A Bucket of Gratitude

We all have seen how insanely popular the Ice Bucket Challenge has become.  Stories of how much money ALS has raised since this went viral versus how much money it had raised in previous years are astounding.  What is equally moving is the stories of families touched by ALS.  I dare you to watch any of them without a box of Kleenex.


Last week on the Diabetes Advocacy Facebook page, I shared with you Moira McCarthy’s thoughts on this phenomenon and whether diabetes should be doing something similar. Reading about how ALS had touched her family brought tears to my eyes and I was so glad that my son “only has diabetes”.


I have not watched many of the ice bucket videos.  I have seen a few that have auto-started on my Facebook feed but for the most part I simply have said “I hope that they are donating” and “Better them than me but it is for a good cause.”  There are a few from friends who state that they have a personal connections to ALS that I do make sure that I watch .


Maybe that is why I played this next video.    It was from a Facebook Friend who had a child with diabetes who said that ALS had come to call. I was curious.  Would it be her father? Grandmother? I was sure that it would be sad but I had been following the many blessings in their lives. They had recently moved across the country into a dream house. They had enjoyed an amazing summer spent traveling throughout this great country of ours.  Life was very good for them, wasn’t it? After listening to her tell her family’s story, well let’s just say that I was again left very grateful that all my son had to deal with was diabetes.



I know that diabetes kills. I know that diabetes is serious.  I know that things can change in the blink of an eye.  In the past month we have seen depression kill Robin Williams.  We have seen countless stories of how ALS has impacted and destroyed lives.  I have seen a family devastated when a father tried to save his drowning daughter only to be killed instead. Life and death happen. We deal with the cards that we are dealt but some of us have greater challenges to face than others.


In a blink of an eye it could be worse–so much worse. Diabetes can be cruel but life with diabetes is getting better. Highs are still brutal in their destruction of the body.  Lows are still deadly especially when they happen at night or when a person with diabetes is alone. There is hope however. Technology has created major changes.


We have the bionic and artificial pancreas projects.  We have CGMs, rapid insulin, and smart pumps.  We have apps to count carbs and apps to get us out of trouble.  We have a wonderful community of people living with diabetes who get it and support us every day.  Diabetes sucks but after seeing what others live with…well I will take diabetes with a bucket of gratitude.

Diabetes and Depression

I don’t want to get out of bed. What difference does it make any way? I am tired. I don’t matter. I can’t take it any more. I can’t lift this dark cloud that hangs over me. I am poor company. My family is much better off without me. I don’t make a difference in the world. I am just taking up space. No one would miss me. What is the point?


Does any of that sound familiar? Many of us have had some or all of these thoughts to varying degrees. Yesterday’s passing of Robin Williams showed us that money, fame, and talent do not protect you from the devastating reach of depression. Sadly, if you live with diabetes, you are also twice as likely as the rest of the general population to be effected by depression.


The Diagnostic and Statistical Manual of Mental Disorders characterizes clinical depression “as having five of more of the following symptoms during a 2 week period and represents a change from previous functioning with at least one of the symptoms being a depressed mood or loss of interest or pleasure.  The other symptoms included a diminished interest or pleasure in almost all activities most of the day, may appear tearful,  significant weight loss or gain, insomnia or hypersomnia nearly every day, psycho-motor agitation or retardation never every day, fatigue or loss of energy nearly every day, feeling worthless or excessive or inappropriate guilt, diminished ability to think or concentrate, or indecisiveness, recurrent thoughts of death, recurrent suicidal ideation without a specific plan or suicide attempt.  These symptoms are not brought on by medication or other physical condition and impair ones social, occupational or other important areas of functioning. ”


Everyone has those days when the world seems dark and bleak.  People living with diabetes however are cautioned by experts to watch a bit closer for signs of clinical depression in their own lives.  Gary Scheiner mentions this issue in his book “Until There is a Cure“.  He and others note that the pressure that comes with diabetes care, the need to “get it right”, and be the perfect diabetic can lead to failure and a deep sadness that can spiral into clinical depression.


