Blue Candles...Once again

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.  

Last week I saw them appear twice.  A young boy around 11 years old and then another child just beginning their life as a young adult dead at age 18.  Heart breaking, painful and leaving us desperate for a cure, I also thought is was a good time to revisit that post.  The circumstances of my life have a changed a bit. My children and I are both older but the feelings remain the same...

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.

Join me on De-Nial

This has been a very emotional week and I have tried to insulate myself from a lot because...well I don't know if I can handle too much more.  Recently, my family lost a dear young friend. He spent a lot of time at my house while growing up, was a good friend to my children and had only just become a new father himself. He death was both sudden and shocking.  He was only 21 and I still cannot begin to imagine the pain of his parents.

This week I have been seeing many Facebook posts about 3 or 4 children with Type 1 diabetes who died in the within the past few days.  That is way too much death for me to handle.  I honestly have not read the stories. I have heard of officials questioning the diet of an undiagnosed toddler who died--as if his sugar intake could "cause" type 1 diabetes rather than the medical community not diagnosing him? The horror is unimaginable.

As I mentioned the other day, this was also diabetes clinic week.  I still don't have our most recent A1c back but we got a great pep talk about how its just a number and its only a concern if there is continued problems. I give that speech but it was nice to hear them saying the same thing to my son.  No matter what  reading comes back, I hope we do watch things more carefully, learn and move with forward with a stronger footing.

After the doctor's pep talk and my mention of the possibility of a rebound at night after what I assumed was an undetected low, our nurse came in.  She reviewed the documentation and said "Oh, he had a really bad low did he?"

I was kind of puzzled. What bad low? What happened? Where was I?

"He went low at night. How terrifying for you!"

Crap! That low! I had put "that low" out of my head.  It was my big failure. It was my biggest fear almost realized. Did she have to mess with my protective bubble? As I said, this has been a rough week and I was doing a great job at insulating myself against any more stress or guilt.

Mess with my bubble she did! Instantly I had a flood of guilt as I remembered hearing someone else innocently telling me that they had woke up to hear my son moaning in his sleep and knowing that I didn't wake up!  The panic stormed back in as I relived the fear of "what if his body hadn't kicked out glycogen?"  Was he really going that low? Could something horrible really have happened between the 3am check when he was perfect and the 7am check when he was high?

I quickly shrugged her comment off stating that I didn't know "for sure" that it had happened. I made adjustments the following night based on assumptions and the fact that he was insulin resistant for most of the next day.  Extreme testing, him waking and telling me he was dropping, and subsequent basal reductions would suggest that a problem may have occurred, but let's again say that this was all very theoretical.

She simply nodded as if to say "if it looks like a duck, quacks like a duck, and walks like a duck, its probably a duck."  Or in diabetes terms "If it looked like a rebound, you had subsequent lows at a similar time, and a reduced basal fixed it, he probably went low and you missed it!"  Thank heavens she just nodded and smiled.  That allowed me to slip back into my lounger on the River De-Nial.  Its a beautiful place.  With all of the ugliness of the week, I think I will happily float there a little while longer. The alternative is not a good place to be--terror, guilt, and more sleeplessness.

Butt Dragging Days are a Blessing

Its one of those drag your butt kind of days thanks to diabetes.  Last night was my usual routine of sleep, wake up, rollover, sleep, wake up and...holy crap! Its 4am already!

There was a fleeting thought in my head of "He has been high a lot lately.  Would it really matter if I waited those three more hours until we both get up?"

The thought was followed by my feet hitting the floor and me stumbling down the hall to test my sleeping son.  He was low.  The answer to my question--yes it would have mattered.  Best case scenario he would have "rebounded" and been high in the morning.  I would have attributed the high to not enough insulin and considered upping his basal rate rather than dropping it like it should be.

My son had mentioned yesterday that his readings were all over the place, in part due to his own errors, and that he felt really weird.  This helped to motivate me to move my carcass from my warm and cozy bed.

When I saw the low and stumbled towards the kitchen to grab him a glass of juice, I once again said "thank you".  I reminded myself again how lucky I am to be able to test my son.  I remembered parents who have lost their children to the dia-beast.  I am dragging my butt.  I desperately want to crawl into bed but I have too many other things to do.  Tired or not, my son and I are alive and ready to take on another day of life with diabetes and that is a blessing.

There but for the Grace of God....

This week I was going to write about Diabetes Art Day.  I actually I planned to participate until I took a look at the amazing creative efforts of people and felt that my stick men would just not cut it (even if I made them out of test strips!) . That was the plan but life seems to change plans. 

I was speaking to a friend the other day.  His daughter in-law and grand-daughter were returning from the funeral of a young man.  I had heard that a friend of this woman's son had passed away and I felt bad for those who loved him but that was my last thought...until this conversation. That is when I learned a bit more about how he died.  

This young man, someones baby, someones son, was just 20 years old.  He had Type 1 diabetes.  He was active and involved in sports. He went low while playing sports, passed out, seized and never regained consciousness. 

