Holiday Landmines for Kids with Dietary Needs

Happy Springtime!  Well, it doesn’t feel like springtime quite yet for much of the country, but the calendar tells us that the Spring Equinox has already  happened and Passover and Easter are just around the corner.

This can strike fear in the hearts of a lot of parents, especially parents of kids who have allergies or other dietary restrictions.  The reason is because a lot of spring holidays have ritual foods that go along with them, foods that are supposed to be used to celebrate the holiday, either through religious decree or family tradition.

A good friend of mine found out that her daughter has egg allergies. How do you celebrate Passover without eggs?  Its one of the parts of the traditional plate, and it’s the key ingredient for many traditional dishes like Matzoh Brei and Kugel.  It was just inconceivable that they would have to go without eggs during the eight day holiday, where they can’t eat any leavening either. They decided to continue using eggs, but to minimize the use.

There’s no doubt, sometimes you need to get creative if you have a child with dietary restrictions, and this creativity can be seen as assertiveness, not always in a positive way.  Traditions are hard to break.

This might lead to a few family misunderstandings, so thoughtful communication and patience is necessary.  One friend told me of her child’s tree nut allergy and how a lot of Passover recipes have tree nuts in them, so they need to be careful not only looking at the labels, but also informing friends and loved ones to be diligent in their preparations for Passover.  She also finds that she needs to ask on the day of the family gathering to make sure all the rules were followed.  Not everyone loves to be reminded.  Sometimes that means your mother in law might tell you how much better the dish *would have been* if the nuts had been added.  Another friend has a child with celiac disease, so they don’t have Matzoh with wheat in it, and if someone brings Matzoh with wheat, they need to eat it outside.

When it comes to Easter, if your child has allergies, you have to get creative with holiday traditions as well.   A lot of the times that means making new ones with ties to the past.  One friend in Vermont told the story of how she has tried to recreate her mom’s cinnamon rolls using her dietary restrictions.  One friend told of how they make their own food and their own traditions around allergies.  One family only has easter egg hunts at their house because they need to know that peanut free chocolate never touched the inside of a plastic egg.

Here’s a great resource for kids with allergies and Easter Products they might enjoy.

For parents of diabetic kids, you realize quickly after diagnosis, that every holiday revolves around food, and that since all food has a certain number of carbs, you need to keep track. This leads to some awkward encounters…who really wants to count the number of jelly beans for one serving?  Did the child eat one ounce of the chocolate bunny’s head or one-and-a-half ounces?  Do you weigh the bunny before and after?

Suffice to say, the holidays can be stressful. But it’s important to take a moment and be grateful for the things you have:  children who are happy, family who loves you , food to eat, a warm house, and laughter.  The rest are hurdles to be jumped, and stress that comes along with it can be managed. Just remember, parents of Brave Fragile Warriors, you’re brave too.

Whatever spring holiday you celebrate, I wish you the best of health and  happiness!

Where Unicorns Run Free

My cell phone rang one hot August evening, it was a friend from college.  He and I often text, but hardly ever speak on the phone. I could tell almost immediately that something was wrong.  It didn’t take him long to get to the point.

“Charlotte has been diagnosed with Type 1 Diabetes,” he said, and then “I thought maybe we should talk to you about it.”

We have been friends for twenty years.   He and Michael never lived more than two doors away from each other the entire four years of college.  One summer, the four of us all lived in the same apartment, working random landscaping jobs for extra money.  We had shared laughs and beers, practical jokes and serious moments, accidents and deaths and then marriages and births.  When Wendy was in the hospital, Charlotte’s mom was pregnant with her and she never came, but Charlotte’s dad came and mustered other friends to help.  He brought books and jokes.  He sometimes just sat with us when it was all too terrible for words.  That was ten years ago.

We are still present in each other’s lives.  Michael and Charlotte’s dad go out for an occasional beer after work.  Our kids just recently were in a film together to promote the National Park Service.  When I was approached about looking for kids who would be willing to tromp around Minute Man National Park with tri-corner hats and wooden muskets, I could not think of a more perfect family to share this adventure with.  The kids learned about the Revolutionary War, and the adults got two whole days to sit around together.

