Thursday, May 30, 2013


This afternoon I watched an interview with Dick Hoyt and his son, Rick.  This father and son have run marathons and triathlons together for over 35 years.  Which sounds impressive enough, but what makes their story even more impressive is that Rick has cerebral palsy.  They told a moving story about a father's love. The interview ended with the son speaking through a computer and telling the audience to never give up hope because you can do anything you want to do.

Since Ben was diagnosed almost 4 years ago we have heard this advice often (like really often).  And so far we have never told Ben he couldn't do anything because of his diabetes.  There have been moments when I have thought about it.  There have been times when it would have just been simpler to say “No”, but my heart has never allowed me to take the easy way out.

But today when I heard that advice again my heart hurt.  Because today it became clear that maybe sometimes it is just not true.  Sometimes there really are things that Ben just cannot do.  Today Jeff and I are faced with the fact we are going to have to tell Ben “No”.  Not and ordinary “No”.  Not a “No, you cannot stay up until midnight.” But a “No you cannot go to the summer camp you have had your heart set on for 4 years because you have Type 1 diabetes.”

Both Jeff and I work full time so the boys have spent their summers attending day camps.  Ben has attended all the same camps as his brothers.  They have split their summer weeks between a sports camp and a traditional day camp.  Both of these camps have a nurse on staff that has helped take care of Ben.  Now the traditional camp offers different activities for the older kids and one of the options is what they call day trippers.  The day trippers week is a week filled with field trips.  One day they go to the beach, another day to an amusement park and another into Boston for a tour of Fenway Park.  This is his older brothers’ favorite week and Ben has anxiously been waiting to be old enough to go with them.  This year Ben finally is.

Jeff met with the camp director this week to discuss how we can help Ben be able to join his brothers on day trippers.  Sadly, the conversation ended with a simple Ben cannot go.  The camp does not provide a nurse for this trip and without one they will not allow him to go.  Ugh ... Sigh

Then this evening, after I was done with work, I raced to pick up Ben's brothers and get them to their baseball games.  First I dropped off Cole.  But before I could drop off Garren we had to stop for gas.  We stopped at the full service gas station (of course) and while the gas attendant pumped the gas we sat quietly in the car.  All I could think about was, “How can we tell Ben about camp?”  Soon Garren interrupted the silence and asked, "Why are you so sad." First I swore him to secrecy and then explained Ben was not going to be able to go on day trippers with him this summer.  He then asked, "Why?" I replied with the simple answer, "Because he has diabetes and there will be no one on the trip to help him." Garren looked puzzled and ask, “You know last year we had a counselor on day trippers that had Type 1 diabetes.  Maybe she could help Ben?”

A spark of hope! Maybe (just maybe) this story doesn’t have to end with a “No” …

Tuesday, May 21, 2013

Fundraising ... and a Heart-Felt Thank You

A couple months ago the boys and I were at church attending our family "Sunday school." At our church on Sunday evenings everyone in the family attends religious education.  We have dinner together and then everyone is split up into age appropriate sessions.  This evening the middle school groups were presented a "pay it forward" challenge.  They were given $100 and asked to use that money to make more money and then donate their profits to a charity of their choosing.

On the way home in the car I asked the boys how their evening went.  They responded with a few quick grunts of OK.  Being the curious (or nosey) person I am I was unsatisfied with a grunt so I asked Garren, "Which charity did your group chose?" Garren proudly stated, "We chose JDRF." Ben smiled and gave him a high five.  Garren then continued explaining how his group wanted to raffle off gift baskets. 

Once the car was quiet again, Cole said, "Our group chose the American Cancer Society.  I never suggested JDRF because I didn't want anyone to feel sorry for us." Using the rear-view mirror to look at Cole in the back seat I assured him, "I totally understand.  I get it.  I often feel the same way."

I did totally get it.  Sometimes everything seems so much clearer through the eyes of a child.  Every year since Ben was diagnosed with T1, almost 4 years ago, our family along with some super-duper supportive friends has participated in the Cohasset Triathlon to raise money for JDRF.  And even though we have successfully raised almost $50,000, every year I end up saying the same thing, "I am never doing this again."

I never understood why after receiving so much loving support I would always end up in the same place.  But now through Cole's eyes I can see so much clearer.  No matter how much we struggle raising Ben and managing his diabetes, our life is good and Ben is great.  When it comes time to ask our family and friends for their time and money I feel like we are being whiney and selfish.  And maybe there is a little pride mixed in too.  And like Cole suggested, I don't want people feeling sorry for us, because we are OK.

