The many ways we feel guilty as a parent of a child with type 1 diabetes

I originally wrote this post in 2014. My son is now an adult but no matter what his age, the words below still ring true. After all of these years, my children continue to make me proud but I still occasionally feel guilty as a parent of a child with type 1 diabetes.

best mom pendant
Gifts like this make me realize that all is very well indeed.

As I started to read Ginger Vieira’s book Diabetes Burnout, I was hit by the many ways that I feel guilty as a parent of a child with type 1 diabetes.  Did I push my son too hard? Did I expect too much?

As I read further, I felt vindicated but I was also reminded of the overwhelming guilt that comes with being a parent of a child with diabetes.

Well-meaning people share with us many “reasons” that children develop diabetes and somewhere in the back of our mind’s ( well my mind anyway) we occasionally ask, was that it? Was that why my son developed this disease? Did I not breastfeed my son long enough? Did I feed him cow’s milk too soon? Was vaccinating him on schedule a bad thing? Was there a family history that we missed? I know that I didn’t feed him too much junk.  I know that it wasn’t two years of chocolate bars that did this to him but maybe that first time that he seemed off months before I should have realized that he was seriously ill and that it wasn’t just the flu?

Eventually, I realized that I couldn’t spend all of my energy feeling guilty about the “what ifs”.  Diabetes took up enough of my energy on its own…but that led me to a new source of guilt. 

Did I spend enough time with my child without diabetes?

feeling guilty as a parent of a child with type 1 diabetes

Had I denied my other son because diabetes took so much of my energy? My older son never complained but it was a question that popped into my head now and again.  We went to diabetes-related events and he met many new friends. He always seemed to have more fun than my child with diabetes.

I was there for my oldest son in his events and activities.  He knew that when there was an issue that required someone to stand beside him, I always did.  I was also there for the softball games, school events, report card days, sick days, and driving school.  I was pretty sure that I had successfully found a balance but a hint of guilt still tugged at my subconscious.

Did I focus too much on diabetes care when dealing with my child with diabetes?

diabetes supplies

As a parent of a child with diabetes, I also felt guilty as I wonder if I had achieved a balance with my youngest son? Did diabetes take over everything? Did he hate me because I punished him for diabetes-related offenses? Did he feel that I had robbed him of his childhood by focusing on blood checks and injecting when he wanted to play and forget it all?

My children seem to be well-adjusted. We have memories of family vacations and times spent with each other. We communicate regularly.  I guess I didn’t scar them too badly–I hope. I didn’t have to feel guilty about robbing my children of their childhoods.  Diabetes changed things but it didn’t destroy it.

I feel guilty that I can take a break from diabetes but he can’t.

feeling guilty when taking a break from diabetes care

One other area of guilt as a parent of a child with type 1 diabetes always seems to flutter on the sidelines.  I know I am not alone in with this one. I have heard other parents mention it. It is the guilt that comes when our children go away and take diabetes with them.  It’s that time when they go to the other parent’s house, spend the night with a friend or with grandparents.  It’s that time when they go to camp for a week or move away from home.

It is then that a new guilt moves in.  I no longer have to think about diabetes 24/7.  Oh I still wake at night. I still look at a meal and automatically count the carbs and dose insulin in my head.  Often, I still wonder what my child’s blood glucose level is.  I worry and wonder if he is taking proper care of himself while I have a break. 

It isn’t like I really have to be awake at night. When he isn’t home, I can enjoy that extra glass of wine without fear of dealing with a low later that evening.  I don’t have to remember to test after that walk.  I have it easy.  It’s not fair.  The guilt becomes stifling.

As a parent of a child with diabetes, I want to carry the burden of this disease for my son but I can’t.  I want to give him a break but I can’t even if I  get one! It doesn’t seem right. I must be a terrible parent…but maybe I am not.

When my son is with me, I help him with care when he wants.  When he has an issue and he is away from me, he calls and asks for help.  We talk about readings…when he is ready.  We talk about other things as well.  I work hard to make diabetes the last thing I ask him about not the first.

Your best is all you can do.

best mom pendant

Guilt doesn’t get me anywhere. It’s a backward-looking emotion. Life didn’t come with a guidebook.  My children were not born with a manual attached.  I do my best. We all do.  The guilt we feel as parents of children with type 1 diabetes must be released not harbored…and I do. 

I have made mistakes but my kids are okay.  They are strong.  My children are relatively healthy.  They are smart.  My boys do me proud. 

Don’t waste energy on feeling guilty as a parent of a child with diabetes. You cannot feel guilty about all of the things that weren’t perfect. Move forward and smile.  It’s the only way to go.

Having trouble moving forward? Remember to take life four hours at a time.

The Magic Wand Worked

My son told me that magically, after months of not testing and pretending that his diabetes does not exist whenever he was away from me, he would change.  He would test. He would wake up in the middle of the night to test and treat. He would bolus without reminder. He would become in charge of his own diabetes care!

