Category Archives: living with Type 1 Diabetes

The Talk

My son is now an adult.

He is living at home again while he does some upgrading and starts training for his chosen career.

Its hard to believe that my baby is an adult but he is. The law says so. He has his own car. He can drink…and to my surprise (because he is my baby) he does drink.

He seems to be responsible…well as responsible as you can be at his age. When he drinks he doesn’t drive. When he goes out, he brings along a friend who is a designated driver and doesn’t drink. He spends the night at that friend’s place so that he doesn’t drive again until he is sober.

He brings his test kit. He has his spare supplies and extra glucose with him.alcohol-drinks-1

He has a system when he drinks. He has already learned how certain beverages effect his bg levels. He is pretty confident in what he is doing.

How do I know this? Because he told me.  We were discussing his night out.  I was giving him a little bit of the information that I had learned about diabetes and alcohol thanks to places like the Diabetes Mine.  He told me his experience.  I asked what he would do if heaven forbid, he got falling down drunk.  How could he handle things? He told me that he had been there. He began to tell me what he did.

I was shocked.  This was my little boy. I began to walk out of the room. I didn’t want to know. I didn’t want to think of my baby as drinking. I really didn’t want to think of my little boy getting drunk. He stopped me.

He told me that I had to know. It was important for me to understand. If I didn’t listen to him, I would worry more. He wanted me to know that he was listening, learning and growing up. It was going to be okay.

I listened. I was proud that he would have this dialog with me. It was candid. It was honest. Nothing was hidden to make me feel better. It was raw.

It was tough to hear. It was good to hear.

He has stumbled. I have cried. He has learned. So have I. Together we will continue to get through.

I am glad he feels that he can talk to me.  I am glad that he has learned. I am proud that he wants me to be okay as well.

5 Things that I have learned about me over the past 14 years…

Diabetes has a very steep learning curve.  Some of us have no medical knowledge and yet are forced to learn about giving needles and drawing blood. We must learn about nutrition and exercise instantly.  We learn how to work with our children and help them to understand what is going on in their bodies.
 
In a moment, our world changes. As I have said before, it completely explodes your world and leaves you to work with a new landscape.  It does not end your world, it just ends that naive world in which you may have existed before. It certainly did for me. As we navigate this new landscape, we learn a lot about our relationships and about our children. I thought that today I would look at things that I have learned about me over the years…
 
1. I became more empathetic thanks to diabetes.  I like to think that I have always had empathy.  I try to never judge a book by its cover and I tried to teach my children to do the same.  We never know what is going on behind closed doors or what is going on inside another person’s body. Just because they look well does not mean that they are not struggling with something that we can’t see.
 
Kerri Sparling brilliantly illustrates this point in her book Balancing Diabetes.  If you haven’t read the book, you should do so.  You will read about her response to a dinner conversation in which one person slams a family member with diabetes who “eats whatever they want, and they never test their blood sugars, and they never go to the doctor.” (page 161) Kerri stands up for this unknown person and asks how they know that this person really doesn’t do all of these things? She had tested and bolused at the table without anyone knowing so perhaps this person did too.
 
Diabetes has brought me that same sort of need to defend others.  When you see my son, you think that he is perfectly healthy.  You don’t see his broken pancreas unless you look at his insulin pump and then many would still assume it is his phone.  I don’t want people to think that my son is broken. He isn’t but he does have to deal with things that other young men his age don’t.  He looks after his diabetes privately. He does not show people how much work goes into looking and being as healthy as he is.
 
2. I have an even bigger mouth than people thought. I have always believed that if you don’t like something speak up.  Things will not change if you mutter to yourself.  If you want to see things happen differently then talk to people who can help you to make that change. Listen to their perspective and together work to create something that you can both live with.
 
After my son was diagnosed with Type 1 diabetes, I had a greater need to fix things. I think every parent who goes through this diagnosis of a child has this same feeling on some level. We often feel that we let our child down by allowing them to develop diabetes (boy do we have egos! Like we could have stopped this?) Our only way to “fix” things is to work to make the world better for them.  We learn as much as we can, educate our schools to protect our children, and we work with our diabetes team to get the best care that works for our child.
 
