From a Father to Two Fathers

In honor of Fathers Day, The Diabetes Dad recently wrote an open letter to the two fathers in the US who are hoping to win the next presidential election in that country. Being Canadian and not overly into politics beyond asking for various diabetes related expenditures, I was shocked by what I read. I was also impressed that this father of two children with diabetes had so eloquently challenged these other two fathers to take a moment and make a difference to their constituent living with diabetes.

Tom Karlya, The Diabetes Dad, astounded me when he wrote that "the upcoming election for president may well cost over two BILLION dollars." He further noted that after all that spending, the only thing that will be there to show for it is that one of those fathers will have a home at 16 Pennsylvania Avenue in Washington for four years.  He told that them with .1% of that money (which is a staggering $1million), the cost of perhaps one national TV commercial, the Diabetes Research Institute could be that much closer to a cure for people with Type 1 diabetes.

I invite you to read the letter.  The math will astound you. The extravagant US election spending will terrify you but the point is well made.  They could chose to make a difference and help others for such a comparatively small amount of money.

After reading this, I was curious to see what spending was like here in Canada. We know that if we could tap into some of the federal MP's controversial spending, we would have insulin pumps for every person with diabetes who wanted one and schools with adequate funding to keep our children with diabetes safe.

That is what happens when they get into office but what do the fathers who are currently leading our major federal parties spend to get themselves in office? In our case, much less than their US counterparts.  Elections Canada has capped spending at $21million.  I know that the DRI would not turn down a $21,000 donation to help fund a cure any more than the JDRF or CDA would. They would also not turn down the money spent on one national TV ad during a campaign season.  

Its sad that our leaders and those in high profile politics do not necessarily think that way. I hope that Tom's letter reaches the American fathers to whom his letter is directed. I would love to see them take up his challenge and help to fund a legacy rather than just worry about getting a moving truck.  

Kids First Diabetes Second...The Language Chapter

I finally finished Leighann Calentine's book Kids First Diabetes Second.  That is not to say that it was just so boring that it took me forever to read.  Its a reflection of the fact that I just don't have enough me time to read, I was trying to read three books at once AND there were not enough 3am lows to add to my reading time. 

The book was a bit of a surprise to me. I know that probably sounds rude but I was not expecting a lot.  I really didn't know much about Leighann prior to this. I had read her blog on occasion. I knew that she was also a Diabetes Advocate but she had only been dealing with the D-monster for four years.  I have been at this for over twelve and am now a bit more crass.  Would she be able to keep my interest? The answer was a resounding YES! She did a great job explaining things and then used a fabulous panel of experts to help fill in various areas.  The balance was brilliant and this is definitely a book that should be given to every newly diagnosed family at least. 


In reading the book, I once again had a million little pieces of paper marking things that I wanted to write about in a review.  There are so many little bits of things that I thought were interesting that its going to take more than one blog post! Since I finished the book last night, I decided to start at one of the last sections that made me laugh and taught me a few things. 


Kids First Diabetes Second dedicates an entire chapter to "The Language of Diabetes".  We all know that diabetes has its own language. We live to watch the response of people when we look at our teen or our toddler and tell them "You had better be high Mister!"  We laugh at ourselves and know our kids love it when we ask them to give us "the finger".  


These were found in the book as well as many more and it turns out that being a diabetes dinosaur, there were a lot of terms that I just didn't know. I love the "Bateman Belt" which we used to just refer to as his pump pouch.  Now kids can put so much more in them that the term had to be expanded. 


I laughed when I saw "diabeetus" and the fact that it causes an eye roll in many.  You know that that is how I pronounce the dreaded word right? I don't know if its a Barb thing or a Canadian thing.  Perhaps Wilfred Brimley and I just have some sort of weird connection but to me the "diabeetees" thing sounds just as odd. 


I learned about Flat-lining and dreamed of it happening to my son one day.  We don't have a CGM so I can only imagine how great it must be to see. 


We have experienced both definitions of a gusher.  We have seen blood spurt from his finger across the dining room table into his brother's soup.  We have also had sites that poured out so much blood I was beginning to think he may need a transfusion but told my son that it was no big deal! 


The term "Old school" killed me.  I am not that old...really...I think....but we don't use CGM (read cost factor and access issues) and I love a paper log. I am working really hard to move away from one but downloading pumps and meters? EEEK!! It is just so hard for me to do. (Actually she states that the term refers to people who go back to these ways and not to those of us still stuck there)  


I remember learning about SWAG and YDMV when I first joined the CWD parents list. 


This chapter was full of great stuff. At the end of it the author notes the importance of not looking at numbers as "good" or "bad".  That is so hard.  I never judge my son by his reading. We do have the debate on whether we have been effective pancreases or not.  We use readings as a learning tool now that he is a teen.  When he was younger, they were Mom's grade and Mom's responsibility.  "Mom failed you." would be the guilt that ran through my head. I would not tell him that but it was how I would feel.   