We are also reminded that the people with diabetes are not the only potential victims.  Parents of children with diabetes may also find themselves in a pit from which they cannot see the light. We often experience our own guilt for first somehow allowing our child to develop this disease. There is the guilt over nagging them to test or inject.  The feelings that we are robbing our children of a “normal” childhood by forcing them to take responsibility for their diabetes care too soon can be overwhelming. The list of reasons for sadness go on in both those living with diabetes and those who care for them. The challenge is to recognize the symptoms and get help.


The Mayo Clinic feels so strongly in this that their website specifically cautions people living with diabetes to be very alert to signs of depression.  If you feel that you are suffering from clinical depression, please see your doctor.  Just as you take insulin to deal with the imbalance in your body thanks to a non-functioning pancreas, it is important to take medication that can help to work with brain chemistry that has somehow found itself out of balance as well.


Counseling, therapy, and even life coaching can help to deal with the daily stressors of diabetes care.  They can help you to deal with triggers and create coping strategies but they will not fix the chemistry if you suffer from clinical depression. If you are struggling with a diabetes diagnosis, please look for support from others. If you feel that the depression and sadness has become prolonged or overwhelming, please see your doctor. Together you can  create a plan to help you find your way forward again.

Thank you for the years of enjoyment and sharing your talent. May you find the peace in death that you were unable to find in life. RIP

The Bionic Pancreas Moves Closer to Reality

For the past year or so we have been hearing clips about the Bionic Pancreas Project.  I was lucky enough to have heard  Dr. Ed Damiano present about his  work at the CWD Friends for Life Conference in Toronto.  It was the first time that I was truly excited by what was happening in diabetes research.

This was a project that was privately funded and motivated by a father’s love. There was no political agenda to hold things up.  There was only his passion and desire to see his son safe when he could no longer be there to watch him at night.  His drive pulled at my heart and for the first time gave me hope.

This summer, clinical trials are continuing.  More adults are getting to experience life with the bionic pancreas.  More children are getting to experience it as well. According to the latest video, they are now reaching the stage to change the design making things more streamline.  This is moving quickly to become a reality!

Being me, and spending so many years advocating for access to better treatments regardless of income or insurance coverage, I can’t help but wonder what direction this project will take.  To me, and I am sure to Dr. Damiano, this device is the diabetes equivalent of a pacemaker and should come under the larger umbrella of our health care system making it available to everyone who is insulin dependent.

At this stage, they are far from knowing how things will proceed in terms of distribution.  We will have to wait.  While we wait, I will continue to work to see access to insulin pumps and CGMs for all people with diabetes regardless of age.  I will continue to put money into my son’s RDSP just in case he does have to purchase the system out-of-pocket to begin with.  If need be, we will advocate for access for everyone to this life changing technology but for now, I will watch and cheer from the sidelines.  I will hope that this will be the technology that changes the life of my son and all of our children with diabetes (no matter what their age).

Support in the Strangest of Places

I am an avid reader. I have loved to read since I was a child. If I could find a way to read for a living, I would be a very happy and ideally very rich person.  I read everything. I read action books, mysteries, spiritual books, diabetes books, and most recently a book about a mother of a girl who has anorexia.

I am not exactly sure what made me decide to open this book and read it.  Perhaps it is my own struggle with my body image. Perhaps it was the fact that is was a mother telling a story of her struggle with her child's potentially lethal disease.  Whatever it was, this book quickly showed me that being a parent of a child with a disease--any disease, sadly puts you in a club with more similarities than differences.

Brave Girl Eating by Harriet Brown, first hit home when she wrote "you're not to blame, you're not alone, and you can make a difference in your child's life".  What a powerful statement! It needs to be a poster in our diabetes clinics.  It is a statement that each and every parent of a child with diabetes needs to fully understand and embrace.  As I have said before, we carry our own guilt and are further burdened by the misconceptions of others. We need to know that we are doing our very best and that is all that any one can ask.

For some reason, Ms. Brown seemed to make more than one comparison of life with anorexia and life with diabetes.  I am not sure if she knew someone living with diabetes or in her research she found some similarities but she does make reference to living with the disease on more than one occasion.  She also makes many statements that could easily apply to living with a child with diabetes.

She talks about feeling overwhelmed by her daughter's illness and then feeling guilty about it. "I can take a walk, read a book, shut out the anorexia for a little while. But its insider her. She can't get away, not for a second." How many  parents of children with diabetes have felt that exact same way? How often have we felt guilty because we could sleep through the night when our child went away to camp or when we went on vacation and left them with a responsible parent or loved one? It hurts us to know that we can leave it behind but our children can't.

