Hope on 2 Wheels - Mission Complete

It wasn't that long ago that I got a call from Scott Kasper - founder of Hope on 2 Wheels - asking if I was busy on 6/23.  In a few hours I was signed up to ride with 23 teammates from NYC to DC - 252 miles. 

Our team gathered for the first time on Friday 6/22 just outside of the 9/11 Memorial in NYC.  We came from all over.  We all had different stories.  But one thing was certain - they all had Type A personalities like me - and all of them were there because someone they love has (or had) diabetes.

Our journey began at 4:45 am as we assembled to ride.  The banter begins with a lot of one-liners flung between Josh, Tony and I.  I'm told I will not be riding in front of Josh if I ate any of the hard boiled eggs Scott provided at breakfast.  We roll out and head to the JDRF Headquarters where we meet Noah (otherwise known as the Diabetes Dude).  He is wearing a Riding on Insulin shirt which immediately makes me want to call Sean and Mollie Busby, but no time for that, its time to roll.

Our adventure continues with a ride on the Staten Island Ferry.  Surreal to be looking out at the Statue of Liberty on my bike. 

Shortly into our very pothole and bumpy ride on the island, the port authority kindly took us over a bridge they shut down for us.  We are on to New Jersey.

The team is ready to rock and the adrenalin is definitely kicking in.  On to mile 23 where Scott arranged for bag pipes in Jesse's honor. I had with me a test strip of his that had fallen out of my laundry while I was preparing for the trip.  It was in my intention to leave it at mile 23 but it didn't feel right.  I decided instead to place it inside the flag on the back of our lead motorcycle as it blared 80s hairband music throughout the trip.  (it continues on from there as the driver asked if it would be ok for it to stay there and continue throughout the country with him).  I could give no words at this spot.  I had no voice, only tears.

Onward and upward (or downward) we went.  Through New Jersey, into Delaware and Maryland.  So much happened in between.  A highlight would be the New Jersey check point that really DID have a cheer section.  It was nice to be greeted by so many cute kids with "d".

As we biked into the night sky and turned our lights on we realized we were up against many things - deer...traffic...the dark... we make the decision to be safe and get off the road those last few miles and instead safely deliver us close to the finish.  We rode in together at mile 252, everyone healthy, everyone safe and me with 23 new brothers and sisters in this world.  Best. Diabetes. Summer. Camp. Ever.

HOWEVER - WE ARE NOT AT THE FINISH LINE.  Diabetes still exists.  Are you compelled to help end it? 

This Sunday is Jessepalooza - a rockfest to honor Jesse the way we think he would like to be honored - rocking out.  If you cannot join us at Capital Brewery from 3-10pm for good music, fun things for kids and lots of cold beer for the adults - I ask you to PLEASE consider donating at www.jessepalooza.org.  There is a "donate" button on the home page.  IF you donate $23 or more, you are automatically entered to win our grand prize.  It's big!  It's HUGE!  And anyone in the country can use it!!!!  Please spread the word. 

DONATE AT www.jessepalooza.org 

252 miles for you, little man.  We miss you. 

Mile 23 - working my way to Death Valley

It will come to no surprise to most of you that I still have conversations with Jesse. Maybe that sounds crazy. I know it is not. Yesterday I was told through an intuitive friend that Jesse is excited about my upcoming trip from NYC to DC as part of Hope on Two Wheels (http://www.facebook.com/hopeon2wheels) participating with 23 of the most well-known cycling for diabetes rockstars I've ever met. Honor to be asked. I booked my flights today with a renewed energy knowing he's proud that I'm part of it. Back in April I flew out to San Diego (picture above is me with Jen Nicholson, mother of Trent Nicholson, who passed away in 2010 at the age of 14 from his type 1 diabetes) to ride in the ADA Tour de Cure with my friends John Flint and Kurt Matel. The team grew every day as I met more and more people in the d-world. Brian Haag, Anne Findlay Dowling, Bob Nicholson, Ryan Maloney (remember the cute boy from the Triabetes Documentary) and so many more. Mile 23 as most of you know is a mile of silence not only for Jesse but for all of the other kids who have lost their lives to this disease. We honored the kids as well with arm warmers - if you look closely you can see their names throughout.

