Wednesday, November 9, 2011
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."
Sunday, September 25, 2011
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...."
Friday, September 23, 2011
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
Monday, August 29, 2011
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...
Monday, August 15, 2011
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.
Monday, July 25, 2011
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/
Wednesday, June 29, 2011
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.
Friday, June 3, 2011
Jessepalooza is looking mighty AWESOME
Join us for a fun-filled day on August 6, 2011 at Keva Sports Center in Middleton to celebrate the life of Jesse Alswager. We have chosen Jessepalooza to be the official event to celebrate his life each year doing what Jesse loved best - rocking out.
We are currently accepting sponsorships and exhibitor space - take a look at jessepalooza.org for updates and a "fact sheet".
We have a great line up of bands that are sure to impress - with family-friendly activities all day and ice-cold Wisconsin beer, why wouldn't you want to come?
Also, stay tuned as we let you know a great way to partner with Centurion Cycling! There will be a kids cycling race that Saturday morning - any child raising $100 for either the Juvenile Diabetes Research Foundation or the Diabetes Research Institute will get free admission and a free t-shirt!
Feel free to email me at curejesse@gmail.com for sponsorship info!
Monday, May 9, 2011
And life carries on and on and on...
As I type this post the lyrics to Peter Gabriel's song, "I Grieve" come to mind.
I think of all that my family has been through in the last 15 months - changes I would wish upon no one. And yet there has been wonderful things in the midst. And within those changes are Vic and Nicole Kinnunen. Vic just completed Ironman St. George as part of the Triabetes team.
This was an EXTREMELY emotional moment when Vic received the "Cure Jesse" award.... Vic's daughter, Nicole, who is standing with him was also diagnosed with Type 1 diabetes a couple of months ago (his son, with the red shirt, is in the photo also). The "Cure Jesse" award was started in 2008 as the first team of Triabetes embarked on Ironman, awarding it to Jesse & I. It's a beautiful thing to watch new people carry on this tradition in the memory of Jesse. I want to thank all of the athletes for dedicating mile 23 of the run in Jesse's honor. I know he carried you all through.
We all go through many changes in our life, some good, some unimaginable. As I type this I'm embarking on my own life changes of a new house and a new future once again with my amazing kids, Samantha and Joey, starting a new chapter. But life carries on and on and on...
Peace and love my friends.
Saturday, April 23, 2011
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
Tuesday, March 29, 2011
How to Celebrate Jesse's 15th Birthday
In 2005 I met a young man named Sean Busby. A professional snowboarder, Sean had recently been diagnosed with type 1 diabetes. A story all his own (and can be read at www.ridingoninsulin.org) Sean was determined to find good in his diagnosis. Sean and I worked together to bring Riding on Insulin to Wisconsin in the Spring of 2005. Jesse participated in that first camp and every other Wisconsin camp after that.
In 2007 I started working at BRAVA Magazine. I met our fashion editor, Mollie Shambeau. We had a different way of working with one another (i.e. LOUD) and over the years developed a strong connection. In that time Mollie would receive several text message "merks" from Jesse. For those who don't know, a "merk" is kind of like a 1980's "made ya look". Mollie and Jesse met for the first time in November of 2009. The merks continued.
In that time Mollie had never met Sean.
When Jesse died it was never a question to me that Sean would deliver the eulogy. Over the years Sean became family to us and a big brother to Jesse. It was then that Sean and Mollie met for the very first time coming together in a time of great sadness.
Flash forward to June of 2010 when Mollie packed up her bags full of scarves and shoes and moved to nowhere, Utah, to live with Sean. Since then they have traveled the world literally...and while on an expedition in Iceland, Sean proposed. (Photo above)
While driving to this moment in Iceland, "You and Me" by Dave Matthews Band came on - a song that meant a lot to Jesse & I. Signs were everywhere.
Today I received a voicemail from Mollie checking in and "Oh, by the way, Michelle, mark your calendar, we are getting married on 9/24!" What an indescribable feeling to realize as it came from my phone...that Mollie & Sean had picked Jesse's 15th birthday for their wedding day - without even realizing it.
