Only Diabetes?

  

Here's the deal folks.  Diabetes is a awful, horrible, nasty, disgustingly annoying disease.  I hate it.  I don't just hate it, I LOATHE it.  I have hated it for the last 14 1/2 years.  I have lived every single day since June 10, 2000 HATING DIABETES!!!

As a mom of a kid who has type 1 diabetes...I hate that phrase in that picture.  I've heard it many times--I have had those exact words spoken to me ABOUT my son.  And let me tell you, that is NOT something you should EVER EVER EVER say to ANYONE who has diabetes, or has a family member who has diabetes-especially if they are a young child.  While it may seem like a simple harmless phrase, stop and think before you speak those words.

I was scrolling through my Facebook feed earlier when I saw this picture above.  

And this was my first thought:  

Omg!!! YES!!

Read the words on this pic and let it sink in!!

It's not "just diabetes"

Don't ask me, "can't he just  take insulin or pills or something??"

Or "will he ever get over it?"

NO NO NO NO NO!!

People it's not just diabetes-it's a deadly disease--A SILENT KILLER!!

I also hear the following questions:1)Can he just take pills? Um no-you can not take insulin in pill form! Why not? Because as soon as the pill hit your gut, all the acid would interact with it and you'd puke it back up.  (sorry for that graphic but its a fact we were told from day 1!)

2) Can't  he just take insulin or something like that?  Uh, YES, he MUST take it every single day via multiple insulin shots, OR use an insulin pump, which requires changing infusion sites every 2-3 days.

3)Will he ever grow out of it? Will it just go away?No, it won't just go away, or disappear suddenly and he will NOT grow out of it.  

His pancreas is DEAD.  ZIP ZILCH NADA!  It DOES NOT WORK!  It doesn't produce ANY insulin at all, not one single drop.  The insulin that he takes daily is not a cure for his diabetes.  This side of heaven there is NO CURE!! 

Insulin is NOT a CURE!  It's my kids life line! 

My son is not a sports kid--he never has been.  We always thought he would play soccer or baseball, but he just never did.  There were a few times that I started to sign him up, and would talk to people about getting him signed up.  I would just mention to the coaches, "he has diabetes..."  and the response was, "Oh.. I see.." and the attitude was crappy after that, like it was a big issue, and like they just didn't want him to play.  As a result of those reactions, my son never played sports.  And that is actually OK--b/c he will tell you now, that he is not a sports kind of guy.   

Oh and wait..My FAVORITE from people, "oh well you should be thankful its not cancer!"

What the heck?!??!  That's a no brainer!!!  I am SO incredibly thankful its NOT cancer. That is also not a statement or phrase you should say to a parent of a kid with diabetes.  Why? Because it is still a DEADLY DISEASE!!!!!!!  Without insulin, he will DIE.  

He has to check his blood at the least-6 times a day.  If he's sick?  It turns into twice that.  If his glucose levels are above 250, he risks developing ketones.  And any glucose levels over 400?  You can bet money on the fact that ketones are present.  What the heck is a ketone you ask?  

 Ketones are substances that are made when the body breaks down fat for energy. Normally, your body gets the energy it needs from carbohydrate in your diet. But stored fat is broken down and ketones are made if your diet does not contain enough carbohydrate to supply the body with sugar (glucose) for energy or if your body can't use blood sugar (glucose) properly.

If ketones develop, and we don't act accordingly, and fast, the he risks diabetic ketoacidosis.  Say that 10 times fast!!  What is that??

Go here to get an idea of what Diabetic Ketoacidosis is exactly.  If it is not treated in a timely manner, it CAN be deadly.  

We're talking risking slipping into a coma.

And its not just high levels.  You have just as many issues if your blood sugars drop too low!!  Then  you risk having seizures and with each seizure, the oxygen levels in your brain go down.  

Thats just a few of the things that have to be watched with diabetes.  So yes it IS just a wee bit serious and nothing to be taken lightly or ignored or overlooked.  

Its not "OK" to say, "You only have diabetes".  And no, I don't expect everyone to understand all this, and my concern with needing to write this post.  But that goes with something I have also said many times in the last several years, unless YOU are the parent of a kid with diabetes, or an aunt or uncle of a kid with diabetes, or a grandparent of a kid with diabetes, etc..you just simply can not say or think, "Its only diabetes"  Because to US?  Its not "just diabetes."