My heart stop.  I had to remind myself to breathe.  My friend said that he really hadn't wanted to tell me about a diabetes death of a young man but he felt that I would find out anyway.  I somehow managed to continue the conversation noting that I sadly am well aware of how deadly diabetes is.  We continued to talk and educated. He understood much more about my fears after years of spending time with myself and my son.  He knew that this could be my child and that my fears were justified. 

I don't know this young man's family.  I don't know about his life.  I know that he is only just older than my oldest son. I know that his family is now living my worst nightmare. I know that this isn't right. I know that young children are not to die because of diabetes.  It just should not be.  

Parents worry about their sons drinking and driving.  We worry about them trying drugs.  We worry about them getting into bar fights, having an accident at work, or driving too fast.  I know...I worry but I don't obsess.  

Last night, my internal alarm went off at 2 am.  I rolled over, looked at the clock and before I could groan about how unfair it was that I have been getting out of bed throughout the night for all of these years, I was up.  As I walked to my son's room, I said "Thank you."  I repeated those words as I searched for his meter, strips and lancing device.  I said thank you again, when I saw a high reading and reached for his pump to correct.  Thank you.  Thank you.  Thank you.

I realized that as I was standing there testing, another family was waking with no one to test.  They were wishing that they were me. They prayed to have their time back to hold their son, to watch him sleep, to be able to test him and see him wake for one more morning. 


I headed  back to my bed grateful for all that is. Thank you. Thank you. Thank you. 

Mom's Revenge

I heard my bedroom door bang open and lights suddenly filled my room. My youngest son was standing over me thrusting his pump into my sleeping face. 

"What does this mean?"

"Its telling you how many carbs you need to correct your low. Are you low?"

"No I'm high."

Now I was puzzled. What the heck did he mean that he was high when the pump was telling him to eat? The answer was relatively simple. It turns out that he was higher still earlier in the evening. He had corrected and now the pump felt that he was dropping way too fast and he needed a lot of carbs to cover the drop.

I told him not to worry about it. I would try to wake up and test him in a few hours. 

"A few hours!!!! Are you kidding? I could be dead by then!!!" my son's pitch quickly escalated to panic and I was mildly amused.

"You won't die.  You wake up to your lows now remember?" 

"I woke up to a few! It was a fluke!! You can't risk my life because I might wake up! You have to stay awake. You have to test me!!!" 

Yes, I was enjoying torturing him.  He never takes diabetes seriously. He rarely ever shows concern about any diabetes related emergencies (or much else actually).  This was an entire new spin on a disease that we have lived with for too long. Normally it was me freaking out at him! 

Finally, I felt bad for him (and actually began to wonder if the pump could be right and we were heading for a serious drop).  I told him to have a sandwich and not bolus for it.  I would test him later.

He stomped off to the kitchen and got some food. I then heard him head back into his room where he continued his tirade with his older brother as his new audience. I could hear him stating that he could die and his brother had better stay awake because his mother wasn't! And did he mention that he could DIE!

I am pleased to state that he did not die.  The sandwich he ate kept him up through any unforeseen peaks in his insulin.  I didn't get a lot of sleep and but we both made it through another sleepless night with diabetes!

Why I do it

Over the past few months I have heard a lot of anxiety and stress when it comes to testing your child with diabetes' blood glucose at night. Its a topic that can divide the diabetes community and raise blood pressure faster than the mention of Halle Berry or pumping versus multiple daily injections. It can create strife among friends and cause a serious strain on marital relationships. 

I am a night tester. I have been for the past twelve plus years. I will continue to do it for as long as my son lives under my roof. When he leaves my home, ideally he will have a CGM (that he will use) that will take the place of his current CGM aka Mom. 

My son sleeps soundly at night. He has looked the most peaceful when his bg levels have been out of whack.  That terrifies me.  In recent months, he has woken up to the occasional low--much to his dismay and his mother's delight. I do not yet trust that this will happen all of the time and as one adult pointed out in The Diabetes Dad's post on this topic, there is no telling how low he was or for how long before he woke up.  

Dead in bed is a very real fear.  Its something that too many people in our diabetes community have seen first hand.  I was recently told that there are only four cases of dead in bed in the WORLD each year.  The point was made to help quell over zealous fears but I think some fear is a good thing. It gives you respect--respect for a disease that is ruthless and deceptive.  

Diabetes does not show itself in anything but bad attitudes, fatigue and occasionally nausea or thirst.  You see it when a glucometer is pulled out, when a syringe is injected or pump peaks out from a belt around someones waist.  It does not however tell you before you go to bed, "Please know that while you are sleeping peacefully well, and despite that basal adjustment you made for the yesterday's activity last night, tonight your child's insulin needs will still be low.  Since you didn't realize that and did not give him an extra snack or reduced basal rate, I will make sure that his blood glucose drops really low tonight.  You won't notice. He will be peaceful and you will sleep pretty sound after all of these nights of broken rest.  Don't worry, I will take care of things. I will deplete his liver of glycogen and this time? Well this time I will cause a seizure in his body, shaking his bed and waking the house.  You will get to him in time, take him to the hospital but none of you will take me for granted again....until the next time." 