I was cynical.  I knew that he “could” do it but time and time again he had shown that he wouldn’t do it. The other night was our time to review his readings and settings. I waited for his pump to be uploaded.

As I looked over the data, I was pleasantly surprised.  There were a decent number of readings–a lot of them high but there was data to work with!  I looked at the past few days, the ones that reflected back to school readings. There were numbers missing.  There was only one overnight test.  There was no testing the entire time he was at school.  I reminded myself that there was to be no judgement. I had vowed not to ever freak out no matter what I saw.  He was to learn. This was to be a constructive process.

My son and I began to talk.  I asked about the missed readings.  He said that he had used a different meter. He was going to start using his Ping only from now on.  It was more convenient to have one device do everything rather than testing and then taking out his pump (hold on, wasn’t that what the rep and I had told him when we did the new pump training?).  He gave me the readings and I knew that he had really checked.  He never gives out of range readings if he is lying. He also would never fess up to missed checks if he was trying to get out of something.

I told him that I only saw one overnight. What had happened to testing during the night? He was instantly on the defensive. He swore he had tested! He had the glass in his room to prove it! He had been in range but on the low side so he had decided to add some juice. He had tested!! I laughed and said okay.  I reminded him to input the readings into the pump next time so that I could see them before we make any changes.

He relaxed and we walked through how to manually add readings. We also reviewed how to use temporary basal rates on the new pump when exercising.  Suddenly he cried out “OH NO!! We forgot to change to weekday basal rates!”

I laughed again. I knew the change had not been made…well I didn’t really expect him to suddenly remember that this had to be done manually after 10 years of having a pump do it for you.  I told him that was fine. He could change it right then and there. We would not do any alteration on his current patterns but he had to remember to switch back on the weekend.  He asked to be reminded. Hopefully between the two of us we will get in the swing of this.

As the conversation ended, I felt more at ease. Perhaps he is growing up.  He will stumble. I am sure he will have times that he forgets but he is showing himself that he can do this.  He is showing me that my teaching did not fall on deaf ears.  Thank heavens for the magic wand that got him on the ball..well at least for this week. magic-wand

What? No Blood? No Tears? What happened?

Wow! Did that really happen? Was it really that painless? Did I miss something? Why am I not ready to cry in frustration? Are we making progress?

The other day, I sat down with our notebook. Its the one that says what sort of workout my son did, how intense it was and what we did about diabetes care as well as what sort of results were had. I asked for his meter and I plugged it into my iPod.  It had only been a few days since I had done this. I was still a little nervous about what I would find. 

Despite the fact that bg level reviews are supposed to be a time for discussion and learning, they normally are times when I cringe and want to cry while my son glazes over and comes up with strange excuses for missed readings. This time was very different!

I noted the readings.  We talked about foods before exercise. We talked about foods after exercise. He talked about how he felt exercising with various foods in his system.  We looked at missed readings and high readings. He was quick to point out his own errors and state that he needed to improve to get back to that guy he had been the week before.

I told him he had done really well. I was impressed.  He walked away with his own definition of what needed to be done and I did a small bit of tweaking based on my own feelings.  The biggest shock was the feelings and the atmosphere when the process was over…It was great! There was peace.

I felt good. I was happy to see readings and an interest. He felt pretty happy with things in general. He had seen decent numbers and had a strategy for readings that were a little off.  There was no blood spilt.  There were no tears.  Could we be making progress??

He goes away in a week and will be on his own for his diabetes care. This is normally a time when he applies the motto “When the cat’s away, the mouse will play!” or his his case when the mouse is away from the cat but you get the idea! I have been reading Moira McCarthy’s book as often as I can.(Blog review to come later!) I think I have a better grasp of will most likely happen while he is gone and why.  I think I may be better able to handle it when he comes back…well maybe…well I will try anyway! For now, I will just savor a really nice sharing of diabetes information with my son. drama

Blue Ribbon Day

It may not last so I figured I will celebrate quickly before I am back to posting rants about my son’s apathetic care!

As you may have read in previous posts, my son has been very focused on fitness lately.  This has made things a bit of a struggle diabetes wise but thanks to the good folks at Animas (and a reader) we have a new arsenal of tools to help us figure things out!

Each night before he exercises, we discuss setting a small reduced basal. He actually has tested before his exercise regime the past few days to give himself a clear idea of his potential performance level or if he needs a few more carbs to start his workout.  He then tests after the exercise before downing his small amount of post exercise carbs! Together we have been trying to determine how much to bolus for his after exercise/before bed snack (or meal for the rest of us!) and what sort of a basal pattern to run for the rest of the night dependent on the level of intensity of the workout and bg levels.

I am so excited that he is actually getting involved, paying attention and realizing that good diabetes  health means better exercise performance! This has only been happening for the past week but I feel so much better because we are finally seeing a team effort! There is a lot of relief when he is listening and learning.  We have even been able to have a few discussions on nutrition, fast burning carbs and the use of protein.

