Wednesday, February 27, 2013

Teach Your Children Well

You, who are on the road
Must have a code that you can live by
And so become yourself
Because the past is just a good bye.

Teach your children well

Their father's hell
Did slowly go by
And feed them on your dreams
The one they picks
The one you'll know by

Don't you ever ask them why
If they told you, you will cry
So just look at them and sigh
And know they love you

The answer to the question, "What would you do if you won the lottery?", always intrigued me as it offers a window into a person's true ambitions.  If all financial road blocks were removed and all financial responsibilities were met, what would you do?  The immediate response is usually, "I'd quit!"  OK, but what then?  After all, most of us couldn't just sit on the sofa and watch television for the rest of our lives.  OK, at least some of us couldn't.  

For me the answer is simple.  I would spend more time with my family and I would teach.  I would teach so I could share what knowledge I have gained and I would teach to inspire and hopefully motivate others to do their best and follow their own dreams with or without lottery winnings.   

Now for those of you might be concerned you'll end up in a classroom listening to me ramble on and on, don't worry.  There was a time in college where I thought about taking that path, but for this reason and that reason serendipity took me in another direction.  I am now gainfully employed in another field and do not play the lottery.  So, I thought my dream of becoming a teacher was no longer valid.  That was until I looked back upon our talk at Genzyme.  

A few weeks back I received a call asking if we would be willing to speak at a special Genzyme meeting. The event would bring their CEO, WW Executive Team, and over 250 employees from over 50 countries to Boston.  Genzyme decided they wanted to do something different and hear from an entire family facing rare disease and chose us.  We had been waiting for the opportunity to speak directly to the group of people who have changed our family's life and the Global Leadership Team meeting seemed to be the perfect venue. 

I'd given other speeches about our family before, but this was different.  This was not for a group of people raising money or even patients and their families.  This was a group of people who directly impact my daughters' lives, with their IV treatment, and are active with the support of many others managing life with a rare disease.  The usual speech would not suffice.  My goal was not just to say thank you.  By sharing a day in the life, my goal was to inform, inspire, and motivate.  Without realizing it at the goal was to teach.

We arrived in Boston the night before the event and planned to meet up with our Genzyme friends over dinner.  Before doing so, they were kind enough to allow me to check out the meeting room so I could understand the layout and see where I would be speaking.  I had prepared an updated set of slides and practiced a few times at home, but was still not sure how I could best relate our story to the crowd.  That was until we saw this mural... 

According to our hosts, the attendees were given sections of the mural the day before and asked to draw what they thought a journey with rare disease might look like.  The result was a road with people traveling the journey hand in hand amongst flowers, hillsides covered with the sun, and the word "Hope" in many languages.  The Genzyme team was very proud of the results and I thought to myself..."Perfect!"

As expected by anyone who reads this blog, I incorporated song titles into my presentation.  The first one read "The Long and Winding Road of Diagnosis", the next "Here Comes the Sun", etc.  How's that for coincidence?

After enjoying a wonderful dinner and meeting new friends (including one who is running the Boston Marathon in honor of our girls - blog post to follow), we headed back to the hotel to settle in.  Usually I can sleep in any hotel room, but for some reason that night I had little success.  At first, I thought it was the bed or the firehouse across the street, but no.  I could not sleep because I kept visualizing myself giving the speech over and over.  My body said, “sleep”, but my brain said, "Get busy!  You've got to do your best!"

The next morning, we were up and out by 8 AM so we could grab breakfast before the talk at 9:30.  When the time came to begin, I was impressed by the choreography.  We were fitted with individual mics, entered through a side door, received two introductions, and then took the stage.  The process made me feel like I should burst out in song, but then remembered that singing is Maddie's thing and definitely not mine.

When I start a speech, I usually share some corny joke or story about myself to break the ice, but neither were appropriate since English was a second language for most of the audience.  So this time I started with a simple hello...with the help of Emma's iPhone.  It went a little like this:

"Welcome, Bonjour, Bienvenidos, Bonjourno, Wilkommen,
and (for my Brazilian friends) Bein-vindo." 
My talk began with the diagnosis, and continued for over 30 minutes speaking about the transition to IV therapy, perspectives on living with Pompe from the patient's and caregiver's view, some lessons learned, and the "Welcome to Holland" story.  (Please see this post link for the story   

Usually I end my talk there, but this time we decided to take a different approach.  This time, I left them with a challenge to IMAGINE.  I asked them to IMAGINE what they could do to improve a treatment so other children can have the same success ours have.  I asked them to IMAGINE what more they could do to help families they know and those they have yet to meet.  I asked them to take the challenge back to their teams across the globe and IMAGINE what they could do to make one patient's or caregiver's life better.  In summary, I asked them to IMAGINE what they could do to ensure each patient's experience ended on a road to sunshine, just like their mural. 

