Postcards From Camp Sunshine

The girls and I packed  and drove my hatchback up to Camp Sunshine last week.  It’s a camp located in Casco, Maine, and it’s dedicated to bringing Summer Camp to kids with life threatening illnesses.  Founded in 1984 by Dr. Larry Gould and Ann Gould, it was originally a camp for kids who had cancer.  In partnership with Dana Farber Hospital in Boston, 43 children and their parents came up for a very special week.

The camp has now expanded to an all-year, multi-discipline program.

We were going up for the solid organ transplant/renal themed week.

It’s a program that only gets one week a year, so it’s pretty competitive to get a slot of one of the forty “family suites” that make up Camp Sunshine.  We felt very lucky, except for the fact that my husband couldn’t join us.  Instead, I was allowed to bring one extra adult with me, so I asked my friend Kelly who enthusiastically agreed.  As she was driving from another state, we agreed that we would meet at the front door.

Day 1:

It turns out, there are three doors:

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And, I might add, they use a LOT OF YELLOW.  Everywhere.  On everything.

We each tried a different door, because, well, you just have to given the choice.  We arrived at the front desk, had an incredibly easy check in and then were told how to get to our suite, and that there would be volunteers to help us move in, and to make sure that we used them.  There would be a short reception, followed by dinner, followed by an introduction, a show, then a family bonfire and marshmallow roast.

So we got our stuff and headed to the suite, which consisted of a large room with bunkbeds and a futon, and then an extra bedroom. The girls, of course, wanted the bunk beds which was fine by the adults. There was a microwave and a small refrigerator.  The bathroom was spacious.  It was just about everything you needed for five nights away from home.

The volunteers were there.  I want to say the volunteers were EVERYWHERE and are the heart of the organization. They start in age from high schoolers and go all the way up to retirees.   They are there with your bags, they are there to serve your food, they are there to be camp counsellors to your kids, they are there to take your tray.  They help with set up and break down, they sit with you at meals. Quite frankly, they are the best part about Camp Sunshine.

I’m only on day one, so let me tell you when I knew it was a special place.  Yes, the dinner was good, so was the show.  We were introduced to the Opening/Closing Song:  “Hands Up” by Ottawan, complete with obligitory dance.  The juggling show and performer were both awesome.

But it was after all of the introductions that we got to go out to the bonfire and roast marshmallows.  There was a little girl, who became one of my favorites over the course of the week.  She had an oxygen tank and tube going to her nose.  The tank was wheeled around behind her.  She and her parents negotiated unhooking the oxygen tank so she could get close enough to the bonfire to roast the marshmallows.  The look of pure joy on her face showed me what this camp really was all about.

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Day 2:

Day two arrived bright and early.  We had to arrive in time for the Camp Sunshine Chant that opened all of the meals.  After breakfast, we had to sign in the kids to their respective camps.  Penny was in the 6-8 year old camp.  Wendy was in the 9-12 year old camp.  I was a little nervous for both of them, because this was a new place with new kids.  They did not share my apprehension, however, and got right down to the having fun part of camp:  Arts and Crafts, Pool Swimming, Kayaking, and  their respective games rooms.

The parents, on the other hand, had to do some team building exercises.  We were divided into three groups, and we had to come up with a team name and a team song.  We had to practice the song and then perform it before the other adult groups and two teenage groups that joined us later.  I’m not really into that kind of touchy-feely-joiny stuff, but there I was belting out “JOY(pump it up pump it up) and PAIN, CAMP SUNSHINE, NO RAIN” to the tune by Rob Base and DJ EZ Rock.  Yep.  There I was.  All this in the quest to win the “Loving Cup Award.”

Spoiler Alert:  We didn’t win.

The afternoon was much the same schedule for the kids, but the parents had a discussion group where we all came together to talk about our kids and our concerns.  The first day was basically just introductions because there were so many parents there.  I was blown away at all of the kids, all of their medical necessities, and how each family dealt with those issues in their own way. They looked at these meeting times as a way to discuss things that had been on their mind for the last year, many of these families coming back multiple times and giving the group a family feel. The Social Worker, Nancy, had been at Camp Sunshine almost since its inception, and was really excellent at facilitating the group, which could sometimes veer off into discussions before introductions were concluded.    It was the first time in a long time that I felt like Wendy’s medical conditions were rather minor compared to some of the other families in the room, who also battled genetic disorders, cancer, multiple organ transplants, and rejection episodes in their past.