Once a year, all of the adults (including other college friends) go out for a giant fondue dinner, three courses, lots of wine, more jokes and more laughter.  This year, due to unforeseen circumstances, I had to cancel at the last minute, and these friends made a “Pocket Darcy”:  a picture of me pasted on a Popsicle stick, to be a part of all of the pictures so I would still feel loved and a part of the night, even though I was reading 300 names at a college commencement that had been rescheduled.

When Charlotte was diagnosed, her parents had an idea that something was wrong, she wasn’t acting like herself on their summer vacation.  But she was diagnosed just a few days before school was about to begin, and so they were thrown into a whole new world of counting carbs, and blood sugar checks and two am wake ups to check it again.  They had to trust the nurse with something they had only just began to tackle themselves.  They were nervous.  They called a few times, and we tried to be supportive.  Michael strictly instructed me to be a good listener, not to give out too much advice.  When I told Charlotte’s dad this he responded, “No, I don’t care how much advice you give, I just want to hear your voice and tell me it’s going to be ok.”  So that’s what I told him.

And it was the truth.  Sort of.

The truth is that when your daughter gets diagnosed with diabetes, your world changes. There’s a lot more structure built into every day, . There are a lot more plans that need to be made about birthday parties and sleep-overs.  There is more worry, there’s no way to sugar coat that.  It’s manageable, but it’s lots of worry.

Charlotte’s mom would occasionally email me for advice, and at some point she asked if Charlotte and Wendy could get together, and I suggested Wacky Weekend at The Clara Barton Center for Diabetic Girls.  I’ve written about the camp before, it’s Wendy’s favorite place, and I thought that Charlotte would love to try it out for a weekend, with just some time alone with Wendy. Oh, and with dozens of other kids who have diabetes too.

Charlotte was SUPER EXCITED ABOUT IT!!!!

Her mom and dad were nervous.  She was only ten; she had never been to sleepaway camp before.  They asked me if I would be the emergency contact for the forms.  Then we decided that maybe Charlotte’s parents should just spend the weekend with us.  Their younger child and our daughter Penny could soak up all of our attention, while Wendy and Charlotte enjoyed camp.

It was a win-win.  We dropped off the girls and then took the younger kids to museums and National Parks.  We had card games and sleepovers at our house.  But throughout the weekend, understandably, Charlotte’s parents were nervous that she would be unhappy. They were nervous that the nurses wouldn’t be used to her.  They were nervous that Charlotte would be homesick, or wouldn’t like the camp, or she and Wendy wouldn’t get along as roommates in a cabin.

All of these worries, while understandable, turned out to be unfounded.

Sunday afternoon, when we all arrived at camp to pick up the girls, Charlotte came running up to her camp, hugged them both, told them how much she loved the whole place, and gave them a tour.  She told them she really wanted to go there for the summer camp program.  She read them her journal that she wrote a few times a day about all the fun she was having, even though she missed her parents.

They cried.  Out of joy and relief.

And I had to walk outside and dry a few tears of my own. Who would have thought that this would be something that we shared too.  Our daughters with the same condition, going to the same camp, twenty years later.

I walked to the fire pit in the center of the camp, where bricks have names and inscriptions written in them along the walkway and around the ring of stones.  Written among the bricks is a poem by Shel Silverstein:

This Bridge

This bridge will only take you halfway there

To those mysterious lands you long to see;

Through gypsey camps and swirling Arab fairs

And moonlit walks where unicorns run free.

So come and walk awhile with me and share

The twisting trails and wondrous worlds I’ve known

But this bridge will only take you halfway there–

The last few steps you’ll have to take alone.  

Our girls would have a whole history without their parents, but with each other, at camp.  They wouldn’t be alone.   They would always have someone who understood what they were going through.

So would their parents.

There was something sweet in knowing that.

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.

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.

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.

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.

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.

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.

