Memories; The First Low

Diabetes Blog Week Prompt, Day 3: Today we’re going to share our most memorable diabetes day. You can take this anywhere.... your or your loved one's diagnosis, a bad low, a bad high, a big success, any day that you’d like to share. 

I love that these topics are really getting me thinking...there have been so many diabetes memories, both good and bad. I could post about Dylan's diagnosis. Or about Cyclebetes, the cross-Canada cycling event I was lucky enough to participate in not once, but twice. I could write about one of the many amazing JDRF events we have partaken in, or about the day we started pumping. All worthwhile choices.

But no. Today, the memory that keeps flashing to the forefront of my brain, is of Dylan's one, and only, REALLY bad daytime low. Sure, he's had hundreds of lows, in fact, lately he gets them daily. But this low...this bad boy was different. It had attitude. It was the type of low that keep a d-parent living in fear. The type of low that makes you want to hold on to your child and not let him or her out of your sight. EVER. 

One day, within the first year after Dyl was diagnosed (he was 4 years old at diagnosis), he was spending the day with grandma at her house, which is about a 10 minute drive from our house. (For the record, she is and always has been knowledgeable about Dyl's diabetes, and is one of the few people I've always been comfortable leaving Dylan alone with.) After spending the afternoon together, she was driving him home when she decided to make a quick stop at the library to drop off a few books. She pulled up in front of the building and noticed Dylan had fallen asleep in the back seat of the car. Side-note: this was a very common occurrence, and still is now. Dylan frequently falls asleep within the first minute or so of travel time. Knowing this, she left him in the car and ran the 10 or so feet to put the books in the outdoor return slot. She hopped back in the car and drove to my house. When they pulled in our driveway I could see her, from the kitchen window, struggling to get him out of the car. Again, this wasn't uncommon. He would sleep so soundly for short drives, that we would often have difficulty rousing him once we reached our destination. I saw her pulling him out of the booster seat and trying to get him to walk up the flight of stairs to the back door. And that was when I knew something was very wrong.

Normally Dylan would be disoriented after snoozing in the car, but he would still semi-wake up and stumble into the house. This time he wasn't. My mom was literally dragging him; she had both arms hooked around his chest in a sort of sideways embrace, and was attempting to pull him up the stairs, his legs and feet dragging behind. As I opened the door to help her, she apologized, explaining that he had fallen asleep in the backseat and she couldn't rouse him. 

I immediately knew the truth. He wasn't sleepy, he was hypoglycemic. Between the two of us, we brought him inside and sat him on the couch. I tried, unsuccessfully, to give him dex, but he wasn't responsive enough to chew the tablets. I grabbed a juice box, rammed the straw through the metal hole, and squeezed the juice up through the straw so that it dribbled slowly into Dylan's mouth. For the first few seconds, he didn't swallow, the juice running out of his mouth and down his chin, spilling onto his t-shirt. Then suddenly, as I was about to prep the glucagon for my first real use, he swallowed a few sips of juice. Then a few more. And slowly, as if by magic, the life returned; the color slowly returned to his cheeks, the clarity to his eyes, and the control to his limbs. He was back. 

Nothing, I repeat, nothing, can prepare a parent for that experience. I thought I was ready - I had done all the training, been through the procedures, I knew what to do in an emergency. But nothing I had read or studied could have prepared me for the real deal. That afternoon was the first time I TRULY understood just how unpredictable, powerful, and terrifying, diabetes could be. 

We, The Undersigned

It's Day 2 of Diabetes Blog Week, and today's prompt is, "Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) - get creative!! What are you trying to change and what have you experienced that makes you want this change?"

