Fighting for a Cure

I wanted to take the time out to send a note out--yes its long--but its worth it. You all more than likely know what we deal with daily in our home.  Its not a typical day.  Its not get up, eat breakfast, go to school, etc.  Its far more than that in our home.  And it will continue to me more, for the rest of Colton's life.



Colton was dx'd with diabetes in 2000. As I always say, its been a long 10 years, but we've made it through. We've made it through, b/c of the Lord's hand being upon our family. We have been through many trials and bumps in the road and days that have been complete and total hell--I speak that out of total honesty.   In my own words--thats the way that I honestly see it. Through these years I've also met some great people--people who either have D themselves, or they have kids with D, just like Colton.  And I don't take it lightly that I've met these people.  It is through our awesome God that I have met these people.  Why? Because He KNOWS that I as a mom need these other moms--to vent and to cry and just sit and talk to--because our kids have a common bond--Diabetes.

Several years ago, I made it my mission to start a scrapbook so to speak of 'famous' people with diabetes.  I sat down and I researched and googled and researched some more on the computer looking for information for these people.  I went to their websites, sat down and typed them a letter, and I shared with them Colton's story. To my suprise--I heard back from every one I contacted, but one.  I was thrilled and suprised all at the same time.  Why? Because those people, even in the midst of their busy lives, they sat down and made a point to write me back. 

Michelle McGann, Kellie Kuehne, Mark Lye, and of course, Nicole Johnson to name a few.  The one to have the most influence on Colton so far, has been a professional snowboarder, Sean Busby.  I came across his website after doing some more research on more people with diabetes.  I emailed him, and heard from him a few days later.  He sent Colton a letter, as well as some stickers with his logo, and a beanie hat--which he wears ALL the time, at least in the winter.  While he's never met Sean yet, he looks up to him a LOT.  He can't wait to meet him some day. 

Back in February, I had seen that Sean had posted something on his facebook that caught my eye immediately.  I was concerned, so I sent him an email and asked him what was up.  However, I was too antsy and anxious to hear back from him, so I googled the name I saw on Sean's post.  I was shocked and overcome with emotion immediately.  A very good friend of Sean's had passed away.  This young man  was only 13. He had battled diabetes since 2000----same year Colton was dx'd.

Jesse Alsweger, age 13, passed away on February 3.  His battle with diabetes was over. It broke my heart to hear it-I have NO clue who these people are, but at the same time, I feel like I do in fact know them. There were just a few months in his and Colton's age. In the anniversary of his dx's of learning of D--Jesse was dx'd in March 2000, Colton in June 2000. Jesse was 3, Colton was just 2. 


Jesse's mom, Michelle is a strong woman. In the short time that I have 'known' her through facebook, she is one of the strongest women I know.   While i don't know what tears she sheds at night when she falls asleep, I know the tears that I share--for her and the loss of her son to a horrible disease that has NO CURE. I cry because he has a brother and a sister who miss him greatly. I cry because he has many MANY friends who no longer have their friend to hang out with . Some of them have diabetes, some of them dont. But all the same, there is a loss their in the lives of many. I myself--I have NEVER met them, but i feel as if I know them.

What I am going to share next, is her latest journal on Caringbridge.org.  I read each and every journal update that she posts.  I can not tell you the  pain that I feel in my heart for her and her family and all of their friends.  Jesse was a HUGE advocate for diabetes, even at his young age.  That in itself to think of, is encouraging.  Michelle is a huge advocate as well.  She has fought since day one of finding out that Jesse had diabetes.  And she continues to fight for that cure.

 This mom has been in MY shoes, as the mother of a child with diabetes. She KNOWS what it feels like to wonder what those numbers are doing.  She KNOWS what its like to think, "Did he bolus?"  She KNOWS!!  Just like 5 other moms that I personally know, who also have kids who have diabetes.   No we arent the kids, or the adults who have it, but we are MOTHERS to these kids. God blessed us with these special gifts. But, thats just it--we are their mothers. We are human, and we have emotions. Anyone who knows me KNOWS that I am VERY emotional--about my faith, my family, my kids--and about my son. He has the same disease as millions of others. It has no cure. NO CURE. What he did today,yesterday, the day before that, last week, etc,  he must do every single day for the rest of his life. And for the rest of his life, I as his mother will ask him, "How are your numbers?" And I as his mother will wonder, are they really ok?
Periodically I get that 'feeling' and I will ask him for his pump and his meter and I will go back through the history.
Ive told many of  you of the day to day struggles we have with Colton.  Some days are fine. Some days are bad.  Some days I get so angry that all I want to do is to scream at the top of my lungs, I HATE THIS!! And, sometimes, I do.  At least on the inside.
 I end this post with Michelle Alswager's journal post from yesterday. PLEASE take a moment and really focus on her words.  As I sat and read them myself, my heart sank, ached and raced.  I could immediately invision each detail of her post.  I sat and read it to Kyle from my phone.  I held back the tears as long as I could, but by the end, I broke and I just sobbed.  And its hard to avoid the tears at this very moment.   I emailed her yesterday to get the OK to share this in my blog.  And she graciously said, YES.
Thank you Michelle.   Thank you for continuing to fight for everyone who deals with this disease. 