That evening was the masquerade dance. All the kids dressed up and danced like there was no tomorrow.  Lots of the adults did too.  Not to worry  if you didn’t have a costume, there was a WHOLE CLOSET dedicated to costumes, in all shapes and sizes.  Penny was the Queen of Hearts, and Wendy was the Cheshire Cat.  I was a knight, and Kelly was a hula girl.  Lots of the volunteers came with their own costumes, of note, the three little pigs, Prince in his Eighties era, and lots of superheros.

 

Day 3:

This day consisted of the other events mentioned above, the camps, the parent discussion groups, and the wonderful meals.  But this day, day three, was the day of the Talent Show.

The talent show makes a person feel like they are in one of those big hotels the Catskills, where talent is loosely defined and highly celebrated.  It was arranged by age, so the four year olds went first.  One four year old laughed into the microphone and was applauded.  The six year olds were a little more organized.   Penny and friend did a “dance” routine.  (note the air quotes). There was also ear wiggling, paper airplane making, and joke telling.  By the time the show got to the teenager group, you had people who had planned a talent and were able to execute it on stage:  good dancing, good singing, an adoring crowd.

Everyone left feeling validated, having laughed a lot and cheered a lot.  We collapsed into our beds.

Day 4:

This was the day we were all nudged out of our comfort zones.

In the morning, the kids all had their normal camp activities.  Kelly and I decided to go to the lakefront and take out a kayak.  We kayaked out and around, and then we landed on a little island.  We decided to beach the kayak and go swimming.  I talked Kelly into swimming around the island (it was small) and it took some doing, but she agreed.  It was super fun, and how often can you say you swam around an island?

We met the girls and it was “Afternoon Family Time” before the big evening activities, so we decided to go off campus and we travelled to the LL Bean Flagship Store in Freeport Maine, with a side stop for ice cream.  Penny and Wendy got winter coats.  It was nice to get out from camp for a little bit and see that the rest of the world was still spinning.

Then we all arrived back, and it was time for Wendy to do her overnight camping adventure without us.  She and the 9-12 year olds travelled to the yurts on the other side of the camp and had a cookout and sleepover.  She and I negotiated ahead of time what she was going to do about her diabetes, and so she periodically updated me with blood sugar reports and pictures of food.  It was a great to know she was on top of things as she was the only diabetic in the whole camp.

Penny, meanwhile, got to stay up late and watch a movie with the 6-8  year olds.  They watched Zootopia, ate popcorn, and felt like badasses for being able to stay up until 10.

The parents had a lovely dinner that was kid-free.  Roast beef, salmon, lots of veggies, special fancy sodas (Camp Sunshine is a dry camp.)  Then they were encouraged to sing karaoke, and lots of them did.  (You’ll notice I said them, not we.)

An excellent night, giving everyone some independence, and allowing them to build friendships without baggage.  It was much needed.

Day 5:

This was the last full day of camp.  Everyone knew it.  The kids prepared for the closing ceremony.  They built wish boats.  Everyone started to worry that it was all going to be over soon.

This was the day that a lot of the parents started their own conversations about their kids, outside of the parent meeting.  This was the day that I learned the most about what other parents thought, how they really identified themselves, what they worried about.  We compared immuno-suppression regimens, 504s (medical needs documentation for schools) and after-school activities.  I was surprised that no other kids did the American Transplant Games, and that no other parents were on Family Advisory Councils at their hospitals.  We spoke about these things over an amazing barbecue lunch on a beautiful summer day.

Then the time came for the wish boats.  Each kid designed a boat that they would launch at the pond while the Camp Sunshine Song played.  We gathered around the pond waiting to light the boats at dusk:

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Then, wishes were made and the boats were lit and launched:

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Then we all filed into the Entertainment Hall for the closing ceremonies, where each age group made a presentation. The parents also did their group cheers again (Yay).    There was a slideshow of all of the events from the week.  It ended with the “Hands Up” song in closing.  Actually, it ended with “That’s What Friends are For” and lots of tears.