I, mother of a child with type 1 diabetes, hereby petition the people of planet Earth to do their absolute best to correct and/or overcome any and all preconceived and unsubstantiated notions about the cause and treatment of type 1 diabetes. This includes any misconceptions, ignorance, simplicity, incapacity, naivete, callowness, and basic lack of understanding about the disease itself, as well as how to "best" manage it, and how to reduce long term risk of type 1 complications. Examples of such ludicrous notions include, but are not limited to:

• questions related to things my type 1 child "can" and "cannot" eat. And I apologize in advance because one of these days when another adult asks me "can he eat this?", I just might go off the deep end and shove aforementioned "this" where the proverbial sun don't shine. YES, he can eat that.
• suggestions that my son "got" type 1 diabetes as a result of too much sugar, lack of exercise, or obesity. Umm, hello? Have we met? I am borderline obsessive about diet and exercise and would never feed my children copious amounts of sugar or saturated fats, and I ensure they get plenty of exercise. Though that's totally irrelevant because there is NO LINK whatsoever between diet and/or activity level and the incidence of type 1 diabetes.
• stories about someone's second cousin's friend's mom who was "cured" of type 1 diabetes after taking some magical herbal/cinnamon/new age discovery. For starters, there is NO CURE for type 1 diabetes. Period. Second, if there were some secret cure out there, don't you think we would have tried it by now? And third, see first bullet for my in-advance apology, as this applies to you too, and where I'd like to put your "cure".

I wish that the lack of knowledge about type 1 diabetes was limited to the above list, but in fact these are only a handful of the masses of incorrect ideas floating around. There are myriads of great resources available to educate about type 1 diabetes. Check out my resources tab for some helpful links.

Comments for You

Day 15 Prompt: Comment! Pick someone else’s blog post and write a comment to them. Write that comment as your post for today and link back to them to let them know you were inspired.

As usual, I am behind on my HAWMC posts, but still trying to catch up :) For today's prompt, I chose to comment on a post written by fellow HAWMC diabetes blogger. Sweetly Voiced, written by type 1 advocate Melissa Lee, is a blog I've been following regularly since joining the diabetes blogging world.

After reading Melissa's post It's Cuplicated this morning, I knew this was the post I wanted to comment on for today's (actually yesterday's) prompt...

My comment:
"I love this post because I can so relate to it. Be it type 2, gestational diabetes, pre-diabetes, whatever, each comes with its own set of challenges, and each person's blood glucose level reacts a little bit differently to food, insulin, and exercise. But we ALL react. Just because someone is not dependent on multiple daily insulin injections, does not mean they are any less susceptible to the blood sugar spike after eating the granola bar or ice cream sundae or whatever other high carb, high glycemic index food they are ingesting.

And while advice or feedback from a non-doctor, or non-type 1 may be well intended, until someone has "walked a mile" in type 1 shoes, so to speak, I don't think they really get it. I don't think they CAN get it, no matter how good their intentions."

1, 3, and 5 Year Goals

Day 5: What’s your one, three, or five year plan for your Health Activism?

Ask me this 5, or even 3, years ago, and I would've spouted on about the big "C" word, and the importance of raising funds for diabetes research. 2 years ago my focus was almost solely on advocacy. Today, to be honest, it's a mixed bag, but overall, I'm focused on the now.

While I understand that a cure is not in the immediate future, I so still believe with all of my heart that there is one out there, and that the number one barrier to discovering it is money. As a parent of a child with type 1, I can't stop believing in a cure because it's the ultimate goal, the holy grail so to speak. But do I actively seek a cure and tirelessly fund-raise for it? No, not anymore.

And I certainly understand the critical importance and role of advocacy. There are simply too many people who do not receive, or cannot afford, even the most basic of diabetes care, such as insulin and test strips. There are too many children who do not receive government funded insulin pumps, and there are far too many people suffering  the side effects of type 1 diabetes, such as blindness, neuropathy, and kidney problems. Type 1 diabetes is a cripplingly expensive disease and we cannot simply sit back while others struggle. We have the opportunity to be not only a voice, but a gateway between those with information, and those without.

Today, I'm focused on the now. On the present and nothing more. I'm purposefully letting go of the past, and not worrying about the future. I have wasted far too much time and energy stressing over yesterday, and obsessing over a tomorrow that is beyond my control. The present is where I live, and I'm taking care of myself and my family as best I possibly can. I am learning and growing constantly, and teaching my children to do the same. In terms of diabetes, we are focused on day to day care: regular testing, carb counting, daily exercise, consistent sleep patterns. Tomorrow'a A1c, or future complication risk, is not dictated by what we do in the future, it is based on what we do today, and everyday, one day at a time. 