That is not the only reason that I test at night. I test out of respect and a desire for knowledge.  Knowledge is power and if I do not test my son during the night, I have no idea about the highs and lows he may have experienced. He may go to bed and wake up in range but during those 10+ hours, he may also have been low, high and a few readings in between. I am only human. I will not catch them all but I will catch a few. I will get an idea and it will allow me to keep him healthy. 

Night testing is a family choice. In my family, I choose to do it. I am not obsessed by it. I naturally wake multiple times during the night (and did this before diabetes moved in).  When I wake, I am okay with stumbling into my son's room and testing him. Its selfish--I feel better doing it. Again, the choice is yours.  Do what works for your family but make sure your choice is an informed one. 

Another Tragedy

Yesterday the Internet was abuzz with the story of a death of a seven year old boy.  It was said that his parents missed testing him that night and when they checked on him the next morning, he had succumbed to "dead in bed".  I am positive that the story is not that simple.  The outcome however is no less heart breaking.  Another life claimed far too soon by a disease that we all hate.

There are many statistics out there. Some say that there will only be 50 deaths each year worldwide because of dead in bed and they will most often occur because of excessive exercise or alcohol consumption.  Others say that one in 20 people living with diabetes will die because of dead in bed.  No matter what the numbers are we need a cure. No matter what, we cannot ease the pain of the families.  My heart goes out to them. I cannot begin to fathom their pain.  

In October of 2010 I asked the question, "Is Diabetes more deadly than ever or do we just hear more about it now?"  Once again, here is that post....


Yesterday I heard of another child who died because of Type 1 diabetes.  She was thirteen years old--the age of my own son.  She had Type 1 diabetes--like my son.  She had parents who loved her and who were diligent in her diabetes care but she died anyway.  That is every parent's greatest fear.  She had hopes and dreams.  She wanted to die an old woman with a book on her chest...sadly she died before she became old or had any experience as a woman. It is truly heartbreaking.

This is not the first death from diabetes that we have heard of in just this past year.  This is not the first time that I have heard of someone so young being taken by this disease. This death led me down a path of contemplation.  Why were so many people dying? Was this something new? Did we lose children to this disease before? Had we traded rapid insulin and better technology for a higher chance of death?

Those of us who live with the unwanted house guest called "Diabetes", know that with tight control which promises prolonged health is the risk of severe hypoglycemia and death. Its a risk most of us take with some caution.  We try to keep the A1c down.  We work to maintain "normal" blood glucose readings at the risk of becoming hypoglycemic unaware.  Its a scary balance.  Night is our enemy as we fear, as these parents did, of waking up to our children "Dead in Bed".

I put the question out to many parents yesterday--was diabetes more deadly now because of the advances we have or do we hear about death more because of social networking and our reliance on the Internet?

The answers were mixed.  Many had a new fear of this age of puberty (the last number of deaths were young teens).  Were teens more susceptible because of insulin needs that changed on a daily basis with incredible swings?  Did adolescence and its rebellion breed a greater risk of deadly behaviors in children with diabetes?

Others felt that technology was a good thing.  We were not seeing as many complications as we once did but they noted that try as we might, we are just not pancreases.  We could not do enough to mimic Mother Nature.  We were not God and could not anticipate all of the body's needs.  Despite our best efforts, some form of complications or worse were likely to happen at one point. That was terrifying.

We have children and we realize a need to protect them.  Many are devastated by the diabetes diagnosis because they feel that they have failed to protect their child/children.  After diagnosis, the need to protect becomes even stronger because we failed the first time around.  Now it becomes our job to keep their bodies healthy and strong. We fight to make sure that they have a normal life--as normal as it is to live with syringes, pumps, glucometers, and glucose tablets with you 24/7.  To read of a death just shows us that our best just may not be enough.

Yes, I realize that my choice of pronouns has changed from someone else to me. I have always felt it was my job to protect my children and yet my son almost died because of diabetes and misdiagnosis.  It is now my job to turn him over a healthy body when he leaves my care.  Its a difficult job especially since he is at an age when he is looking for his own independence.  I, like many before me, face the challenge of trying to teach him to care for himself and to be there to pick him up and dust him off when he makes mistakes. Death however makes us want to hold them close forever and never sleep again. We want to be in their lives 24/7 and keep them safe.

So to get back to my original question--has diabetes become more deadly? Probably not but it is still no less scary and no less deadly.  Diabetes DOES kill despite those who think otherwise.  The fear is real and, while possibly magnified by the Internet, the danger is still present. The answer? We need a cure.  Its sadly that simple. Until there is a cure, we will continue to hover and pray.  We will lean on each other in a way not available to generations before.  We will learn from each other and move forward but we will never forget those that we have lost....

Is Diabetes More Deadly than Ever? The question remains

Is Diabetes More Deadly than Ever was one of my most read posts.  It was originally written in October of 2010 but the questions are still there. Our children are still dying but is social media making us more aware or is tight control trading a reduction in complications tomorrow for a higher risk of death today? 


Yesterday I heard of another child who died because of Type 1 diabetes.  She was thirteen years old--the age of my own son.  She had Type 1 diabetes--like my son.  She had parents who loved her and who were diligent in her diabetes care but she died anyway.  That is every parent's greatest fear.  She had hopes and dreams.  She wanted to die an old woman with a book on her chest...sadly she died before she became old or had any experience as a woman. It is truly heartbreaking.

