When to Divorce Your Doctor?

I was hot.

I was furious at Wendy’s endocrine practice.  This had been the third time in four years that I couldn’t get Wendy’s school orders without multiple phone calls that required phone trees and leaving messages on answering machines and waiting for someone to get back to me, multiple times. Every delay each year was for  a different reason:  wrong address, new medical management system, most schools start after Wendy’s school.  But I had had enough.

I decided that I needed to look elsewhere for another place for Wendy and for me.  This just wasn’t working for us.  This divorce has been a long time in coming, but like real marriages, there are positives and negatives to a medical relationship.    It’s when the bad outweighs the good, that you can safely feel like it’s time to walk away and join another practice.

But I didn’t want to do it just because I was angry, and it wasn’t because I had gotten bad news that I just couldn’t accept.  An important thing I learned is that in medical relationships, as in most relationships,  you can’t expect perfection, but you should expect to feel satisfied with the way you are being treated.  And I didn’t feel like we were being treated well.

Add to this the fact that Wendy’s actual endocrinologist was leaving for another opportunity, so we felt like if we were going to make a move, that now would be a good time, because we were going to have to meet and use a new doctor anyway, so we might want to consider going to another facility all together.

Luckily we had many other options, living in a city like Boston.  Not only do we have our hospital, but there are two other pediatric hospitals in the city.  Additionally, we have the Joslin Diabetes Clinic, the oldest and most prestigious medical center for diabetes in the world.  We had a lot of choices, and Michael and I really weighed them, because all of them were good options.

We decided to go with Joslin, because like Mass General Hospital, Wendy could transition from a pediatric patient to an adult patient within the same institution.  Also, since Joslin is a clinic and not an inpatient facility, Wendy’s hospital home would still be Mass General (as she would still see nephrology there.)  Finally, with Joslin there was an opportunity to possibly be part of new and interesting clinical trials that used a large sample size available to Joslin.  Taken all together, it was worth a try.

To be clear, we did not go down in a blaze of glory, when we left the endocrine practice, we just called Wendy’s primary care doc and stated that since Wendy’s doctor was leaving that we’d like a referral for a new doctor at a new clinic.  We made the appointment at Joslin with a new endocrinologist, a new Nurse Practitioner, and a dietician.  We were told to expect to be there all day and to bring Wendy’s records.

The night before the appointment, I was really nervous, because it was the first time in a long time that we were dealing with new doctors in a new place.  I may have punched the printer in the morning using colorful vocabulary because it wouldn’t print Wendy’s labs from the patient gateway.

Ok, I may have punched it twice.

And the drive there was awful, it’s in a super-congested part of the city, there’s no good way to get there.  I thought to myself, “This better be amazing, because to drive here four times a year is really going to suck.”  Parking was just as bad, and there ‘s no coffee shop, no food of any kind in the building.

But the nurse practitioner was great.  She was patient and she answered all of our questions.  Wendy liked her right away.  She looked at Wendy’s numbers and made a few small changes, and then gave us all of her information as to how we could get a hold of her personally, not through multiple phone trees and receptionists and answering machines.

Wendy said that she felt like she knew this nurse practitioner more in the fifteen minutes we spoke to her than in the many years she knew the endocrine nurses at Mass General.  She also admitted, later, that she might have felt better about the new nurse because she wasn’t super sick when she met her, and because we already knew about diabetes.  Both observations were astute especially for a teenager.

When we met the doctor, who had been a fellow at Mass General, she complimented Wendy on her video for the Emergency Department, because she had been at the Grand Rounds where Wendy spoke about it, and she remembered to say something to her about it.  This had an instant effect on Wendy.  It was a great way to build rapport.

We broke for lunch and walked around the corner for sandwiches, and Wendy was excited to go to a new place to eat. When we go to Mass General, we often go to the same restaurants, as if in a rut.  Partially it’s because it’s easy and it’s comfortable. But Wendy really liked trying somewhere new and said so.

We arrived back to the clinic in time to meet the dietician.  Wendy really liked what she had to say. They went over her daily intake, each meal, each serving.  She helped Wendy come up with a plan to eat a little more calcium, a little more protein, which involved a cup of high protein chocolate milk with dinner.  Wendy was thrilled.  I gave in to the pressure and we now have it in our fridge.  It’s a little treat that makes Wendy feel like she’s in more control of her life.  Oh, and it’s chocolate.  At dinner.

After we got home, and after dinner, we all sat down together to debrief the day and figure out if we really wanted to make the change.   We decided we did.  Wendy liked the staff and felt heard.  I felt like Wendy was getting positive messages from adults that weren’t just me and her dad about her diabetes.  I also liked that Wendy was taking a little more control of her health, even if it included extra protein chocolate milk.