My "Care Page"

Day 4 Prompt: Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one. 

My initial thought when reading this prompt was to create a list of links to organizations that promote diabetes awareness and raise funds for diabetes-related research. Then I thought maybe I should share a few links to previous posts I've written., You know, our diagnosis story; how I dealt with with my son's diagnosis; how and why I started advocating myself, stuff like that.

But then I really thought about it; about what I would want to know if our diagnosis was today...and the answer was obvious. I would want to know that I wasn't alone. And that I would never ever be alone with diabetes. Because a diabetes diagnosis comes with an open-armed and open-ended invitation to one of the coolest, most welcoming, supportive, and totally awesome communities out there. The DOC really does have all the answers. Have a question? Post a status update on Facebook. Feeling overwhelmed? Send out a tweet. Need a virtual hug? Simply ask, and the response will amaze you.

Diabetes sucks no matter how you tilt your head, but being able to share frustrations, concerns, and day to day dilemmas with others who understand what you're going through is invaluable.

Oh, and if you are looking for links to previous posts, check out:

Our Diagnosis Story

Why Do I Write?

Type 1 Diagnosis, Now What?

And visit the websites of your national and regional diabetes organizations. See the "Resources" tab above for a few links to start.

Wordless Wednesday, HAWMC Day 3

Day 3 Prompt: Post a picture that symbolizes your condition and your experiences. 

Seeing as today is a day in which we write hope on our hands to raise awareness for those with type 1 diabetes, here's my hand!

Wordless Wednesday: Spare a Rose, Save a Child

A quick reminder: buy one less rose this Valentine's Day, and donate the value of that rose to the Life for a Child program.

Spare a Rose, Save a Child

In case you haven't already heard, there is a pretty amazing initiative spreading through the DOC and around the world this week, called Spare a Rose, Save a Child. Put together by DOC advocates Kerri Sparling, Kelli Close, Manni Hernandez, Jeff Hitchcock, and Bennet Dunlap, with the help of some folks at Johnson & Johnson, the super simple idea is to buy one less rose this Valentine's Day and share the value of that rose with a child with diabetes in the developing world. How do you do that? Easy peezy lemon-squeezy. Simply click here and make a donation to Life for a Child.

So instead of buying that dozen roses for your sweetie this Valentine's Day, buy 11 instead and donate the value of the twelfth to a child in need. It's a simple, caring, but life-changing message.

"I Challenge Diabetes" Review

Yesterday I received an email from one of the nurses at the Diabetes Education Centre we attend, telling me about "I Challenge Diabetes." I clicked on the link to their website, and was instantly ecstatic. How is it that I've never heard of this organization before now? It is sooooo cool. The are a national not-for-profit organization founded in 2007 by Canadian Type 1 Olympic rower Chris Jarvis. Their mission is to support the needs of people living with diabetes, and their families, through online campaigns, experiential /educational programs, and events.

With a vision is to provide support to every Canadian living with type 1 diabetes, the organization and its staff want to show type 1 Canadians that blood glucose management, and living a healthy lifestyle, can be fun. By taking on the "I Challenge Diabetes" pledge, individuals are making a commitment to take on their diabetes management as a personal challenge.

How do they work? "Through events and programs that focus on experiential education and creative problem solving, I Challenge Diabetes provides a supportive community and learning environment that builds confidence and helps people to overcome the fears and frustration that come with managing diabetes. Using modern technology, education, and teamwork, we create programs that target common problems and develop new solutions to stabilizing blood sugars. Our team members, who all have type 1 diabetes, share a deep passion for staying healthy and positive, and deliver these messages through events, workshops, and speaking engagements."

And OMG, they have some totally awesome events all across the country. From snowshoeing and skiing treks, to self-defence and "Amazing Race" style community races, there are events for all ages, and all activity levels.

