What didn't kill him made me stronger

A little over a month ago I came across an essay contest sponsored by a wonderful organization, The Diabetes Hope Foundation.  They are an amazing group based in Ontario started by a mother of three young men--two of whom has type 1 diabetes.  Her children have grown to be amazing men and her courage and dedication has never ceased to amaze me. 

I looked over the contest for a bit and asked my mom what she thought. Had diabetes really made "me" stronger?  I knew that if she could have reached through the phone she would have given me a large slap upside of the head so I figured it wouldn't hurt to enter the contest.  At stake was an IPod Touch and an IBGStar meter (I thought it was an iPad and was quite excited but I would not turn down an IPod either--actually my son won`t turn down the IPod!).  I sat down and attempted to write my story in a brief, 500 word essay. That was the biggest challenge of all! Finally, I pressed submit and asked my friends to vote on what I had written. I was 100 votes behind to start but my story was listed. I had a month to wait and see what would happen. 

Yesterday at the DHF's annual diabetes walk, the winner was announced. I am proud to share the winning essay with you...mine!

Diabetes barged into my life on a stormy day in March of 2000. Life was simple and each day was taken for granted until I heard the words...”If he lives past the next twelve hours we will teach you how to handle a child with diabetes.“ From that moment forward, I learned a lot about myself and my personal strength. I was terrified of taking my son home from the hospital. Could I handle making a toddler eat at specific times? Could I make him bleed numerous times per day? Could I stab him with a needle at least four times each day without him understanding why? Yes. I had no choice. I would force him to eat. I would mark his tiny body. The alternative had been shown to me in the ICU and it was not an option. I cried in frustration, alone in the dark. People told me I was stronger than I knew. I could do this. They were right. I did it and continue to do it. Diabetes is a constant struggle. No two days are the same. I constantly learn something new. I realized that not everyone was as strong as me. Not everyone to handle the challenges presented by diabetes and the rest of the world. I worked to change that. I gave comfort and educated people as often as I could. I changed laws. I shared information and offered support. Diabetes had stormed into my life but it gave me the strength to create real change. It made me realize that one person really can make a difference. It made me push my fears aside and turn emotion into powerful energy that propels me forward to keep fighting and to keep working to change the world for all people living with diabetes.

Thank you again to all of the amazing friends and family who supported me!! You are my rock and my strength. 

The importance of time changes

As you know if you read my blog regularly,  we were recently on the west coast for a bit.  That means changing our bodies and our clocks back 4.5 hours.  Its a bit of a challenge for the first few days but my son's teenage body can sleep until noon in any time zone!

The challenge for Mom was how to deal with his pump.  I have spoken to people before who do not bother to change their time on their pumps if they are not going to be away for very long. We were gone for about 10 days so I felt that a change was needed. I gave his body two days to adjust and then reset the time on  his pump. All seemed to work fine. 

When we came home I reminded my son to set his pump back to local time. He did as he was told and I thought nothing more of it...until we had a site issue.  

My son was high and he needed a site change.  As he dug out his supplies, I looked through his pump history. He hadn't bolused since 6am!!??? What the?? Before I yelled, I realized that we ate supper at 6pm.  His pump was 12 hours off! That was a huge problem.  His highest basals were being delivered in the middle of the day rather than at night.  His insulin to carb ratios were completely off. There was no way he could possibly be in range with all of this out of whack!

I made the quick change and waited for everything to return to a more reasonable normal.  Its amazing how one little thing like am versus pm can make such a huge difference in your life! 

Time changes? Who invented them and why must they be so painful on all levels...especially when Diabetes lives with you.  

This is our "Where's Waldo shot?"  Can you find the teen with diabetes in the trees? 

  

Isn't diabetes enough?

We see the eye doctor on a regular basis. Well we did until we moved. We had a fabulous, exceptionally thorough optometrist previously. Each year my son and I went to see her. I went because I am blind as a bat and too chicken to see about laser treatment and my son went in order to keep on top of possible diabetes complications. 

