Kids First Diabetes Second…The Full Story

I have said before and I will say it again, I was pleasantly surprised by Leighann Calentine’s new book Kids First Diabetes Second.  I had seriously wondered how someone relatively new to diabetes would handle an entire book…okay Leighann is not a newbie but sadly we have been on this block a few more years and as I have said, I have become crass over the years. As I said previously, she handled it fabulously! Again, I think this should definitely be given to all newly diagnosed, anyone struggling or just wanting to read a good “diabetes” book. 

The book begins with Leighann stating that after diagnosis, she went into “mommy mode” and took it “one meal at a time”.  At that point she had me hooked. I felt a kinship.  I always tell the newly diagnosed that I live life four hours at at time…basically one meal at a time when we were on MDI. She also quotes a nurse who told her that she needed to give her daughter choices but taking care of diabetes was never a choice. I also live this one. My son could choose where his site went, which finger to lance or which color pump he wanted but he could not choose not to test, inject or ultimately to pump. The Calentine’s may not have had as many years of the dia-beast as we had but they had learned well and were sharing great insights with Kids First Diabetes Second!

It was great to read about the support that “Rufus the Bear with Diabetes” still gives children. I remember when I first found Rufus. I remember sharing emails with his creator and finding a wonderful new friend in Carol Cramer. Her kindness still shines through in her bears. My son still has his Rufus that we bought about 10 years ago. I made him outfits.  We received pumps for him.  I had the pleasure of giving away a large number of Rufus and Ruby bears before they were given away here in Canada.  The letters of appreciation and the sense of community that the bears brought still brings a smile to my heart. 

The advice that Leighann has given to parents of children with diabetes in the chapter titled “Your Support System” are definitely words to live by and advice that all of us that live there would also give. 

I did have to laugh however when I read about the importance of changing a lancet.  This did show the gap in our diabetes “ages”.  My son changes his lancet with the changing of clocks or when no matter how hard he squeezes his finger he can’t get blood. Yes, lancets are cheap but we are lazy. We use the thinnest lancets but in over 12 years we have probably not bought a dozen boxes of lancets.  We used the multi-clicks for a bit (elevating our lancet purchases) but still, he rarely changed the drum.  Most of our diabetes pals are the same way. They too would laugh at the idea of actually changing a lancet after every use. 

I also found a difference in our children.  Quinn loves to share and is open about her diabetes. My son is reserved and would rather die than have to talk to someone about it. It has been a part of his life for longer than he can remember but he remains very private about diabetes.  He hates having to be involved in anything diabetes related. That is “mom’s thing”. Its his disease but he will keep it to himself thank you very much. I applaud those who are able to “wear it proudly” and I was able to gain some hope in reading about Naomi, a young adult who sounds like she was a lot like my son–diagnosed at two and very private until she was in college.

I loved reading about Linda Werts who planned to move away to school with her son when he graduated high school.  How many times did my d-parent friends and I joke that we would be the mother in the Robert Munch book “I’ll Love You Forever”?  When my sons were younger, they were never leaving home. They would forever live in my house and my refrigerator. Now that they are older, they both have plans of their own that sadly do not include living with Mom or Mom being allowed to move away with them. When that time comes for my son with diabetes, I will rely on those who have gone before me to guide me and I will try not to be the Munch Mother…really…I’ll try…I promise…

The use throughout Kids First Diabetes Second of short essays from many diabetes “experts”…those who have “been there, done that” was wonderful.  It gave a perspective from parents who have journeyed where you have yet to tread, adults who have lived the lives of our children, and more.  These snippets truly rounded out a very good diabetes resource.  

We use different technologies.  Our children are different ages. I wondered how she avoided that slap in the face that many of us feel when we see our child “attached” to something that keeps them alive (aka an insulin pump).  For many of us, that is the one downside we faced as we journeyed down the pumping road–seeing “diabetes” by seeing our children hooked to a device,  attached to something that will keep them alive.  Despite those few differences, we are both mothers of children with diabetes. We are advocates for our children. We share our lives with others in hopes of helping them get through.  We are part of a club that no one wants to belong to but are constantly amazed by the strength of those who are invited to join.  

Leighann Calentine and her family have shown a lot of strength in their sharing and their activities. It shows throughout this book. Great job Leighann…and as for the rest of you? Go order the book for Pete’s sake! Its even available for your eReader

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 we went to a park and brought this bike lock so we could pull over and walk around. 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.