For info about upcoming events, and a full description of all of the "I Challenge Diabetes" programs, please visit their website at http://ichallengediabetes.org

Gratitude

Today's prompt asks bloggers to write a #ListOf3 things that they are thankful for / excited about / or inspired by. Personally, the most challenging aspect of this prompt is narrowing the choices to only 3. So here are mine:

1. My children - a no brainer. My kids are the most incredible and inspiring part of my life. They fill my days  with joy, laughter, and love, and I am eternally grateful to be a part of each of their lives.

2. My health - I spend a lot of my time taking care of myself, so that I can better take care of others and ensure that I'm here as long as possible. I don't want to simply cruise through life, I want to live every day to its fullest and experience everything this amazing world has to offer. Without health, nothing else matters.

3. Diabetes treatments/technologies/medications - this is health activist blog carnival after all, and while I will tirelessly advocate for a cure for type 1 diabetes, until its found, I am thankful for what we do have thus far. The constant improvement and evolution of technology and medicine enable those with type 1 diabetes to live longer and with fewer side effects than ever before. 

There is still lots of time to participate in WEGO Health's November Blog Carnival. Simply click here to find out more info and to sign up for the daily prompts!

Why Do I Write?

Today kicks off WEGO Health's National Health Blog Post Month, with a prompt asking, "Why do you write?" I wrote on this topic for a blog carnival earlier this year, so I've revised and re-posted my previous piece.

Why do I write about my health (my son's health) condition? My reasons for writing about my (my son's) health condition: I write for me and I write for Dylan.

I Write For Me

My blog is my journal; my diary; the place where I process my thoughts and feelings about raising a child with type 1 diabetes. There are days when I don't know what to write about, and yet once I start the words just flow out; other days I have a specific purpose for a post. Some posts are superficial, while others run much deeper. Regardless, I have become addicted to the cathartic power of writing. Not only is it an avenue for me to express my ideas, it is a tool that helps me to reflect on how I feel about diabetes and all that comes with it. 

Through blogging I have come to terms with my son's diagnosis, and feel a sense of peace that I never had before. It is no longer just about fighting for a cure. It is about accepting that this is the life we have been given. It is about understanding that each day is a gift. It is about knowing that I can choose to make the most of each and every day. It is about connecting and being part of something much bigger than myself (the DOC). And it is about making my voice heard.

I Write for Dylan

All of the above being said, this blog started because of Dylan and I will continue to fight for a cure for type 1 diabetes, for my son and for the thousands of individuals living with this disease. And until that cure is found, I will advocate and educate about type 1 diabetes at every chance I get. Why? Because I can't stop. I will never give up. It's that simple. 

A few years ago I gave a speech, at one of JDRF's Research Symposiums, in regards to why I walk with JDRF every year. I'm going to borrow a bit of it, as it can also be applied to today's topic. 

"When I ask myself why I walk (blog), I am always presented with the same image – the day Dylan was born. I think of that moment when the nurse put him in my arms and I held him for the very first time. I remember our first eye contact. That moment, be it very brief, felt like an eternity, and I could have lived in that moment forever. It was the moment that every mother is blessed with, when you realize that you love your child beyond all possibility, beyond all measure. And in that moment, your life is changed forever because everything you thought you knew about life, love, and what is important, is called into question and everything you thought you knew about yourself requires self-examination. In that moment the only thing in the world that matters in your child.

As parents we know that in loving our children we must also try to keep them safe. And when I think back to that first moment with Dylan, I know that I certainly never thought that keeping him safe would include safety from the immediate and long-term side effects of type-1 diabetes. But as long as it does, I will continue to walk – year after year after year – and I will never give up until there is a cure. I owe him that."

Visit every day in November as I tackle the daily prompts in the National Health Blog Post Month!

Big Blue Test!

It's back! Once again, the Diabetes Hands Foundation is running the Big Blue Test, from Oct 14th to Nov 14th. Participate and help those around the world with diabetes in need.

How Does it Work? Simply test your blood sugar, exercise for 14-20 minutes, test again, and fill out the super-simple form on the Big Blue Test website. It's that easy! Don't have diabetes? No problems, simply track your exercise only!

