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."

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

Six have died - the rest of you keep living please

As 2/3 - the anniversary of Jesse's death - creeps up on me it forces me to try to make sense of things. I wonder sometimes if all the news I hear of deaths in the diabetes community are just escalating because I'm sensitive to the deaths, because facebook brings us all together, or if in fact there are more deaths.

Last night was a hard night for me. I have been struggling with how I will deal with Jesse's death on the actual anniversary. I had made the decision to stay positive and not think of death, or replay the day.

Last night, I learned of three more deaths in the diabetes world. All young. In fact, one was a 16 year old boy named Jesse. Horrible for me. Horrible for them. As I woke in the morning I learned of 3 more. All under the age of 28 (one was an 18 month old who's diagnosis was missed).

I wanted to take a moment to say to you all that are living with diabetes - please do not take my posts as a means to make you sad or scared. No, I repost and talk of these deaths so these families can find me. Because the best counseling I could get was from families who lost before me. I hope to be there for these new families and they transition to this new group that once again, no one wants to be part of.

So for those of you living with "d", live it large. :)