Feelings

This is not the first time I've decided to write about feelings. After all, we do all have them. At least I think we do. I guess there are those out there who are so stone cold to everything that they don't know how to crack a smile, shed a tear, or have a good laugh.

The last time I wrote on feelings, it was simply titled "Compassion". What is that? Here's the definition of compassion: Compassion is a virtue — one in which the emotional capacities of empathy and sympathy (for the suffering of others) are regarded as a part of love itself, and a cornerstone of greater social interconnection and humanism — foundational to the highest principles in philosophy, society, and personhood.

I'll give you a few seconds to ponder and chew on that one. Go back and read it over again if you need to.

Most who know me, know I have a very tender heart. It doesn't take much to make me teary eyed. And it doesn't always have to be something sad. I have shed many tears that were happy tears. Is that a problem that I have a soft heart? It shouldn't be. I'm not blind, I've seen the look on some people's faces when I start getting teary eyed about something. Its a look of "Oh good grief, here she goes again!!!" Well, to that I say...."WHATEVER!" That's just who I am. Its the way that the Lord made me and wired me to be. It simply means that he gave me a compassionate heart.

I don't have to know someone to show compassion for them. I don't have to KNOW what they are dealing with. It does help to know though, so that I know what how to lift them up in prayer. I myself have been known to have a conversation with people and I can see the tears well up in their eyes. And then of course, here come the water works for myself. But that's what we are to do. Listen, have compassion, and love one another.

New International Version (NIV)Luke 6:31
31 Do to others as you would have them do to you

.Is that really so hard to do? Believe me, its NOT hard. I've had people in the past that I have had words with, and just not gotten along with them. I prayed and asked the Lord to help me with that. I have gone to that person, apologized for the bad attitude and asked for forgiveness. Was that hard? Uh, YA..its called letting go of pride and letting your guard down. But it goes along with Luke 6:31..b/c you treat others the way you want to be treated. I've heard people quote that, and they certainly don't practice it.

The whole point in me writing about this again, is because of the fact that as I have already said, I have a very tender heart. And when I hear of someone losing their battle, with the same disease that my son fights every single day, the compassion doesnt just go away. Instead it explodes.

Since June of 2000, I have met several families, who are also the parents of kids with diabetes. They are the ONLY ones who REALLY understand what its like to have a child with diabetes. The doctors don't understand--they say they do, but really? Do THEY really? Unless you live with it in your home, its really hard to know just what its like. I'm very thankful to have these people in my life--its not an accident. God places people in our lives for a reason.

Every minute across the world, 6 people die of diabetes… Either directly, or indirectly as the result of a complication. In total this disease is therefore the cause of almost 4 million deaths per year! Which is as many as those caused by AIDS. These are the figures put forward by the World Health Organization and the International Diabetes Federation (the IDF). It’s a genuine massacre which shows no sign of stopping http://www.destinationsante.com/

In the last 24 hours, there is a family who is hurting, and grieving for the loss of their loved one. Parents have lost a son, a sister has lost her brother, kids have lost their daddy and friends have lost a friend. That my friends, is sad. Although at the same time, we can take comfort that he is resting in the arms of Jesus and that he has a new body that is whole and he is no longer in any pain.

I have been talking to this young man's mom for a few weeks now, thanks to Face Book, I was able to find her and get in touch with her. I'd been wanting to get in touch with her for some time and wasn't sure how to. I found her on FB and was thrilled. I do not think it was an accident that I was able to find her on facebook. You see, this mom is a mom just like myself--she has fought the same fight that I fight every day, the same fight that I have fought every day since June of 2000. She knows how I feel. She knows the hurt that I feel and the anxiety that I have as I watch my kid grow up with something that I can't take away from him. I can't fix it for him. What I can do is be there for him, pray for him that he will just accept his health. I was given this child, to take care of, for such a time as this. The Lord KNEW before He gave me my son, just what road lied ahead of us. He knew. He's not going to give us anything more than He thinks we can handle. IT takes a special person to be the parent of a child with diabetes. Its a tough job, and obviously the Lord thought I could do the job. :)

Am I trying to take the sadness and heartache and turn it around on myself and my own family? Absolutely NOT. The whole reason for me to even write this is because of the fact that my heart truly ACHES for them. When I first heard he was so seriously ill and in the hospital, my heart just hurt for them. He had a stroke that was the result of Juvenile Diabetes. Just a few weeks ago, I learned of another young lady, who is the same age as my son, who went to bed one night, seemed fine, and never woke up the next morning. I learned yesterday of THREE other people just this past week, who have passed away, due to complications from diabetes.