Being A Kid Without Explanations

This is the week we begin to pack for sleepaway camp.

Let me tell you, when we first started doing this whole sleepaway camp thing, I was terrified.  First of all, I had never been to sleepaway camp.  My family and I lived at the Jersey Shore, and both of my parents were teachers with the summers off.  So neither of them ever felt the need to send me away, nor did they have the money to do so.

After Wendy had been diagnosed with type 1 diabetes, I did a lot of reading about how to be a supportive parent, and one of the suggestions was to send your child away to a diabetes camp.   As luck would have it, the one camp the book mentioned was in New England, called the Barton Center for Diabetic Girls.  We decided to give it a try.

The Barton Center is a unique place.  It is named after Clara Barton, because her birthplace is on the site of the camp.  You may remember that she was the founder of the American Red Cross.  It’s a camp exclusively for diabetic girls, ages 6-16.  Wendy naturally wanted to go as soon as she was old enough at 6 years old.  At the time, she had been a diabetic for roughly three years and had her kidney transplant about a year prior.

As you can imagine, I was super nervous.  We had never had the opportunity to be away from Wendy since her illness because there were a lot of medications to be taken, as well as monitor her insulin needs.  One of the features of the camp, though, is that there is a doctor on site and a nurse in every cabin, to administer medication both by mouth and with injections.  Knowing that Wendy was going to have that kind of monitoring made me feel a little better.

She was going to go away for the “short program”, which was only five nights.  It’s meant to ease girls into camp without too much worry about homesickness.  Five nights felt like an eternity to me.  What in the world was I going to do with myself?

Packing for camp is its own sub-special category.  Finding clothes for five days that you don’t care what condition they return in, ripped or stained, or better yet, lost.  Sandals, shower shoes, sneakers, a caddy for toiletries, sunblock and bug spray to round out the list.  Oh, and a flashlight, and extra batteries.  All of these things dutifully labelled so that the chances are better that you might get them back.  Ha.

We drove Wendy the four hours from our house in Vermont to camp.  She was excited and nervous.  I was nervous.  We got to camp and had to wait in line to see the nurse.  I had all of Wendy’s medications, i had filled out all of her paperwork, I had signed all the releases.  We had a cold pack for the liquids, a ziploc bag for the pills.  It took twenty minutes to go through everything, and while I did, Michael took Wendy to her bunk to make her bed and place her Teddy.

The time had come, time for us to leave.  Leave my little girl that had gone through so much, that I woke up every morning at 2 am to check her blood sugar, that I had spent every day fixing her meals, counting her carbs, giving her the right medications before and after her meals.  I was handing her off to smiling teenagers and a nurse.  I thought I might just die on the way home.  Wendy was very brave, she said her goodbyes, and went in the cabin, but before we got a few steps, she ran out and gave another hug and another kiss just to be sure.  She had tears in her eyes.  i had tears in my eyes.  Michael did too.

Then we left.

Ok, now it’s time to tell you the first thing we did when we got home.  Michael and I ate ice cream sundaes for dinner.  Mint chocolate chip ice cream, m-n-ms, hot fudge, whipped cream, and a cherry.  Something we could never do with a diabetic daughter.  We also went away for a night to the North Shore of Massachusetts.  We walked around Salem, famous for its witch trials, and popped into book shops and candy shops and read when we wanted to, ate when we wanted to, relaxed with no schedule of medicines or insulin.  We re-set, we relaxed, we re-energized.  Five days later, we were ready to get her.

I was so excited to go get Wendy from Campj I didn’t sleep the night before.  I had missed her, and I was ready to see her.  When we arrived, she was weeping, WEEPING, huge tears coming down her face, and I thought, “Oh My God, what have we done?”  We had made a mistake, she was too young, we should have waited.

Nope.

She was weeping because she didn’t want to leave.