This is not the first death from diabetes that we have heard of in just this past year.  This is not the first time that I have heard of someone so young being taken by this disease. This death led me down a path of contemplation.  Why were so many people dying? Was this something new? Did we lose children to this disease before? Had we traded rapid insulin and better technology for a higher chance of death?

Those of us who live with the unwanted houseguest called "Diabetes", know that with tight control which promises prolonged health is the risk of severe hypoglycemia and death. Its a risk most of us take with some caution.  We try to keep the A1c down.  We work to maintain "normal" blood glucose readings at the risk of becoming hypoglycemic unaware.  Its a scary balance.  Night is our enemy as we fear, as these parents did, of waking up to our children "Dead in Bed".

I put the question out to many parents yesterday--was diabetes more deadly now because of the advances we have or do we hear about death more because of social networking and our reliance on the internet?

The answers were mixed.  Many had a new fear of this age of puberty (the last number of deaths were young teens).  Were teens more suseptible because of insulin needs that changed on a daily basis with incredible swings?  Did adolescence and its rebellion breed a greater risk of deadly behaviors in children with diabetes?

Others felt that technology was a good thing.  We were not seeing as many complications as we once did but they noted that try as we might, we are just not pancreases.  We could not do enough to mimick Mother Nature.  We were not God and could not anticipate all of the body's needs.  Despite our best efforts, some form of complications or worse were likely to happen at one point. That was terrifying.

We have children and we realize a need to protect them.  Many are devistated by the diabetes diagnosis because they feel that they have failed to protect their child/children.  After diagnosis, the need to protect becomes even stronger because we failed the first time around.  Now it becomes our job to keep their bodies healthy and strong. We fight to make sure that they have a normal life--as normal as it is to live with syringes, pumps, glucometers, and glucose tablets with you 24/7.  To read of a death just shows us that our best just may not be enough.

Yes, I realize that my choice of pronouns has changed from someone else to me. I have always felt it was my job to protect my children and yet my son almost died because of diabetes and misdiagnosis.  It is now my job to turn him over a healthy body when he leaves my care.  Its a difficult job especially since he is at an age when he is looking for his own independence.  I, like many before me, face the challenge of trying to teach him to care for himself and to be there to pick him up and dust him off when he makes mistakes. Death however makes us want to hold them close forever and never sleep again. We want to be in their lives 24/7 and keep them safe.

So to get back to my original question--has diabetes become more deadly? Probably not but it is still no less scary and no less deadly.  Diabetes DOES kill despite those who think otherwise.  The fear is real and, while possibly magnified by the internet, the danger is still present. The answer? We need a cure.  Its sadly that simple. Until there is a cure, we will continue to hover and pray.  We will lean on each other in a way not available to generations before.  We will learn from each other and move forward but we will never forget those that we have lost....

For Eilish, for Paul, and for too many others.

Twice in one year!

Last night I pulled out the log book we are keeping for our next d-clinic appointment (and I will probably try keeping it up for a while after).  I grabbed my son's meter and began to write down the results.  

After our chat the day before about missed tests, everything was in a row.  Tests were done. Life was looking good. Readings were everywhere of course. There were highs that I thought I had taken care of and there was a low...where in the world did that come from!!! There was a low at 1am. I never dealt with that low. My son and I had watched a movie together that night and gone to bed at the same time! The lights were out in his room at midnight but there is a 2.6(47) at one in the morning!!!

I yelled out to my son. "Get out here!!!" I was trying to breathe and focus.  He was low at one in the morning.  He didn't retest but he was okay. He was alive when I checked him at 3am.  He had woken up to a low??? He has only once in over twelve years of diabetes ever woke to a low. He woke to a low? 

My son came out of his room wondering what he had done wrong.  "I tested Mom.  You can see. I did all of my tests."

"Yes and you did one at 1am and you were low."

"I know and I was scared I would fall asleep before I could retest so I made sure that I had a really big glass of juice and followed it up with bread and jam.  I figured that that should keep me safe either way."

I wanted to cry.  I was so very happy that he had woken up on his own. How did I miss this? I never even woke to hear him get up! He had done it all on his own.  He was okay! 

"You did perfectly.  I am so impressed that you woke up!"

"Me too." he said in a sheepish voice. 

"Next time, wake me up.  I would have covered you in case you fell asleep. Don't ever deal with a low by yourself if it can be helped.  Its better to have someone watch your back just in case you do fall asleep. Lows can make you tired at the best of times. Just come in and get me.  I will gladly give you a hand but you did a great job.  I am really impressed and so glad that you woke up!" 

I could see the relief in his face and again it made me want to cry.  He was growing. He was learning.  He had a few more years to get this on his own but he was working towards it and its is such a heavy burden.  I cannot begin to imagine what it is like to know, to grow up and know that if you don't wake up at night when your body is low and if you don't treat it properly...well you might not wake up.  No child, no adult for that matter should have to live with that knowledge in the back of their head. 

I am so glad he woke but boy do I hate diabetes!  

Are you alive?

