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

The Great World I Live In - my latest Dlife Column

Normally, I just share the link to my bi-monthly Dlife column, but today I share it with love here. If you would like to read more of my columns or the blogs and columns by many other talented writers in the "d" world go to: http://www.dlife.com/diabetes_resources/diabetes_advocacy/michelle_alswager/a-part-of-something

This month's column was inspired by my Death Valley ride this year and the friends who joined me. Thanks for reading:

"Thank you so much for making us feel a part of something instead of feeling like something happened to us."

I saw these words in an email from a newly diagnosed mom, when another mom already neck-deep in the “d” world reached out to her, and it really got me thinking about what a great world I live in. Some of you reading this might be in shock to hear me say that — that I live in a great world. Maybe I am a lucky woman to have all of you and to be a part of something, especially after losing my son to this wretched disease. It’s true, and I’ll tell you why.

This past October I embarked on my journey to Death Valley, California with 35 teammates and 300 other people closely associated to someone with diabetes. We had trained all summer to ride 105 miles on bicycles in 105-degree heat. The Ride to Cure Diabetes put on by JDRF is an awe-inspiring event that brings together people in ways I can’t describe to you, bringing people together to feel like they’re a part of something. I’ve said many times that you have to experience the desert to understand the love and connection.

As I was riding up Jubilee Pass — which is anything but full of jubilee — I was cranking my wheels at 4 mph on a 6-mile climb, and feeling pretty sorry for myself. I was thinking about how my friend who has a son with diabetes was deeply upset by words someone uttered earlier during the ride. The words came from a rider with no direct connection to the disease. The words were simply, “I’m so grateful to have healthy children.” The sting to this diabetes mom was great and sank her into tears because she knew after all of this was over, she was still going home to a child with diabetes. An “unhealthy” child.

I thought about her sadness for quite some time, and after pondering, I said to this mom, “You know what? I found myself jealous of your statement that you get to go home to an unhealthy child. Because while it upset you to hear the word “healthy,” it upset me to hear the word “unhealthy.” After the loss of my son, I would give anything to have an unhealthy child back in my home.” And then I thought, Michelle, there is always someone worse off than you; someone who lost their spouse and a child to a car accident; or a family who lost more than one child to multiple illnesses and accidents.

I reflected on that the whole flight home — how I am blessed. While I have diabetes in my life, and now the loss of it in my life, I’m so lucky to know the people that I do in the diabetes world. They care deeply. And when a new family comes along with a recent diagnosis, and one family reaches out to them which creates more families reaching out to them until it is a gigantic embrace, you get a statement like, “Thank you so much for making us feel a part of something instead of feeling like something happened to us.”

That’s my point.

the latest Dlife column- Making your worst your best

When Jay Hewitt came to town recently to talk to a group of diabetes educators I was lucky enough to have a seat. I couldn't help but remember the above photo of Me, Samantha, Joey and of course Jesse, as they crossed the Ironman Finish with me so many years ago.

I hope this column inspires you.

http://www.dlife.com/diabetes/type-1/michelle_alswager/diabetes

Reassessing Your Charity

This is my most recent Dlife column about reassessing your charity. Give it a read, it is food for thought.

http://www.dlife.com/diabetes/information/daily_living/Viewpoints/Michelle_Alswager/charity.html

My Take on "6 Things You Need to Know About Diabetes"

Today is "D-Blog Day". Started in 2005 during Diabetes Awareness Month it was created to create more awareness for diabetes.

I've watched all my "blog-colleagues" (I wonder if that is in wikipedia yet?) post about the bad things....and the myths and the struggles.

So my take is going to be a little different. Bear with me.


1. Diabetes builds character.
The people I know with diabetes are some of the finest human beings on the planet. Whether they have diabetes, or have a child with diabetes they care deeply about one another. They live their lives to the fullest and teach us about compassion, strength and love.

2. Diabetes makes you do crazy things.
Yes, like creating a documentary when you have no experience in film. Or ride your bike 105 miles through a desert. Or do an Ironman.

3. Diabetes makes you forget about other health problems.
Yes, for instance when Jesse was six months old we discovered he had a congenital birth defect of his left eye (no nerves on the left side so he couldn't look left). Or perfect baby was no longer perfect. With the onset of diabetes and his adaptive nature to learning how to turn his head so no one noticed his eye, we almost completely forgot it existed! Yes, folks, diabetes put perspective on other pain.

4. Diabetes pisses me off so much that other things seem small in comparison.
What? I didn't get a raise? My daughter missed the school bus? Dinner won't be ready until 7 pm? Yes, thank you diabetes for helping me to not sweat the small stuff.

5. Diabetes got me active in politics.
Oh, diabetes, you launched my political career - I mean before you, did I care about embryonic stem cell research or know what the NIH was or meet with legislators?


So you might be sensing hostility at this point. Maybe. But #6 has meaning.

1. I wouldn't be who I am today if it wasn't for diabetes.
When Jesse was diagnosed with diabetes 10 years ago my life path - and career path - was much different. My passion to find a cure led me to working as an executive director for two diabetes organizations and then onto my current position at BRAVA Magazine (I had met the owner of the magazine when her son was diagnosed with diabetes). And I love my job. I love the people in my life. And I am blessed to know all of you.

The Interview!

Here's the video from CNBC's "Dlife" episode. Spread the word!

Click here: Triabetes DLife Interview

What if someone said, "Wow, so tell us more about why you eat mac n cheese?

That's how I felt about getting asked to fly to NYC to talk about the Triabetes Documentary. To me, it's like talking about something that is so second nature at this point, it amazes me that someone cares what I have to say! Not to belittle the project AT ALL! My point is that is just part of my day, I look at them like, "Why are you interested in how I parallel parked my car?"

All kidding aside, I'm a little nervous posting this because I haven't actually SEEN the clip that was filmed on the set of Dlife about a month ago in NYC. I'm actually nervous it will be like 6 seconds and I will be horribly embarrassed, but what the heck, I've never been a shy girl, why start now?

Check your local listings but the episode will appear on Dlife and it is my understanding it will be March 8th at 7 pm est. If you miss it, don't worry, I'm narcisistic so I'll probably show up at your house and knock to remind you that you can re-watch it on the www.dlife.com website soon after.

I received word that Brian Foster will be flying in to narrate the film on 4/4-4/6th and the script Nella and Ray of Andiamo Productions have built was the first time I really envisioned the film from beginning to end. Those two are rockstars.....

Anyway, I hope you tune in. I hope you tell your friends. I hope you don't mind the yard sign I planted in your lawn.