Finally she had found a place where she didn’t have to explain blood sugars and insulin, or be different.  Everyone was like her.  Everyone checked at the same time, everyone got insulin at the same time, everyone knew the deal.  Wendy was one of many, even if she was the youngest one.  And they laugh, and sing, and make crafts, and play silly games, and go horseback riding, and have “hands free dinner” and are just kids without explanations. She had never been so happy since her illness began.  She begged us to let us stay longer, but it wasn’t possible that year.  The next year she went for two weeks, and has continued to do so for the many years after.

If I were to ask her where her favorite place on earth is, she would say camp.

So this week, I again lay out the dozen pairs of underwear, the dozen pairs of socks, the toiletries, the sandals, the sneakers, the flashlight with batteries, the bug spray.  Teddy still goes too.  And I miss her, I MISS HER.  Every day of those two weeks.  But I know that it’s good for her, it’s good for both of us, to have this experience.

(And Michael and I still have hot fudge sundaes for dinner on the first night she’s away.)

Only As Strong as the Weakest Link

I have a twelve year old.  She is chronically ill.  But she’s still twelve, and what I’m about to write is all “developmentally appropriate” but man, it burns me.

For the past couple of weeks, her blood sugars have been erratic.  I had been adjusting, modifying her basal rate, her insulin to carb ratio.  Wondering, is she growing?  Is she getting sick?  What am I missing?

The endocrinologist was perplexed too.  Blood sugar was rising at an unusual time.   Between dinner and midnight.  She asked me, “Is she having late night snacks?”

My answer was no.  But my answer was wrong.

Wendy was having unauthorized snacks after Michael and I went to bed.

I had noticed that some of the food had gone missing, bags of rice cakes, chips, pretzels, but I thought Michael was working late, we’ve had guests, maybe I’d miscounted.  I’d noticed that we were going through more fruit snacks than usual, which we use to raise Wendy’s bloods sugar.  But maybe they were tucked away in bags, for sports or the beach, or whatever.

Nope.

It dawned on  me at 2 am this morning.  2 am is when we check Wendy’s blood sugar every night.  The last few weeks, between her bedtime and our bedtime,  she’d come downstairs a few times, ostensibly to get the cat, or check her sugar, or say hello.  It seemed a little odd, but it was summer vacation, we thought it was just a new schedule, no big deal.

So as we were going to bed last night, she had checked her sugar, and it was 115.

When we checked it at 2 am, it was HIGH, which means it’s so high that the meter can’t read it.

Which means it was over 500.

So, from 115 to over 500 in four  hours……hmmm…..fishy.

I asked Michael if I could see the continuous glucose monitor…..And sure enough, right at the time Michael and I went to bed, her blood sugar skyrocketed.  It was clear, she was sneaking food.

The question then became how to address it.

Here’s what I did.  I took her garbage can and brought it downstairs. Then after she woke up, I went into her room and looked under her bed, behind her bed, in her desk drawers, and pulled out a ridiculous amount of bags and wrappers:

I laid them all out in front of Wendy, and I asked her what she thought I would say.  Her answers were right:

I wanted to know what she was thinking.

I wanted to know why she did it.

I was going to punish her.

Here’s the part she didn’t know.  The part I told her.  I decided that today was the day to tell her the complications of long term diabetes.  The blindness. The amputation.  The difficulty in wound healing.  I decided to tell her all of the things I feared might happen to her when she was older.  The reason why her father and I were on top of her sugars all of the time, that these were cumulative effects.  That carelessness now would result in pain later.  That her father and I felt a terrific responsibility to keep her as healthy as possible now so that she could be a healthy 90 year old with great-grandkids.

I told her that we’ve always told her that we are a team, and that I wasn’t angry (I’m really not), but I am terribly disappointed, because she let the team down.

We are only as strong as our weakest link, and today she was the weakest link.

To her credit, she accepted her punishment, being grounded and no electronics for a week. She apologized.  She understood.  She also knows, I think, that it’s going to take time to repair the trust that was broken, but it’s not an impossible task. She’s a good kid, she’s got a lot of health problems, and she’s testing her boundaries.  I TOTALLY GET IT.  That doesn’t mean it’s not hard for me because it kills me.

I want to protect her from everything, even herself.

I read her this post, before I published.