Why? The average person participating in the Big Blue Test sees a reduction in their blood glucose level of 20% after 14-20 minutes of exercise. And if that's not enough reason to get you motivated, how about this? Every test gets the Diabetes Hands Foundation one step closer to their goal of 20,000 entries.And if they achieve 20,000 entries, Roche Diabetes Care will donate $100,000 to organizations that provide supplies and services for people with diabetes in need.

Quick, easy, and effective. This is a no-brainer. Test today. Test every day between now and November 14th.

Advocating for Another Day 1 ~ Portrait Post

August is "Advocating for Another" month and WEGO Health is running another of its great blog carnivals as an opportunity for bloggers who dedicate their time to caring and/or advocating for another to share their thoughts and ideas on the subject. With a preset list of topics in 4 different categories, hundreds of bloggers will contribute daily posts to the carnival between August 21st and 28th. 

Day 1's topic is entitled Portrait Post, and asks bloggers to "write a descriptive portrait of your child/ren. Share qualities that make them, them – and include an image! (A photo or creative work of them!):"

As soon as I read the topic, I knew what I wanted to share. I have mentioned previously that Dylan has recently taken up vocal and instrumental performance and participates in a weekly performance class. Twice per year the kids have a live concert, in which they perform for their parents and peers. Two months ago, in June, Dylan performed a haunting cover of Coldplay's "Fix You" in front of a live audience of approximately 250 people. 

As a parent, I think I was more nervous for Dylan than he was. Unlike his ability to easily learn music for instrumental play (he plays the sax and the guitar), he's not a strong singer. And "Fix You" is not an easy song to sing. Most kids chose faster paced rock songs, or newer pop songs by idols like Taylor Swift. Not Dyl. He wanted to sing "Fix You" because he knows it's one of my favorite songs, and a song whose lyrics remind me of diabetes and my "inability" to fix my son's disease.

Courage is one of the qualities that I most admire in Dylan. He has an ability to do whatever he wants without any regard for what others think. And not in an arrogant manner. He is simple sure of himself. Self consciousness? He doesn't have it. Timidity? No, none of that either. Self doubt? No way. He is uber-comfortable in his own skin. I only WISH I had that level of confidence.

Diabetic Ice Cream Social Is Back!

August 4th marks the second annual world-wide Diabetic Ice Cream Social!! Celebrating life, independence, creativity, and, of course, diabetes, the 2nd annual social has a very clear purpose: to show the world that people with diabetes can and will eat ice cream (or anything else they want, for that matter). The event is to happen August 4th, anytime, anywhere.

Too many times I have been told that my son cannot, or should not, eat this or that because it contains too much sugar. After six and a half years with type 1 diabetes, even people in our extended family will still ask me, "Can he eat this?" before serving him a piece of birthday cake at a family celebration. His standard response, "As long as I tell my pump," does not always resonate with them, no matter how many times he says it. Nor do my more detailed explanations of how with diabetes he must count carbohydrates, not sugar, and that he can essentially eat anything he wants, whenever he wants, as long as we bolus for the appropriate amount of insulin. Will we be eating ice cream on the 4th? You can count on it!!

For more info, there is a Facebook page created specifically for this event, and it can be found here. I have taken this event description directly from the Facebook site: 

"This event is meant to showcase that we can LIVE, and THRIVE as Diabetics, and enjoy ourselves... That we do not have limits on life, and that we can live within our boundaries of moderation, education, and common sense. CELEBRATE your life every day... And laugh in the face of ignorance. 


It doesn't matter how you eat your ice cream... Have one scoop or two, if you please, have it sugar free if you must, you can certainly have it low carb, or lactose free, or made with almond milk, you can have it be made of fruit, or a sorbet... Heck, you can even have a different treat, altogether, if you don't even like ice cream! :) (But try to have something that you typically would enjoy, and people would wrongly 'police' you and tell you that you can't eat it.) The point is... WE DIABETICS ARE CREATIVE, SAVVY, AND WE HAVE OPTIONS... AND WE KNOW OUR BODIES. 