Some people will write letters, lobby government officials, and become very active in educating the rest of the world about life with diabetes.  That was me.  I wrote letters. I started a website. I contacted government officials. I wanted life to be fair and just for all people living with diabetes. I wanted to protect my son and all of the other children out there living with this disease. I wanted to make things easier for them…and I still do. I stood up to administrators and Ministers of government. I learned that they were all just people who had families.  They were not scary people with a lot of power but loving people who were often willing to listen to you.
 
I always knew that I had a mouth. As I said, I always believed in standing up for what I believed in. I didn’t know that if I stood up for something others would stand with me and that together, I could lead people to create serious changes in policies.
 
3. I didn’t know that I could touch people’s lives as much as they touched mine. When my son was first diagnosed, I was lost and felt terribly alone. After a number of months, I reached out to a group of parents online.  They touched my life and helped me in more ways than I could imagine. The inspired me to do more.  I was therefore honored when I was asked to be a part of their Canadian Children with Diabetes Friends for Life conferences.
 
I am a huge fan of these conferences and all that they give to families living with diabetes. Each time that I am at these events, I am humbled and amazed by what I see. Families become empowered and stronger before my eyes. They meet new people, hear new philosophies and get the chance to just talk to people who “get it”.   When I get to speak about issues that I have dealt with and offer ways that have worked, it is wonderful to have people come up to me later and say, “Thank you! I can do this now.” It is something that I never imagined that I would be a part of 14 years ago.
 
4.  I am not in this alone.  Fourteen years ago, I knew no one with children with diabetes.  I was given a phone number of a family diagnosed just before my son and we talked on the phone one day.  It would take us years to meet up.  In the meantime, I would find an online support group that helped me find my way.  It empowered me and educated me.  The members of that group became my family. They had been there, were living there, and had experienced that. They understood milestones like your child lancing their finger for the first time. They got the sick humor of watching blood gush across the lunch table.
 
Over the years, that support team grew.  I found people in my community to meet up with. I became involved in national groups and met new parents who were also struggling. Eventually social media grew and I became involved there finding many more parents and people living with diabetes.  Being able to share milestones and fears gives me the strength to move forward. I are far from alone today.
 
And the fifth thing that I learned? Diabetes makes us stronger than we ever knew! Life presents challenges.  Life as a parent presents challenges. Life as a parent of a child with diabetes adds another level of challenge to the equation. Many people have it worse. Many people have it better. I have cried in the shower. I have sat alone in the dark and shed a number of tears. I have been grateful. I have been frustrated but most importantly, I am still here to tell the story…and so are my children.
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To Those Just Beginning…

Day two of the Health Writers Activists Monthly Challenge and today its all about what I would tell or have told the newly diagnosed. At first I was not going to do this topic.  I don’t really write to the newly diagnosed–do I? I mean, I just ramble about things that we are dealing with now. Diagnosis was a very long time ago. What do I have to offer?

I then realized that yes I do write to the newly diagnosed. I talk to them at conferences.  I respond to them on Facebook. I let them know that it will be okay.  

They will find humor in the strangest places….Like this past Christmas season when my teenage son discovered the reason for this night time high blood sugar levels–the dog was feeding him in his sleep! There was also the time that my son decided that he no longer should be doing his own site changes.  His doctor suggested that he do them since he was about 13 and now at 15 he has had enough.  His reasoning was typical teen and another source of comic relief for an often draining disease.

We need comic relief because there will be times that parents will feel overwhelming fear.  This is normal. Its the new normal that comes from living with a brutal and unforgiving, silent disease. It will sometimes lead to depression and it is important to recognize it, accept it and get help to find a way to move forward.  We all have our days when we want to be the way we perceive the rest of the world to be. We want sleep.  We want a life without injections or insulin pumps.  We don’t want to see blood or test strips but there are sunny days.  There are people who understand.  You will make it through another day and begin to accept your new normal–I promise.  