As Leighann and many before her have said, our children are so much more than a number. Readings are vital to their health and their well-being but they are just a tool. Its vital that we teach them that as well as helping them to flat-line! 


Stay tuned for more great insights and commentaries on Leighann Calentine's Kids First Diabetes Second....or go and pre-order your own copy so you can find all of the good parts for yourself! 

A1c Zen

I realized last night that we have a diabetes clinic appointment next week. We will get our dreaded A1c at that point. I have just finished reading the section in Leighann Calentine's book Kids First Diabetes Second where she talks about people thinking of the A1c as a report card on what sort of a pancreas you have been during the past 3 months and realized that this A1c was different. 

I do normally look at it as a measure of how well I have taken care of my son...until now.  For some reason, in looking towards the impending results of this blood test, I am seeing things very differently.

My son is now a teen.  He will begin grade 10 in the fall. We have been working towards his own diabetes independence for years thanks to the amazing doctor who looked after him for the first 10 years after diagnosis. I still bolus when he hands me his pump. I still remind him to test and I hover over him threatening to insert a site in very uncomfortable spots when I know that he has gone days past a scheduled site change, but I am also allowing him to make a few of his own mistakes.

I thought about his basal patterns and realized that I am not making as many changes lately as I normally would have been.  I am also not doing every part of his care.  We have seen highs and have known that it was a bad site--No sense changing anything for that one.  We have seen lows and known that it was that day of biking and then mowing the lawn that caused that one.  Since he is going to be more active for the summer, that low warranted a change.

There have been more issues that have not warranted a change though.  That is my point.  We are looking at highs and the occasional low and going, "Oh yeah, that was a mistake here."  or "Oh yeah, I guess there was more fat in that meal than expected." We (read that he) are learning.

Thanks Reyna at Beta Buddies for the cool report card graphic!

I have no idea what this A1c will look like. I expect it to be "okay".  It will not be as low as Mom likes. It will be low enough for the diabetes team to go "oh wow! You are doing excellent." but personally they have pretty low standards. It will not be a double digit. It will most likely not even be overly high but it will be higher than I like (I am a seven person. I love to be under that 7% mentioned in the DCCT). 

Call me in three months and this Zen moment will most likely be gone. I will be freaking out at the results. I will be hovering over my son more and telling him we have to get together a lot more on this but for today...I am good. Its a number. It just shows that we are learning and working towards my son taking over his disease with a large arsenal of skills one day in the near future.

The Death of a Calculator

Its been in the making for awhile but today it was official.  Tragedy has once again struck our house.

Our beloved calculator, given to us by our great friend Stacey and used daily for probably five or more years has died.  I was crushed.  This calculator sat by our scale in the kitchen.  It had been calculating carbs for us for years. 

Suddenly I remembered that we had another one just like it!I rushed downstairs and into my office to check the second calculator.  You can understand why the tears began to fall when I pressed the button to turn this one on and once again...it was gone too!

Yes, I can go out and buy another calculator. Yes, because diabetes lives in our house I will have to go and buy another calculator or start using the one on my phone more but that is not the point. These calculators were cool!

If you look closely they have a life preserver and a little floating glucagon kit inside. Where can you get something as cool as that? Only from a friend of a child with diabetes.

The sun still shines.  The calculator on my phone was able to figure out my son's breakfast carbs but meals will never be the same any more.  The great "fun" factor of our cool little calculator is gone.  Carb counting will now be a little more routine but I guess that is just part of the circle of electronics life.

RIP my calculator pals and thanks Stacey for the years of fun with them while they lasted!

A Mothers Anthem

As I have mentioned many times, about a year after my son's diagnosis with diabetes I joined the world of the Internet and found an amazing group of people in Jeff Hitchcock's Children with Diabetes Parents online mailing list.  In those days there was no Facebook or Twitter. I had no other support but this group of people that I would email with and they would reply.  Over the years many of these online names have become some of my closest friends who have been there for me, been there with me, and kept me going when I wasn't sure if I could do it. 

This was (and is) a very diverse group.  There were people with strong opinions, people with wide shoulders and people who were incredibly talented at putting their words to paper. Linda Kaniasty was one of those talented people who put the feelings of many parents into words.  Her poem, A Mother's Anthem has been a fixture on one of the pages of my website for years. 

Recently it has been used to created a film.  Sucscita Films took this poem and gave it a face for "Children with Diabetes UK." and their national diabetes week.  The poem was powerful.  The video will reduce you to tears.  Each time I watch it, more memories return and more tears flow. 

A wonderful friend that I met thanks to the online parents list, Jen summed up our feelings best when she said "God, I'd forgotten about the bruises. She's been pumping for so long that I'd forgotten about the bruised arms, and wondering what other parents thought of those bruises....This was harder to watch than the poem was to read years ago because its in their eyes.  That thing that we keep just barely tucked away beneath the surface, so others don't see our pain.  the pain that we even fool ourselves into forgetting about, because we're so good at being strong.  But it takes something as simple as this to bring it right back up to the surface."