Day 6:

We woke up this morning and said say goodbye to Camp Sunshine.  We were given a directory with family photos for each family at camp.  We made lots of promises to keep in touch with certain families.  Maybe some of those promises will be kept.

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Overall, it was a good experience, and I can see how it would be even more beneficial to families who feel more overwhelmed or isolated than we do.

If you know of such a family, I encourage you to direct them to this camp.  Here is the website:

https://www.campsunshine.org/

Also, if you are looking for a worthwhile charity to donate to, I can’t think of a better one that gives families a much needed break from their daily medical struggles.  Take a look at the website to see happy faces.

Most of all, I encourage you to sign up to be a volunteer, because I truly believe it will change your life.

May we all be so lucky to have an experience in our lives as Camp Sunshine. It highlights the best of humanity, that of helping sick kids feel normal.

 

 

 

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Lockdown Bags Make Me Angry

There are very few things that make me angry.

But one of the things that I find is when I get really furious, it’s because in that moment I feel like I have no control.

This is one of those instances.

These are called “Lockdown Bags” and I have to make one bag for every teacher in Wendy’s middle school.  The contain about 75 carbs in them in case she gets low, along with a few alcohol pads.

This seems like a good idea you probably think.  This is good in case Wendy gets too low so that she can get some sugar in her so she doesn’t pass out.  The problem with insulin dependent diabetics is that your brain still needs carbs to function, and your body needs insulin to digest the carbs, but if you give too much insulin, your body shuts down, you pass out and sometimes go into convulsions.  Diabetics can often tell when they are getting low because they get headaches and shaky, sometimes irrational, and usually hungry.  We’ve all had  moments when we are very hungry, where we get shaky and irritable, well, that’s our blood sugar getting too low.  So this gives you an idea.

Our bodies, non-diabetic bodies, won’t continue into the pass-out, convulse stage, like a type one diabetic body will.  That’s when it gets scary, and when the diabetic needs an emergency shot of glucagon to get the systems of the body going again.  If she doesn’t get it within a certain amount of time, quite frankly, she will die.

The term is called “Severe Hypolgycemia Resulting in Death,” but it is also known as the “Dead In Bed” syndrome, because roughly this is what kills 1 in 20 diabetics in the middle of the night.  Their blood sugar goes low and they don’t know it and they never wake up.  There’s an article about Dead In Bed Syndrome if you’d like to read it.  It’s not uplifting.

This is why, in our house, we have our alarm set for 2 am and check Wendy’s sugar every night,without fail.

But I digress.

I’m giving your the reasoning behind the Lockdown Bags.  The extra-sugar-just-in-case isn’t why it makes me angry.

It’s the Lockdown Part.

Picture this.  There is a single person shooter in a school, so the school goes on Lockdown.  All the doors are locked and the children shelter in place.  This could happen for a few minutes to, let’s say, 24 hours.  No one goes in, no one goes out, while local law enforcement tries its hardest to take down the gunman and save the kids.

So, what happens if and when Wendy goes low during a lockdown?  When too much insulin in her system means that she goes low, and she can’t leave the classroom to go to the nurse because there’s a gunman in the building.  So these ziploc bags that I make at the beginning of the school year are little insurance policies that if there is a gunman in the building, my daughter won’t die from hypoglycemia.

If there’s a GUNMAN IN A SCHOOL my daughter won’t die from HYPOGLYCEMIA.

You’ll recall in my first statement that I get angry when I feel like I don’t have any control of a situation.  Here is an amazing example.  Here we are in a society that constantly grapples with the right to buy and bear arms while still protecting innocents who get killed from the wrong people buying and bearing arms.

Please don’t lecture me about the Second Amendment, I’m a college professor.  I teach the Constitution for a living.  And I get it, we were a country that was formed from a Revolution that forcibly took away governmental power with our guns.  So we wanted them protected.  Now there are powerful lobbyists who feel that any sanction on gun ownership, like let’s say  someone on the No Fly List or has a history of Mental Illness can’t buy a gun, is a slippery slope where the government will just start willy-nilly adding people to the No-Fly List and get people committed so that our right to bear arms will be truncated.