I woke up at 1:30am in a panic. I had had one of those dreams that you are being chased and was still a little freaked as I tried to get my bearings. One of my rules is that if I wake up for no reason I need to test my son.  He had probably only gone to bed just before I woke. Did I really need to test him? Well, a rule is a rule and it has served me well all of these years....

Off to his room I went. As I fumbled around with the meter he woke and stared at me.  "What are you doing?"

"Testing you."

"I just did that."

"How long ago?"

"Around 12:30 or so"

"Well I am doing it again. Its your fault for waking me up. I had a nightmare. We were being chased so now I am awake to test you."

I could see him silently thinking that I was nuts but whatever worked for me. He rolled over and the meter said that he was fine.

Two hours later I woke again. I got up and headed to his room.  He had been in that absolutely perfect range that makes me nervous so I wanted to see where he was then.

I fumbled with meters and made a mess of things. My son again woke up.

"What are you doing? You just tested me five minutes ago!"

"Actually it was two hours ago and I was just checking to make sure that you were alive."

"Oh. Was I low?"

After the words left my mouth and I heard his response, I wanted to cry. It was an innocent phrase that I would say to anyone.  I  simply meant that I wanted to check to see that he was okay.  In his reality, the statement was to be taken literally.  He was matter of fact in asking about his readings. I was so sad to think that this is our lives...fear of lows and the reality of death every time his eyes are closed.

Once again wishing for a cure to take away fears that should not be.

He isn't turning off the alarm clock!?!

The other morning I got up like every other morning. I turned off my alarm before it rang. I stumbled to the bathroom in an attempt to wake myself up. I waited to hear my son's alarm go off before I had to go in and kick him out of bed.
While I was washing my face, I heard the telltale "Beep, Beep, Beep!" of an alarm clock. I waited to hear my son turn it off.
And I waited.
And I waited.
What was going on? Why didn't he turn it off? Some mornings it will take a bit before he will bother to reach up and shut it off but as it gets more insistent, he always turns it off. Why hasn't he turned it off?
The beeping continued.
Panic began to creep in. He was high last night. I know he was. I tested and retested before I corrected.  He was low on insulin. There is no way he could have gone that low...could he? He was fine. Why wasn't he turning the alarm off?
I rushed to dry my face and put in my contacts. Of course because I was beginning to panic, my contacts jumped everywhere but into my eyes. I finally got everything together. I had to see what was wrong.

As I stepped out of the washroom I realized that the beeping was coming from my own room! While I thought I had turned off my alarm, I hadn't and since Larry was already up and in the kitchen, there was no one in the room to turn it off!
With a huge sigh of relief, I went to check on my son. As expected he was just waking up and looking at me wondering what my problem was. Oh my! What I do to myself!

Adolescence and change

It is that time of year again, a time when I seriously start to think about a CGM for my son. I have been researching them for years. Cost has always been a huge deterrent but I have said that when he became more independent and before university it would be a must.

Today I spoke a bit with his diabetes team about the various systems. We were in agreement as to which system would work best...the one that I can't get right now of course.

As adamant as I am about getting a system, my son is equally as adamant about not having one. He detests the idea of another site. He cannot stand the idea of carrying around the receiver. He would prefer to carry his meter and test when he feels he needs it.

I tried to tell him that he could safely miss more tests with a sensor.  I would still have data and trends that could be used.  I would be able to rest at nights with the knowledge that he is stable or his readings are headed up from a lower range.  He would not necessarily have to test in front of his friends. He still wants no part of it.

I have been racking my brain trying to figure out how to convince him that it can work. Using it may be the best solution but it is not something that anyone has laying around for me to try him with. He is of an age when he can have a say and it kills me. I appreciate the independence but the stubborn "I will not try anything new. I am still alive with the old way."  attitude kills me.

What hurts me even more is when I read stories like I saw today.  The tale of young Matthew Calderon.  He was diagnosed at age 2 just like my son.  He played basketball and after a night of play, had a seizure and died.  In other words, he went low and never recovered. 

I try not to read these stories. I cannot think that this could be my child but I also know that technology can help to save lives. It is not perfect. It can fail but it can also help.  It can only help if it is used. It can only be used if you can afford it. If you can afford it, it can still only be effective if you wear it. 

I desperately want my son to wear it. I want him to appreciate the benefit. I want to change his stubborn attitude. It scares me for the future. I pray that this is disgruntled adolescence after a week that did not go his way.  I pray that he will be open to keeping himself as healthy as he possibly can.  

Kevin Kline tells it like it is

I am not American. I do not follow the celebrity gossip. I do watch movies. I know who Kevin Kline is and I like his work (who can forget "The Big Chill" or "A Fish Called Wanda").  I may have heard that he was somehow involved with diabetes but then again so is Cliff from Cheers (aka John Ratzenberger) and many other wonderful "celebrities".  Today I watched a clip that made me realize that he is more than just a great actor, he is a father.  He is not just any father.  He is a father of a child with Type 1 diabetes who wants the world to know that we need better for our kids.

