18 years of life with type 1 diabetes

18 years have passed and still, I remember it like it was yesterday. March 17, 2000.

The day started out sunny but by the end of it a horrible storm would hit my world and nothing would ever be the same.

We drove through a raging snowfall to take my lifeless 2-year-old son to the hospital.  There we were told that he had Type 1 diabetes.  They would monitor him for the next 24 hours to see if he would live or not.

Thankfully he survived that day but the fear never left me.   Before we left the hospital I was terrified of taking him home. I worried that I would make an error in his insulin and cost him his life.

When we got home, I did make mistakes.  Because he was so young, he didn’t know how to tell me if he was high or low. We didn’t have continuous glucose monitors then either.  If he fell asleep, I would panic.  The meter would be taken out before anything else.  I would clean his tiny finger, get a drop of blood almost as big as the pad of that finger, and apply it to a test strip.  30 seconds later I would finally learn if he was low or simply a toddler in desperate need of a nap.

Over the years he would learn to tell me if he was high or low.  His attitude would sometimes tell the tale for him.  When he short tempered…and trying to kill his brother by throwing things at his head, he was definitely high!

Eventually, he learned how to tell if he was low.  He would come to me and say he felt “weazy” and needed some juice.

We moved from injections to an insulin pump by the time he was 5.  My family couldn’t handle seeing him sitting by himself eating meals at set times when there was a better way. They helped us to pay for that first Cozmo insulin pump.

Our life was changed when his pump arrived.  No longer did we have to deal with 6-8 injections per day.  I was able to allow him to graze.  This was an incredible freedom for a small child…and mom.

Puberty came with its own challenges.  The teen years were much like those of children without diabetes.  There were good times and bad.  Somehow we made it out alive and that is more than can be said for some children with diabetes.

My son is now 20 years old.  He has lived with diabetes for 90% of his life.  That makes me want to cry.  90% of his life has been dealing with injections, infusion set pokes. finger lancing, carb counting, high blood sugars and lows.  He has learned how to workout while managing diabetes  He goes out with his friends at night and as a few drinks all while dealing with insulin, test strips and diet.

My son works in the construction industry and must keep his pump warm when temperatures dip below 30C.  He manages to test and combat lows all while wielding a hammer and trying to get his work done.

He lives thousands of miles away.  His roommate has known him his entire life.  They watch out for each other.  He knows about my son’s “broken pancreas”.  I wish that neither of them ever had to learn what diabetes was or how to handle it but life had other plans.

18 years.  It amazes me and saddens me.  I am so blessed to have a strong, young man who is still doing so well after all of these years.  It fills me with gratitude to think of all of the love and support that has guided me on this journey.  I still wish that he didn’t have to be on it.  I can’t believe that 18 years have passed already.

18 is just a small blip in his life.  I look forward to watching the next 18 years and another 18 after that.  Who knows what technology will have in store for him then.  Perhaps he will live to say “I used to have type 1 diabetes but now I don’t”.  I certainly hope so.

Diabetes Diagnosis day…It slipped my mind

Celebrating 17 years of health and wellness
Celebrating 17 years of health and wellness

It slipped my mind…sort of…well, more so than ever before. Today is the day that Diabetes turns 17 years old in our house.  Strangely, it hasn’t consumed all of my thoughts this month.  I haven’t planned this post for weeks in advance…in fact I actually had another post planned for this week when I realized the date!

That is unheard of for me.

Every March I think of two things…what will I get my oldest son for his birthday and how long diabetes has been a part of my youngest son’s life.

This March has been a bit different.  I was busy this March with other things.  For the first few days of the month, I got to spend time with my nephews after not seeing them for a  few years.  I was able to meet my youngest nephew for the very first time.  We enjoyed cuddles and goofing around.  It wasn’t until I was home that I thought about his little life and the life of his older cousin–my youngest son.

When my son was his age, he was being stabbed with a needle somewhere in his body 5+ times per day.  At the age of 3, his little fingers had tiny marks from testing his blood glucose levels 8 or more times per day.  My sweet little nephew had bruises on his knees from playing outside with his trucks.  When my son was that age, he had similar bruises but there were also bruises that would sometimes find his arms, legs or stomach after an injection.

I am so glad that none of my nephews have had to go through this.  I remain in awe of how well my son has managed to cope.  He won’t even notice this day.  Life with diabetes is all that he has ever known.  For him, it is simply be St. Patrick’s Day–an excuse to go out with his friends and have a beer.