I believe as I've said many times that death did not silence Jesse's soul. Sometimes a solid sign from him - like this - is enough to keep me smiling.
There is no doubt to me that Jesse will be there on 9/24/2011 to celebrate both his birthday, and their new beginning.
Monday, March 7, 2011
JDRF Ride to Cure Diabetes - the official 10th ride....
Tuesday, February 15, 2011
Jessepalooza Rockfest set for Aug. 6th
Mark your calendars for the 2nd annual Jessepalooza - a rockfest honoring the life of Jesse Alswager and celebrating all he was - and is. We are very proud of all we have seen in this world due to his life and the loss of him. We continue to honor Jesse in the way he would love most - rockin' out. Join us at KEVA Sports Center in Middleton, Wisconsin on 8/6. Proceeds benefit JDRF and the Diabetes Research Institute. And if you have a bicycle...more info to come!
Great bands, great food, great Wisconsin beer - cya there!
Friday, February 11, 2011
Jen Davino graces the March issue of Triathlete Magazine
As if the news of Triabetes Captain Tiffany Heindel sporting the cover of Ohio Sport & Fitness magazine this month wasn't enough comes the news of Jen Davino's amazing article in the March issue of Triathlete Magazine. Not only am I proud to see Triabetes getting all of the attention it deserves, but two LADIES in a row - woot woot!
Congrats Jen!
/blog/2011/2/11/triathlete-triumphs-over-diabetes.html
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Thursday, February 3, 2011
More Lasagna Please - the last chapter
Today marks one year since we lost Jesse. So much has happened in the one year that is positive. It has made me realize the amazing friends I have in this world. It has brought people together that wouldn't have (Sean and Mollie). It has changed the course of people's lives. It has made me realize that I didn't have a CLUE what real grief was and that I never really did completely understand the loss of a child for others until my own loss. I wish I didn't know or understand what they feel. But I do. I stand in awe thinking of how many people rushed to be my side - people I didn't expect to help, helped. And sadly, a few people I thought would be there to hold me up, failed the most. Sad but true, but as Jesse reminds me - I cannot expect some people to be capable of something they are incapable of. It is their loss.
I have spent the last year continuing to advocate in Jesse's honor. Today I announced the 2nd Annual rockfest - Jessepalooza - taking place on Saturday 8/6 in Madison Wisconsin (jessepalooza.org). Its a positive vibe on a day that is very hard for us - the one year anniversary of his death.
I have watched others this year lose their children to type 1 diabetes. So many that I sometimes even forget their names. Some of them (those who have lost) have become some of my closest and dearest friends and today I also think of them. My text messages, emails and facebook has been an outpouring of love and support. And instead of crying most of the day I have looked at the messages and realize how many people Jesse touched in his lifetime - and now beyond.
Jesse is a testament that death does not silence the soul.
I have spent the last year writing a book on grief called "More Lasagna Please." The lasagna represents all the love that pours into your house when you lose someone. They bring you lasagna (love) and your freezer is full. It is to remind people that we do not need a freezer full of lasagna, we need lasagna brought to us for the rest of our lives. It is about the real grieving process not so much about God or life after death, but about tying your shoes, people who tick you off when they mean well, and just getting through Tuesday. It is meant to be read by the person who just experienced a significant loss AND the person trying to help them. I wrote my last chapter today and I leave you with my last chapter rough draft:
-----
Wednesday is Just Wednesday – 1 year later
When I started this book a year ago it always occurred to me that while I really wanted to focus on the first six months of grief, I would want to follow up on the exact date of our first anniversary. I know when this was all happening to me I wanted someone – anyone – to tell me that I would feel something other than pain.
I hope some of you have skipped ahead to this chapter to see that indeed there is some relief.
As I write this today there are reminders everywhere of that fateful day. I had wondered how horrifying this day would be, how I would spend it, who would I spend it with. I knew I would not be spending today reliving that horrible nightmare. No, that slideshow still resides in the back of my mind trying to ooze out throughout my days but today cannot be a day to torture oneself or torture those around me. And strangely I find today nowhere near as bad as the hellish month between Thanksgiving and Christmas. Interesting to me – and surprising.