A parent should never have to bury their child. I've heard that said several times since I was a kid growing up. We know that this world is not our home. Our life here on earth will not last forever, and that is the way that the good Lord intended things to be.

While you might think this was just a lot of jibber jabber, to me it was not. Its simply stating how I feel about things. And I as I was telling someone else earlier today, I am not going to apologize for my feelings when it comes to my son, or anyone else. As I have said, I have a soft tender heart, its a virtue that the Lord has given to me.

While chatting with another friend last night she shared this with me: I have another friend whose child has diabetes. I have seen what they have gone through and my heart bleeds for them. Their daughter has to have an insiline pack on her belly all the time and inject it at different intervels during the day. She has been in the hospital and almost lost her. I can't imagine the fear they must feel in what could happen. But that is what friends are for... to cry with us and to feel our pain. We need each other. And when we have compassion for one another that is when we are most lilke Jesus.

Invisible Illness...My 30

Because our family lives with invisible illness...and because I saw other D-moms posting this...Here's my 30:

1. The illness I live with is: not my own, but my 14 year old son’s.
   2. I was diagnosed with it in the year: He was diagnosed in 2000 at age 2 with Juvenile Diabetes
   3. But he had symptoms since: He had symptoms for at least 4 months before he was diagnosed.  I really believe he was showing signs for a good 6 months before though.
   4. The biggest adjustment I’ve had to make is:  forcing him to learn and do things himself since he IS 14, and not do them for him.
   5. Most people assume: That he doesn’t “LOOK” sick, so he isn’t.  Little do they know that there is a 24/7 battle inside him.
   6. The hardest part about mornings are: getting him to get up and remember to check his blood sugar as soon as he gets up.  Even after dealing with this for 11 years, he still has to be reminded.
   7. My favorite medical TV show is: when it was on, ER.  Sometimes I watch “the doctors” or Doctor Oz. 
   8. A gadget I couldn’t live without is: his glucose meter/insulin pump
   9. The hardest part about nights are: going to sleep especially on the nights he’s checked and he’s low, or if he’s been sick. 
   10. Each day I take __ pills & vitamins. (No comments, please)
   11. Regarding alternative treatments I: There is NO alternative treatment for Type 1 Diabetes.  You either take insulin via shots or a pump. 
   12. If I had to choose between an invisible illness or visible I would choose: Invisible.  Why?  Because he has an invisible disease, but its manageable and treated daily with his insulin. 
   13. Regarding working and career: I work part time, and my hours/job allows me to take my kids with me.
   14. People would be surprised to know: Im not as strong as I could be. The strength I have is given to me by my God every single day. It is with HIM that I have made it through every day since June 9,2000.
   15. The hardest thing to accept about my new reality has been: There is no cure.  It will NOT just go away.  He will have this the rest of his life. 
   16. Something I never thought he could do with his illness that he did was: There’s nothing he can’t do.  He can do ANYTHING he wants to.  He has diabetes but it does NOT have him.
   17. The commercials about his illness: There are NOT ENOUGH commercials that talk about Type 1 Diabetes.  They are mostly for Type 2.  People NEED to know the difference between the two. Because they ARE VERY DIFFERENT.
   18. Something I really miss doing since he was diagnosed is: We use to be really close, but he began to see me as the bad guy—b/c I was always the one doing most of his care and giving his shots in the beginning.
   19. It was really hard to have to give up: We’ve not had to give up much, because the doctors have said to let him eat what he wants, just cover it with extra insulin. 
   20. A new hobby he has taken up since his  diagnosis is:  Rubix cubes—he’s obsessed! LOL
   21. If I could have one day of feeling normal again I would: get up and go about the day without even thinking about Diabetes and the fact that its been in our lives for 11 years now. 
   22. My illness has taught me: His illness has taught me to focus on relying on the Lord to get us through the tough days—because some are harder than the others. 
   23. Want to know a secret? One thing people say that gets under my skin is: “He can eat that?? How can he eat that if he has diabetes?”  Or, “Oh, my grandma has type 2, so I know all about diabetes.”  Um, no, you don’t—type 1 and type 2 are VERY different. 