And NO ONE should tell us what we can, or cannot eat. We CHOOSE what we want to eat, and what we can handle... And we have glucose meters, and a vast array of glucose control tools to help us make our decisions!"


Thanks to Lizmari, Katrina, Debbie, Michelle, Lara, and Britt for organizing this terrific event!

And feel free to "friend" me on Facebook (Jen Leslie Aragon) so I can add you to the invite list!

Undiagnosed Tragedy

Type 1 Diabetes has struck again, and this time taken the life of a 35 year old man. It was with great sadness that I learned, a few months ago, an acquaintance of mine from high school had died suddenly. While I didn't know him well, we had a number of common friends, and shared one very close friend. At the time of his death, there were many questions. No one knew what had happened and there didn't appear to be an obvious cause of death. Until now. Late last week I was informed that he died as a result of undiagnosed type 1 diabetes.

My initial reaction was shock, then anger, then sadness, as I tried to explain to my heartbroken friend that it takes all of about 3 seconds to diagnose type 1 diabetes; that the symptoms are obvious; that it is a manageable disease; and that his death could have been prevented had someone, anyone, known what to look for. He had suffered months of weight loss, increasing dehydration, and, finally, severe flu like symptoms.

Type 1 diabetes continues to be a silent killer. For those of us within its sphere - who are type 1, or have a loved one with type 1 - the symptoms are easily recognizable. Yet, for those outside of the circle, it is an invisible illness. Education and awareness on the signs of type 1 diabetes are lacking. Period. Like many others, I used to be in the dark. When Dylan was diagnosed I knew absolutely nothing about diabetes. I had no idea that his excessive thirst, frequent urination, massive and sudden weight loss, pallor, and lethargy, were signs of hyperglycemia induced ketoacidosis. Like most parents of a type 1 child at the time of diagnosis, I just thought he had the flu.

While my early advocacy was always focussed on finding a cure for type 1 diabetes, with time I have realized more and more, that awareness and education are just as, if not more so, critically important. Never has that been more obvious to me than now.


*On a side note, this is the 3rd person from my high school class that developed type 1 diabetes as an adult. The 3rd out of 375 graduates. That's a stat much higher than the average.

What They Should Know ~ D Blog Week, Day 5

Today let’s borrow a topic from a #dsma chat held last September.  The tweet asked “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?” Let’s do a little advocating and post what we wish people knew about diabetes.  Have more than one thing you wish people knew?  Go ahead and tell us everything.

1) Type 1 Diabetes is an autoimmune disease. It is NOT caused from eating too much sugar, too little activity, or poor lifestyle choices. It is NOT hereditary (though there may be a genetic factor involved), nor it is contagious. There is nothing anyone could have done to prevent it, and there is nothing that will make it easier, better, or dormant. It is random, incurable, and deadly if not managed well.

2) It is all encompassing. It takes a colossal amount of time, energy, money, and sanity, to effectively manage diabetes. So if it seems like I talk about diabetes a lot, it is because we have lived with it 24 hours a day, 7 days a week, 365 days a year, for 6 and a half years. 

3) It can wreak havoc on my child's body. Lows cause my son weakness, sweats, shakes, dizziness, headaches, and, if untreated, can lead to seizure, coma, or death. Highs in Dylan cause swelling, extreme thirst, nausea, fatigue, and headache. Possible long term side effects include kidney failure, blindness, leg amputation, heart problems, and gum disease. So even though he looks amazingly healthy right now, only he knows what is going on inside his body at any given time.

4) My kid is tough. Really really really tough. He has poked his finger to check his blood sugar level over 14,000 times, received over 2,200 insulin injections via syringe, and had more than 500 infusion set changes. That is a LOT of needles. But where Dylan is really tough is in spirit. He believes in himself, he knows he can do anything he wants, and he does not let diabetes stand in his way. So yes, he has a serious medical condition, but don't you dare count my son out of anything, or ever assume for a minute that he can't do something because of diabetes. He CAN and he WILL prove you wrong, time and time again.