Again, being a teen, this may not last so I will bask in this glorious transformation for the few minutes that it lasts! While it lasts though, we will be sitting down tonight to write out what we have done, what sort of results it has given us for the past few days and what we have learned.  I have asked him to use a small notebook so we can get a better idea of what works and what doesn’t or where we may need to tweak. He was fine with that. YES!!! I may soon see my heart explode from the joy this is bringing me!

The total cherry on top of my blue ribbon day? He actually came to the table this morning holding a new site.  He had to have it changed before his final exam.  He didn’t want to be high when he had a science final to write! Yes, you could have knocked me over with a feather! Now, in fairness, my son HATES being high.  He swears it is the worst feeling in the world.  We have also been seeing some pretty tight control over the past week as we deal with exercise so a high this morning probably made him feel less than perfect for sure.  The difference is that he actually did something proactive about it! Yes, the site may have been ready to be changed (like 3 days ago) but please don’t burst my bubble. I will take the positive where I can.

It will soon be summer holidays. He will be away from me for weeks at a time and may chose not to test at all but maybe, just maybe he is learning, growing, and maturing when it comes to his diabetes care–well at least for today!

diabetes victory ribbon

The realities of carb counting with a teen with diabetes

bolusworthy baking

With Christmas only a few days away,  I decided to do some serious Christmas baking today. You know, making double batches of things. Making more than one recipe per day. Actually having food leftover at the end of the day that my two young men have not devoured. That kind of serious.

I didn’t go overboard. I made some sugar cookies (that I actually iced!) and whipped up a cake mix that became cupcakes. All in all it did make me look like a bit of a domestic goddess. Well, in my mind at least!

As I was icing my cupcakes, I began to estimate carb counts.  Most likely the cupcakes would run around 25 grams a piece.  The cookies would depend on which shape he chose. I had used Splenda for part of the sugar.  That would change things a bit too. 

Ideally he would weigh every baked item

Now a “good” diabetes mom would make sure that their son weighed each cookie.  She would have the carb factor out (which is listed on my recipe) and we would know exactly how many carbohydrates were in each cookie.  

This is the advice that I have given to many parents.  It’s much easier and more accurate carb count than WAG’ing (wild a$$ guessing) each piece of food. 

The realities of teen carb counting are that he will weigh a few if I nag him

However, I am actually “slacker” diabetes mom who lives with a teen boy who eats for more hours than I am awake. I know that unless I stand over all pieces of food and shove a scale in my son’s face, that WAG is going to cover way more carbs than any exact measurement.  

The cookie that is eaten as I am making supper will have a proper carb count because I will see him and yell out “WEIGH THAT!”  before he has a chance to stuff it completely in his mouth.  The cupcakes that he has after supper will also have a correct count because I will again have cleared my throat as he sat down, asking him where the scale is. After that? The realities of teen carb counting say that all bets are off. With a small bit of luck, he will use the accurate measures as his guide for guessing the next dozen cookies that he eats.  

If he is off, he will most likely be high.  This would freak out the “good” diabetes mom but she is busy banging her head against the wall of her bedroom. You see her son has already told her that being 16 mmol (288 mgdl) all day long is really no big deal and certainly not worth an injection or a new site.  

Bring on the eggnog to help me through!!

Merry Christmas and Good Blood Glucose Levels to all!

The stress caused my high blood sugar levels

Last night we were sitting around in the living room enjoying a movie and a few laughs.  My son pulled out his meter to check his blood sugar levels. He was relatively high and began to scroll through his meter. He soon realized that besides tagging if the reading was before or after a meal, you could also say that you were ill, exercising or stressed.

He looked at me and said “I’m 16.9 (305). I think it was the stress that did it.”

stress caused my high blood sugar

“Stress?? We are watching a movie and you are sitting on the couch.  What stress caused your blood sugar levels to rise? You have no stress.”

“No. I’m positive that I am high because of stress. Look right here. See below the reading? Its says “stress”.  The high must has occurred because of stress!” 

Stress continues to raise his blood sugar levels

Ugh! Yes, this is what I have to deal with but it does not end there. The next morning he woke up and again was running a little high.  He again told me that it was because of stress. I suggested it was because he didn’t change the site on his insulin pump the night before. Again, he swore that it was stress.

I suggested that he needed to go outside and shovel out the backdoor which was snowed in.  He said that he couldn’t.  Snow makes him low and being stressed already he really shouldn’t do anything that would add further stress to his body. I reminded him that exercise was a great form of stress relief and it would also help to lower his high bg level. 

Unable to win this battle, he changed the site and then shoveled out our backdoor.

Teens and gadgets…they can be a dangerous combination for parents’ stress levels! I will, however, give him an A for creativity!

Read more about dealing with teens with diabetes.