24. But I love it when people: Tell me that they are proud of how I’ve handled everything over the last 11 years, and that they are amazed at just how strong I am. 
25. My favorite motto, scripture, quote that gets me through tough times is: 1) Insulin is NOT a CURE.  2)Joshua 1:9
26. When someone is diagnosed I’d like to tell them: That it will be OK.  That God does not give us anything we can’t handle. 
27. Something that has surprised me about living with an illness is: the fact that so many people are so ignorant to the FACTS
28. The nicest thing someone did for me when I wasn’t feeling well was: Just calling and checking on Colton when he’s sick and asking if there’s anything we need. 
29. I’m involved with Invisible Illness Week because: My son has an invisible disease that is a constant battle inside him every single day. 

30. The fact that you read this list makes me feel: Like maybe you will gain just a lil bit of insight as to what its like to be the parent of a kid with a chronic illness.  

Thorns

Ever think about how many different kinds of plants have thorns?  Obviously, roses and cacti are probably what comes to mind the quickest.  We have some sort of trees on our property that has really pretty flowers that bloom every spring.  I have NO idea what they are.  We've got yellow squash growing in our garden and those vines tend to have some sort of little spiky pokey things.  OUCH.

I hate thorns.  Big or small.  Big and fat or short and very thin-like a sliver. 

But the biggest thorn that I absolutely LOATHE...is...Diabetes. Its a thorn in my backside and it has been for 11 years.  11 long years.  Just doesn't seem like its been that long.

Tonight was a rough night.  It was time to change infusion sites again.  Last one was a few days ago, when we had a big mishap with the new infusions we are trying.  Ended up being a huge problem because the canula got messed up--thats a tiny plastic tube that the insulin comes out of and into his system.   I was up at 4:30 Saturday morning changing his infusion again, because his glucose was just under 500.

Not something you want to worry about getting up and doing when you've finally gotten some sleep after laying in bed WIDE awake for hours upon hours.  

Tonight was a bit of dejavu as well--because we went through the same stuff every three nights when he first got the pump, that we went through tonight.  Its a 'game'.  Its a mind game.  He tells himself he can't do this and he refuses to give in and just go for it.  

"Whats the big deal?"  "Just put the site on for him.  Its not that simple.  Here's why: Because he is 14--FOURTEEN. Because we have been dealing with this disease for 11 years.  Because its time for him to 'man up' and be RESPONSIBLE FOR HIMSELF. 

Now, the reason I said it was like dejavu was because we went through this VERY same thing when he started the pump. He couldnt do his site changes then--and I honestly didnt blame him for not wanting to.  In fact, I myself refused to change his site for him.  Kyle had to do it.  The infusions and serter he used back in 2005..that thing was EVIL.  PURE evil. I hated that thing.  Finally we were introduced to the Sure T.  Thats what he is currently using.,  It took him a year to be able to put that one on himself.

I will give him credit--he did finally manage to put a MIO on last night.  But it took TWO hours for him to do so.  TWO HOURS.  He can  not sit there and put it off that long.  Its a no brainer--if he's unhooked from his pump, that means NO insulin is flowin through him.  

Thorns...sharp prickley pokey stinkin thorns.  T1D(type 1 diabetes) is a HUGE thorn in my side.  It has been for 11 years.  And its going to be for many more years.  But that doesn't mean I have to like it.   And I don't like it.  I hate it.  Most of you who have known me for any length of time, know that Im pretty blunt in my feelings for this disease.  

Its a thorn that I would much rather it didnt even exist.

Changes....Its Time

 There is a time for everything,

   and a season for every activity under the heavens..Ecc. 3:1

Everything happens for a reason.  Everything happens when its supposes to--there are no accidents.  Everything happens, in God's timing.  

We went to see Colton's new Endocrinologist on Thursday.  What a way for Colton to spend his birthday--at the doctor's office.  We were there all day.  And that is not an exaggeration.  His appointment was just after 1pm and we left at 5pm.  