It was an emotional start as we honored the boys that started it all - Jesse and Trent. With my Death Valley ride coming up as well as my Hope on Two Wheels I thought now would be a good time to ask you to donate if it moves you. When you go to this link you'll be reminded of Jesse from just weeks before he was gone. I'm grateful Jesse is still part of my life and my mission. The mission to make sure no other family goes through what we have. http://www2.jdrf.org/site/TR/Ride/JDRFNationalRides?px=1268074&pg=personal&fr_id=1763

Jesse was here

2/3, the second anniversary of losing Jesse has come and gone and today, 3/3, is here. 3/3 was Jesse's diagnosis date, 12 years ago. Not a day to celebrate, just a day to reflect. So many parents are out there who remember their child's diagnosis date. I can think of two friends who remember the diagnosis date because not only was it the date their child was diagnosed...it was also the day the child died.

Today I remind you to educate others about the symptoms of type 1 diabetes. I think some of us are so close to it that we forget that not everyone knows the symptoms. Teach. Frequent urination, extreme thirst, lethargy, irritability. And most of all trust your gut - if the doctor tells you the child just has the flu...or a virus ASK them to test your child's blood sugar. Children die at onset. I know it first hand.

Let's remember that these children were here, too.

D-blog Day: how has the online community helped you?

Today is national d-blog day. I was asked to participate with the hundreds of others who don't seem to mind the whole world knowing what goes on in their life. We were given two tasks. 1) to create a page for a book that will be at the Children With Diabetes (CWD) Friends for Life (FFL) conference and also to talk about what impact the online community/presence has made on life with diabetes - for me personally.

In 2002 I became a moderator for JDRF's Online Diabetes Support Team (ODST). Basically, I would get all of the emails that were sent to JDRF from families and was assigned the task of finding a great "cyber volunteer" to answer their questions. Back in 2002 I remember the occasional email coming in that no one wanted to see..."I lost my child to diabetes...can someone help me?" Of course at the time no one really could. We tried, but we couldn't fathom.

So many years have gone by and with the death of Jesse I've learned sadly two new ways the online world has been so very useful. First of all, I'm back on the ODST with one specific task - answering emails from families who have lost their children. Second, the world of grieving the loss of a child to diabetes you would think is small. It is not. Facebook and other social media has allowed us to unite into a new group that "no one wants to be a part of." And I'm damn lucky to have both. Because helping others as I always say - helps me. Without those other families I would be grieving quite alone.

So put to task here is my page for D-blog day. My page represents Mile 23(a mile of silence for those lost) and all that it stands for not only for Jesse - but for all the kids lost to this disease. Pictured are many different moments in Death Valley, CA, La Crosse, WI, Grandad's Marathon in North Carolina (My two favorite type 1 Triabetes athletes pictured Steve "Ninja" Ahn and Dave Shack) and Mile 23 of the Ironman Wisconsin. I literally cherish each picture I get where I know someone - anyone - spent a mile thinking about the death of my son and what it means to them. And surrounding the photo are the names of children I never met, but who's parents have become my friends - through our grief - we are united.

I was also asked to provide the blue circle that indicates World Diabetes Day. I did not have to create one. One was created when Trent Nicholson died at the age of 14. So for Jen & Bob Nicholson, this one is for you, baby. The bracelet says, "Find a cure for T1 Diabetes" and more importantly to me, "Remember Trent Nicholson."

The Wedding, the heist, Jesse's gift and Johnny C

Oh, so you are all DYING to know the story. I just can feel it in my bones!

We wake up to gray skies on Saturday morning, the day Sean Busby is about to marry Mollie Shambeau in Waupaca, Wisconsin. No worries, we know Jesse will be there to help out on his 15th birthday to keep the rain away. We all expected an amazing sign from Jesse, counted on it really.