We finished the session with a number of questions.  We received questions about coping, about the girls' experience at school, about friends, about Carter, and about how we juggle it all.  We then got a question directed to the girls asking what they wanted to do with their lives...what was their dream?  Emma explained she wanted to take what she had learned through Pompe and use it as motivation to help others through a mastery of genetics.  Maddie, with no hesitation, said she wanted to live in New York City and star on Broadway or live in Los Angeles and star in movies.  They were both asked about limitations from Pompe and basically came back with the same answer.  They don't think about what they can't do.  They think about what they can.  I smiled.

After the session we received a number of thank you’s, a few vague comments about speaking again somewhere around the world, and questions about what I do for a living.  I was asked several times if I give speeches professionally because it was so natural and so fluid.  I thanked everyone for their compliments and then laughed it off saying that while I may give some talks at work, they probably just caught me on a lucky day.

A few days later I was still living off the high of the experience and called my mom to share.  During our conversation she told me about how much my dad loved giving speeches.  She explained how he had told her that while he might be fearful at first, if he was speaking about something he believed in, he could talk for hours.  He enjoyed the opportunity to share his thoughts and engage with the crowd.  In his own way, he loved to teach.

Last week would have been my dad's 85th birthday.  Unfortunately, he passed a number of years before we first heard the words Pompe disease and before I ever stood in front of a crowd to tell our story.  Regardless, I now have a better appreciation for why I love to do it.  Just like writing this blog, I speak because I believe that sharing our story will motivate another to advocate for their children, to seek out treatment for themselves, or simply to Hope.  Just like my dad, I do it because I love to teach.

When my kids look back and remember that cold Boston day, I expect they will recall much more than just a speech.  They will recall the very unique opportunity we had to meet such wonderful people, to share our story, and to strengthen each other through the process.  For me, I will remember two things.  I will remember the opportunity I had to hopefully give back just an ounce of the value a group of people had given us.  I will also remember the opportunity to sit back and hear my girls talk not of limitations, but of ambitions and of dreams to a room filled with supporters.

In the end, I realize that I can teach in other places than just a classroom and may just take it up here and there.  However, after hearing my girls, I realize I still have so much to learn from our three young adults and their ongoing journey down The Long and Winding Road.  No worries though.  I've got my #2 pencil in hand, a new notebook, and am all ears so they can...   
Teach your parents well
Their children's hell will slowly go by
And feed them on your dreams
The one they picks, the one you'll know by

Don't you ever ask them why
If they told you, you will cry
So just look at them and sigh
And know they love you

Thanks to everyone at Genzyme for their hospitality, but especially to Kathleen Coolidge for inviting us, hosting us, and continuing to inspire many Pompe patients through her work in Patient Advocacy. Bravo!

Credit to: Crosby, Stills, and Nash, “Teach Your Children”

Here are a few photos from the event.  Enjoy!

Kicking off the speech with welcomes from across the globe.

Explaining how the mural truly represents the rare disease journey

Lots of smiles as the girls answer questions about their futures.

Saturday, February 9, 2013

Mr. Postman...Wait!

Oh yes, wait just a minute Mr. Postman
Wait Mr. Postman

Mr. Postman, look and see
If there's a letter in your bag for me
I've been waiting a long long time
Since I heard from that gal of mine

A couple of weeks ago my work brought me to New York City.  For those that do not know, NYC can be a tough place to drive unless your car is yellow and says Taxi on top.  So, this time I choose the train.  As I exited Penn Station and stood in line for a taxi to midtown I noticed the historic New York City Post Office which as you can see looks like a building you are more likely to see in Europe.

When admiring the building amongst the hustle and bustle of the street, my eyes were drawn to the words carved above the columns.  

Neither snow nor rain nor heat nor gloom of night stays these 
couriers from the swift completion of their appointed rounds.

I've heard these words on a TV ad or two in the past, but like some things I never paid much attention.  However, for some reason this time they stuck. This time they made me think way back to the early 1970s and a story about a little boy, his brothers, and of course a mailman.  

I guess I was about four or five at the time of the story and we looked a little like this.    

From right to left you have the handsome one (AKA your author), my brother Joe (who by the look of the white tie and shirt was celebrating his First Holy Communion), and the "Instigator" as my mom called him or the "Mastermind" as I preferred.  His name is Mike.

Back then, our mailman didn't deliver mail from the comfort of his truck.  He walked. I used to sit outside and watch him saunter up and down the street in his shorts and tennis shoes and think he had a pretty good gig.  He was outside in sunny Southern California where the temperature rarely dipped below a chilly 75°F, had a good tan, and always seemed to be in a good mood.  In those days there was no FedEx, no UPS, no email, and no texting, so not much competition.  If you wanted to reach someone outside your local area you either had to drive there, call them (from a phone attached to your kitchen wall - - gasp!) or send a letter.  So, business was good and our mailman was in no hurry. 

I almost forgot one little detail.  In our neighborhood, the mail wasn't delivered at the street.  We had a handy slot in the front door so each day he had to come up our walkway and slide the mail inside the house.  My mom loved it because she didn't have to go out and brave the mean streets of So. Cal. suburbia.  And, three mischievous boys loved it because it spurred an idea on boring summer day.  

For my older brother Bill's birthday I scrapped together whatever spare change I could find and purchased the finest Batman squirt gun I could afford.  As you can see below, it was a thing of beauty.  

