Tag Archives: teens with type 1 diabetes

Seeing Blue…still

In July of 2011, I sat down and posted my thoughts on the blue candles.  Those of us in the Diabetes Online Community know them all too well. They are candles lit when a person with diabetes loses their fight with this disease.  

Once again the candles are lit.  A Canadian girl.  A 17 year old young lady who would soon graduate.  A child the same age as my son.  I don’t know the details. I don’t need to know. I can’t begin to imagine the family’s pain. I can’t even think about it. I would be swallowed up by the grief and the sadness. 

Blue Candles–they are the candles that we light in cyberspace to remember someone with diabetes who has lost the fight. Each month, each week, we seem to see these images pop up across the online community.  As profile pictures are changed on Facebook stories emerge, fears grow and the desire for a cure is that much stronger.

Most recently the candles were lit for a bright, young fourteen year old girl. She was diagnosed when she was four years old.  She laid down for a nap and her father found her dead on her bed a few hours later.  The story sends chills down my spine.  She did not die at night. She passed away sometime during the afternoon.  We do not know many of the details.  We only know that she was far too young to die.

I don’t tell my son about these stories any more. He is almost the same age and has had diabetes for a few years more than she did. I don’t light candles on my Facebook profile.  I don’t write about half of the stories that I hear.  I can’t. I read about these children–whether they are fourteen or forty, they are still someone’s children.  My heart breaks for the parents and the families. I hug my boys a little closer. I pray a little harder. I hope for the very best.

I was reading a story one day of another child lost and of course had teared up a little. Someone told me that many children sadly die each day.  It could be a complication from cancer or an asthma attack but other diseases kill as well. It was suggested that I can’t focus on these deaths and be obsessed or paranoid. I reassured this person that I wasn’t. I read. I mourn. My heart aches for the families and I grieve for the life cut short before its time.

It is true that our children die crossing the street, riding in cars and playing in swimming pools.  As parents, we do our very best to protect them.  We teach them to look both ways before crossing the street. We put them in car seats and demand that they were seat belts.  We teach them water safety and we warn them about the dangers of drugs and alcohol.  All in all we do our very best to guide them and pray that they will be okay.

As parents of children with diabetes, we do all of that “normal” stuff and then we do a little more.  We work to help them to recognize highs and lows.  We test them as often as we can.  We keep tight control to prevent complications and fear going too far and having to wake to a child gone because of a low.  These fears are real. They do not keep me up all night but they do wake me up at 2am to test.  They do not stop me from letting my son be a child but it does make me check his pockets for glucose and his cell phone when he goes out.

As a parent, I cannot protect either of my children 24/7 for the rest of their lives. I wish I could. As much as I love watching them grow, think and spread their wings, part of me craves for the days past when I held them tight and could keep them safe in my arms.  They are growing. My oldest son is driving and almost out of school.  My youngest is well into his teen aged years and venturing off on his own more and more.  Diabetes or not, I can only pray I have done my best, continue to do as much as I can and leave the rest up to a higher power.

Last night was my son’s first night home after a few weeks away. I went to bed and woke a few hours later than I had planned to but he was low. The story behind one of the recently light blue candles played itself out in the back of my head. After 45 minutes and a lot of juice, his blood glucose levels were back in range and I could return to bed. I said a prayer of thanks that I woke up to test him. I prayed for families who were not so lucky.  I touched my son’s hair and wanted to hold him tight and kiss him gently on the forehead like I used to when he was small. He is now a teen. If I did anything beyond quietly touch his hair he would wake up creeped out and would claim nightmares for the rest of the night! Instead, I watched him sleep and I thanked God that he was alive, healthy and happy.

I will test my son at all hours. I will remind him to bolus.  I will deal with late night lows.  I will demand to know where he is going when he leaves the house. I will preach the evils of smoking, drug use and the dangers of too much alcohol.  That is my job and I need to know that when I close my eyes I have done that job to the best of my ability. This will never guarantee the 100% safety of either of my boys but its my very best and that is all a parent can ever do.

The DexCom has Come To Town

It’s in the house. He is willing to try. Momma is quietly dancing inside hoping for the very best.

What is it? It’s a DexCom, given to us to try by our fabulous Animas rep.  She dropped it off to me with instructions last week. It sits reverently on top of my son’s dresser waiting for him to come home to try it out. I am nervous and excited.

For years I have wanted my son to use a CGM.  I could see how it would make nights so much easier. I could see where it would help him during the day. The thought of seeing a 5mmol and actually knowing if this was a good reading or one that would drop dangerously low has been just too much for this momma bear to hope for.

My son on the other hand has never had any interest in a CGM. He doesn’t care what Mom says.  He has not been bothered by T1 people telling him how much he would love it. To him it has been an extra thing to wear and carry. It was a burden not worth his time.