She talks about things like her daughter lying to her about food and again the issue crosses over easily into life with diabetes.  In our case, our children tend to reach an age where they lie about food intake, insulin dosing, or bg level readings.  The violation of our trust is devastating either way and in both cases the lie is brought about by frustrations with a disease. It isn't any better no matter where it comes from. The pain and sadness as a parent is equally overwhelming.

Ms. Brown talks about wondering if her daughter's behavior is because of anorexia or simply because she is a teen?  When my son was small and would fall asleep during the day, I would panic and test him.  Was he sleeping because he was a toddler who was tired or was he low and had passed out? If he threw a tantrum, was he being a child full of spite and temper or was his rage fueled by high blood glucose and therefore he may not completely responsible for his actions? How did I decide? How did I find a balance with punishment? Like the author, I struggled.

In Brave Girl Eating, the author also talks about stigma.  In this case the stigma of a mental illness. In diabetes, we know that there are many stigmas and fighting the public's misconceptions can often be almost as difficult as battling bg levels.  To make things even worse, there are an increased number of people living with diabetes who also are dealing with eating disorders (is it any wonder when their lives revolve around food 24/7) as well as depression.  They must understand this book in more ways than I can begin to imagine.  How painful.

Ms. Brown also speaks to the idea that anorexia has taught her to live in the moment. Ironically diabetes has had a similar effect on my own life.  Learning to live life four hours at a time was the only way for me to cope.  Nothing else mattered. Tomorrow was too far away but his NovoRapid would kick in within four hours and it could fix that high, maintain his perfect reading or be just enough to send him low and create more havoc for me.  Four hours--just get through four hours and then go forward.

As I mentioned, ironically she notes the similarity to diabetes more than once. In learning to live with the new normal of life with anorexia, she wrote, "I told her if she had diabetes, she'd have to test her blood sugar every day; at first it would be a pain, but she'd get used to it.  It would become just one of those things she had to do, like brushing her teeth.  It would become part of "normal" for her."  We know that diabetes is a bit more than testing daily.  We know that you never really get used to lancing your finger each day, but it is something that has to be done...like brushing your teeth.  It is something that you somehow have to come to accept in order to move forward with your life.

Its funny where you find inspiration and camaraderie. I started this book because I was in part looking for insight into my own body image issues.  I finished this book realizing that parents of children fighting illnesses may have many more similarities than we thought possible.  When we open our minds and our hearts, we find support in the strangest of places.

Dealing with Diabetes Burnout..A Book Review

Ginger Vieira recently released her third book called Dealing with Diabetes Burnout,  How to Recharge and Get Back on Track When You Feel Frustrated and Overwhelmed by Diabetes. I was once again lucky enough to be given a copy of the book to read. As I prepared to write my overview of the book, I  took a glance at how many pages of interest I had marked off. A lot! That means that this was a wonderful book with many excellent points for me to share!

I really wasn’t sure what to expect when I began reading this book.  What would I learn? Would much of it apply to me? Who would this book fit? Well, I learned quite a bit. I gained a new perspective and I can think of quite a few people who this book would help.  Most importantly however, it is a great hands on resource for people who live with diabetes–Type 1 or Type 2.

This book doesn’t just give you a bunch of information and feel good stories.  It is filled with exercises and activities that Ginger challenges you to do to help you deal with your own diabetes burnout.  She doesn’t chastise you for the fact that “I haven’t checked my blood sugar in three weeks (ehh…months)” –a fabulous title of one of the chapters of the book.  Instead she reminds you that you are being asked to manage something that your body is supposed to do on its own based on a variety of other physiological and hormonal processes. (page 21).  She tells  you to look at all of the great things that you are doing and praise yourself for the one thing you are getting right. “developing the ability to step back and see what wasn’t working–rather than blaming yourself–is the trick to creating a new plan that will lead you to your goal.” (Page 33)

This theme is further emphasized by all of the great chapter titles like “I want to be perfect by tomorrow (or I’m giving up!) where Ginger notes that some times are not ideal for change. She suggests that you create your own personalized “pick up plan” to help you refocus in times of stress.