Teach a Man to Fish ~ D Blog Week, Day 2

Living with diabetes (or caring for someone who lives with it) sure does take a lot of work, and it’s easy to be hard on ourselves if we aren’t “perfect”.  But today it’s time to give ourselves some much deserved credit.  Tell us about just one diabetes thing you (or your loved one) does spectacularly!  Fasting blood sugar checks, oral meds sorted and ready, something always on hand to treat a low, or anything that you do for diabetes.  Nothing is too big or too small to celebrate doing well! 

One perfect thing. Hmm. To be honest, when I first read this topic I thought of all the things I don't do perfectly; all the things I could do BETTER. I'm human, I make mistakes. Even when it comes to diabetes care for my son. 

Sometimes I forget to take a tester when we leave the house. We test a lot but could always test more. I'm not bang-on every time when guessing carbs (though I am pretty darn close most of the time, thank you very much). I let the infusion set go an extra day if it looks good and is still working properly. I tend to over-treat lows. I'm scared to bolus a high bg in the middle of the night out of fear that Dyl will get too low. I hold my breath when I enter his room to check a nighttime bg and I don't release it until I know he's still breathing.

Could I do better? Definitely. But there is one thing I have done very well; the one thing I really pride myself on when it's comes to diabetes. And that's teach. I've taught Dylan how to take care of the majority of his own diabetes care because I can't be there every minute. I oversee everything, of course, but for the most part, he's got it. He does his own tests. He counts his own carbs (sometimes better than I do). He is the master of his pump and knows its ins and outs as if it's a part of his own body. He can change his own infusion sets, though he prefers not to. He treats his own highs and lows. And he knows when to ask for help. 

The most powerful tool I've given him, however, is the belief and understanding that diabetes does not define him. It is a part of him, but not all of him. He can do anything he wants, eat anything he wants, be anything he wants. Diabetes has not, does not, and will not, EVER, stand in his way.

Best Conversation I Had This Week ~ HAWMC, Day 8

Strangely, the best conversation I had this week was tonight, after Easter dinner. While at a small family gathering we got into a brief discussion about type 2 diabetes and its causes, and I quickly discovered that misinformation exists, even among family. 

An immediately family member on my husband's side has recently (a few months ago) been diagnosed with type 2 diabetes. After a few months of paying attention to diet and limiting high sugar/high fat foods, he has lost weight and reduced his need for oral medication by 25%. He is doing fabulously, and has adapted very well. Yet he was telling me how a nurse at the diabetes clinic had recently informed him that even if he loses more weight, eliminates his need for oral diabetes medication, and stabilizes his blood sugar, that his type 2 diabetes will never go away. The symptoms may disappear, but he will ALWAYS have type 2 diabetes. FYI - This was a direct contradiction of what he had been told at diagnosis, so thanks to that diabetes educator/nurse for setting the record straight.

He then went on to say how there have been numerous cases of type 2 diabetes in my husband's family, both on his maternal and paternal sides, thus greatly increasing the risk to other family members. At this point, a third person joined the conversation, casually inquiring about his personal risk. I explained that there are a number of factors that lead to the development of type 2 diabetes, particularly genetics, obesity, age, and race, and that his particular risk would be considered low because he is not overweight, exercises regularly, and is relatively young. Yet, he is hispanic (the prevalence of type 2 diabetes is 15% in people of hispanic descent, as opposed to 6% in individuals of caucasian descent) and carries a genetic disposition to the disease. I then said that the best way to reduce his risk is to continue to exercise regularly and maintain a healthy body weight, particularly as he gets older. But, I said, there are no guarantees. Genetics dictate that even with the best prevention, he may still develop type 2 diabetes at some point in the future.

At this point, the conversation shifted as two other family members jumped in and contradicted what we had been discussing, stating that as long as he exercised regularly, there was no chance he would EVER develop type 2 diabetes; that type 2 diabetes is caused by poor diet and a lack of exercise. 

Whoa whoa whoa, hold on a minute, are you effing kidding me? My own family? Tell me it isn't so...