What has changed? I am not sure. He is a bit older. He is looking at his future in the workforce. He has been dealing with his own care and his own doctor appointments for the past year.  Perhaps the combination has brought him to a point where he is at least willing to give something new a try. I don’t know but I am so happy…and so scared.

What if he does like it? What if he wants to move forward with purchasing one? How will I afford it? How will he? Will he end up working for a company that will cover a CGM and his pump supplies? If he doesn’t, will he make enough money to be able to cover this cost on his own? Will we be able to convince the provincial government of both the long and short-term value of sensor augmented insulin pumps?

dexcom
Its here!

There are so many questions and so few answers.  For now I will focus on one thing–in a bedroom, in our house is a device that will change how we see my son’s blood glucose readings for one week over Christmas.  That device will offer us a window into a world that we had never had more than a glimpse of in the past.  It is the key to better control and perhaps even a bit more freedom for my son. It’s not a cure but fourteen years ago, I could only hope for another tool in this fight to keep my son healthy.  Soon we get to see if it’s a fit for him.

The Weight of Guilt

As I started to read Ginger Vieira’s book Diabetes Burnout, I was hit by an incredible sense of guilt.  Did I push my son too hard? Did I expect too much? I was later vindicated but I was reminded  the overwhelming guilt that comes with being a parent of a child with diabetes…or maybe its just me.

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 ask was that it? Was that why my son developed this disease? Did I not breast feed my son long enough? Did I feed him cow’s milk too soon? Was vaccinating 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.  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 what about a balance with diabetes and my youngest son? Did it 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 testing 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.

One other area of guilt seems to always flutter on the sidelines.  I know I am not alone in with this one. I have heard other parents mention it. Its 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.  I wonder what my child’s blood glucose level is at any given time.  I worry and wonder if he is taking proper care of himself, but I have a break.  I  don’t really have to be awake at night. 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, 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.

Guilt doesn’t get me anywhere. It’s a backwards 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.  Guilt must be released not harbored…and I do.  I have made mistakes but my kids are okay.  They are strong.  They are relatively healthy.  They are smart.  They do me proud.  Why waste energy with guilt? Move forward and smile.  It’s the only way to go.

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

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

Taking a Low in Stride

DING!

I check my phone. Who is texting me at 6 in the morning? I really wanted to sleep in until at least 8 today.  It wasn’t my phone.  It must have been my iPad. Probably my oldest messaging me to tell me that he is up for work.  I had been teasing him about over sleeping.  I tried to go back to sleep.

“Your phone is ringing.  Answer your phone. Its your phone. Please answer it!”

Nothing good comes from a phone call at 6:30am.  I see my youngest’s phone number. I hear a deep voice.  He had  a site issue the day before. I am sure its my ex-husband calling to tell me that my son ended up in the hospital or they need help.  As my mind clears, and I hear “we need to make some changes. I was low at 6am.”  I realize that it is my son!

“What are you doing up this early?”

“Got to get my exercise! The early bird catches the worm! You can’t sleep your life away.”  says the child who can easily sleep until two in the afternoon!

Hold on! He said he was low. Now he is saying that he is taking a morning walk.  My brain is starting to clear and this does not sound like a good situation.  I ask him if he is still low. He says no but he is walking and taking breaks just in case.  He swears he is testing and he is okay…and then the connection is gone.  I call him back. It goes straight to voice mail. I call again. Same thing. I try to go back to sleep but my imagination fires up in high gear. What if he went low and fell in a ditch somewhere.  I text him to call me.  I try to go back to sleep. It’s not happening.  I call again.

Finally after about 10 minutes I get through. He had been camping with friends, got up this morning and was walking back to his father’s house. He was no longer low.  The low was earlier.  I asked if he had over bolused the correction from his site failure, been drinking, or made a bolus mistake in some food that he ate.  He said to no to all of the above.  I am not sure that he would have honestly answered question number two but I threw it in there amongst others so he could say yes, without saying a specific yes to the alcohol part. Either way, we decided to leave the low for another night because the corrections may have had an impact…amongst other things.

We chatted for a bit longer until he informed me that he was back at his dad’s and was hoping for a big cooked breakfast before his father headed off to work. We discussed bolusing strategies after his morning walk and then said good-bye.

I tried to go back to sleep but at that point I was sadly too awake to think about it. Instead and I lay there and realized that this was a foreshadow of times to come.  Times when he would be by himself and possibly calling to bounce a diabetes strategy off of me (or not).  Times when I would worry and wonder if he was safe after a low.  Did he fall and there is no one to help him? Those are things I will worry about but he also showed that he was okay.  He was taking it all in stride…literally. I will have to learn to do that too…one day…some time..later.morning-walk

 

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