Today he told the world that "Once you have a child with diabetes you immediately stop being merely a parent.  You become a doctor, nurse, nutritionist, expert." Mr. Kline when on to point out that diabetes never stops and worries never sleep...and neither do the parents.
For a change, the interviewers seemed to get it. Diabetes was taken seriously during this interview.  The only part that saddened me was the focus on technology rather than a true cure.  I appreciate technology.  I have seen incredible leaps in the eleven years my son has been dealing with this disease and I am forever grateful. I am a bit more content knowing that he will most likely have CGM technology to take forward in his life but he will still have to wear it.  He will continue to be a walking robot with a number of machines needed to keep him alive. He will be alive but there will also be a cost...a huge financial one. 
At the moment, we have difficulty having insulin pumps covered under our health care system depending on your age and where you live. How will my son afford his pump AND a CGM as well as all of the other "stuff" associated with this technology? That truly scares me. It is something that he will have to consider when both chosing a career and deciding where he will live.
I do not want to take away from the message of Mr. Kline however.  He showed true emotion as a father of a child with diabetes.  You could see the worry and sleepless nights in his face.  He described diabetes as being similar to having a newborn all over again.  With a newborn we carefully listen for breathing and fear SIDs.  With diabetes, we also watch breathing but fear ketones, Dead in Bed, and medical malfunction to name a few.
Just after watching this interview, I scanned through my Facebook news and noticed blue candles. Another child had died.  He was a teen aged boy, just out of high school.  This morning I received a memorial from a family of a 24 year old young man who had died because his diabetes became too much of a burden for him to carry. 

Its all very overwhelming. I pray that the American politicians listen to what these JDRF delegates have to say.  I pray that the world listens as well. Together we can work towards a cure not just a larger bandaid. Together our children will live long and healthy lives.

Pullin' up the big girl pants...

Diabetes sucks. There I said it and it about summarizes all emotions that have occurred in the last four days.

Friday I heard about the five, count them that is F-I-V-E young ones who died because of Type 1 Diabetes.  There was a young woman who went into DKA while her parents were on vacation.  The callous reaction was to say, well she should have caught that she was high and treated. What was wrong with her? Reality--some people go into DKA very easily and the situation can quickly escalate out of control especially with no one to help you.

There was the nine year old little one who became so depressed that she took her own life.  She was nine! She was so devastated by this disease that she ended her life? Heartbreaking for those of us reading about it but the pain for the parents must be unimaginable.

As well, there was an eighteen month old baby whose diabetes was not diagnosed until it was too late. This child's life was cut down before it started.  This story hit very close to home as my own son was only one year older than this child and was within twelve hours of death himself when diagnosed.

There were two other families who lost their loved ones in the past week to this evil disease. I didn't know what to do with all of the information. I didn't cry.  I got a little angry at those people who think that I am too obsessed with diabetes and those who think that I worry over nothing when this could have been my child.  Highs and lows happen but few people really get how serious they both are.

The anger eventually faded because our own reality came pouring in.  My son was high...I mean HI and he was quietly dealing with it himself. I asked why he was drinking so much and he said it was because he was in the 30s (over 540mgdl).  I was ready to have a heart attack. All afternoon? I grabbed the meter and couldn't see past the latest reading "HI".  HOLY CRAP! Can't register????? What the......?? I quickly told him to drink water, change his site and his cartridge.  We checked for ketones. Yep, they were there.  I hate highs.  Six hours later and he was finally down to 8 (145) and I could breathe again.

Yesterday my son happened to be looking over my shoulder as I checked out my Facebook page.  "Mom why are there all of those blue candles?  You have one, Jen has one.  What's with all of the candles?"

I paused, I thought, what do I say? I have been blunt with him over the years about the seriousness of diabetes but did he need to know this? He is coming out of himself, enjoying life and taking care of himself.  I had been reminded of all of the amazing people that I knew who lived with diabetes for 20, 30, 40 and FIFTY years.  I didn't want to bring him down but I couldn't lie to him....
"They are memorial candles."
"Memorial candles?"
"Yep."
"What do you mean?"

"They are to remember people that have lost their lives to diabetes."

"Oh."

That was enough for him.  He didn't know if they had died last week or six years ago.  He was okay with things left there. I breathed a sigh of relief. I hadn't cried. I had pulled up my big girl pants and focused on the living and the wonderful possibilities.  I was okay. My son was okay.

Then I read, "He Held Me".  Tears were very close. The author explained her feelings as she went low last night and had to rely on her spouse to bring her around.  My heart broke.  I hated diabetes even more.  Why did she have to go through this? Why do we have to deal with such a gamut of emotions. Can things just stop for a few minutes please? Can we experience some "normal" for even a day?  But then I remembered..."normal" is only a setting on the dryer so I guess its time once again to pull up the big girl pants and count the incredible blessings in my life rather the dwell on the sadness that can consume you. 

My son is alive. He has many wonderful role models in the diabetes community.  I have amazing friends and family who do get "it".  Accidents happen.  We are saddened but we must move on... Time to give them an extra haul.  

Is Diabetes More Deadly than ever?