Ginger offers tips on how to handle support from well-meaning people who really don’t get it as well as how to best make use of people who do get it and do want to help.  She shows you how to use technology to make your life a bit easier as well as great real life tips for those of us who would just like to live a healthier lifestyle but find ourselves giving up too soon.

Being a parent of a child with diabetes, as I began to read this book I felt horrible.  I was a failure.  I was the parent who struggled to understand how you could “forget” to do something that you have done all of your life.  Did I push too hard?  Should I have been calmer when his doctor praised him for testing more than once per day and I was looking to see 8-12 readings per day? I was sure that I had totally ruined my son’s childhood.

Thankfully I got some reprieve from my incredible guilt when I moved into the chapter called “Crazy Little Thing Called Love”.  Here Ginger talks about raising a child with diabetes and how truly difficult it is to do. She highlights many of the fears that we have.  The torture we go through when our child is low and disoriented or the failure we feel when they are high and we are positive that we alone are responsible for the kidney damage they may one day have. She offers more wisdom and options to dealing with our children and how to get through to our teens. I was left knowing that I hadn’t scared my child completely…well at least not in that realm.

Nearing the end of the book, I came across one of the very best quotes I have ever read on the issue of diabetes care and one that should be framed and read by everyone dealing with this disease (especially us guilt laden parents)….
“Doing the best any of us can do in life with diabetes does not have to mean perfect blood sugars all the time. Sometimes our best is awesome and sometimes it’s not quite so awesome but it’s still our best in that moment.  And that’s okay.  It has to be, because “perfection” is a crazy expectation.”  

Dealing with Diabetes Burnout is a fabulous resource. If I had one criticism of the book it would be having too many personal stories illustrating various points in the book. Reading through page after page of examples of other people’s burnout was taxing on my incredibly shrinking attention span. That said however, I have no clue as to how I would have cut back on some of the submissions that were used.  They were often very powerful stories that needed to be shared.

Who should read this book? Anyone living with diabetes because as Ginger Vieira notes, at one point you will go through some form of burnout.  To a lesser degree, parents of children of diabetes (no matter what age your “child” may be).  This book will give you insight into the emotions that your child may be dealing with and will also give you a few tips to help you in your own life as well.

Mom! It looks like I've Been Shot...Again

In honor of Throwback Thursday, here is a humorous post from May 4th, 2010. Enjoy!

Last night I wrestled my son to the ground and later heard about the consequences. You see said child, admitted that no he hadn't been spending his time mulling over the perfect gifts to purchase for his devoted mother for either Mother's Day or her birthday.  In some countries I am sure his actions would have constituted a hanging offense but in our house in meant that I tackled him, interrupted his Wii game, pinned him down and tickled him.  Thankfully I still have a few pounds and an inch or two on him so I can still win. 


The downside to this fun when you have a child on an insulin pump who wears sites in his leg is obvious to those of us who live there.  After the screams of "I've gotta pee!!!!", came the grumblings of "You pulled out my site!".  With the cost of pump supplies being covered for us, it felt good to say "Well, just go and change it."  Once upon a time, I would have cried at the $20+ that I had just wasted even if it was in the name of fun. 


Being a teen, my son was in no rush to change the site and Mom had visions of highs for the rest of the evening.  The longer he waited, the less insulin he would get, the higher his bg levels would climb I was sure.  Again, being a teen and being my son, he stated that the site was salvageable and he had simply taped it in place.  I was worried.  Was the site really still in? Yes he assured me as he headed off to the shower.  His grumbling about being bested by his mother had been replaced by the comment that if Mom could wrestle him then wrestling with his brother should once again be allowed (It was discontinued after brother's elbow met son's eye and left a nasty shiner).  I attempted to burst his bubble but he still was quite proud of his logic as he headed off for his marathon shower. 


Once he undressed he proclaimed "Mom, I look like I have been shot!"  What did that mean? He told me that there was blood all over his leg.  I said that was it, the site was gone! He had to change it.  He proceeded to shower and I never got to really check out the damage.  He kindly left the dead and bloodied site in the shower for me though.  Ironically he was disgusted when he found it on top of an envelope later.  I had taken a picture and left it for him. He told me that the site should be in the garbage! Um, who left it in the shower to start with? Oy!