I certainly do not claim to be any kind of medical professional or diabetes "expert," but with a son who has had type 1 diabetes for over 6 years, I've read a ton of diabetes literature, attended dozens of conferences and research symposiums, and have tried my absolute best to educate my family and friends about diabetes. And part of that education has been with a focus on eliminating myths and the spread of misinformation. If ANYONE in my family still believes that diabetes, be it type 1 or type 2, is caused entirely by lifestyle factors, I have clearly failed in my efforts to educate.

Hope vs Acceptance

When Dylan was first diagnosed with Type 1 Diabetes six and a half years ago, I was adamant about doing everything I could to help to find a cure; I fundraised, I volunteered, I advocated, and, above all, I hoped. My hope that a cure would come in Dylan's lifetime was so unwavering that I would stop at nothing to see it into fruition. And we were not among the parents who were told by medical professionals that a cure would be found within five, or even ten, years. I clearly remember our endocrinologist saying that she felt a cure for Type 1 Diabetes would be available by the time Dylan was my age (I was thirty at Dylan's diagnosis, he was three days shy of his fifth birthday), but that there were no guarantees. Yet I jumped into my advocacy as if a cure was imminent.

Those first few years, Dylan and I used to talk often about what a cure would mean to him. He was young and a cure would mean freedom from this new restrictive lifestyle. It would mean no more injections, no more finger pokes, no more counting carbs, no more mom obsessing over his every move, no more constant worrying (well, the latter two would probably continue regardless, I am a mom after all...).

Then when Dylan was nine, he volunteered as a Youth Ambassador for JDRF and gave a number of speeches to corporations about what it was really like being a child and living with type 1 diabetes. At the end of each speech he always spoke briefly about what a cure would mean to him. His speech ended with,


"What would a cure mean to me? A cure for diabetes would make me feel free. Free to eat what I want, when I want. To eat my Halloween candy on Halloween and my Easter eggs at Easter, free to be just a regular kid. Right now there is no cure for type-1 diabetes, but we can change that with your help. This June, join me and the many other children, teens, and adults with diabetes as we walk to find a cure, so kids like me can live happy and free. I don’t let my diabetes get me down, but I do want a cure so I don’t have to deal with diabetes every minute, every hour, every day."

That was only two years ago, and yet so much has changed. At eleven years old, Dylan has become a young man, and has become so responsible with his diabetes care. The disease has been fully enveloped into our lives; it is routine, in a way. And sometime in the last two years, Dylan and I stopped talking about a cure. It wasn't that we stopped believing, or gave up hope. Maybe it was due to the fact that he could no longer remember life without diabetes; or perhaps it was that those conversations simply took a backseat to everyday life. Whatever the reason, a cure was no longer on the forefront of our minds. We went from hope to acceptance.

Fast forward to last week, when I got a mass email from the Canadian Diabetes Association asking individuals to share their stories. They want Canadians touched by diabetes to describe what a cure would mean to them, and post it to the CDA Facebook page. Readers will then vote on the stories, and the author of the story with the most votes will win an iPad 2. I really didn't think anything of it at the time, but later I realized how long it has been since Dylan and I had talked about a cure. 

That same evening I asked Dylan what he thought. I didn't ask him if he hoped for a cure, because we all know the answer to that question; I asked him if he still thought about a cure. His response came immediately, without any hesitation. "Every day," he said. "Really?" I asked. "Yes," he replied, "but I try not to worry about it too much. I've accepted that diabetes is my life, so I deal with it." That was it, end of conversation.

As the tears inevitably flooded my eyes, I stood up and left the room. I was literally unsure of how to feel about his response, and I'm still torn. A part of me is so proud of him for his mature outlook and acceptance, partly because it would break my heart to learn that he pines for a life he may never have, and partly because, in the long run, this attitude will likely lead him to take better care of his diabetes as he gets older. At the same time, however, hope is important; believing that a cure is out there somewhere can provide solace and comfort in times of need and desperation.

So I guess my question for readers is: At what point, if ever, do you give up hope for a life free of diabetes and simply accept the life you've been given?

Wordless Wednesday ~ Blue Heel Society

If you haven't checked out this amazing diabetes advocacy organization yet, what are you waiting for?