This past weekend was our third Team Ben fundraising event.  And as is always the case, I spent the last couple months agonizing over the planning.  This year I was convinced this would be it, our last year!  We asked our dear friend John Fitzsimmons if he would be willing to bring his band and play some music for us.  He generously agreed.  We then found a local pizza/bbq place that was willing to set up a tent to accommodate us.

Saturday night, along with my mother-in-law, I arrived and hour early to setup and decorate the tent.  As we were working outside in the tent there was a 30th birthday party going on inside the restaurant.  While we were moving around tables and tying up balloons the event coordinator interrupted us.  She told me that she wanted to introduce me to someone, the mother from the 30th birthday party.  I was puzzled but I reached out my hand, introduced myself and said "Hello."

The mother looked at me and asked, "Is this a fundraiser for JDRF?" I, of course, said, "Yes it is." Then suddenly her eyes started to water and then she said, "My son had Type 1 diabetes." Now this woman looked fairly young and the fact that she said "had" did not go unnoticed.  After a few seconds of silence I asked, "Had Type 1?  What happened?" She then explained that her son had died in his 20s, not too many years ago because of a problem with his kidneys.  She quickly assured me that he did not die because of his diabetes. (Though I still wonder how true that is.  Diabetes often = kidney troubles. But I want to believe her, so I do.) She continued and explained that once she heard we were raising money for JDRF she was convinced her son was here too.  She felt his presence.  And with tears in her eyes, she thanked us for our hard work.  I didn't know what to say.  She was so moved that it was impossible to not be moved too.  She thanked me again and then returned to her party.

Soon my sisters and brother-in-law arrived to help.  As we were setting up the registration table my mother-in-law shared the story of the mother and her T1 son.  Then right as we finished the mother returned.  She handed us some money and told us, "Please take this money for JDRF.  Thank you for all your work.  And thank you for bringing my son." Seriously, this may sound corny, but even my brother-in-law was moved. As she walked away my brother-in-law asked, "Do we have anymore Team Ben t-shirts because she should have one?" We didn't. So my brother-in-law chased her down across the parking lot and took off the t-shirt I had just given him and he gave it to her.  I couldn't hear what they said but the conversation ended with a hug.

The rest of the evening was so much fun. The music was great (thanks again Fitzy!) The food was great.  And the weather was perfect!  The evening ran smoothly and we raised a nice amount of money.  And now, today, I am left with the question, will I do this again?  I don't need to make my decision until next December when we receive the email letting us know that registration is opening for the 2014 Cohasset triathlon.  But when I do, I hope I remember the mother who lost her T1 son; because she helped me realize that our fundraising efforts are not a selfish, whiney, "feel sorry for me" act.  We are not raising funds to cure Ben.  We are raising funds to cure all of our T1 friends (and there are so, so many of them!)

Sunday, May 12, 2013

My Honor

I am often teased that I love Ben the most.  I do admit that I worry about Ben the most.  And raising a child with diabetes is very overwhelming.  But I want to take a timeout from my T1 rantings and tell a story about my oldest son, who does not have diabetes (knock on wood) … (I actually just smacked my knuckles on my wooden kitchen table and it hurt a little bit.)  I want to tell a story about perseverance, about wanting something badly, and being willing to work for it.

The story starts seven years ago when my oldest son Garren was in 1st grade.  He had made some new friends at school and many of them played hockey.  Soon Garren asked Jeff and me if he could play hockey too.  He wanted to be on the same team as his new buddies.  Jeff explained that he couldn’t just join their hockey team he needed to learn to skate first.  We found a learn to skate program in a neighboring town and signed Garren up.

Now Garren was starting his hockey career a little late. (Hard to believe that starting in 1st grade is late, but it is.)  Garren had some catching up to do.  Garren spent the next 6 years working on his skating and hockey skills.  He didn’t always make the team that he had hoped for, but he never complained.  And he never quit.

Fast forward to this year, Garren’s last year playing town youth hockey, Garren made the A team and was finally playing with all his friends.  They had a good season, winning more games than losing, and they went into the playoffs feeling confident.

The team won their first two nail-biting playoff games and made it to the championship game.  As is usually the case, our family was split up among hockey rinks that day and I was the one driving Garren to this game.  And as usual, the car was quiet I was listening to NPR on the radio and Garren had his headphones on listening to whatever nonsense was on his itouch.