To this day, I swear I had no intention of using it, but as it sat, pristine in its shrink wrap, I could not resist.  Keep in mind this was summer so any chance to cool off was taken seriously.  Sure, we could have dove in the pool or ran through the sprinklers, but for a young dude, the chance to be armed with the most technologically advanced squirt gun in town, could not go to waste.  Plus, the "Mastermind" had a grand plan.  It went a little like this...     

The next day as my brothers gathered and filled up all the squirt guns they could find, I was to be the "scout" and keep watch out the front window.  When our mailman entered the neighborhood I was to give the sign.  Just then, we would quietly sneak out so mom didn't hear and hide out in the bushes near the front door.  There we would lie in wait until he came up our walkway so we could soak him!  As the "Mastermind" explained it with an extra bit of drama, I had visions of John Wayne prepping for a secret World War II mission.   

I think I was in scout position at least an hour early.  As my brothers scoured the garage, toy boxes, and cabinet drawers for squirt guns, I sat, resolute.  As the morning rolled on, the squirt guns were prepared and the target was spotted slowly walking across the street.  We moved into position and waited.  At just the right time, we popped up, and soaked him, half his mail bag and ran around to the back of the house to safety.    

He took it like a man and did not say anything to my mom, but she saw it all go down out the window.  So the next day, after Mom duly explained that this was not something "nice boys do," we waited outside to apologize.  As our mailman approached the house we readied our apology, but just then he pulled out a much nicer squirt gun and surprised us with a dose of our own medicine.  We stood there soaked and realized we had been duped by a better foe.

From that day forward, and throughout that whole summer, we launched surprise attack after surprise attack on our mailman.  Sometimes we were the victors and sometimes we were left soaking wet.  It didn't matter if our mail had to be laid out to dry before Dad came home, we were having a ball.  The next summer, the "Mastermind" moved onto another crazy plan and we left our mailman alone.  He continued his saunter up and down the street at ease without fear of battle. 

It has almost been four decades since I paid much attention to mail delivery.  Over time our family moved to a new house, my brothers and I got older, and we lost interest in squirt guns.  Life moved on.    

These days, we live on the East Coast, our mailman drives a truck, and probably would not take too kindly to a squirt gun sneak attack.  I no longer spend my summer days sitting watch for him to enter the neighborhood because the only thing he seems to deliver me are bills, credit card applications, and advertisements which quickly find themselves in the recycle bin.  If there is anything important to be delivered, my friends at FedEx or UPS visit the house.

So while I don't stand watch any longer, I do think about my old mailman every other Saturday morning.  Like those days from long ago, our guy walks right up to the door and delivers the important information for the day.  Unlike the past, he doesn't hold letters from a distant friend or even birthday cards with cash from grandma.  No, his delivery is much more important.  These two boxes come from a pharmacy and contain the necessities for our girls' treatment.  There are a few IV bags, a few adapters, some water for injection, a couple tubing sets, and a cooler filled with something that looks like this...

Yep, it's Lumizyme delivery time!

I rush to meet our FedEx or UPS man at the door each time with a big thank you and a sigh of relief.  It may sound strange to you, but despite over a year of bi-weekly deliveries, I am still not comfortable until I've signed for those cartons, unpacked the supplies and placed the Lumizyme vials in the fridge.  Only then I know that our girls will once again get the treatment that keeps them moving and we can go on with our weekend.  

As the vials need to stay cold, I am on the watch to make sure everything goes well.  The majority of the time, the delivery is like clockwork, but when the weather wreaks havoc, things can get a bit crazy.  We've had to cancel plans because deliveries were a few hours late, we've had to meet the UPS truck on his route because he forgot the second box, and once we had to wait nervously for two days until a winter storm's wrath allowed for delivery.  We've seen the effects of missing a treatment only once and want to do our best to stay on top of it.  You should see Donna work the UPS phone lines...impressive!

Looking back, the 1970's in Southern California seemed idyllic.  It was a slower and simpler time, at least for me and my brothers and our friend that walked the streets with a mailbag over his shoulder.  I have no idea where our old mailman is these days.  He was a good man and I hope he is retired, healthy, and living in some warm climate far away from little hooligans with squirt guns.  If I did get a chance to connect with him I would say thanks not just for the fun we had that summer day, but for doing his job.  While we did not seem to care what was in his bag, I'm sure someone did.  I'm sure back then he delivered pills to a nice old lady's house or important supplies to someone's child.    

A long time ago, I could not have imagined that one day I would step foot in New York City.  Also, I could not imagine I would be writing a blog about my family.  And finally, I could not imagine I would once again be so excited to see a postman deliver something to the house.  Sure, these days he may not wear a blue uniform with USPS on the front, but rather with FedEx or UPS.  In the end however, it doesn't matter because...  

Neither snow nor rain nor heat nor squirt gun attacks stays these 
couriers from the swift completion of their appointed rounds.

Great work gents!  Great work!

Credit to: The Beatles, “Mr. Postman”
       Song originally by The Marvelettes