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...

Mile 23 and what it means to me

It won't really shock any of you that I just completed my 11th Ride to Cure Diabetes for JDRF. A beautiful 100 miles through the bluffs of Wisconsin, Minnesota and Iowa with 399 of my closest d-world friends on a perfect day of smiles and honor.

This year JDRF (and I personally thank National Co-Head Coach Tim St. Clair and Aly Levine) has taken it upon themselves to have a mile of silence at all 5 ride sites at mile 23 in honor of Jesse and the many others who have followed him in his death. It is a great honor to keep seeing mile 23 posts all over the world. To stand there myself, well, beautiful and meaningful.

I rode for a lot of lost faces and am proud to have written their names at mile 23 (as much as we wanted to chalk them on the road, it rained so a poster board had to do!)

The Ride has always been very special to me, from my first time sitting at a ride meeting and raising my hand to say, "well, I don't have a bike yet, can I really train for this?" to crossing the finish line in record time with one my dearest friends (a new rider!), Theresa Hineline.

Diabetes camaraderie is a beautiful thing.

Rock on Jesse. We miss you.

You say it's my birthday....

So I could spend my 42nd birthday doing just about anything right? I've got a new house that I filled yesterday with friends and family for a little pre-celebration. But today...today is heavy for me. I cannot get Jesse off my mind because its hard to celebrate things. And this morning my facebook was a sea of birthday wishes. But nothing overwhelmed me quite like Moira McCarthy's blog post to honor Jesse by inviting the world to buy a virtual ticket to Jessepalooza (jessepalooza.org) with her and to raise a glass at 7:23 pm on Saturday, August 6th.

I hope you take the time to read this from Moira. Other people - and their solid kindness - is what gets me through. I hope you will repost this, after all, its $10. You can do it.

http://despitediabetes.wordpress.com/2011/07/25/in-honor-of-jesse-a-virtual-call-to-action/