At one point during the ride, Garren took his headphones off, tapped my shoulder and he said, “Mom, I really, really want to win this game.”  I could see in his face that he really meant it.  I reminded him, “Remember the kids from the other team really, really want to win this game too.  You need to want to win it more.”  Garren nodded his head in agreement.  He then put his headphones back on and the only voices left were from the folks on NPR.

Once we arrived at the rink, Garren ran off to the locker room and I waited in my warm car for the game to start.  Eventually, bundled up in my “hockey mom” quilted parka I left the warm car to watch Garren’s last SMS Bantam hockey game, the championship game.

The game is fast and furious.  After the 1st period the game is tied 0 to 0.  After another 20 minutes the game remains tied at 0.  Well into the 3rd period there is still no score.  I start praying for Garren’s team to score soon.  I hate overtime.  And a shootout is even worse!  (I have no more nails left to bite.)  Miraculously, with a few minutes left in the game Garren’s teammate scores!  The game is now 1 to 0 with only a few minutes left to play.

The energy level of all the players is now crazy high.  Garren’s team fights the other team off.  Then a timeout is called.  When the players return to the ice there is exactly 1 minute left on the clock.  Garren is out on the ice for what will be his very last shift.  The puck is being dropped near the other team’s net.

Now I can’t remember every detail because it all happened so fast.  But after the puck was dropped Garren got hold of it.  He takes the puck and pins it against the boards behind the other team’s net.  Then he begins to play a game of “keep away” from 3 kids (big kids) from the other team.  Now these kids want the puck badly and they knock Garren, check him and cross check him.  Garren is getting a beating.  But he still has the puck.  I look at the clock 50 seconds left.  Garren gets smacked around some more, 45 seconds left.  I leap up in the stands and start cheering for Garren.

Then in one magical moment I felt my heart overflow.  I lost my breath.  I can no longer scream Garren’s name.  I am no longer watching my 14-year-old son play hockey.  Instead I see Garren.  I mean really “see” him.

I see a boy who is willing to take a beating for his friends.
I see a boy who is willing to give everything for his team.
I see a boy who is willing to stand up when his name is called.
I see a boy who will not quit.
And I see the man this boy will grow up to be.

Garren keeps the puck for a few more seconds.  My guess is that he had that puck for at least 20 seconds.  Soon his teammate (the boy he always wanted to play with) has joined Garren in his game of “keep away”.  Together they battle the 4 players from the other team while their 5th player waits at center ice for a long pass, covered carefully by Garren’s teammate.

With only seconds left on the clock the puck gets passed to another one of Garren’s teammates, who is waiting right in front of the net.  He scores with .5 second left on the clock but the clock ticks to 0. Game over.  Hockey gloves are thrown in the air.  The goalie skates toward the center of the ice and the boys pig pile on him.

I am so happy for Garren.  I am so proud.  But maybe proud is not the right word.  Proud implies I am taking some credit for Garren’s success.  But I can’t.  All I did was spend the last seven years whining about waking up early and spending late nights in cold hockey rinks.  He earned it all himself.  Instead I am honored.  I am honored that God gave me Garren and I have the privilege of calling him my son.

Wednesday, May 1, 2013

Step 5 ... Ask a Professional

After I finished posting about my diet experiment, I thought it might be wise (and I am wise) to ask a professional their opinion.  Luckily, my brother married a professional dietician.  I asked my sister-in-law, Sarah, what she thought of my experiment so far.  She definitely had her opinions, so I proposed she write a guest blog.  And she did!  I am sharing her thoughts here.  Thanks Sarah!  

Watching Dolores and Family Discover that What You Eat Matters…

Looking “outside the box” for solutions

I find that people look outside of the conventional medical system when they are in somewhat of a health crisis.   They feel that their health is not under control even though they are diligently going to the doctor and compliantly following instructions of the healthcare team.   They also have some sort of intuition that other sound alternatives are out there and start researching and asking more questions in order to improve their health and quality of life.

Dolores and Jeff have been working very hard to manage Ben’s T1 condition.   As is usually the case, they initially focused on insulin management and carbohydrate counting and were told that Ben could eat whatever he wanted.  Unfortunately, this is often the case in the conventional medical system (I am making a generalized statement here, but I’ve worked in the medical system, know the model and the low importance that is placed on nutrition therapy by the majority of practitioners). 