They did his height, weight, blood pressure and his A1C(average of his glucose levels over the last 3 months).  It was 8.3%.  Not the worst number it could have been but certainly not the worst either.  Typically, for Colton's age, his A1C needs to be in the 7's.  When he was diagnosed, it was 14%.  We slowly over the years, got it down--and it was actually in the 7's.  However, that short time he was in public school--his average went back up. And it went WAY up--back up to 13.  I was NOT a happy mom with those results.

They got us back in room and we waited for what seemed like an eternity.  It was a LONG 30 minutes before anyone ever came into the room.  Dr. Copeland's assistant(I can't remember her name! Im horrible with names!) came in and started going over Colton's history and asked him several questions.  When she started asking him questions about his diabetes, thats when things started 'getting good' in my opinion.  The fact that he does not always bolus or check his blood when he's suppose to-----put it this way.  For someone we do not even know, for them to look at him and say, "Well why wouldn't you do that?  You HAVE to do this stuff...."  That was awesome!

Someone who KNOWS what will happen if he doesn't do what he must do.  Someone who UNDERSTANDS the consequences if he doesn't do what he must do every single day.  Now, thats not to say that his previous doctor didn't know or understand.  I guess it was just the way she said it to him--he needed someone OTHER than Kyle and I to get really stern with him.

Finally, Dr. Copeland came in and introduced himself to us, as well as the clinic's dietician, Amy.

They were all very thorough throughout our visit with them.  Here's the thing--I really feel like they are the change we have needed for some time now. 

Dr. Copeland laid down the law so to speak.  And he told us that he wants to work with us and that he wants to do everything he can--but that Colton MUST do his part.  He can't expect Kyle and I to do things for him.   He must 'man up' and show responsibility and maturity.  There is NO reason or excuse for anything that he has been blowing off or trying to ignore.  Its not going to go away.  No matter how much he wishes it would just disappear...this is his life and he MUST take care of himself.

He has ONE month before we go back.  So, thats ONE MONTH to straighten it up and do everything he's suppose to do.  Now, when we go back in a month, if he's not doing everything he's suppose to do, Im not sure what will happen.  I have an idea...but Im not totally sure it will actually happen.

Changes were made while we were there.  This is where my heart just sank as I listened to Dr. Copeland.  I have made it no secret that I have felt like things were just blown off so to speak or brushed off the last couple of years when we've gone to his check ups.  But to hear the words that came out of Dr. Copeland's mouth at one point...as a mom, its not something I wanted to hear.  It broke my heart, it made me angry and it was all I could do to fight back tears.  

He told Colton, rather frankly, that he felt like Colton's previous Dr had given up on him.  Thats right, given up on him.  Colton's basal rates were maxed out--twice what they should have been for a kid his age.  The basal rate is the continuous insulin going through his system via his pump--just like a normal working pancreas would produce.  That was 1 change that was made.  Instead of getting several units in a 24 hour time frame, he will now get a much smaller one.  This may result in some higher readings--but that is to make sure he focuses on checking his blood when he's suppose to, instead of going 5 or more hours in between times.  He's suppose to check himself before he eats ANYTHING.  That means breakfast, lunch, dinner(3) morning snack, afternoon snack, bedtime snack(3).  Obviously its NOT hard to do the math--thats 6 times right there from the time he gets out of bed.  And obviously, there may be a few other times throughout the day when he will need to test.   Sick days--glucose levels are always checked more on sick days.  Thats something for a whole other blog though.  Getting sick and diabetes are NOT friends at all.

Colton has been on a pump since Tobi was born in April of 2005.  Before he got on the pump, he was getting about 6 shots a day.  His pump is now his pancreas.  Instead of checking himself, and getting a shot, the pump does it for him.   That just means that he checks himself, adds up the carbs he's going to be eating and then takes a bolus of insulin with his pump.  IF he does NOT bolus, then his blood sugar rises and thats BAD BAD BAD. 

Put it this way.  If we go to Sonic, he usually gets a diet coke or a diet dr pepper.  If they screw up and give him REGULAR soda instead....and this has happened before....his glucose levels will shoot up VERY quickly.  And I mean HI.  In fact, if he checks himself, HI is what his meter will say and its not saying "Hello"  HI on his meter means that his glucose is over 600.  That can be lethal.

