man who threw rings of salami in the air to the kids and persuaded us to buy a link as long as my seven-year-old’s arm.  These are the stories I tell them.  These are the stories that they want to hear.amalfi coast

But vacations are not all wonderful moments, and when you have a child with special health care needs, you not only have to plan more, but you have to be ready to roll with the punches when they come along, and that’s all a part of the journey, but not a part anyone wants to hear about.

My twelve year old has multiple health problems, but one of them is that she is a type one diabetic, which means that she cannot produce her own insulin to digest carbohydrates.  We have to give her insulin with every meal based upon what she eats so that she will stay healthy.  This has to be given subcutaneously, or under the skin, in order for it to work.

The first moment of terror for me this vacation was when I realized, suddenly, that we had foolishly forgotten the extra insulin for my daughter at home.  We had enough for a week, but we would be away a few days longer than that.  Calls were made to our insurance company, and we discussed overnight shipping, ice packs, and reliable addresses.  This didn’t sound like a good option.  So I learned how to say in Italian, “My daughter is a diabetic, and I would like to buy some more insulin,” Normally, my Italian is limited to restaurant menus and directions to the WC, so this was a stretch. We were in a tiny hill town called Castel Gandolfo, some twenty miles south of Rome, it holds the summer palace of the pope and contains the dairy cows used to make his special milk.  It sits on the edge of an old volcanic crater that now has a lake.  Our apartment looked out over the lake and we could walk the whole circumference of the hill town in under a half hour.  We went to the first farmacia, the Italian word for pharmacy, with a green fluorescent cross outside its door, located in the shadow of the summer palace. The pharmacist understood what I was trying to say, but told me in Italian that he didn’t have what I needed, but not to worry, other farmacias would, I just needed to keep looking.  Ok, onto the next stop.castello gandolfo

This was the town of Amalfi, when fifteen years earlier my husband and I got married in the presence of a handful of close friends and family.  We had planned to have dinner at the same restaurant as we did on our wedding night, so we arrived early to the town, walked around and waited for the restaurant to open.  I spotted a farmacia tucked away in a little square.  Amalfi is a seaside community, with steep cliffs and rocky beaches, and I was standing in line at the farmacia with beach goers who had gotten too much sun or mothers that needed more formula for their babies.  But luck was with me, the woman at the farmacia produced what I needed:  a vial of Humulog.  I finally was able to relax knowing that we could take care of our daughter for the whole vacation, and get insulin as we needed it.

noto dome

Which was good, because we needed it again, in a more dire way.  My daughter wears an insulin pump, and we were in the small Baroque town of Noto in south east Sicily.  We were admiring the large cathedral in town that was showing off its new dome, because the old dome had collapsed in the 1990s and it had just been reconstructed.  The church was beautiful, clean, cream colored, with gorgeous statues along the walls and spacious pews making the whole church feel light and airy.  When we heard the high pitched alarm, we knew immediately what it was, Wendy’s insulin pump had malfunctioned, and needed to be replaced.  I sat in a corner of the church looking at a statue, getting out the medical supplies, and making a new “pod” of insulin so we could put it back on Wendy.  That involves disconnecting the old pump, filling a new one with a large syringe and a vial of insulin, making sure it works, then re-attaching it, and turning it back on.  I wondered if anyone was going to stop me with the large medical bag and beeping equipment, but no one did.    I filled the new pod with the last of the insulin, and then I handed it to Wendy to apply it in a bathroom with an alcohol pad.  Normally I would help her, but Italian bathrooms are notoriously tiny, so she did it herself.

We walked around the lovely town thinking we had dodged a bullet, climbing the bell tower and looking at the magnificent view, but when we found a local trattoria and ordered our dinner, we noticed that Wendy’s blood glucose was too high and gave her a bolus of insulin before dinner.  It didn’t work and she went higher, so we gave her another bolus, but that didn’t work either.  Something was wrong.

It turns out that Wendy didn’t apply the new pod well to her skin and it wasn’t working.  I had used the last of the insulin on the new pod, and we had more in the refrigerator back where we were staying, an hour away.  We were with another couple, a childhood friend of my husband and his family, and we had all visited the town together, had dinner together, and we had promised the four children gelato if they did well in the restaurant.

single gelato

The problem was that Wendy’s glucose was too high to go untreated and give her gelato too.  It would have sent her sugar up to dangerous levels.  But all of the other kids were expecting gelato, in fact, the town of Noto is supposed to have the best gelato in Sicily.  We couldn’t tell them just wait while we drive an hour to get more insulin, reapply a new pod, hope it works, and drive back another hour.  It was late, it was dark, and the kids expected the best gelato in Sicily.

An option could have been to let the other kids have gelato but not Wendy, but honestly, that would be a scarring memory for her, and while we want her to know that she is extraordinary, we want her to know that she is normal too, that she can do normal things, just like the other kids, and that includes sampling the best gelato in Sicily.  Imagine watching your friends all eating gelato and you can’t at the age of twelve.

Now tell me what you would do as a parent.

Farmacia Italy-746316

So we went to a farmacia in Noto.  I spoke my sentence in Italian.  The first one didn’t have a vial.  We walked to a second one, and thank God, they did.  We opened the box, opened the vial, pulled out an insulin syringe that I also happen to have with me in the medical bag, calculated what she would need to give her to both reduce her glucose and give her insulin for a gelato too, and we filled the syringe, gave her a shot in the arm right there in the farmacia, admist little boys with tummy aches and people who needed band-aids, handed the used syringe to the pharmacist to dispose of safely, and we left the store.