I called the old endocrine practice and cancelled our next appointment.  I just said we have decided to go with Joslin instead since Wendy’s doctor is leaving.  I need to decide if I’m going to write a letter to them explaining that we just didn’t feel like we  were getting the attention we needed with hard to attain answers to questions, no meetings with dieticians, and no real transition as Wendy got older.  I need to figure out the right tone, because we were grateful for the care we got when Wendy was younger, it just didn’t feel like we were being supported as she was entering her teenage years.

I’m still thinking about that part.

Divorcing your doctor is hard because you’ve built a relationship and sometimes it’s all you know.  But if you don’t feel like you’re being heard or taken care of, it’s worth it to look elsewhere.  You already know what you have, you don’t know what is possible.  So go find out, gather your data, and make a decision.

I wish you luck, whatever you decide.  It’s not easy.

It’s harder, I think, when it’s your kid, because you want to do the best by them, even when you’re not exactly sure what the best thing is.  Hopefully,  you can decide together.

 

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Please Ask Me About My Bikini

This summer, I will be wearing a bikini.  Not because I lost a lot of weight.

I haven’t.

Not because I have a burning desire to wear a bikini again.

I don’t.

The reason is because I have two daughters, and I want to show them that bikinis are ok, no matter who wears them.  Short, tall, skinny, fat, no matter the skin tone or the cellulite.

Let me tell you how hard this is for me.  I haven’t worn a bikini since I was in high school.  I’m not a small woman.  I don’t especially like to be looked at, especially when I’m in a bathing suit.   I couldn’t find a single picture of myself in a bathing suit, even though I lived across the street from the ocean for all of my childhood and went to the beach almost every single day.

Like most women,  I am very conscious of my weight, and am a product of a lifetime assault by the media about what my body should be.  I was on my first diet when I was in the third grade.  I read all those teen magazines trying to determine my shape and size.  I’m a pear, by the way.  I went through the low fat phase, I’ve joined Weight Watchers and LA Weight Loss.  Until this last house purchase, I didn’t own a full length mirror because I never especially liked what I saw, so I chose not to look.  Like our President who gives women a number, I graded myself with letters.  I was an A-B-C:  A intellect, B face, C body.

My parents have also always been on a perpetual diet, trying to lose weight for the next event:  reunions or cruises or the next beach season. My mother went through the slim fast phase, the cabbage soup diet, the grapefruit diet, the magical drops diet.  You name it.  They also were especially helpful monitoring my diet as a kid, limiting my portions, especially of sweets.

Since I’ve had daughters, I have tried mightily to not transfer my weight issues to my girls.  Our goal as a family is to eat healthy foods, make good choices, and stay active.  I’ve been in road races and triathlons.  I swim at least once a week.  The girls are active in team sports and individual competitions.  We don’t have women’s magazine in the house.  We don’t even have a scale in the house because I didn’t want the girls to see me worry about my weight.

So it came as a surprise to me when my daughter, Wendy, didn’t want to wear a bikini.  She’s thirteen, very active, and pretty self assured.  She also swims competitively.  The thing is, that a bikini would be so much easier for her because she has two medical devices on her body because of her diabetes:  an insulin pump called an OmniPod and a continuous glucose monitor.  A one piece bathingsuit is harder to get on and off and has a much better chance of knocking off the devices, causing lots of trouble (our insurance only covers so many applications per month).

Because she’s thirteen, I thought maybe it was a body image thing, as in, she’s got all these new curves now, so maybe she’s not exactly sure what to do about them.  So I talked to her about it, saying I really wanted her to try a bikini, that I’m sure we could find one she was comfortable in.

She replied no, over and over again.  It turns out that she doesn’t want people to see her scars.

Wendy has a constellation of scars on her abdomen.   The right hand side is from some intestinal surgeries.  The left hand side is from her kidney transplant, and the star shaped scar on the top is from a peritoneal dialysis catheter.  The truth is, you don’t really notice them, at least I don’t.  They’re not ugly or red or jagged.  When she’s examined by surgical residents at the hospital, they look at them in wonder, like they’re kids looking at the window of a candy store.  Those scars, to me, show me that she is a warrior, and they’re something to be proud of.

But she was afraid that people would see them and ask her about them, and she would be forced to give her whole medical history at the pool or the beach.  I get it:  that’s a lot for a thirteen year old.

So we made a deal.  If she was willing to try on some bikinis, and found one she liked, that I would wear a bikini too.  I told her, “Don’t worry kid, If I’m wearing a bikini next to you, nobody is going to be looking at your scars.”

Well guess what? She didn’t just find one bikini she liked, she found two.

So…I’m not going to lie…..I panicked a little.

I am ashamed to admit that my first instinct was to go on some radical diet, but what exactly would that showcase to my daughters?  That only perfect bodies wear bikinis?  Wrong.

I told some of my best friends, who had a myriad of reactions. Some sent me suggestions that were over the top, ridiculous.  Star Wars themed, gold mesh, or string bikinis that  were smaller than a tissue. I wouldn’t be able to blow my nose on a triangle that small.  Some friends asked me if I could take it back, go back on my word, or wear a tankini.  That  would reduce Wendy’s trust in me, so I couldn’t do that.  Some friends shared their own insecurities or their negative body image.  Some friends applauded me.

