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!

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.

One in Twenty

Recently the JDRF in the US took out an ad in the New York Times and elsewhere that has generated a lot of talk amongst people living with type 1 diabetes.  It simply stated that 1 in 20 people with type 1 diabetes will die because of hypoglycemia. It was geared to speed up FDA approval on the Artificial Pancreas Project.  

The fact that people die because of hypoglycemia is not disputed.  Those who have diabetes living in their house are well aware of its dangers.  We remind our loved ones to test and be in range before driving anything from a bicycle to a motor vehicle.  We wake up multiple times throughout the night to test and make sure that our loved ones are safe. We know that diabetes is a deadly disease.

Many were shocked at the figure however--1 in 20.  Many of us have hundreds of friends with diabetes listed on Facebook.  A quick scan would mean that five of every one hundred people we know will die of hypoglycemia.  That is terrifying. It brings the worry and the desire for a cure and better treatments to a whole new level.

Is that a bad thing? Jessica Apple discussed this in her recent post.  She suggested that November not be a time of feeling good and turning things blue but asking for change to save lives.  Over the years I have taken this same approach--take no prisoners and show the down side.  Yes my son can do everything his brother can but.... and its the but that should not be there. Its the but that allows him to live. Its the "but" that we need to change.

Its a fine line however in giving your child hope and showing the world the darkness. I like the power of the JDRF ad but fear my son seeing it. While I present the dark to politician and the general public, we focus on the positives at home.  

As a parent though, when I stop, personalize the statistic and think of 20 children with Type1 diabetes including my son  and then realize that any one of them including my son will die of hypoglycemia? I just can't go there. I cannot spend more than a second on the thought. It makes me ill and shakes me to the core. My heart is crushed and I am terrified. Maybe that is not the worst thing either.

That fear motivates me to work harder.  It makes me want to spread information to a larger audience. It makes me want to focus more on ensuring access to things like pump therapy and a CGM for my son and the 19 other children (of all ages) whose lives could be saved by better technology.  It also makes me want to take a harder look at the work of the DRI and other groups who claim to be working for a cure. 

One in twenty people living with Type 1 diabetes will die because of hypoglycemia.  That stark number needs to change. We can work to prevent this. We can work to "fix it".  As a parent, I cannot fix my son's body and take diabetes away from him but I can work to fix a system that keeps lifesaving tools just out of reach.

This disease is serious.  We need to be equally serious about keeping out loved ones alive and providing everyone with access to the tools to do so. We would not deny someone who could not walk a wheelchair.  We cannot deny someone who cannot produce insulin the tools to deliver and monitor this lifesustaining liquid.

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.