 

 

 

Don’t Count the Days

“Don’t Count The Days, Make the Days Count.”  This is a quote by the late, great Mohammad Ali.  There were a lot of amazing quotes by him, all dragged out this weekend when it was learned that he had passed away.  One of my favorites, though, was the “Don’t count the days” quote.

As you know by now if you’ve followed this blog, I’ve got a chronically ill kid, who has gone through various stages of wellness.  When we were waiting for a kidney transplant, we decided to move closer to the hospital.  Wendy was on five different blood pressure medications and a medication for her heart.  Besides that she had medications to help her kidney function, and of course, she was a diabetic.  So, in a nutshell, she took fourteen different medications in a day, by different routes (patches, oral medication and injections), in different combinations, about every two hours, around the clock.

She was four years old.

You can imagine my shock, dismay, and utter fear when she decided that she wanted to play soccer.

We didn’t know if we could do it.  Could we manage  the medical part and keep her safe while letting her play soccer?  Was it even possible?  Could we emotionally handle it, knowing that her body was already going through a ton of modifications just to keep living like a normal kid?

It would be so much easier for everyone if she didn’t want to do it.  But she wanted to play, she wanted to play BADLY, and we wanted to make it happen for her.

We spoke to her doctors and their answer was:  If she wants to, let her do it. Her body will tell her when she’s had enough.

So we did, with some guidelines in place.  She could play sports that weren’t a ton of contact…..so ice hockey, or football, or even gymnastics were out.  Of course we had her insulin and sugar at the ready.  We also had a glucagon with us, which is an injection in case she passed out. We had snacks.  We packed up her medications and gave them to her at her normal times.  We filled out the waiver with all of her medical history.  We agreed that one of us would always be at every practice, every game, every time.

We held our breath, and we let her go.  And, the child has NEVER looked back.  Here she is, three months from a kidney transplant, playing soccer:

 

She got her kidney transplant.  The next year,we found out that she was fast.  In fact, she won first place for her age group for the mile run the first time she ran:

Which eventually led to the swim coach asking her if she wanted to swim competitively, and guess what? She did.  Guess what else?  She was good at that too.  Here she is with her continuous glucose monitor on her arm at the suburban championship, where she placed first for the backstroke:

Oh, and did I mention that my kidney transplant recipient, diabetic child decided that she wanted to do triathlons?  Yep.  She won those too:

The point was, and still is, that these things terrify me.  Truly.  But Michael and I have never put limits on what she can do.  If she wants to do it, if she wants to try it, we are there as a team to support her.  And she has shown us, over and over, that she is a tough competitor who has this inner drive to succeed.

And we are there, every practice, every game, every time.

It’s a huge amount of support.  Wendy isn’t a drop and go kid, I can’t run errands or go to the supermarket while she is playing.  I have to be there.  And when she goes down, when there’s a problem, I totally want to rush on that field and take care of her.  But I take a breath and I let the coach handle it, and if the coach calls for one of us, we go over.  We do not keep Wendy like a china doll, because that’s never what she wanted to be.  She is making the days count.  We are making them count with her.

And I have to say, that Wendy has set a good example for our younger daughter, who also plays soccer and races in triathlons, who also is tough as nails and who wants to be just like her big sister.

I’ve been reflecting on this because this week we will be traveling with Wendy to the American Transplant games in Cleveland, Ohio.  This is our first venture into the national scene of competition for Wendy. It’s like the Olympics for transplant patients.  I want her to do well, but I’m also just so grateful to be going, to be a part of it, because it’s what Wendy wants to do. She is a competitor, she is a fighter.  She always has been.  And we will be there to support her.  I imagine that I will have a lot of reflections from the American Transplant games. This is just the first.

Don’t count the days, make the days count.

Photo at the top:  My girls after a kid’s triathlon, enjoying some ice cream.

 

 

 

Find Your Tribe

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

Find your Tribe.

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

The Magnitude of Small Choices

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

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

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

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

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

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

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

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

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

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

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

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

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

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

At least, that is the hope.