Looking from a distance

Today is Saturday’s snapshots. At first I was a bit troubled by this.  What does my life with diabetes look like these days? Well its different than even one year ago.  Should I show pictures of my son’s life? I decided that I shouldn’t.  My pictures would be of my life with diabetes…living with it at a distance.

Now when I find test strips at the bottom of my purse, I don’t swear and wonder how they got there, I think of my youngest son and smile instead.



















My conversations are often done via text rather than in person…

















But we still get a chance to spend time together and share care when we can.

Hello...I am a Glucometer

Write a short story personifying a diabetes tool you use on a daily basis. A meter, syringe, pump, pill, etc. Give it a personality and a name and let it speak through you. What would it be happy about, upset about, mad about?  (Thank you Heather of Unexpected Blues for this topic.)

Hello, my name is Fred and I am a glucometer.  You would think with a job as important as mine that I would get a lot of respect but I don’t.  I am shoved in dark pockets, thrown around and basically taken for granted. Its a very rough life.

I am expected to be ready for service at all times of the day. It doesn’t matter if I worked hard all day, they still expect me to be bright-eyed and shining at three in the morning. And when I say shining, I mean that they really want me to light up all nice and bright showing them glowing pretty numbers. When they are done with me, they just toss me off to the side again.

My job is tireless.  They smear blood all over me.  They curse at me when they don’t like what the reading is.  Like that is my fault? How is it that I control what their blood glucose is going to be? I deserve a lot more respect.

The only time I get respect is when the parents or the doctor take a look at me.  They know how important I am.  They look at my display as if they are reading a holy gospel.  They value me and my knowledge.  My owner? Well, he looks at me like I am a rock, a burden that he is forced to carry around. I am the unwanted younger brother that he has to take everywhere.

Why does he have to think of me that way? It hurts my feelings. I am just trying to do my job. I am trying to work with him to keep him healthy.  I know that it can be tedious. It’s not picnic for me either. I mean, I have to be on all of the time! There is no time when I can be just a little less accurate. I have to bring my A-game every time we meet.  Its exhausting but I don’t get any praise or appreciation.

He just doesn’t get it and some times I get mad as well and when I do, I get even in my own way.  When he just grumpily and shoves a strip in me and expects me to instantly produce results, I come back and tell him “Error 4″.  Oh does that get his goat! He has to retest and take his time to treat me a little nicer–getting all of his blood just so on the test strip so that I will read it for him.  After he has done that, I reward him by saying “HI” but he doesn’t often see the humor in that one. I don’t understand why.  Isn’t it important to be friendly now and then? Perhaps if he could be a little nicer, we could work together a bit better and I wouldn’t have to resort to cheap jibes.

Maybe one day he will get it. One day he might understand how important I am! Oh well, at least he takes me most places. I usually only hear about the spots that we go to from the inside of a pocket but at least I get to tag along.  It’s not easy being me.  I guess it’s not easy being him either, but I still say, “work with me dude! It will make things so much easier!”  Darn! I shouldn’t have said that so loud, here comes another check. Back to work!

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A Salute to the D-Warriors

Back to it. Back to that new normal life…where diabetes isn’t in it 24/7. It is still strange but this past week with my son was also a bit of an awakening. One in which perhaps more people should be exposed to.
My son was diagnosed with Type 1 diabetes over 14 years ago. He lived with me the bulk of that time. In September he chose to move to finish high school with his lifelong friends. It killed me inside but it was a choice that he had to make.

In the past six months, I have not had to get up in the middle of the night to test bg levels, but I still wake up. I haven’t had to worry about site changes but I still am in charge of ordering supplies. My role has changed. It is still taking some getting used to.

I was thrown back into the fray last week. Diabetes came back into my life in a huge way. It gave me a new respect for my son and for all people with diabetes. It brought a new pain to my heart. I wished that others could have seen what I saw and experienced what my son experienced. Perhaps if more people did, then more doctors would fully get it. Perhaps if more people did then more politicians and insurance companies would understand. Perhaps then more research projects would be funded and there would be a greater understanding and drive for a cure.

My son arrived on a Monday after a 10 hour day of driving. He was high. I asked him what was up. He explained. “I should have set an increased basal rate to cover all of that inactivity driving in the truck. I ate at a fast food restaurant but the meal I chose wasn’t too high in fat. I may also need a site change.”