You see a week before my beloved bike - Johnny C - was stolen out of my garage. Not just any bike, mind you. This bike has been ridden in Jesse's honor for years, endured Death Valley 5 times in fact. No, I wanted Johnny C to come home. I wasn't all that hopeful, after all you rarely hear about bikes recovered. I posted a note on Craigslist letting everyone know what my bike looked like and that if anyone saw it, would they please call me. I filed my insurance claim begrudgingly and carried on.

As I sat at the Shambeau garden with many friends watching my office spouse marry a man I love like a brother, I was choking up. I could hear owls hooting in happiness. Geese flew over. The sign? No way. As the vows were exchanged I again cried while Sean and Mollie publicly recognized Jesse bringing them together - after all, they would never have met if he hadn't died and I knew more than anything Jesse was smiling down on them. I could FEEL it.

During the ceremony my phone rings and rings (on vibrate of course, I'm not that rude, but always having my phone on me is a habit left over from Jesse...no mom is ever away from her type 1 son, no way.) I get on the bus to travel back to the Indian Crossing Casino (which is not a casino, nor native american looking) and listen to my voicemail. A complete stranger is telling me that a thief has posted my bike for sale.

In somewhat of an excited and swift moment I call Charles back home and ask him to work with this guy to set up a meeting, and to bring the police. It's within a short amount of time that Charles is meeting with a wonderful officer named Steph...she's leery we are going to get this...but then Charles lets her know of Jesse, of the wedding and the meaning of Johnny C. She calls my friend Sarah MacKesey who is also a police officer and they are ready to roll. At the same time my friend Vicki G is letting me know that she also is trying to call the guy and knows it's my bike (her partner is also a police officer). My phone is ringing. A wedding is happenings. Toasts are made. And as Sean Busby stood to toast my Jesse Alswager, I get a call. A simple sentence from Charles, "We have your bike." And a mass of people who never met me, but know of Jesse, roar.

Did he get arrested? No. Was Johnny C lying sadly on a dirty floor in a seedy neighborhood? Yes. But nothing was removed from my biked - not even my trail pass with my name! No doubt it was my bike.

All I wanted was my bike back. And Jesse, well, he sure gave us a sign. A big one. There is no doubt that he wanted to be part of the day...and he was.

Congrats to Mollie & Sean and happy to "me" for having my bike..in the HOUSE...he's no longer living in my garage.

And that my friends is a happily ever after. Oh and by the way the gift they are opening symbolizes Jesse, and their marriage. As Dave Matthews so wonderfully said, "You and me together, we can do anything, baby....all the way to the end of the world...."

Til We Reach The End of the World

Tomorrow would have been Jesse's 15th birthday. I could stare at that sentence for hours and probably cry and feel sorry for myself. I'm sure I will spend at least 3 minutes tomorrow feeling sorry for myself.

But I get the pleasure of celebrating Jesse's birthday in a way not many others could do in my situation. Let me tell you a story.

When Jesse died a good friend of mine called and wanted to be sure he could fly in for the funeral. You see, Sean Busby was a good friend to Jesse. Jesse looked up to Sean in those early years because Sean was a professional snowboarder with type 1 diabetes who was about to embark on putting together a snowboard camp in Wisconsin with me. Over the years they became more like brothers, calling each other up with stupid one liners or talking about girls.

Brothers.

I asked Sean to deliver the eulogy for Jesse along with Jesse's sister, Samantha. While he stood talking about Jesse in heartfelt words a friend and coworker, Mollie Shambeau, was listening in a church pew and wondering who Sean was.

Over that week Sean and Mollie got to know one another. So much so that Mollie ended up quitting her job and moving to Utah to live with Sean. I can flash forward through this, but let it be known there have been many symbols that Jesse approves of this as songs that remind us of Jesse keep popping at important moments for Sean and Mollie, including the day Sean proposed to Mollie in Iceland. "You and Me" by Dave Matthews Band, a song that Jesse asked me to download just days before he died.