Instead I spent the day reflecting. In the past year I discovered the color blue is the color of God. Oh, man, did you just wince? Don’t wince! I’m not a person all wrapped up in bible thumps. I’m a person who on this one year of journey has discovered little touches of beauty. When referring to blue I recall thinking at one time stating that grief is like going through your whole life without seeing the color blue but now blue is everywhere. When I said that I meant metaphorically that blue is everywhere – grief is everywhere – but until you truly have to fathom the unimaginable, you can’t possibly understand other people’s grief. Not really. You can try but I’m here to tell those of you who are helping others through their grief that you are right when you wonder if you know what we are feeling – no way. And God help you, I hope you never do. But later I was interviewing a wonderful woman from a national radio show who remembered seeing my story time and again on the news and while telling her my blue reference she said, “You know Michelle, blue is a reference to God.” So is it ok for me – and you – to see a little bit of God over this last year? For me that is ok. For you it can be whatever you need – I don’t judge!
I want to remind you, my dear friend the reader that as you get through your first days, first weeks, first months and you wonder, “Will I ever breathe again?” I’m here to tell you that unfortunately, your breaths are still sharp with pain and reminders of your loss are everywhere. That is a harsh reality. But I can tell you that while those first weeks I couldn’t get through “Wednesday” because “Wednesday” was a deafening reminder that my son died a week ago, two weeks ago, 3 weeks ago. And now? Wednesday to me is just a Wednesday. So I’m here to tell you that after a year there IS relief even if it is in small steps.
My friend Laura who you learned about so early in this book who’s words and guidance got me through those first days, those first months and this first year just popped up on my facebook with the words, “I love you Michelle who sees Blue now and is beautiful and loving and full of light!” It makes me reflect that just like as he did in life, in death he brought me beautiful people, amazing growth and a year more of my journey. If Jesse were here physically there would be no Laura in my life and she is a gift. I think about the other families I have met this year who lost their children to diabetes. These parents are strong fighters filled with so much love that I can’t imagine my life without them. The community that I was once part of – the huge diabetes community – embraced me rather than discarding me when I thought most I no longer fit. Instead I became someone they came to for advice no matter how strange I thought they would want advice from the woman who’s son died, not who lived. A gift from them.
The odd moments continue but they are easier to handle. Today I had a new intern start at the magazine under my guidance. Jesse’s death remains an awkward thing, I mean, am I supposed to fully disclose his death right away? Do I not mention it? What’s the right etiquette? In this situation my intern popped in today and we were talking about event planning. We started talking about kids and what kind of music they listen to. I started to talk about how my daughter prefers new music and that my teenage son “liked” heavy metal and that my youngest son was still forming an opinion. It lured us into a discussion of video games while I sat uncomfortably feeling almost as if I was lying to her by not telling her that my son had died. She was after all standing across from me listening to me detail all three of my children’s musical taste and now video gaming. I said, “I have this event in the summer in honor of my son called Jessepalooza. We gave away a private tour of Raven Software.” Without a blink but with quite a bit of obvious misunderstanding she said, “I bet he just died when he got that!” I knew this moment was going to be more painful for her than me. Split second thinking and me blurting, “I’m so sorry, and please do not feel horrified, you couldn’t know, but my son Jesse died a year ago today.” Horrified she was. I’m afraid our uncomfortable moments will continue until someone writes more clearly about death etiquette.
I think of my family. His death brought us together, tore us apart and today I am happy to tell you that my family is intact once more. We realized through this year that we needed each other and no matter what you have to stick together. I’m grateful for them.
My kids. What can I say here without choking up? My 17 year old daughter has shown so much grace, strength and love that I am in awe of her. Don’t get me wrong I don’t want to ever portray a teenager as perfect, I think that might be against the law, but her view on the world overwhelms me sometimes – not jaded and sad, but full of life and memories of Jesse. My 10 year old son who has gone through so much in this year, my silent one who held all that pain inside. I hope he continues to journey in the right direction and hope that he continues to remember his brother through stories, videos and good times. Maybe you are reading this early in your grief and I hope this brings you some comfort as you look at your children and worry about their future and immediate pain. You will help get them through, keep trudging.