Buying a bikini wasn’t the easiest thing in the world, but I found a lovely size 12 black bikini with white polka dots.  I bought a lovely cover up to go with it.  I’ve got a hat.

One thing is certain:  I’m going to need a lot more sunblock.

I’m not going to say that I’m going to love every minute  of wearing this bikini in public.  But I am going to “fake it until I make it” with confidence.  That is the very least I can do for my daughters.

I want them to know that their bodies are beautiful and powerful and theirs alone to love.

So this summer, if you see me, and I’m in my bikini, please ask me about it.

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.

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.)

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.

 

 

Sometimes You’re Not Ready

Sometimes you’re not ready to hear the bad news.

Bad news:  the news the doctors need to tell you, the diagnosis, the prognosis, the estimations, the best guesses.  Sometimes, even if you want to be, emotionally you’re just not there yet.

When Wendy was struck with her initial illness,  the doctors didn’t have a lot of positive things to say.  She was incredibly sick, and if she survived, there would be a lot of lingering health problems to contend with.  I could tell just by the looks on their faces during morning rounds that things were not going well.  Many years later, the division chair of Infectious Disease told me, “I dreaded coming into your room every day, because I never had any good news for you.”

They did their best to deliver the bad news to us slowly, and sometimes we were receptive to it, and sometimes we weren’t.  It is hard to hear from anyone that your world has been completely altered and some doctors are better at delivering bad news than others.

I remember one of the first doctors who came in to deliver bad news.  It turns out that Wendy’s pancreas was pretty much destroyed, making her an insulin dependent diabetic.  Unfortunately, that is  how the doctor opened the conversation, over Wendy’s hospital bed, in the Pediatric Intensive Care Unit.  She looked at me and said, “Don’t worry, some day in the future Wendy will come to you and want a cupcake, and you’ll know that it’s so many carbs, and you’ll give her the insulin.”

And I remember thinking,  in that moment, that she was absolutely crazy.  I would never, NEVER, be that ok with giving my daughter insulin.  I thought that she might as well be telling me that I’d never notice that hook she now has for a hand and she will eventually learn how to tie her shoe. (Just an example, Wendy’s hands are fine.)  I remember thinking that it was all too overwhelming to bear.  Blood sugar checks eight times a day?  Shots?  Carb counting?  Seriously, What the Hell?  How could this doctor be so callous in her delivery?  Didn’t she have a heart?

A few years later, when Wendy was in kindergarten, a student brought in cupcakes, and the nurse called me.  I approved the cupcake, instructed the nurse to give her insulin for sixty carbs, and hung up the phone, no problem.

Instantly I remembered that day in the hospital.

Damn. That doctor was right.  I just wasn’t ready to hear it.

While Wendy was initially in the hospital, other days were harder.  The day the doctors took us into the conference room to break the bad news about Wendy’s long term condition.  The charts we had to look at, the medicines we would be expected to give.  I remember crying so much that there was no point in trying to stop the tears with a tissue, they just silently ran down my face.  The doctors looked at me with pity and said, “We can do this another time,”  and I replied, “I’ll cry like this then too, let’s just get it over with.”

I later learned that the doctors call that particular conference room the “Room of Doom.”

Then the  the doctors told us that Wendy would need a kidney transplant.  Almost every doctor in the practice told us at different times.  The first doctor told me early on, in the parking lot, in passing.  I hoped he was joking.  Two others told us while Wendy was in the hospital.  One told us in the outpatient clinic.  It wasn’t a sit down intervention style of news breaking like in the “room of doom”, it was just giving an idea of what was coming up in the near future. No tears those times, because the news seemed so abstract.

I remember meeting with another mom whose daughter had a kidney transplant, who told me that I’d likely have to quit my job permanently to take care of all of the details of Wendy’s illness, and the tears came back in a flash. Nothing was going to be the same again.  There was no pretending that it would be like it used to be, I was the mom of a chronically ill kid and all the rules had changed.  It’s fear of the unknown combined with the crushing knowledge of what you ALREADY know that makes it so hard to bear.

Sometimes the messenger IS the problem, like the doctor who tells you bad news like ripping off a band-aid.  It stings and you wonder if they couldn’t have been just a tiny bit more gentle. An ophthalmologist once  told me that it didn’t matter how well we controlled Wendy’s blood sugar, that she would probably go blind eventually anyway.  That could have been more tactful. I still wonder why she said it that way. Some people don’t think about the consequences of their words on a patient or her parents.

Even if the doctors do the best they can to tell you, even if they explain it clearly, even if what they says makes sense.  Sometimes you’re just not ready.

But you will be.

With time. With Healing.  With understanding.  With education.    With support.  With love.

Be gentle with yourself and this journey.

You will be ready to hear the bad news, and move forward.