Yesterday I heard of another child who died because of Type 1 diabetes.  She was thirteen years old--the age of my own son.  She had Type 1 diabetes--like my son.  She had parents who loved her and who were diligent in her diabetes care but she died anyway.  That is every parent's greatest fear.  She had hopes and dreams.  She wanted to die an old woman with a book on her chest...sadly she died before she became old or had any experience as a woman. It is truly heartbreaking.

This is not the first death from diabetes that we have heard of in just this past year.  This is not the first time that I have heard of someone so young being taken by this disease. This death led me down a path of contemplation.  Why were so many people dying? Was this something new? Did we lose children to this disease before? Had we traded rapid insulin and better technology for a higher chance of death?

Those of us who live with the unwanted houseguest called "Diabetes", know that with tight control which promises prolonged health is the risk of severe hypoglycemia and death. Its a risk most of us take with some caution.  We try to keep the A1c down.  We work to maintain "normal" blood glucose readings at the risk of becoming hypoglycemic unaware.  Its a scary balance.  Night is our enemy as we fear, as these parents did, of waking up to our children "Dead in Bed".

I put the question out to many parents yesterday--was diabetes more deadly now because of the advances we have or do we hear about death more because of social networking and our reliance on the internet?

The answers were mixed.  Many had a new fear of this age of puberty (the last number of deaths were young teens).  Were teens more suseptible because of insulin needs that changed on a daily basis with incredible swings?  Did adolescence and its rebellion breed a greater risk of deadly behaviors in children with diabetes?

Others felt that technology was a good thing.  We were not seeing as many complications as we once did but they noted that try as we might, we are just not pancreases.  We could not do enough to mimick Mother Nature.  We were not God and could not anticipate all of the body's needs.  Despite our best efforts, some form of complications or worse were likely to happen at one point. That was terrifying.

We have children and we realize a need to protect them.  Many are devistated by the diabetes diagnosis because they feel that they have failed to protect their child/children.  After diagnosis, the need to protect becomes even stronger because we failed the first time around.  Now it becomes our job to keep their bodies healthy and strong. We fight to make sure that they have a normal life--as normal as it is to live with syringes, pumps, glucometers, and glucose tablets with you 24/7.  To read of a death just shows us that our best just may not be enough.

Yes, I realize that my choice of pronouns has changed from someone else to me. I have always felt it was my job to protect my children and yet my son almost died because of diabetes and misdiagnosis.  It is now my job to turn him over a healthy body when he leaves my care.  Its a difficult job especially since he is at an age when he is looking for his own independence.  I, like many before me, face the challenge of trying to teach him to care for himself and to be there to pick him up and dust him off when he makes mistakes. Death however makes us want to hold them close forever and never sleep again. We want to be in their lives 24/7 and keep them safe.

So to get back to my original question--has diabetes become more deadly? Probably not but it is still no less scary and no less deadly.  Diabetes DOES kill despite those who think otherwise.  The fear is real and, while possibly magnified by the internet, the danger is still present. The answer? We need a cure.  Its sadly that simple. Until there is a cure, we will continue to hover and pray.  We will lean on each other in a way not available to generations before.  We will learn from each other and move forward but we will never forget those that we have lost....

For Eilish, for Paul, and for too many others.

In the month of November, http://www.diabetesadvocacy.com/ is planning on creating a memorial to those we have lost.  We will place names and/or photos of those who fought diabetes but are no longer with us. If you know someone who has lost their battle with diabetes, please email their name and/or a picture to us at advocacy@diabetesadvocacy.com and let people know how deadly diabetes really is.

Thank you.

Selfish

Its been ages since we have had any sort of a low.  We have been fighting highs and puberty for months.  A good day sees numbers that are at least in range but a low? What are those? Funny though, when a low does arrive it always happens at night.

Last night I was sleeping in bed and had no desire to get up. I began to think that one night without testing would not be a bad thing. Maybe this one night I could sleep through and I would get my son to wake up one night to test to give me a break next week.  It sounded like a great plan.  He had been in range or high most nights. I could take a night off. It would be good for me. I know I was awake but still not having to physically get out of bed? Yeah, that was the ticket. That was what I should do.  I was tired. I owed it to me. I should stay in bed and go back to sleep.

After such a long debate, you know that I got out of bed.  I was awake. I felt guilty. I felt selfish for wanting to sleep when my child should be tested.  I got out of bed. I crossed the hall and tested. I then wanted to cry.  He was low.  Granted he was not rock bottom, freak me out, this will take days to come up low.  He was just a lot lower than I like to see him at night low and needs 20g of carbohydrate low. I fed him his glucose gel because he was semi awake and wanted to try it. 

I left his room telling him to sleep and I would be back to test him.  I grabbed my book and curled up on the couch hoping not to wake anyone else in the house while I waited.  As I walked away I so wanted to cry.  I get that feeling often when treating a low at night. Its the desire to cry with relief because of all of the "what ifs" that run through your head.  Its the desire to cry for that selfish reason--you are dead tired and just want to be able to sleep without being on guard all of the time.  Its the selfish frustration that says, "I have been doing this for over ten years now and I want a break but I can't and he will never have that break until a cure is found. "  Its that selfish craving to live a life like others who can sleep and just get up in the morning after complaining that the cat next door kept them up all night rather than their own worrying and nerves about the safety and health of their child kept them up.  I know I am not alone. I know that diabetes is not the only disease that leaves parents worrying. All of that adds to making you feel worse.