I remember the bruises and thinking that people must believe I abuse him when I am actually fighting to keep him alive. I remember the fights to get him to eat because there was insulin in his system that had to be fed.  I remember crying in the dark at night after my children were gone to sleep. I didn't want them to see me but it hurt to know that no matter what I did, I would NEVER be able to "fix" this. I couldn't "make it better". 

Thank you to Linda for this powerful poem and thank you to the people at Children with Diabetes UK for having the courage to put their pain to video and show the world what we all feel as mothers--as parents.

Confessions of a Control Freak who has fought Diabetes

I have been lucky enough to get a copy of Leighann Calentine's new book "Kids First, Diabetes Second".  I am almost through reading the book and so far am very impressed but I will tell you all about it later. What sent me off to my computer was a line in which she said that for her, she learned to cope with diabetes by taking back control. 

When I finished reading the section in question, I agreed with her whole heartedly but being me, my mind immediately moved off onto another tangent with those few words.  I have always said that diabetes taught me how much control I don't have.

I am one of those people who likes to plan ahead. Prior to diabetes, I could give you our ten year financial plan, our plan for our next five summer vacations and more.  It was all about the planning and controlling the world around me.  Larry would argue that I am still like that and in some ways I am but in a lot more ways, I am not.

Diabetes has taught me that despite my best efforts, things do not always go as I want them to. There have been the active days that I swore would result in lows so I reduced his night time basal rate only to be chasing highs for the rest of the night. Why? Because the diabetes gods made it so! Okay or more likely there was air in his tubing, a site that was going bad, a bolus calculating error...well you get the idea. 

I have planned to enjoy a good night's rest only to find my son's tubing was dislodged during the night and he is up vomiting with ketones.  I have equally planned on enjoying a night's sleep only to be kept up with a low that we never saw coming.

We have planned for sleepovers that have ended because of highs that he could not get rid of on his own.  There have been celebratory meals at McDonald's at the end of swimming lessons that left us all exhausted because my son had such a bad low that it took us every low food in my bag and half of someone else's pop to bring back up.

There have been days when I have been prepared for diabetes to send me its worst...only to have a wonderful day. 

Diabetes keeps me on my toes.  As Leighnann says, for the first year, my life was about trying to gain some sort of control of our lives. Our world became very regimented. I functioned. I kept my son alive.  Meals were set.  There was no variation but over time, I took some of that control back.  I baked again.  I allowed him different foods at snack times. We ventured out of our safe zone.  Diabetes still kept us (and keeps us) on our toes but it has taught me a lot about what I can control and what I can't.  It has also taught me what is important to control versus what is better left to happen when it happens.

My version what the Diabetes looks like!

Does diabetes control our lives now? No. Do I control our lives now? Heck no! I am now the mother of two teen aged sons, one who is heading off into the adult world in a matter of weeks...all my carefully guarded control is flying out of the window faster than I can hold on. Its not a bad thing...it just is.  We all cringe when someone asks if your diabetes is "under control" but we also recognize that we do have to take back some control of our lives and work to live with diabetes rather than living all about diabetes.

The Fair and The Eye Roll

It was once again time for my youngest son to join his peers and do their annual end of the year trip to the fair...in the rain! At the end of each school year group of kids that he knows get together, head off to the local fair grounds, eat, go and rides and have fun for as long as their bodies can handle it. 

Last year I was a little freaked. I didn't know the kids that well. My son was alone in a city! We had previously lived in a rural setting for all of his life.  He is  terribly private about his diabetes and I worried how well he would manage himself with friends around.

Somehow a year has passed and once again my son informed me that his group of pals were heading out to the fair again.  They were meeting at a friend's house at 4:30pm.  I didn't expect them to be finished until late that night. I was right.

Before he left the house, we went through the list...
Glucometer? Check.
Test strips?  Check.
Lancet? Check.
Glucose tablets? Check. Hold on, let me fill those for you...followed by "Mom" and an eye roll.
Cell phone? Check.

As we got into the car he also looked for the most important thing...cash! He was good to go.

We arrived at his friend's house and as he was leaving the car I was yelling out instructions.  He had closed the door and I was rolling down the window...."Don't forget to set a lower temporary basal! You will be doing a lot of walking." 

Again, with the eye roll as he hurried to the door hoping to get inside and away from my hovering sooner rather than later.

When he got home we went over his testing.  "What do you mean you only tested three time?"

"Mom, I wasn't gone that long."

"You were gone seven hours!"

"Yeah, Mom, that is one test every two hours AND I tested before I did any major walking. I didn't eat and I was okay."

I couldn't argue. He was right. Testing every two hours is something that I really can't complain about.  The fact that he stayed out and had fun? Well that is the absolute most important part but it is still hard to let go...even if he seems to be doing okay when he has to.