I knew eventually we would need to find a new eye person and we did.  My son's diabetes clinic set us up with a pediatric opthamologist.  Today was the appointment.  I expected it to be short. The sign said to expect 1-2 hour appointment length or more if you were a new patient.  Holy crap! We were going to have to camp out and I didn't have a book to read! 

Our appointment was at 8:30am.  The doctor was late.  We finally got into the office and the exam began. My son did poorly. He had trouble with the largest of print.  Things were not looking good. Part way through he pulled out his glucometer.  Crap (again!).  Highs (or lows) would impair his vision.  He had been high the day before after breakfast.  How the heck were we going to know if he needed glasses or not? He was high.  How do you schedule an appointment for when your bg levels are perfect?? Diabetes ruins everything.

I had not really thought about diabetes messing with an eye exam before.  My kids did not inherit my poor eyesight and I never think of something else being wrong. In my mind, the opthamologist was about diabetes not eye sight. There had been close calls before--"we will watch this but he will probably need glasses later."  but they had never amounted to anything.  Was today going to be different? 

My son had his eyes dilated, she re-examined him and decided that he would see for another day.  His eyes are not 20/20. They are a little bit worse but not enough to worry about.  She left it up to us to discuss and decide what to do.  I asked if getting glasses now would prevent further deterioration of his eyes.  She said no. 

As we got into the car at the end of the appointment, I asked my son what he thought. He said that there was NO way he was having glasses, contacts or anything else.  He could see. He could see the writing at school. They had said before that he may need glasses but his eyes were better at the next appointment. Today was no different. He would not need glasses. He had diabetes. One thing in life was plenty. 

Well, I asked didn't I?  I agreed that we would wait and see how things went. If he felt he couldn't see, he was having problems at school or next year she said things were worse--glasses it would be. He was right though--shouldn't one health issue be enough for any person?      

My Goal for the school year.

Its that time of year again.  New clothes have been purchased because he has outgrown "every pair of jeans" he owns...or so he claims.  Fancy scientific calculators have been bought to allow him to handle high school math and a pile of note books sit on the floor in his room waiting to be taken to school in the next day or two. 

School begins tomorrow in full force.  The bus arrives at 8am and he will be gone until close to 4pm.  We are lucky.  There is no change of schools.  There will be minimal change in teachers.  My son goes to a small but growing school.  His class size will be tiny.  His teachers have had two years to begin to understand his diabetes needs. I am not in a panic. 

My son will be 15 tomorrow. He carries his meter, glucose and spare supplies in his back pack.  There will be new expectations for grade 10 however.  I am hoping that this will be the year that he hits the ground running rather than sits on the sidelines for the first semester until his mother loses it, gets involved with the teachers and he pulls up his socks for the rest of the year. 

This will also be the year that I expect that little bit more when it comes to diabetes care.  I will be sending all of his teachers a reminder letter regarding my son's needs and specific care.  I will also be demanding that my son actually write all bg readings ON his exams before he does any.  I would recommend this to students of any age. 

As parents, we want our children to do their very best.  As parents of children with diabetes, we have seen first hand how cognitively impaired they can be by a high or low blood glucose reading.  If I know my son studied for an exam and failed BUT had a low bg level before taking the exam, I know that the exam did not measure his true knowledge.  I can then work with the teacher to see what we can do to get a more accurate result. 

My son is not keen on testing in class.  He does not like drawing attention to himself. I have been asking him to write his readings on tests since he was in elementary school. It has been hit and miss at best.  This year, its the one thing that I really want him to get into the habit of doing. Its my care goal for the year.  Not a huge one but a big one for him--and an important one for his academic career! 

Happy first day of school everyone!!

CWD Conferences are THE BEST!

I have said it time and time again, CWD conferences truly are the very best events out there for people living with diabetes.  Vendors who fail to take part are missing a lot.  Families who do not take part are missing a lot.  People with diabetes who do not attend are also truly missing out. 