Michelle Alswager's letter:


This is the letter I wrote to be given to the International Board of JDRF today.


Dear International Board Members, JDRF:




Today I sit down to write a letter I never dreamed I would have to write. A letter about my son, Jesse, who many of you have already known about over the last 10 years in his advocacy both nationally and within the State of Wisconsin. But here I am today.


Type 1 diabetes to me is a timeline – a series of numbers – that I will never forget. On 3/3/2000 my beautiful little boy was diagnosed with type 1 diabetes at the age of 3. Tiny, he was. Strong, we were. I remember greeting people one by one in that E.R. to tell them the worst day is upon our family and our lives would be changed forever. I remember watching the nurse poke his little finger and with one glance of her sad face I knew it was type 1 diabetes. I was no stranger to the disease since my aunts and uncles had all grown up with type 1. But since they were all in their 60s and didn’t take care of their bodies due to lack of education, lack of medical technology, this most certainly would be ok for MY son, MY family because we would be strong and we would manage this disease.


I called JDRF from the hospital room because even though I was 4 months pregnant with my son, Joey, I was not going to wait to get on the path to helping him by trying to find a cure. You see, a mom does this for hope and a meaning. They want to look their children in the eye and say, “Son, I’ve done everything I can to find a cure for your diabetes.”

I’ll flash through my 10 years here – several Walk to Cure Diabetes teams – a moderator for the Online Diabetes Support Team (ODST) with my dear friend, Ardy – The International Development Committee – creator of snowboard camps for kids- participant in Children’s Congress 2003 - the Executive Director of a local chapter – a Ride to Cure Diabetes participant for 7 rides – a gala attendee – and most recently a documentary about 12 people with type 1 diabetes doing Ironman – Triabetes.


On 2/3/10 it was a day just like any other day. Jesse and I had stayed up late to watch Kindergarten Cop and I shewed him to bed because he had school in the morning. At 6:30 am I woke him. He said, “Mom, I’m not feeling that great.” Anyone who has a type 1 child knows that it clearly sounded like a sluggish diabetes day. And I went to work knowing his meter was in one pocket, his phone in the other. “How are your blood sugars?”

“Fine mom.” The last words I ever heard out of my beautiful loving son’s mouth. It will haunt me for the rest of my life. At 11:00 am he gave himself insulin. At 3:30 pm when his dad came to get him, he was lifeless, not breathing and we knew a pulse 45 minutes later would be futile. I will save you the details only to give you this: the scene in the E.R. was the same as 10 years ago, the same waiting room, the same people greeted and with the same feeling of dread – the worst day of my life.


Diabetes took our lives. All of us. It took our lives the day he was diagnosed and it took it again when it killed him.


Here’s where I hope you will listen to me. Pay attention. Look at Rik Bonness across the room, who met Jesse in 2003 at Children’s Congress – a boy who made such an impact on Rik, he talks about him in his speeches. Look across at Ardy Johnson, a woman who was always forced to handle the “tough” ODST cases – the deaths of children. Of course I can now relieve her of this burden as this burden is mine and if anything I make it my mission to give back.


In all of my years I have met so many courageous children. But in the same breath I know they struggle so painfully with this disease. After 10 years of this 24/7, I don’t care if you are 13, 23, 33 or 53…you are damn tired. You want to pretend it is not real. You yell, “Mom my blood sugar is 172” when it is really 382. You know why? Because It is NO PRESSURE. You keep several meters and have one “special” for your doctor visits. If you know you are high, you wouldn’t dream of putting it on the “doctor” meter because you feel judged. Don’t believe me? Ask them.


Now is the time to help them. We need to STOP treating blood sugars as good or bad. We need to educate our endocrinologists to assist instead of judge.


They lie because they want freedom. Freedom of this disease.


And before I end my one time before you, I say this: we always keep our mission at the forefront. How does helping others deal with this disease raise money for research?


I will say time and time and time and time again…it is the people for the love of people, that raises money for research.


I will climb my bike again to ride Death Valley, this time for my son, a son I had hoped would join me when he turned 13. Now 13 is gone for him. And now 22 is gone for Lisa Vise. And 23 is gone for Seth Wolf.


I am happy to be the loudest advocate on the planet if it stops just ONE family from gathering up every last meter, pump, syringe, cgm, ketostrip, diabetes book or diet soda into huge boxes in their dining room next to their son’s funeral thank you notes – because I’d rather have a boy with diabetes, than no diabetes at all.


I ask you to step in my shoes for 30 seconds. Then help me help you help families.


Godspeed Jesse. We love you and miss you.


Michelle Page-Alswager