I looked up the meal that he had eaten. It was a lot higher in fat than he had thought. We discussed extending boluses to cover those high fat meals. We talked formulas and I hoped that he might remember the concept the next time he ate out.

Because of those small oversights, he was high for the rest of the evening. He went through gallons of water and found it hard to socialize when he was spending so much time in the washroom.

His visit continued this way. There were highs. There were logical reasons for them. There were mistakes made. He is only human. Together we worked to fix them. There were injections and new sites. Sites fell out and got kinked. There were replacement sites and more injections to cover the missed insulin and bring him down. There was more water. He spent more time in the washroom.

I was exhausted. He took it all in stride. We discussed strategies. I suggested changing sites a little sooner when he was having highs. He told me that when he got too high he felt a burning in his legs and after a bit he would smell a strange smell. He said it was like his brain was frying because he was so high and he would smell it happening. My heart broke.
After days of “stuff happening”…a bad site, a poor carbohydrate calculation, a bolus delivered wrong, we finally saw him in range for longer than an hour. He was able to sleep through the night without a trip to the washroom every half an hour. He was able to put down the water bottle and enjoy a casual glass of diet Dr. Pepper. The battle was over and he had won. The war would continue another day however.

As he got on the plane for his trip home, my hands-on role ended. I was no longer in the trenches with him until he had another break and came to visit. That was not the case for him. His battle would continue on the plane where I learned after he landed, that the air pressure of the plane would impact the insulin delivery on his pump. Once again, after the fact we would know the reason behind a high or low but were at that point powerless to stop it. We hadn’t known.

How stressful must this be for a person living with diabetes? My son told me how his doctor lectured him when he goes to his appointments (although I am guessing that the bulk of his lectures are just). He stated that he the CDE he was sent to was more concerned with reading him documents than teaching him something useful. He is just beginning his journey of learning to be his own advocate.

As much as I complain about his lack of self care. Each time we talk, I am amazed at how much he does know about his own care. Some of the information he has heard from my lecturing and teaching, as well as the things he has learned at CWD conferences has sunk in. He is a teen and may not always do what he is supposed to but he does have the knowledge when he chooses to apply.

It will be up to him to apply the knowledge. It will be up to him to show his medical team that he is very educated in his care. It will be up to him to decide to take care of his body. It is a huge challenge. As people who do not have diabetes, it can be easy for us to judge and demand better. It only makes sense to take care of you. You will feel better. It’s not always that easy. Stuff happens.

This week was exhausting and I didn’t have the physical toll that he did. I was the coach on the sidelines, offering help when I could. I made suggestions, I took over care, I carried a small amount of the burden but he carried the bulk of the weight.

I could see him sitting in a meeting with his diabetes team and having them see this past week’s readings. There would be questions. Would he feel defensive? I would have. Would he feel judged? I would have. Did he do his best? Yes. Do the numbers look like it? No…and yes. Readings were high, but then we had a victory and things came down…before the next stumble and up they went. Should we have known better? Yes…and no. Yes, he knows to increase his basal when traveling but no he didn’t know the carb counts for some of the restaurant foods. Even with calorie counting software, errors were made. How could we have known that the site that went into his leg would bend—twice? There are so many factors going into managing diabetes. Even for those of us who have lived beside someone for 14 years, we can’t fully understand.

As a parent it is torture. I want to fix this. I want to take it from him. He doesn’t ask me to. He knows that I will do my best. When he stumbles or appears not to take care of himself the way that I would like to see, I get upset and even angry. I understand the toll that it can take on his body. I know the toll that a causal attitude will take on him long term. I know that he has the knowledge and I pray he will chose to use it sooner rather than later. I don’t always remember the struggle to balance being a teen boy and being a person with diabetes however. It has to be hard.

I won’t quit demanding the best from him. I won’t be able to stop being disappointed when I don’t see adequate testing. I will take this week and use it as I go forward however. It has been a great lesson to share when advocating for better care for people with diabetes. It has given me a new respect for all that my son deals with when Mom isn’t there to carry some of the burden. It has reminded me of how much diabetes sucks and how despite the fact that a lot has changed in 14 years, we still have a long way to go.