I will pause as I always do.  Most likely I will message a dear friend whose son shares this “dia-versary”.  On this day, I will  be extra grateful for the many incredible and lasting friendships that diabetes has brought into my life.  I will also take a moment to cry for the friend who lost her child last year–we were brought together because of our sons’ common diagnosis of type 1 diabetes.

Today I am sure that I will slip back in time for a moment.  There will be a pause in my day when I vividly recall the lifeless child that I held in my arms 17 years ago.  I will remember the prayers that I said and the prayers that were offered as we rushed to the hospital.  At one point today I will see, in my mind’s eye, the doctor who sent my son to ICU and told me, “if he makes it through the next 24 hours, you will need to learn a lot about diabetes.” The phone calls, the terror, the uncertainty will all come flooding back just like it was yesterday.

Today I will quietly cry for the life that was lost but I then I will wipe away the tears.  As I tell others, today is about celebrating.  Today marks 17 years that my son has lived strongly with type 1 diabetes.  He has never let it stop him from doing anything–except for shovelling the driveway in the winter.  He seemed to often be conveniently low as a child during that particular chore.

My son now manages his diabetes his way. I don’t test him.  Rarely do I know what his blood sugar levels look like.  I can’t tell you his insulin to carbohydrate ratio or even his basal rates. Diabetes is his disease to handle now.

It hasn’t all been perfect. There have been stumbles along the way.  I still remain there to help when asked.  We discuss carb counts or extended boluses.  I still do site changes when required. Seventeen years later, we are both finding our way  but he is healthy and thriving.  I can ask for nothing more…except a cure of course.


But I will never forget…

As we drove down the street my son turned to me and said, “You knew that I had diabetes when I took a face cloth to my tongue, right?”

I told him that he had wiped his tongue with a dirty sock and then recounted the rest of his diagnosis story.  He told me that he was glad he didn’t remember…I will never forget…

It was March. He had not been feeling well. He was two years old and wanted to do nothing but sleep and lay in my arms.  He was going through diapers faster than I could put them on him.Everything we owned was soaked with urine.  We had been to the doctor once…when he began to wipe the white spots off of his tongue with a dirty sock.   They said it was nothing serious–an ear infection and white mouth. 

When things didn’t get better, I made an appointment with our family doctor. I stopped at the drug store before the appointment to pick up baby food. He was eating nothing, I hope the nutrients from baby food would help him until he got over whatever it was that he had. 

We sat in a full waiting room waiting for the doctor to return from lunch.  The people with appointments before us told the receptionists to take my son first.  He needed to see the doctor right away.  They could wait.

I took him into the examining room and told the receptionist that his feet were so cold. I had wool socks on him and he still could not warm up. He was asleep in my arms. His breathing was raspy.  She looked worried.

It was not too long before the doctor arrived. He had known me since I was pregnant with my first son. He had been both my children’s doctor since they came home from the hospital.  He had a very concerned look on his face when he examined my son. I explained what the Emergency Room doctor had told us a few days before–that he had an ear infection but he wasn’t getting any better.  He looked at me concerned and said “My love, I could be wrong, but I think he has diabetes.  He is in ketoacidosis.  He could have a chest infection but I need you to go to the hospital right away for emergency blood work and a chest x-ray.  While you are gone I will get in touch with the other hospital and get things organized for you.”

I really had no idea as to what his words meant. I heard “diabetes”,  “ketoacidosis but could be a chest infection.”  It was no big deal. I had healthy children.  He had a chest infection because little babies do not get diabetes and I didn’t know what that keto…something or other even meant.  He was fine. It was an infection. We would get an x-ray and they would give us something to fix it. No worries. 

At the hospital we were met with the same fast service as we had seen in the doctor’s office.  My son did not stir when they took his blood.  I had to hold him up for them to do a chest x-ray.  People still gave me concerned looks but I remained insulated.  My child would be okay. They were wrong to be concerned.

We went back to the doctor’s office to wait for the results of the testing.  I sat in a different spot this time. I was now directly across a poster that advertised the signs and symptoms of diabetes.  “Frequent urinating, blurred vision, fruity breath, thirsty…” The list continued and I realized that my son had so many of these symptoms that diabetes could not be ignored as a diagnosis.  His breathing continued to be shallow and he continued to sleep. Worry began to creep into my conscious.  This was not just a chest infection.