Even though there was little emphasis on nutrition therapy, one MD planted the seed in Dolores head that diet did matter for T1 management and she intuitively knew that it was the third leg of the stool. 

Thoughts on Dolores Diet Experiment

First email communication: I was thinking about emailing Dolores to ask her if she was interested in looking at diet to help manage Ben’s T1 when I received an email from her asking, “How many carbohydrates does a 10 year old need per day?”  I wasn’t sure what they had been taught and what, if anything, they were doing with diet.  So, I asked her “What percentage of calories from carbohydrates is Ben eating per day?” What had they been taught?  She didn’t know.  This is when I knew they were starting from scratch.  But I also thought… great, they understand that diet plays a role in managing this condition and they are interested in making changes. 

Second email communication:  The second email I received from Dolores was asking my opinion about the Whole30 diet.  She and Jeff were already 3 weeks into it and the kids diets were also changing because of the types of foods that were now in the house and being served at meal times.  She was feeling great.  

The Whole30 is a Paleo-based diet with emphasis on high protein and fat and low carbohydrate.   On the plus side they emphasize good quality proteins (organic, pastured raised poultry/eggs and grass-fed beef, wild caught-sustainable fish) and fats (organic coconut and extra virgin olive oils, avocados, nuts), lots of vegetables and fruits and the elimination of alcohol, sugar and processed foods.   

I don’t advocate any one “diet” as I don’t believe that there is a one-diet-fits-all protocol.  I think a Paleo-based diet, like the Whole30, has its merits (as above), but I have some concerns about it for the long term.   A high saturated fat intake from animal and processed meats can negatively affect metabolism and has been associated with chronic diseases like cancer and heart disease.   Saturated fat is OK, but in minimal quantities and from selected sources.   A high animal protein intake can promote an acidic body environment, which contributes to disease.   

The Whole 30 eliminates grains, legumes and dairy.  A short-term elimination of these foods is not a bad idea as some medical conditions can improve by eliminating certain foods or food groups.  However, if your body tolerates these foods, then why eliminate them?  There is a place for whole food-intact grains, legumes and some quality dairy in your diet if you tolerate them. 

Additionally, if you are eliminating entire food groups you need to think about the nutrients that you are eliminating and how you will replace them. For example, if you are not eating any dairy products then you need to make sure you are getting adequate calcium in some other way. 

Regardless, I thought this was a great start since they had moved to more of a whole, real food diet, had eliminated sugar and other refined carbohydrates, artificial ingredients and processed foods.  This was a BIG step forward in improving the whole family’s diet and health.   This also told me that she was really motivated and willing to make major dietary changes for the entire family.  I believe a major component to maintaining long-term dietary habits comes when the whole family is involved… and Dolores was accomplishing this piece.

Blog posts: Results and Aha Moments:  I think that Dolores “Aha” moments are right on target for anyone that makes such dramatic diet changes.    Although the USDA’s MyPlate guidelines are a huge improvement over the Food Guide Pyramid I don’t necessarily look to the government for diet advice since I know how much influence the food industry has on these things.  However, moving from the Standard American Diet to the MyPlate guidelines is certainly moving in the right direction, and I think that Dolores picked out the main point – half of your plate should be covered with fruits and vegetables at each meal.

The main reason anyone continues to do anything is because they get positive feedback.    Dolores and Jeff felt better and Ben’s evening blood sugars had improved.    They had made dramatic changes to their diet and found that the type of food you eat definitely does affect how you feel and how your body functions.  And, it seemed that the whole family was still enjoying meal times. 

Food is important information for your body.   Genes essentially control every function of your body and the kind of food that you eat tells your genes what to do.  Food communicates information to your genes to determine things like: carbohydrate, fat and protein metabolism, insulin sensitivity, blood pressure, cholesterol and inflammation.   Every day you are either promoting health or disease by the foods you choose.  Learning what foods or nutrients to emphasize, reduce or remove based on your individual physiology is key to maintaining health and managing chronic health conditions… like T1.

I’m looking forward to Dolores’ continued experiments with diet!  I’m excited that she’s discovered the power of food and I believe that she will continue to see positive results as a result of her hard work… in still more ways than she ever expected.

Sarah B. Clark, MS, RD is a Registered Dietitian and integrative and functional medicine nutritionist based in the San Francisco Bay Area. Her focus is on using food and nutrition to address the root causes of disease to promote real health and vitality. She is passionate about sharing this perspective with others through her site, the Natural Healing Nutritionist.