Any time Colton check's his blood, from now on--anything over 150 will be considered 'high'. His new 'target' range is 80-150.  If he tests, and he's 78, thats considered low and he is to have a snack to treat it.  Anything over 150 is considered high and he will need to give himself a bolus of insulin to bring the number down.

Infusion sets: This is what he uses with his pump--its how he gets his insulin.  Typically, when he was getting shots still, we would give him his shots in his arms, legs, or his booty.  When he started pumping, we would put his infusions in his leg or his booty.  Then it went to just his booty.  NOT ANY MORE!  He can NO LONGER use his booty for his infusion sites.  Dr. Copeland told him he MUST use his tummy, or his upper thigh.  I have asked over and over and over and OVER again in the past about him continually using his butt for his infusions.  I've done the research and I've read lots of stuff.  You MUST rotate and change where you put your infusions or take your shots or it does NO good--b/c scar tissue develops and the insulin can't get through like it needs to.  

We are excited though--he's decided to try a new infusion set, and we will be checking it out this week!  Its called a Mio: http://www.minimed.com/products/infusionsets/mio.html

Self Discipline: He HAS to prove and show that he is in control of his diabetes.  Not me.  Not Kyle.  Not my parents.  Just Colton.  He has to prove he's capable of doing exactly what he's suppose to when he's suppose to.  He either has to write down each and every blood sugar in a log book, or he will have to download his meter to the computer and then we'll have to print it up, and take it with us when we go back to the doctor in a month.

I asked Colton earlier this morning when he got up if he checked himself and what he was and as I did, something said "Nope, don't do it.  Don't ask him.  He's gotta prove that he is capable of doing stuff!!!"  So at that moment, I made the choice to not say a word to him.  I will NOT ask him if he's checked his bs; what he was, or if he bolused.  

Im not sure what they will be, but Im sure there will be consequences when we go back to see Dr Copeland in a month.  

So, changes are coming, at least thats what I feel.  And its indeed time for changes.  If changes are not made, and made for the better, I don't want to think about what the consequences could be.  

What I do know, is that it was not an accident, or a 'chance' thing, that we heard Dr. Copeland's name within 2-3 days time.  And I was also told by a dear friend, that she had been specifically praying that we would somehow make a change in doctors.  You know who you are--thank you for your prayers and your sweet friendship.

Colton's Journey

I have wanted to make a video or slide show of Colton for a LONG time.  You have to remember, Im not real computer savvy--and what I can do on one, I've learned how to do just by fiddling around with my laptop.  
So I finally sat down put together some pics, took some tunes off of my iTunes and edited the pics with captions.  I had actually sat and typed up all of the 'facts' that are in the video and saved them to the computer.  But when I went to upload those files, each time I tried to insert one, it was blank.  SO, I decided to just write it out by hand...kinda makes it a bit more personal that way anyhow.  
And so, I sat all day yesterday working on this project.  This evening I have been trying to edit it some and re-do some of the fonts that I used.
Thought I'd share it here on my blog.   Each and every song has a significant reason for being used.  The first one, came out and we were in awe of the words, considering what we had just learned about his health.  The second one, I chose for Colton's life verse, the first time I ever heard it.  And the last one, is because my Lord and Savior is always there with me and my family caring us through the ups and downs of this journey that we all travel each and every day.  You may want to pause the music player on the blog while the video is playing.

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

IDDM

If you were to see the letters IDDM, would you know what they mean?  While I myself know what they mean, it just really hit me today, how many people really know?  And why did I come to this realization?

When Colton was dx'd with his diabetes in 2000, one of the first things that we did, was to get him an I.D.
bracelet.  Why?  Because we thought it was important for everyone to know that he had a serious health condition.  I found a website and ordered one immediately.  My folks bought his first bracelet.   It was blue, and engraved on it:
Colton Otwell
Diabetes
It also had the little medical emblem on it.  He wore it daily, either on his wrist or around his ankle.  The only time we ever really had anyone 'notice' it, was when he was getting his picture taken, later in the year, after he was dx'd.

It was October, 2000.  We'd gotten his diabetes under control enough that he was starting to put a little of the weight he'd lost, back on.  His little face was just as cute as could be all chubby.  He was a cheese ball when he was getting his picture taken.  The photographer said something about hiding the bracelet.  My reaction: "Why?  Its part of his life, and Im not hiding it."