Every time a horrific shooting occurs in a nightclub or a bar or a school, these lobbyists come out and say, “What a tragedy, but there’s nothing we can do.  Such a shame.  If only we could arm more people this wouldn’t happen.”

It is the sacrificing of innocents to protect an ideal from 200 years ago.

What a mess we’ve created.

And all I’m trying to do is keep my kid safe.  I’ve thought about sending the bill for these “Lockdown Bags” to these lobbyist groups.  That’s something they can do.

All I can do is pack these silly little bags in the hopes that they never need to use them.

New School, New Nurse

Last year, Wendy was starting Middle School.  We made an appointment with the school nurse ahead of time, so that we could talk to her about Wendy’s medical needs.  We had a written medical history outlining the eight years of medical care she had received. We had her orders both from her endocrinologist and her nephrologist.  We had a box of medications and diabetic supplies, some fast acting carbs, some slow acting carbs, some chocolate milks that gave both carbs and protein, and some “lockdown bags” all neatly labelled.

We sat down with the nurse, clearly nervous.  Wendy is a complex case, and we are passing off her medical care to a new person, someone who will see her for most of her waking hours.  She will be switching classes, with teachers who don’t know her yet, and we wanted to just talk to the nurse to give her a sense of the whole situation.

What she said nearly floored us.

“I have over a thousand students in this school, ” she said, “And I can’t hold hands.  She is not the first diabetic I’ve ever had, and I know how to do this.”

What?

You may have had diabetics, but maybe not one who has spent 200 days in the hospital.  You may have had diabetics, but you might not have had one who also had a kidney transplant.  You may have had diabetics, but probably haven’t had one who is also immune compromised.  You may have had diabetics, but not one who has high blood pressure. You may have had diabetics, but not one who has to go in the hospital as soon as she has a stomach virus or a fever over 101.

In short, you haven’t had my daughter.

Part of me gets it.  It’s the way the middle school  has to cut the apron strings, ground the helicopter parent, give the child more responsibility.  The nurse has to exert her dominance, show she is the running the show.

She just could have done it so much better.  Building trust does not come from saying, basically, that I worry too much and she’s got this.  That’s bravado.  That hubris.  That’s lack of compassion.

It’s a rookie move.

I left that meeting angry and scared.  I took Wendy aside and told her that she’s on her own for the first few days, that she will have to be very clear about advocating for herself, and if she can’t get the medical attention she needs, she needs to call me.  This isn’t what I usually say.  I usually say we are all part of a team, we work together.  But this situation made me think that maybe we weren’t all starting on the same team.

And didn’t the poor kid have enough to worry about?  Middle school might be the most awkward years of anyone’s life, and now she not only had to worry about her locker combination, not getting lost, getting used to the schedule, finding her old friends and making new ones, but now she had to make sure that her voice was heard, that her needs were met, but by the school nurse.

I couldn’t believe that this was how we were starting her middle school years.  I didn’t know who was more nervous on the first day of school, Wendy or me.

The first few days went by.  I emailed Wendy’s morning glucose reading to the nurse.  I informed her if Wendy had a doctor’s appointment.  She emailed me back with the last reading of the day.

There were many phone calls back and forth, making decisions on sugars and blood pressures.

As the year continued Wendy did become a good advocate. The nurse did her job and it was efficient.  The nurse was good at communicating with me about Wendy, sometimes even calling if Wendy “just seemed off.”  The nurse over the year complimented me on Wendy, how she is such a delightful presence, how she is so well spoken, how she is light hearted and sweet.  I know these things, but they are still nice to hear, and nice to know that the nurse has taken an interest in her.

At the end of the year, I got a call from the nurse, who still calls me “mom” which I hate, and have asked her to call me “Darcy” many times instead. When she calls she still identifies herself as Mrs. So-and-so.  She makes it clear that we are not close, but maybe we’re closer to being on the same team.  She calls me this time because it’s Field Day, and the kids have the opportunity to buy ice cream, but Wendy doesn’t have any money.  She’s calling to ask me if it’s ok if she (the nurse) buys this special treat for her.

In that moment, I know that she’s looking out for Wendy, wants her to be a normal happy kid, but our relationship as parent and provider won’t get much warmer over the next two years.

And so, we begin again.

 

 

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.

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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.