So Sean & Mollie decided to get married - and what date did they pick? The only date available of course in the small town of Waupaca, Wisconsin - September 24, 2011. Jesse's 15th birthday.

I'm looking forward to spending the day not thinking so much about what I've lost, but for what Sean and Mollie gained out of that loss and friendship. I had struggled so hard to come up with a gift for these two after all I certainly can't give them a Pottery Barn gift certificate. I had decided to let Jesse guide me.

One night while sitting on my deck just staring at stars and listening to music alone, it came to me, and with the help of a mom who also has a child with diabetes (of course!) I created what I think is the perfect gift. More to come on that after I hand deliver it tomorrow at their wedding, but I'm pretty sure Jesse picked it out, if you believe in that kind of thing like I do.

The song below reminds me of Jesse in so many ways, and yet is fitting for their wedding also. I hope you all have a good day remembering your time with Jesse. I hope you'll also post some fun memories on his memorial page or my wall.

Congrats Mollie & Sean, and Happy Birthday Eggyolkio...we miss you....


You & Me - Dave Matthews Band
Want to pack your bags something small
Take what you need and we disappear
Without a trace we'll be gone, gone
Moon and the stars will follow the car

And then when we get to the ocean
Gonna take a boat to the end of the world
All the way to the end of the world

Oh and when the kids are old enough, we're gonna teach them to fly

you and me together
We could do anything baby
You and me together yes, yes
You and me together
We could do anything baby
You and me together yes yes

You and I were not tied to the ground
Not falling but rising like rolling around
Eyes closed above the rooftops
Eyes closed we're gonna spin through the stars

Our arms wide as the sky, we're gonna ride the blue

All the way to the end of the world
To the end of the world

Oh and when the kids are old enough, we're gonna teach them to fly

CHORUS

We can always look back at what we did
Always remembering how you and me did
Right now it's you and me forever girl
And you know, we could do better than
anything that we did
You know that you and me
We could do anything


You and me together
We could do anything, baby
You and me together yeah, yeah
Two of us together, we could do anything baby
You and me together yeah, yeah
Two of us together yeah, yeah
two of us together, we could do anything baby

It's so small
Till we reach the end of the world

Jessepalooza 2011 Rocked Out

The day was beautiful - hot - but beautiful. Crowds came and went throughout the day - and we realized Keva Sports Center is a perfect place to bring your kids (and still drink beer!) while watching great bands!




Many thanks to our sponsors:
Murphy Desmond Lawyers
Madison Memorial Captain Club
BDO
Centurion Cycling
Residence Inn


The hundreds of companies that donated items to our silent auction and drawings - I KNOW you are inundated with requests - I thank you personally for thinking our cause is important.


To best committee on the planet - Jody Montgomery, Michelle Reddington, Sandy Thompson, Carla Blumer, Shana Kellum, Tonya Tuomi and the many many many volunteers who show up each year to help! Thank you!

To the bands who give selflessly and do not get paid a cent! They come out, they play and they are awesome. My thanks to
The Distractors
The Campaign
Reaul
Bascom Hill


Listening to the kids sing "If you're not living in my world, it sucks to be you" is definitely one of the highlights. And Morgan's new crush on Reaul. :)


Of course many thanks to Diana Henry and John Urban for emceeing each year for me - so appreciated. And to the media including but not limited to BRAVA magazine, 105.5 FM, WKOW 27, Isthmus....you all supported the event and my family thanks you.

To Moira McCarthy who thought take our mile "23" and make it even more special by having people across the world (LITERALLY) not only buy virtual tickets to Jessepalooza, but to raise a glass at 7:23 pm to toast an amazing kid who still seems to be on a mission. Cheers to all of you!

To Tom Karlya for flying in to spend the day and meet the people I've been telling him about...Told ya, man...

I think Joey said it all....we miss you Jesse and we wish you were here. Until next year...