Hope on 2 Wheels Documentary

For those of you who have been following my journey you know I joined 23 teammates on 6/23 for a trek of 252 miles from NYC to DC for diabetes awareness.  Virtually a group of strangers, now people I call family, I proudly share this documentary about these people with all of you.  Please share if you would like!  And thanks for following me!

http://vimeo.com/54501363

Hope on 2 Wheels video

Time is a gift

I would like to share with everyone my most recent dLife column with some photos from the trip.  I had not been up to this "land" in 7 years.  The older boy is my daughter's boyfriend, Logan, who has been part of our family for the last three years and always will be.  Joey is so grown up in the other photo (they are screwing around, proposing with a clam.  Joey was surprised at the engagement) Enjoy the read.

Today I find myself sitting in a van for a 4-hour road trip home from a camping adventure in upper Michigan. What’s my point, you ask? I’ll get to that.
In 1992 I married Tom, the father of all three of my children. We divorced in 2005. In the years of our marriage we pitched in with his family to purchase a piece of property just north of the Wisconsin border. Our campers, canoes, kayaks, and pudgy-pie makers waited for us to return each summer. I can still remember going up there before we got married, when Samantha was a baby, and so on. Our “married” selves went through a lot together, as many families do. We brought children into this world, we went through the horrible diagnosis of type 1 diabetes in our 3-year-old son, Jesse, and we went through the loss of him two years ago — together. Regardless of our marriage dissolving, that is something that bonds us forever.
This summer I was invited to join Tom and the kids on their annual pilgrimage (along with all of my ex-inlaws). Sound strange? It was anything but. The drive up, the stop to get the fireworks that I protest every year (he is famous for almost blowing us up in our lawn chairs), the sights along the way — everything was so familiar and right. I won’t lie to you, I was very nervous. Not about spending time with my ex-husband, that was the easy part. The hard part was going to be reliving so many Jesse memories in a place that holds many. To me those memories were fresh because I hadn’t set foot there since he passed away.

On Saturday morning after a cup of coffee by the fire with my ex-sister-in-law, Sue, I laced up my running shoes and threw on the iPod to head out on a nice 4-mile run. River Road is one of those roads where you can go miles without seeing a car or another human being, but tend to see some deer, turkey, or other wildlife. As I jogged down the road I smiled up at the clouds, breathed in the air, and said a thank you to Jesse for bringing our family together to share this brief moment in our lives. As I said it I stretched out my arms, palms up to embrace the feeling — just at that moment the slight breeze changed to a strong wind and blew my hat right off my head. As I smiled and looked up again to let Jesse know I felt him, a majestic bald eagle swooped down above me in a graceful arc. I was happy to let the tears flow that I had held back just moments before at a memory of trying to change Jesse’s pump site so many years before in the camper.
As I walked back down the long, pebbled driveway to the sounds of the ever-so-grown-up kids riding the ATVs, laughing and yelling, I knew it was a moment to share with all of you. Remember to enjoy the moments you are given, because no matter how long you have with someone, that time is a gift. Life is too short to hate your ex, to be mad at your best friend for something they did years ago, or to not forgive someone who is just never going to agree with you on something. If Jesse can give you anything it is the gift of me reminding you today to show people you love them — even if it means braving your ex-husband’s pyrotechnic show that threatens your eyesight . That’s my point.

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...."