I wish I could tell you that you’ll be truly ok. I do. But I’ve learned that grief is a son of a bitch. It bites you right in the ass when you least expect it and sometimes you will have to keep it in line all by yourself despite all the best intentions by friends and family because only you, my friend, stand in those shoes. I’m still healing every day and I wish you the same healing strength. Who knows, maybe we’ll meet again in 5 years? I’ll bring the garlic bread – you bring the wine."
Love to you all, and thanks for sticking with me.
Michelle
I have spent the last year continuing to advocate in Jesse's honor. Today I announced the 2nd Annual rockfest - Jessepalooza - taking place on Saturday 8/6 in Madison Wisconsin (jessepalooza.org). Its a positive vibe on a day that is very hard for us - the one year anniversary of his death.
I have watched others this year lose their children to type 1 diabetes. So many that I sometimes even forget their names. Some of them (those who have lost) have become some of my closest and dearest friends and today I also think of them. My text messages, emails and facebook has been an outpouring of love and support. And instead of crying most of the day I have looked at the messages and realize how many people Jesse touched in his lifetime - and now beyond.
Jesse is a testament that death does not silence the soul.
I have spent the last year writing a book on grief called "More Lasagna Please." The lasagna represents all the love that pours into your house when you lose someone. They bring you lasagna (love) and your freezer is full. It is to remind people that we do not need a freezer full of lasagna, we need lasagna brought to us for the rest of our lives. It is about the real grieving process not so much about God or life after death, but about tying your shoes, people who tick you off when they mean well, and just getting through Tuesday. It is meant to be read by the person who just experienced a significant loss AND the person trying to help them. I wrote my last chapter today and I leave you with my last chapter rough draft:
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Wednesday is Just Wednesday – 1 year later
When I started this book a year ago it always occurred to me that while I really wanted to focus on the first six months of grief, I would want to follow up on the exact date of our first anniversary. I know when this was all happening to me I wanted someone – anyone – to tell me that I would feel something other than pain.
I hope some of you have skipped ahead to this chapter to see that indeed there is some relief.
As I write this today there are reminders everywhere of that fateful day. I had wondered how horrifying this day would be, how I would spend it, who would I spend it with. I knew I would not be spending today reliving that horrible nightmare. No, that slideshow still resides in the back of my mind trying to ooze out throughout my days but today cannot be a day to torture oneself or torture those around me. And strangely I find today nowhere near as bad as the hellish month between Thanksgiving and Christmas. Interesting to me – and surprising.
Instead I spent the day reflecting. In the past year I discovered the color blue is the color of God. Oh, man, did you just wince? Don’t wince! I’m not a person all wrapped up in bible thumps. I’m a person who on this one year of journey has discovered little touches of beauty. When referring to blue I recall thinking at one time stating that grief is like going through your whole life without seeing the color blue but now blue is everywhere. When I said that I meant metaphorically that blue is everywhere – grief is everywhere – but until you truly have to fathom the unimaginable, you can’t possibly understand other people’s grief. Not really. You can try but I’m here to tell those of you who are helping others through their grief that you are right when you wonder if you know what we are feeling – no way. And God help you, I hope you never do. But later I was interviewing a wonderful woman from a national radio show who remembered seeing my story time and again on the news and while telling her my blue reference she said, “You know Michelle, blue is a reference to God.” So is it ok for me – and you – to see a little bit of God over this last year? For me that is ok. For you it can be whatever you need – I don’t judge!
I want to remind you, my dear friend the reader that as you get through your first days, first weeks, first months and you wonder, “Will I ever breathe again?” I’m here to tell you that unfortunately, your breaths are still sharp with pain and reminders of your loss are everywhere. That is a harsh reality. But I can tell you that while those first weeks I couldn’t get through “Wednesday” because “Wednesday” was a deafening reminder that my son died a week ago, two weeks ago, 3 weeks ago. And now? Wednesday to me is just a Wednesday. So I’m here to tell you that after a year there IS relief even if it is in small steps.