The doctor called me into his office.  He said he had arranged for the very best care for my son in the next city.  We needed to drive there now.  They were waiting for us. My son had ketoacidosis.  It was vital that we get there now.

We packed up my boys and began the forty-five minute drive to the hospital.  Later, my son’s father would tell people that it was a blinding snow storm and he struggled to get us there safely.  I honestly don’t remember the drive.  I focused my attention only on the lifeless little body in my arms.  I didn’t dare put him in his car seat. I held him the entire way.  I prayed like I had never prayed before. I willed my life to go into his body.  He could not die. Nothing could happen to my child. I had lost a child before him in a miscarriage. I would not lose one of my precious little boys.  I would die first. 

We arrived at the hospital and I was dropped off at the door while my son’s father looked for a place to park.  The lady at the reception desk seemed to take forever to fill out the required paperwork. I worried that she was stealing minutes of life that my son didn’t have.  I knew she had to do her job but I was now terrified.  She must have sensed how scared I was because when she was done, she personally took me to the ward where the nurses were waiting for us.

They took my two year old son and tried to weigh him.  He was too weak to stand on anything so they put him on a baby scale. He weighed 11kg.  How was that possible? How could he be so tiny? I was shocked and more terrified than ever.  They hooked him up to monitors and waited for the doctor to arrive.  There was a snow storm on and was not in the hospital yet.

It didn’t take long for the man who would save my son’s life to arrive.  I was shocked to see this man who looked more like a lumberjack than a doctor walk through the door. His hair was messed. His beard was big and bushy.  He wore a plaid shirt and big winter boots. He looked at my son and order him into the Intensive Care Unit. Things quickly went from bad to worse. 

My son’s bed was taken from the pediatric floor to the ICU ward.  We were surrounded by older people who were dying. My son was a baby.  He could not be here. This was wrong.  They made me leave the room as they began to run tubes and IVs throughout his body.  Finally the doctor came out to talk to us. 

He said that my son had diabetes.  His blood sugar was at least seven times what it should be.  He did not know how much damage had been done. They would give him small amounts of insulin over the next twenty-four hours and see if he responded. There was a real danger of stroke, heart attack or prolonged kidney damage.  If he lived for the next twelve hours then we would begin to look at the future but first we had to get through the night.

I was stunned. I couldn’t breathe.  I went to call family.  All I could say was to pray.  I told them that we had to wait twelve hours. I asked my mom to call the rest of my family. I couldn’t do it.  Family that lived close to us had already called our family doctor and knew that things were not good. I then sat and cried but I couldn’t cry for long. I had to be strong. I had to give my strength to my son. (I would not cry until months after but when I did…well that’s another post)

That night I slept at his bedside.  His father and brother spent the night on the couch in a nearby room.  We all prayed and waited.  The next morning my son stirred for the first time in too long.  He tried to pull out the many tubes running from all over his body.  He was back! He was going to be okay. I knew he was. Nothing else mattered.

He was eventually moved back to the pediatric ward.  We would spend two weeks learning about diabetes care and curing the chest infection that he did have.  I knew that life would be trying but he was alive.  That was all that mattered–he was alive.

That was twelve years ago today and yet the memories and the emotions are just as raw as if it happened yesterday.  My son does not remember…but I will never forget.  I thank God each day that my son is alive.  He may have diabetes but he is still alive to live his life to the fullest each day.  

It Slipped My Mind

Today, as I stood in the bathroom preparing for the day by applying make up in hopes of erasing those fine lines, I realized something.  This was the month of March.  Today was the 5th of March.  The anniversary of my son’s diagnosis with Type 1 diabetes will occur in 12 days.

Since Diabetes barged its way into our lives, March has always come in with a dark cloud.  It would be lurking overhead no matter which way I turned. I would do my best to look at it in a positive light. I would “celebrate” how far we had come. I would count the wonderful friendships and experiences that it had brought into our lives.  I would remember. I would look back.  I would relive each detail of diagnosis again and again throughout the month.

This year, I have looked at St. Patricks’ Day with my same dismay. Its not a day that I feel is filled with luck although we were lucky to save my son.  Its a day of reflection but its a day , this year at least, that has seemed to be a long ways off.

I have been worried about getting my oldest son’s birthday present purchased and in the mail so that he has it in time for his birthday at the end of the month.  I have wondered how 18 years could have gone by so fast. Diabetes was not a thought. 

