Tuesday, February 23, 2010

A note from Jesse

So I haven't had the best day. I would call it a "beating myself up" day. I finally go to the mailbox to find a letter from his teacher. Her note says:

Hi, Michelle. Here's Jesse's writing assessment - so sweet!"

It goes on to tell me that his items await me at school that they cleaned out his locker and that they have created a display case set up as a memorial to Jesse and that kids stop by it every day to pay respects.

I open up his assessment and know full well that Jesse sent it to me in his own little handwriting. It goes like this:

My mom is a very courageous person. She does many things to show how courageous she is. She always does brave things to make my life easier, even if they are difficult.

My mom's name is Michelle Alswager. She always does things to help me. One of the biggest things is she applied for a job at JDRF, a place where they raise money for research about diabetes. She got the job and helped a lot in the community.

My mom is also courageous for her athleticism. In 2006, she began intense training to bike one-hundred and five miles in Death Valley, California. She would bike sixty-five miles every week about three times. She went to Death Valley and completed the one-hundred and five miles in the desert. She enjoyed it so much that she did it four more times!

Then she wanted a harder challenge. SHe decided to attempt Ironman, Madison, WI, a triathlon. Except she couldn't swim and she didn't run. But that did not stop her. She began swimming lessons and started running. She finished Ironman on time. I was so proud!

She is currently working on a making a documentary. It is about people with diabetes doing Ironman. She is working so hard on it. It is almost done. The documentary has taken about two years of filming and will play around the world in film festivals when it is done.

This year my mom got a new job at Brava Magazine. She wanted the job so much! Unfortunately, Brava closed down but my mom gathered her co-workers and planned a way to save the business. They found a new owner and saved Brava. Those are some reasons why my mom is a very courageous person!

It was like getting the biggest hug on the planet....

Tuesday, February 16, 2010

For those of you who never met Jesse

Jesse did a lot of advocacy in his 13 years. Please enjoy these short commercials he filmed with his good friend, Aaron Liebe (also diagnosed at age 3) over the years to support a fundraiser called "thunder run". If you can get through the commercials, please enjoy the beginning of the outtakes. I smile EVERY time because listening to him talk about bugs, and his shirt that is too big, and Aaron screwing up his lines...THAT was Jesse.

Friday, February 12, 2010

Life Sentence - Jesse Alswager passes away at age 13

I don't have words. But I know I have to give you some. It has now been 10 days since Jesse died unexpectedly to complications of his type 1 diabetes. Tonight my family - now only 4 - went to dinner to try to feel some sense of normalcy...

Those first few days I kept saying to everyone in a fog, "How can I go on telling people its not a death sentence? I've lied to them..."

Joe Brady, a good friend and a Triabetes athlete showed up the next day with a poem he claims was written with divine intervention. Framed, it sits next to me, I write it below:

Life Sentence

Did I say these words to a hundred,
a thousand parents?

"My name is Michelle Alswager
and my son, like your child, has type 1 diabetes
but don't worry,
it's not a death sentence."

My son Jesse, so little, diagnosed at age three
and so early gone at thirteen
I ask myself, what will I tell the parents now?
With eyes closed, I see my son..and know the answer:

Refuse with me to feel sorry for him
For he lived his diagnosis as a life sentence
with no time limit guarantee.

A life sentence to celebrate his days
touching others with his smile and patient ways
chilling with his school friends and neighbors
advocating with Governor, Congress, and doctors to find the cure.

Hanging with Dad at neighborhood parties
loving music, playing his sweet-sounding life melody
carving sharp, crisp lines with Sean on snowy slopes
laughing with brother and sisters at mom's corny jokes.

For him, beating the disease was to never
compromise, yield, submit or succumb
to an affliction whose victories
are counted with each lost possibility and
"can't do 'cause I've got type 1."

Never did he say "pity me" or "it's not fair"
Instead we heard "what's next?" and "let's go" and "cool!"
as he lived his life sentence.

So Please hear me, dear parent with newly diagnosed type 1,
not once did my son yield, submit or succumb
his life was rich, vibrant, a celebration...
Jesse didn't lose - he won.

~Joe Brady

Godspeed Jesse. We keep fighting for you and mom misses you and wishes you were here.