Rewind back to June when he was newly dx'd, had I actually seen/heard this situation, you can bet I'd have said something.  We hadnt known very long about the D, in fact, it had only been a few weeks.  Kyle's parents had came down from Tulsa for the weekend, so we all decided to go to the mall for a while. 

First thing we did when we got there was to hunt down the bathroom.  My mother in law and I took Colton in the womens bathroom with us--we needed to wash his hands to check his blood sugar.  I proceeded to hold him up at the sink and help him wash his hands.  Sat him down, got everything all ready, and poked his little finger, checked his blood, put his stuff away, and went back out to find Kyle.  A few minutes later, my MIL came out of the bathroom, and asked if I'd heard the two older women who were in the bathroom---they were oh, about 70-75.  Apparently, they watched as I checked Colton's sugars.  And as I left the bathroom my MIL heard one of them say: "Now why couldnt they have done that at home??!!"

UM, HELLO!!!!!!!!!!!!!!!!!!!!!!!!!!!!  He's 3, and he's got diabetes!!! Can't check it at home, leave to go to the mall and then wait till we get home to check it again!!!!!!!!   And let me tell ya, I have never forgotten that.  And to this day, when I go to that mall, and I go into that same bathroom--thats what I always think of!! Geez!!!!!!

Here's one I hate to this day: Scenario--We are out eating after church on Sunday.  We sit down, check out the menu, settle on our food, order, and wait.  While waiting for it to be served, its time to check Colton's bs again.  So, I pull out his little bag, get his meter all ready, and grab an alchol swab, poke his finger, and check his blood.  DO YOU KNOW HOW MANY PEOPLE STARE!!!??? Seriously!!  Its rather annoying!

I was thinking today about different situations like that today, that we've experienced since he was dx'd.  Its amazing--people are dx'd with this disease every single day.  Adults, children, teens, and adults--yes I said it twice.  It doesnt care what your age is.  You can be 30 and still be dx'd with Typle 1 Diabetes. 

Anyway, how many people do you actually SEE when you are out and about everyday, and its apparent that they have D?  Now stop and think, seriously?  Think REALLY REALLY HARD.
Ive made it a point to look really hard.  And as common as this disease is coming, you just really don't see it.  And if you do, those ppl are type 2.  There IS a difference.

I remember the first time we participated in the JDRF Walk To Cure Diabetes.  It was in 2001, the one year anniversary of Colton's Dx's.  Talk about seeing  A LOT of ppl with D--WOW.
I found myself checking out all of these ppl.  There were tons of ppl there.  And it was not just kids--there were as many adults as kids.  Next thing I know I find myself looking to see just how many ppl were wearing I.D bracelets.  What I found?: Hardly anyone was wearing a bracelet.

Colton's always had an ID bracelet, since he was dx'd.  Up until about 2 or 3 years ago.  He had one, and the engraved piece came off and that was it.  I'd just spent $30 on a sport i.d bracelet and I was not going to pay that much for another one.

There are TONS out there to choose from.  Im not exactly sure why I decided it was time to get him another one.  All I know, is that Im glad I did.  Its something thats just as important for him to have with him, as it is for him to have all of his testing supplies.  He can't walk out of the house without his glucose meter, finger poker, lancets, test strips, and his insulin.  He has to make sure he's got infusions and resevoirs for his pump.  And now, he'll need to make sure he's got that ID tag with him.   WHY??  Because, IF he goes somewhere, and he's not going to be around ppl who are aware of his health--then at least his necklace will alert ppl to his diabetes.

So, I must ask again.  Do you know what IDDM means? What would you do, if you were out and about at the grocery store or mall, and you saw someone just collapse in front of you?  Would you just keep going, and walk around them?  Would you freak out and start yelling for help?  Or would you see what you could do to help them out?  What would you do if you saw IDDM?
Would you know that it means Insulin-Dependent Diabetes Mellitus

I want my son wearing an ID, so that IF something happens and his dad or I am not around, hopefully, people will be smart enough to see his ID tag.  Its a matter of life/death.  I can not say
that enough.  EDUCATE yourself on Diabetes---TYPE 1 and TYPE 2 are DIFFERENT. 
And to KNOW that, you must educate yourself.  You never know what information you may learn, that may just help someone else.