My friend Laura who you learned about so early in this book who’s words and guidance got me through those first days, those first months and this first year just popped up on my facebook with the words, “I love you Michelle who sees Blue now and is beautiful and loving and full of light!” It makes me reflect that just like as he did in life, in death he brought me beautiful people, amazing growth and a year more of my journey. If Jesse were here physically there would be no Laura in my life and she is a gift. I think about the other families I have met this year who lost their children to diabetes. These parents are strong fighters filled with so much love that I can’t imagine my life without them. The community that I was once part of – the huge diabetes community – embraced me rather than discarding me when I thought most I no longer fit. Instead I became someone they came to for advice no matter how strange I thought they would want advice from the woman who’s son died, not who lived. A gift from them.
The odd moments continue but they are easier to handle. Today I had a new intern start at the magazine under my guidance. Jesse’s death remains an awkward thing, I mean, am I supposed to fully disclose his death right away? Do I not mention it? What’s the right etiquette? In this situation my intern popped in today and we were talking about event planning. We started talking about kids and what kind of music they listen to. I started to talk about how my daughter prefers new music and that my teenage son “liked” heavy metal and that my youngest son was still forming an opinion. It lured us into a discussion of video games while I sat uncomfortably feeling almost as if I was lying to her by not telling her that my son had died. She was after all standing across from me listening to me detail all three of my children’s musical taste and now video gaming. I said, “I have this event in the summer in honor of my son called Jessepalooza. We gave away a private tour of Raven Software.” Without a blink but with quite a bit of obvious misunderstanding she said, “I bet he just died when he got that!” I knew this moment was going to be more painful for her than me. Split second thinking and me blurting, “I’m so sorry, and please do not feel horrified, you couldn’t know, but my son Jesse died a year ago today.” Horrified she was. I’m afraid our uncomfortable moments will continue until someone writes more clearly about death etiquette.
I think of my family. His death brought us together, tore us apart and today I am happy to tell you that my family is intact once more. We realized through this year that we needed each other and no matter what you have to stick together. I’m grateful for them.
My kids. What can I say here without choking up? My 17 year old daughter has shown so much grace, strength and love that I am in awe of her. Don’t get me wrong I don’t want to ever portray a teenager as perfect, I think that might be against the law, but her view on the world overwhelms me sometimes – not jaded and sad, but full of life and memories of Jesse. My 10 year old son who has gone through so much in this year, my silent one who held all that pain inside. I hope he continues to journey in the right direction and hope that he continues to remember his brother through stories, videos and good times. Maybe you are reading this early in your grief and I hope this brings you some comfort as you look at your children and worry about their future and immediate pain. You will help get them through, keep trudging.
I wish I could tell you that you’ll be truly ok. I do. But I’ve learned that grief is a son of a bitch. It bites you right in the ass when you least expect it and sometimes you will have to keep it in line all by yourself despite all the best intentions by friends and family because only you, my friend, stand in those shoes. I’m still healing every day and I wish you the same healing strength. Who knows, maybe we’ll meet again in 5 years? I’ll bring the garlic bread – you bring the wine."
Love to you all, and thanks for sticking with me.
Michelle
Wednesday, February 2, 2011
A year later - we miss you, Jesse.
A new slideshow of our Jesse. If you want the direct link to it on youtube, here it is. Better quality:
http://www.youtube.com/watch?v=MnCqxSyNanY
http://www.youtube.com/watch?v=MnCqxSyNanY
Sunday, January 30, 2011
Team Western Wisconsin trains indoors, and a Triabetes Captain gets a cover!
On to positive mojo, peeps. Today I spent the afternoon doing some indoor cycling at Speed Cycling -owned by Petra Kilian-Gehring, a JDRF Ride to Cure Diabetes participant herself. We've decided to keep the team rolling in the off season here in Wisconsin. It is so fun to see everyone all season long and keep the love going.
Michelle Reddington has stepped up by leading our classes and when I heard her yell into her microphone, "ALSWAGER! You should be breathing too heavy to be TALKING!" I couldn't help but grin and remember a different group I once rode with indoors to train for past years. How I miss riding with Vaughn Vance! Luckily there are new riders who are just as willing as Vaughn to get in trouble with me during class!