Fourteen Years Since My World Exploded

14 years ago today my world turned upside down. It was not a fork in the road. It was not a minor blip on the radar of life. A bomb exploded and it forever changed the landscape of my life. 

 

14 years ago this morning, I was looking at a sick little boy in my arms and was waiting to be able to take him in to see our doctor.  I was ignorant of what was to come. 

 

14 years later, my son is a young man making his own decisions and stretching his wings...who just happens to live with Type 1 diabetes.  I am stumbling to come to terms with my new role of no longer being a hands on mom and often find myself looking back to see what I have done in hopes of figuring out where I will go next. 

 

14 years have brought many changes.  Insulin pumps are more readily available and continuous glucose monitors are no longer things found in hospitals that are blinded for 7 days.  They are real tools that families and individuals are using in real-time to help fine tune their care. 

 

14 years ago, diabetes threatened to take the life of my son.  Today he is strong, vibrant and learning how to handle his disease.  Diabetes does not control him. Its just his "thing" to live with.

 

We have not always seen smooth sailing. We have had our moments.  He has driven me crazy at times--failing to test or change infusion sets. He still can drive me nuts. I have yelled at him because of my own failings and frustrations.  We are not perfect but we are living. As the commercial says, we are living with diabetes. It stops him from little. 

 

Diabetes has brought me the most incredible friendships.  I have friends throughout the world who have reached out at various times in my life to help me up or shove me forward. I hope I have done the same for them. 

 

14 years seems like such a long time and yet I can see us back in that ICU just like it was yesterday.  Some things you never forget...my son has but I haven't. Instead, on days like today,  I look back and say thank you! Thank you to the doctors and specialists that kept him alive and have taught us through the years.  Thank you to the Higher Power that has been with us through it all. Thank you to the friends and family who have joined us on this journey. Thank you for 14 years of good health and improved technology! 

 

Diabetes sucks but life after diabetes...well its still life and that is pretty amazing!

 

What if Diabetes Hadn't Come Knocking?

What if diabetes hadn’t entered our lives 14 years ago? What if my son never had to lance his finger or inject himself? What if we had never heard of insulin pumps or continuous glucose monitors? What if I was able to sleep through the night once he turned two and never looked back? What would our world be like?

 

I have no idea and after letting these questions sit in my mind for all of a minute, I decided that it really wasn’t worth my time to even ponder. Chances are that my world, and his, would be vastly different but nothing will allow us to go back.  Nothing will change what is

.

Perhaps I would have returned to the workforce once he entered grade one as I had originally planned. Perhaps I would have found a job related to my degree…or not. Perhaps I would have still been involved in school politics…or not. Perhaps I would have still stood up to injustices that I saw locally, provincially, or nationally…or not. It doesn’t matter what I might have done. It only matters what I have done. 

 

My son was diagnosed with Type 1 diabetes when he was 2 years old. He knows no life before injections, carb counting and the lancing of fingers.  His life is filled with diabetes supplies and nutritional information packages.  He has to learn to adapt to peer pressures, girlfriends, career goals, and diabetes care not necessarily in that order.

 

After diabetes moved in I made a decision not to return to the workforce. I stayed home with my children to be readily available to my son at school and throughout the nights. I was lucky to have been able to make that choice.

 

I created a website, rambled in a blog, and turned to social media to seek support and later hopefully provide some.  I stepped up when I saw something that I didn’t like, and as always had been my way, I worked to change it.  The difference was that diabetes made these issues that I stood for more meaningful, more personal, and impacted more people.

 

I don’t spend a lot of time looking back and saying what if… I spend some time wondering if I could have done some things better but I try not to live there. I rarely, if ever think about what life would have been like without diabetes. It is a part of our lives. It is my son’s disease but it has impacted our entire family.  It has brought us blessings and has lived in our nightmares.  It creates struggles and issues that would not otherwise exist but it is part of our life.  It requires constant vigilance but so does life.  It shows us our strengths and reminds us of the importance of family and friendships. It shows us a new definition of family.

 

 

I don’t spend time wondering “what if diabetes missed our family?”  I don’t spend time thinking about a cure. I pray for a time when my son can access new technologies like the bionic pancreas that will make his life easier.  I quietly hope that he will live to see a cure but it is a hope that sits at the far edge of my mind.  More importantly, I pray that my children are happy. I hope that they both have long lives. I want them to maintain their health and hope that  they always know how much they are loved, valued and cared about.