There is no choice. The alternative is not worth thinking about accept when counting your blessings.  Our children are strong.  They are younger versions of us and we are making it.  They will amaze us and frustrate us.  Diabetes will not hold them back from being incredible. 

Type 1 diabetes is much more than “take an injection and call me in the morning”.  It changes our lives.  It changes our perspective. It demands our time and our efforts even when we don’t want it to but our chidren are alive.  We will connect with amazing new people who also live this life.  There will be downs but there will be ups and over time you will learn to live life with diabetes not for it.

Bloodletting is a Good Thing?

Its strange the things that go through your head at three in the morning. Perhaps its because my brain is still asleep. Maybe it thinks that I am still dreaming. I am really not sure but either way, I have had some of the strangest thoughts as I search for a finger and blood.

Last night came a reoccurring thought…how sick is this process?? I mean really! Each night, I crawl into my son’s room to slice his finger and make him bleed. I actually take pleasure in injuring my son’s pale skin.  I am upset when I do not see that red glow of blood flowing from him. This is what diabetes has reduced me to.  A callous parent who is pleased to see blood spill from her child!  

Its true. Blood gives me so much information. From his blood I know if his pump is delivering insulin properly.  I learn if he bolused is meal in the correct manner. I know if we miscalculated for exercise.  I know if we need more insulin, an early morning meal, or if I can sleep feeling relatively confident that he will wake up in the morning.  

I began to wonder how many other diseases are this invasive?  How many other parents take pleasure in seeing their child bleed multiple times over a 24 hour period.  How many others breathe a sigh of relief when a needle pierces the skin of their child multiple times during a day because they know that it means that they will be alive for another day. 

Diabetes is a sick disease.  I am sure that there are other diseases that require our loved ones to be abused simply to stay alive but I thankfully have not experienced them.  I have experienced filling a tiny finger with blood upwards of twelve times per day just to keep him healthy.  I have also experienced seeing a tiny body laying lifeless in Intensive Care with tubes and wires running everywhere. I have seen my strong, young son grey and weak as ketones threaten to ravage his body.  The bloodletting sadly seems justifiable but I pray that one day there will be a better way–a better way to keep him alive and healthy. 

Can you say Wow!

The other day I was on Facebook, no that is not the “wow” factor”.  Anyways, I was on Facebook and noticed that someone had posted a request to know if people were planning a special green meal for St. Patrick’s Day on the 17th.  Again, no big deal normally about people celebrating St. Patty’s Day.  Its not a day that I celebrate but it is a date that sticks in my head.


The 17th of March is a day that I think about every day.  Its a day that I obsess about each year.  Its the day that my world changed completely. Its a day that I found my focus and entered a world that I knew nothing about. Its the day that changed the life of my entire family forever.  

So you get the idea that I am a little obsessed by this day. This year the day was especially important because it will be 10 years since diabetes came into our lives.  Ten years ago on that date I did not know if my child would live or die.  Ten years ago on that date I would spend a lot of my time praying and willing my son to live. After March 17th, ten years ago,  I would began a journey to learn everything I could about Type 1 diabetes. 

Imagine then how shocked I was when I realized with that post, that I had NOT thought about that date.  I was not waiting for it to happen. I was not planning my memoirs for that day or any other event to mark it.  I was instead focused on a date later in the month.  I was obsessed with my other son turning 16.  How could that be happening?? I am way too young to have a 16 year old child! How did that little baby grow up so quickly? How could my little boy be old enough to drive in March of 2010? I was obsessed with having a child old enough to be legally allowed to drive.  How would I handle my “child” driving my vehicle? I am too young to have a child driving. I must have been like 12 when he was born! 

I was actually very happy to realize that the theme that I had created for the month of March, I was beginning to live.  I had decided that the first 10 years with diabetes were about survival, learning to cope and staying healthy.  The next 10 years and then some would be spent celebrating.  My son is alive. He is healthy and diabetes is part of our lives.  It is a huge part of mine as I help others with the disease.  It is just an annoying but necessary part of his.  It is no longer the sole focus of our lives however.  There were other bigger milestones that eclipsed diabetes and that truly was a huge and wonderful WOW! in my life.