Then we walked to the restaurant with best gelato in the world and ate it.

And it was delicious.

After it was all over, after the alarm, the new pod in the church, the dinner, the two farmacias, the injection and finally the gelato, it had taken the better part of the afternoon and evening, just for one little girl, just for one diabetic, just for one vial of insulin, just for one cup of gelato.

And what was the best part of the day for me?  My twelve year old, when it was all over and we were walking back to the cars after the gelato, ready for the drive back to where we were staying, took me aside by the arm, kissed me on the cheek, and thanked me for going through all of that.  She understood the effort it took, and she was grateful. That’s what I’ll remember, not how hard it was, but how much she appreciated being able to be just one of the the other kids joking and laughing and eating the best gelato in Sicily.

This is not a story I’m necessarily going to share with my family and friends when I get home.  Why not?  It’s not exactly what they want to hear.  They want to hear about the swimming and the churches and the beautiful art, the stories of the crazy drivers and the marketplace hawkers.  They don’t want to hear about the hard stuff, the worry, the difficulties.  Vacations are supposed to be fun, right?

But to me, this isn’t just a vacation, it’s showing my daughter that her medical difficulties can be overcome, that problems can be sorted out, even in another country, even when we don’t speak the language.  That if she really wants something, we will find a way.  That she shouldn’t be held back by the difficulties, but should look at them as challenges to be worked through.  Yes, it’s a beautiful location to learn this lesson, and yes, we are lucky that she’s healthy enough to do the travelling in the first place.  But to me, the travelling is showing her that solutions are possible.

The rewards can be sweet.

Ripple Effect

Have you ever heard a story that just stays with you?  Something that hits at your core, that makes you think about it, and re-think about it, and connect to it, and share it.  Maybe you have stayed in the car a little longer in a driveway because you are listening to “Story Corps” on NPR.  Maybe it’s something you’ve read on facebook.  Sometimes, you don’t realize how much a person’s story means to you, in your own journey to understanding and recovery from a diagnosis or the diagnosis of your child.

This recently was brought to my attention when a woman asked to be my facebook friend.  I was pretty sure I didn’t know her, had never met her, but there were a lot of people I had met at the American Transplant Games, and many of the mutual friends she and I had in facebook were those same people I had only recently met in Cleveland.  So I decided to accept her friend request and see who she really was.

What I didn’t know is that I had been reading her blog posts for over seven years.

Her daughter, Lacey, had gone through two organ transplants, both a heart and a kidney.  The heart transplant happened when Lacey was a baby, and after many years of immuno suppression (which isn’t great on the kidneys) her kidneys gave out too.  Lacey’s brother donated his kidney to her.  I had read all about it on their CarePage.

CarePages are a medical blog where you can update your loved ones about your condition. There are other ones like it, the most popular being CaringBridge.   We had been blogging about Wendy’s illness from the first week that we were at Massachusetts General Hospital.  It was helpful because it kept everyone updated without having to tell the same story over and over again.  It also was therapeutic for me to take stock of the day in the evening and determine what had gone well and what hadn’t.  In a hospital where certain events happens quickly between long periods of waiting, it was helpful to think through every day to process it all and write about it for our loved ones.   It was also bolstering because our loved ones could write messages of support for us and for Wendy at the bottom of every post, carrying us through to the next day.  There was an option to keep it private, to have people ask to join the group, and initially that’s what we did, kept it closed for only family and friends.

At the point where we were told that Wendy was going to need a kidney transplant, we had never met anyone who had gone through organ transplantation before, so I searched in Carepages and found Lacey Wood’s site.  It’s called LuckyLacey, and it told not only all about her journey as a heart transplant patient, but also as a kidney transplant patient.  It told all about her competitions in the American Transplant Games and the World Transplant Games.  It talked about her college that has a special section for kids with transplants who are going through various stages of transplantation so that they can get the best care they need while still going to college.  I learned so much from this site, that there was a warm, caring transplant community that connected each other to the best care and resources, that there was a celebration of life and living.

At a time when I was very scared, this blog especially gave me hope.

It also showed me what was possible for Wendy.  We never would have known about the American Transplant Games, or the Transplant Winter Camp, or the Chronic Illness Initiative at DePaul University.  We learned though Lacey’s journey and through the generosity of her words in her Carepages blog.

Her blog made me re-think our blog, WildWonderfulWendy.  What if our blog about HUS and kidney transplantation helped someone else the way that LuckyLacey helped us?  Michael and I talked about it and decided to make Wendy’s blog public.  

And now, years later, I’ve started this blog.  I outlined why I decided to write it in the first place in my first post, Brave Fragile Warriors.  I realized that being the parent of a chronically ill kid can be incredibly isolating.  You have so many feelings and not a lot of people who can relate to you.

We never know what impact we have on another’s life.  We don’t know what our ripple effect is.

When Lacey’s  mother contacted me to be my friend on facebook and I realized who she was, I sat down and wrote to her to let her know how much Lacey’s blog helped me through the fear and isolation of being the mom of a kidney transplant kid.  Otherwise she never would have known her own ripple effect.

It’s so important to share these moments, so other parents know they are not alone.  It’s equally important to share with others how much their stories touch our hearts, so that they may continue to write.  We are many stories, but the Same feelings of helplessness, fear and love.

Thanks for reading my stories. Please share your own, in the comments below or with your own blog and then let me know so I can read them.

Forward together is better than forward alone.

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.

 

 

 

 

“A Difficult Decision Was Made”

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

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.

 

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.  🙂