We are really looking forward to doing our 100 mile ride in La Crosse, Wisconsin this year and I'm excited to know a lot of my past rider-friends will be joining us (Welcome back Kansas City Smack Train!).
And in other news, congrats to Triabetes Captain, Tiffany Heindel who is currently sporting the cover of Ohio Sports & Fitness! I can't help but grin when I see Triabetes continuing to shine....
Saturday, January 29, 2011
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. :)
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. :)
Sunday, January 2, 2011
a year of thanks
Thank you to Amy Eager for showing up at my house at 8:30 am on 2/4.
Thank you to Jen Engel for pants.
Thank you to MyMenu for a freezer full of food.
Thank you to Sarah Faust for m&ms, maps of Spain and other things that were so abnormal during grief, it became a relief to receive them.
Thank you to Sean, Sam and Karly for delivering the best eulogies a mom could ask for.
Thank you to every tv and radio station in this town who put aside all political stuff and ALL covered event related to Jesse because in their hearts, they knew the reason was worth it.
Thank you to Econoprint who transformed Mark Gray's caricature of Jesse in to Jessepalooza brand I will be proud to use for all the years to come.
Thanks to Tom Karlya for pulling me into the Diabetes Research Institute and keeping me motivated to do something bigger.
Thank you to my kids for being so damn strong.
Thank you to Charles for getting up that painful day and setting up the memorial fund and having the mental capacity when I didn't.
Thanks to Bob Gorsuch for allowing my family to grieve rather than worrying about how we would pay for a funeral.
Thanks to everyone who came to the Lazy Oaf to help with the memorial fund.
Thanks to the most wonderful six people - Derek, Kye, Paul, Aaron, Andrew and Bob who had the responsibility as pall bearers.
Thanks to all of the 13 year olds who continue to friend me on facebook and allow me a window into Jesse's life as a teen.
Thanks to all my coworkers who tried not to flinch when I was crying in my office trying to get through those early days.
Thanks to all my friends who got on bicycles and rode in Jesse's honor in Death Valley.
Thanks to those at the helm who made 23 a mile of silence for this year and the years to come.
Thanks to Joe Brady for creating a meaningful slideshow and for giving me Jesse's used test strips during my Oscar Drama Moment one mile from the top of Jubilee Pass.
Thanks to Sean Busby for happening to be standing at the Jubilee Pass sign when it was time to put Jesse's test strips down those rusty metal posts and us knowing it will always be there.
Thanks to all at JDRF who had the balls to put politics aside and support me.
Thanks to all of you who keep me motivated to complete my book on this experience.
Thanks to Laura Kuhl who tells me that Jesse misses peanut butter and jelly sandwiches.
Thank you to anyone who has not expected me to be "normal" because "enough time has gone by" when it hasn't been enough time gone by.
Thank you to the Ohms for helping me understand that time does not erase a person's face, smile and sounds.
Thank you to my old grade school and high school friends who have taken the time to travel to Madison more than once just to make sure I remember how to have fun.
Thank you to John Moore, Anne Findly and Gabby Cezar for being here when I wasn't expecting it.
Thanks to Terese Berceau and the rest of the Wisconsin Assembly for honoring Jesse and I as hometown heroes.
Thanks to Paul and Kye for vowing to always be Joey's big brothers for Jesse.
Thanks to Bill Bathke who's hug meant a lot before he lost his own life this year.
Thanks to my entire ride group for allowing Jesse to be a major part of why we ride even though I know you ride for very personal reasons of your own.
Thanks to national ride coach Tim St Clair for being a big mushy goo when it comes to talking to me.
Thank you to Sara Rankin for opening up about her own son's death to help me through those first days.
Thanks to Jen and Bob for allowing me to call them when it's 2 am and I need someone who gets it, and understands why the ornament aisle hurts like hell.
Thanks to John Flint who said, "Dude, I really don't want to be the guy you write about in your book about the people who say dumb things to you." :)
Thanks to the Judd/Blanchard family for turning the support I had for the loss of their family into helping my family through ours.