Yes, I am part of the Canadian faculty which does mean that they cover my plane fare and lodgings while I am at the Canadian events but that in no way changes my perspective.  Actually it enhances it.  Each year I help out at registration and at that desk you see a lot. 

You experience the person who walks up and says "My toiletries, which happened to contain my insulin, infusion sets, sensors, and reservoirs did not make it into my luggage."  Before this person can ask if anyone has anything to spare, three people offer everything that they could possibly need to handle their diabetes for the weekend and everyone is able to enjoy the conference without a second thought. 

You also get to see the smile on a mother's face who says "In my rush, I forgot to bring the gluten free snacks for my child but you have an entire buffet dedicated just to her needs!  I don't need to worry about her at all!"  

I learned a few other benefits this conference as well.  When you lock you key in your room, your son is off site with the other key, and you need to be in your room to get information for your presentation which will take place in less than 15 minutes, the lanyard around your neck with your name will get you a new room key! 

While sitting around a lunch table, I learned that others have used the "D" card on occasion for convenience. If you don't want to get stuck in a room with an annoying coworker, tell them that you are low and need to check.  If you don't want to share that amazing piece of chocolate cake? Tell them that you are sorry but you already pre-bolused for the entire piece.  

The most important thing that was reinforced for me during this conference? The value of friendships--new and old.  I watched two young boys pose arm in arm for a picture.  You knew that the friendship was struck up at this conference. I met people who were previously just names online and enjoyed getting to learn a bit more about them.  And as always, I enjoyed time, talk and meals with friends that I have been blessed to have in my life through the ups and downs for the past eleven years.  There truly is nothing better than a CWD conference!

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....

Do They Know What They Are Missing?

I was again honored to be a part of the Children with Diabetes Friends for Life Vancouver Conference this past weekend.  As a member of the faculty, I enjoy interacting with the many families who attend the conference, chat with some of the vendors and learn from the other staff and faculty whom attend.  It is an amazing experience. 

Over the past few years I have been a little discouraged at the lack of support from Canadian vendors.  Each year that I attend, I hope to gain some insight into which insulin pump I should chose for my son. His warranty will soon be up and what better place to learn about pumps then at a diabetes conference?  

Last year, when the conference was in Toronto, one of the major pump companies was obviously missing. I was quite disappointed because I had decided that I wanted to seriously look at their CGM integration. A few other companies also seemed to be missing but the event was still a great success. 

This year, when looking at technology, the pickings were even slimmer.  There were only two pump companies to chose from.  There was only one glucometer company to check out.  There were no insulin companies showing us the new directions that insulin and other hormones are headed in.  There were no sweetener booths showing us the awesome ways that better tasting alternatives to sugar could be used. 

There were some great companies present.  Children could decorate OmniPods.  Everyone loved dressing up and having their picture taken at the One Touch booth.  There were new gaming apps on display by an innovative company called ayogo as well as booths from Store a Tooth, MyCareConnect, Dex4, CDA, JDRF and more.  

At the beginning of the event, I was really disappointed by the poor Canadian corporate support to families living with diabetes.  Why were we not important? Did they feel that they were already reaching us through social media and did not need to be "seen" at such an event? 

As the event came to a close, my perspective changed dramatically.  I am sure that Jeff Hitchcock, Laura Billetdeaux and the other CWD staff experience this all of the time, but it was a bit novel for me.  I had vendors coming up to me as we were leaving thanking me (I spend a lot of time directing people from the registration booth so they have seen me a few times)! They were grateful to have been a part of such a special weekend.  They were honored (as I always am) to be involved in something that touches so many.  

I am not sure why the "other guys" don't think that they need to attend CWD Canada events.  I know that they are truly missing out!  These events do more than bring families together and connect kids with new friends who also have diabetes--they create friends for life.  They create memories.  They inspire. They touch our hearts like nothing else can.