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Five Tips to Surviving Raising a Child with Diabetes

This month marks fourteen years living with diabetes. They were not easy years. They still are not easy.  Each year has its own challenges--sometimes it seems like each day has its challenges!  I have had some amazing supports throughout the years however. I found a family online, some of whom I have met in person and some I still hope to meet one day.  They have helped to keep me going--offering support, words of encouragement and the occasional kick in the bum to send me in the right direction. 

 

I thought it would be a great time for me to share with you a few of the tips and tricks that have kept me marginally sane and allowed me to get up each day. 

 

1. It's okay to cry.  We all have our moments. We can't carry the full burden of worry and care. It's okay to breakdown now and then. Do it in the shower where you can scream at the top of your lungs.  Allow your child to scream too.  When you are both exhausted, hold onto each other and look at how best to move forward together.

 

2.  Find people of a similar nature.  Meet people online or in your community who get it.  Seek them out, ask them how they handle things and simply enjoy being around other people who get it.  Allow your children to spend time with these people as well so that they understand that they are no alone. 

 

3.  Take a day off. As a parent, take time for you.  Leave your children with you someone you trust and focus on you for a few hours or an entire weekend.  It will be hard at first. Diabetes will be in every other thought.  Push it further away until you can slowly feel the weight on your shoulders lift just a little.  Feel the tightness in your chest relax just a bit and breathe.  Give your child with diabetes a day off as well. Test for them, bolus or inject for them, and count their carbs.  Let them just be for a day.  They get burdened as well. Let them have that small break without nagging or worry. 

 

4. It is okay to punish your child for not doing diabetes related chores.  This one was huge for me.  As a parent, we carry some guilt when our children are diagnosed. We are to protect our children and somehow we failed and they ended up with diabetes.  No this isn't logical but being a parent isn't always about logic.  This is just how we feel. This feeling makes it very difficult to lump testing their blood glucose levels into the same realm as making their beds.  It isn't but it is in the same realm as having a bath and brushing their teeth!

 

Diabetes sucks. We all agree but this is the hand that we are dealt. Testing bg levels and somehow injecting insulin into their bodies is not negotiable...to a point.  As parents we may have to come down in our expectations of how often our child will test and we have to remember that occasionally they will be feeling so "normal" that they may forget to bolus.  It is important that we find a balance between our ideals and what is safe. We then have to remember that we can say "Since you did not test at least once when you were out with your friends last night then you will not be allowed to go out with them tonight."

 

5. It really isn't our disease.  If we are not the ones living with diabetes, it is not our disease. Even if you do live with diabetes and your child has diabetes, it is still their disease.  That is an incredibly hard concept to deal with! We want to take this burden from them. We want them to do it our way because we have been learning for years and we know best...but none of that will happen.  We will hope that most of what we have told them will sink in.  We pray that we will be that little voice in the back of their head when they are about to do something stupid.  We standby ready to pick them up and help them when they stumble along the way, but we somehow have to let them find their way.

 

For me, the last point is the hardest.  I do not want my children to have to learn the hard way.  I don't want them to stumble.  I want to protect them at all costs...but I can't. I have to let them fly.  I have to be confident in all that I taught them. I prepared them to be on their own.  They are smart. They are good children.  They are a reflection of us. 

The WAG King

“Did you bolus for that?”

 

“No its Christmas. I am not bolusing for Christmas. I decided that I need a vacation.”

 

“Funny…NOT. How much are you going to bolus for that? Do you even know how much you ate?”

 

“I am thinking that 60 sounds good. I like it. I think I will bolus 60.”

 

“Have you actually totaled what you ate to get to that number?”

 

“No. It just sounds good.”

 

At this point I mentally groan and begin to do the calculations….”You had potatoes, dressing, some carrot, a glass of milk, and then there was the pie.”

 

“Don’t count the pie. I just bolused the pie. The pie is covered.”

 

“Okay so your main meal.  That would be about 58g CHO.”

 

“See I told you 60!”

 

Darn, he still has it. He can still make a complete guess on a meal and manage to come within grams of what I would think the carb count for the meal would be.  The WAG King holds his throne for another day.

No this wasn’t his 60 CHO meal honestly :)