Thank you to Jesse for teaching me that I cannot expect someone to be capable of something they are incapable of. (Keeping my anger in check)
Clearly I have forgotten to mention many...so to those I thank you as well. Through it all there have been disappointments, life is full of them after all. But the biggest thank you goes to all of you for never expecting a thank you and for THAT, I thank you.
Thank you to Jen Engel for pants.
Thank you to MyMenu for a freezer full of food.
Thank you to Sarah Faust for m&ms, maps of Spain and other things that were so abnormal during grief, it became a relief to receive them.
Thank you to Sean, Sam and Karly for delivering the best eulogies a mom could ask for.
Thank you to every tv and radio station in this town who put aside all political stuff and ALL covered event related to Jesse because in their hearts, they knew the reason was worth it.
Thank you to Econoprint who transformed Mark Gray's caricature of Jesse in to Jessepalooza brand I will be proud to use for all the years to come.
Thanks to Tom Karlya for pulling me into the Diabetes Research Institute and keeping me motivated to do something bigger.
Thank you to my kids for being so damn strong.
Thank you to Charles for getting up that painful day and setting up the memorial fund and having the mental capacity when I didn't.
Thanks to Bob Gorsuch for allowing my family to grieve rather than worrying about how we would pay for a funeral.
Thanks to everyone who came to the Lazy Oaf to help with the memorial fund.
Thanks to the most wonderful six people - Derek, Kye, Paul, Aaron, Andrew and Bob who had the responsibility as pall bearers.
Thanks to all of the 13 year olds who continue to friend me on facebook and allow me a window into Jesse's life as a teen.
Thanks to all my coworkers who tried not to flinch when I was crying in my office trying to get through those early days.
Thanks to all my friends who got on bicycles and rode in Jesse's honor in Death Valley.
Thanks to those at the helm who made 23 a mile of silence for this year and the years to come.
Thanks to Joe Brady for creating a meaningful slideshow and for giving me Jesse's used test strips during my Oscar Drama Moment one mile from the top of Jubilee Pass.
Thanks to Sean Busby for happening to be standing at the Jubilee Pass sign when it was time to put Jesse's test strips down those rusty metal posts and us knowing it will always be there.
Thanks to all at JDRF who had the balls to put politics aside and support me.
Thanks to all of you who keep me motivated to complete my book on this experience.
Thanks to Laura Kuhl who tells me that Jesse misses peanut butter and jelly sandwiches.
Thank you to anyone who has not expected me to be "normal" because "enough time has gone by" when it hasn't been enough time gone by.
Thank you to the Ohms for helping me understand that time does not erase a person's face, smile and sounds.
Thank you to my old grade school and high school friends who have taken the time to travel to Madison more than once just to make sure I remember how to have fun.
Thank you to John Moore, Anne Findly and Gabby Cezar for being here when I wasn't expecting it.
Thanks to Terese Berceau and the rest of the Wisconsin Assembly for honoring Jesse and I as hometown heroes.
Thanks to Paul and Kye for vowing to always be Joey's big brothers for Jesse.
Thanks to Bill Bathke who's hug meant a lot before he lost his own life this year.
Thanks to my entire ride group for allowing Jesse to be a major part of why we ride even though I know you ride for very personal reasons of your own.
Thanks to national ride coach Tim St Clair for being a big mushy goo when it comes to talking to me.
Thank you to Sara Rankin for opening up about her own son's death to help me through those first days.
Thanks to Jen and Bob for allowing me to call them when it's 2 am and I need someone who gets it, and understands why the ornament aisle hurts like hell.
Thanks to John Flint who said, "Dude, I really don't want to be the guy you write about in your book about the people who say dumb things to you." :)
Thanks to the Judd/Blanchard family for turning the support I had for the loss of their family into helping my family through ours.
Thank you to Jesse for teaching me that I cannot expect someone to be capable of something they are incapable of. (Keeping my anger in check)
Clearly I have forgotten to mention many...so to those I thank you as well. Through it all there have been disappointments, life is full of them after all. But the biggest thank you goes to all of you for never expecting a thank you and for THAT, I thank you.
Labels:
JDRF,
Jesse Alswager,
trent nicholson,
Triabetes,
type 1 diabetes
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