I crawl back into bed after adding that extra five grams of carbs "just in case" and I want to cry because I have been so selfish. Others have it worse.  It could have been worse for me.  I only have one child to deal with.  I am able to work from home and can sit at my computer screen in my pyjamas for hours before I get my body working if I want. I  just end up feeling selfish...and tired.  So is life when diabetes lives in your house.  Could it please move to its own house with no one in it but itself? I guess not. Time to suck it up and be grateful to see another day with my son.

Now I know why I worry

As usual, I was going through articles this morning looking for new research results and other  new and exciting things in the wonderful world of diabetes.  For some reason lately, there have been quite a few articles on Dead in Bed Syndrom.  I think its because I am trying to get my son to begin to wake up to alarms, lows, and work a little more on his own care. Okay, maybe its not personal and its just coincidence but it did make me wonder.

Today's article did more than just make me wonder, it made my heart stop.  I remember way back when my son was first diagnosed. I read everything that the hospital gave me and then read it again. In the literature there was a brief pamphlet on Dead in Bed.  They suggested that a person with diabetes could go low in their sleep and never wake up.  My first thought was...I will never, ever sleep through the night again and I have lived by that for over ten years.

I automatically wake up now.  There are no 3 am alarms set for me.  I wake to use the washroom. I wake to strange sounds. I wake to odd dreams.  All of these things are reasons for me to stop in my child's room and verify that his blood glucose reading is okay.  On more than one occasion it hasn't been and I have thanked the moon, the stars, and anyone who got me up that night to catch the problem before it got a lot worse.

When I read the article this morning I realized that people who think I am crazy for getting up so often have no idea and that I am right.  Many who question my actions do so out of concern.  The physical toll it has taken on my body is evident by the medications that greet me at breakfast each day.  Its because of this and the fact that my chid is not with me 24/7 anymore that I have really worked this summer to get him to wake up to an alarm and test himself. I still wake up and check his meter or test him again but he is managing to wake up at least 50% of the time and test.  This is huge for a child who can sleep through a fire alarm!

So what was the big scare factor in the article? What validated me and sent me back to testing like a maniac? A MedLinx article that stated "The incidence of “dead in bed” syndrome is not known but studies suggest figures of between 4.7 and 27.3% of all unexplained deaths in type 1 DM."  Five to TWENTY EIGHT percent????  That is beyond unacceptable.  That is downright terrifying!

Its funny, we have worked so hard to get out kids pumps (and in some places the fight still continues) and now it looks like we will need to bring this information forward to help us ensure that we can at least have the help found in CGM technology.  None of it is a cure but we want our loved ones to live long enough to see a cure. 

How 'bout 11?

"Mom, you didn't test me last night"
"Yes I did, but if you are worried about it and you are awake maybe you should be testing yourself during the night. It would be great to give me a break after 10 years."
"A break? That's okay."
"But you should get used to testing yourself. If you are awake anyway why not give your old Mom a break?"
"How 'bout we go for you testing me every night for eleven years instead?"

That was the conversation I had with my son the other morning. I had to laugh to myself when he suggested that I didn't test him. He never wakes up when I do test him unless he is high and needs to use the washroom or hasn't gone to sleep yet when he was supposed to. This child sleeps through everything! I drizzled snow on his bare back that very morning to wake him up (after calling him and blaring music) and he continued to sleep. He used to sleep while eating a sandwich after a low. He can sleep while drinking a juice or chewing glucose tablets. Its all a little unnerving but I watch, make sure everything is chewed and swallowed and that he doesn't choke.

The fact that he is such a sound sleeper does scare me a bit. He sleeps through the alarms on his pump so a CGMS won't get him out of bed to treat. The only upside is that when he sleeps at a friend's house, he does wake up to the alarm...well maybe the friend wakes up to the alarm and gets him moving. Either way, he does test when he isn't at my house. He does wake up to the alarm when he is with his father...and then rolls over and sleeps while waiting for Dad to get up and test him.

The upside is that he is still young. He has a few more years before Mom starts to really get on his case about waking up himself. For now he is spoiled...Mom gets him up, Mom cooks for him, Mom tests him, and Mom gets his glucose for his lows. If he is really lucky he will marry a girl who will do even half of this but he may be pushing that one!

After 10 years, I am getting tired of waking up at nights and testing. I have been waking up through the night for 16 years...yes long before diabetes, so I am sure that I will continue to wake up at all hours. If I am waking up I might as well make sure that he is safe and I have tested him especially since the rest of the conversation went something like this...

"I have to be tested at night. I might go low and die if no one tests me."

Ouch! I did clarify that he would probably just go low and worst case scenario have a seizure. Sadly he knows the reality. While some will argue that your body will kick in, you will rebound, and all will be fine except for a nasty high the next morning. This may be the case for many but my son and I have also seen a different outcome. He knows that I have had friends go low at night and never wake up again. Its not a reality that I enjoy my young child being aware of. He takes it in stride but he knows just the same. More fun with diabetes....