I have focused on really trying to get the new, error free, neat, clean, and easier to use web site up and running. For months I have fought with code and lost data but am now more determined than ever to get the newest version of www.diabetesadvocacy.com up and running this month.

I know that as the 17th comes closer I will reflect. I know that I will relive every moment of that dreaded day.  I know that my blog post for that day will look back to that day but for the first time in years, it has started to fade. It is not on my mind all month. Yes, it was a day that changed my life and the life of my family but its not as all consuming of a day as it once was.

I talk about my son taking baby steps forward in his care.  Perhaps, after 12 years, his mother is finally taking baby steps towards healing as well.

Diabetes is 11 today OR Why won’t it leave me alone?

Eleven years ago today, Diabetes announced that it had permanently moved into our lives. Its silent presence before that was masked and hidden. It appeared as the flu. The ER doctor called it an ear infection. I wondered if it was two year molars giving him a hard time. We were all wrong…dead wrong.

I have relived that day a million times over. I can see every second as if it was yesterday. I can still feel that lifeless little form that was my son laboring to breathe while resting in my arms and me praying that he would continue. Everything is vivid and detailed and yet so many years have passed.

We have moved from a meter that took a lifetime to tell us what was wrong and required a gallon of his precious blood to glucometers that give us a reading in five seconds and use only a pinhead amount of blood. We have gone from structured meals to a teen who permanently has his head in the refrigerator and “meal time” is every hour. We have gone from five injections per day to an infusion set change every couple of days. We have gone from a vial of insulin having to be thrown out after one month because we have not used it all and it has expired to using a vial of insulin easily in a week and looking for more to get him through.

Times have changed and we have moved forward. My son no longer has to be forced to eat but rather forced to slow down. I am no longer the only person in charge of his care–he now carries some of that responsibility. I am still the one up at all hours to test. Lows still keep me up for hours on end, forcing carbohydrates into his sleeping mouth. Highs are more common now as his body grows and hormones rage. Our fight to keep him healthy has never waned.

My son doesn’t remember that day eleven years ago. He doesn’t see it coming every year. He doesn’t remember the weeks in the hospital. He doesn’t remember the fight for his life. He doesn’t remember not being injected. He doesn’t remember not testing his blood. He doesn’t remember not counting carbohydrates. He doesn’t remember going anywhere without his meter. Yesterday I mentioned that Diabetes turns 11 today. He looked at me and simply asked, “Why doesn’t it leave me alone?” I told him that I had kicked it out. I had given it its eviction notice. I had even moved and not provided it with a forwarding address but it would not take the hint. We are stuck with it I guess.

And so we make the most of it. We hate Diabetes. It remains the unwanted house guest from hell but we count our blessings. My son is alive! He is here to stress me in puberty. He is complication free to date and lives a “normal” life for the most part. We have made many wonderful friends because they sadly belong to our exclusive “club”. We have helped others to learn about this disease and we keep teaching.

I will quietly remember this day eleven years ago. I will remember racing through a storm. I will remember my son being given twelve hours to live. I will remember how far we have come. I will reflect on the amazing young man he has become. I will be proud of how his brother has taken all of this in stride as well–how he looks out for him, how he treats him like a “normal” little brother–black eyes and all. I will focus on the blessings and move on to deal with year twelve.

11 years ago


In 11 years what have I done? Well, I got a tattoo…

It was almost eleven years ago when we were told that my son had Type 1 diabetes and I recently wondered what have I done? When my son was first diagnosed and we knew that he would live, I remember thinking that this was what my life would be about.  Now, I wonder what have I done? Has it been enough?   Have I worked as hard as I could? Have I made a difference each year that we had lived with diabetes?

Yes, this is a bit of a feel-good post.  It is a bit of a vain post all about ME.  So, what have I done? I have ruffled feathers.  I have whined. I have complained. I have been pushy. I have helped to change a few things for people with diabetes. And of course…I got a tattoo.

I have survived life with diabetes for over a decade and my son is thankfully alive to tell the tale. There were times I that I wondered if either one of us would make it.  In the early days he would hoard food in his cheek, swallowing nothing and dragging meals on for hour.  He would then vomit.  He would bring me to tears as I tried to get him to drink juice to ward off the low he was experiencing while hanging over the toilet throwing up and passing out.  I didn’t know how we would make it through another day let alone a few thousand more days but we did….and I got a tattoo to prove it.

I shared Rufus the bear with diabetes with children on the west coast of our province and on the west coast of my country.  I “met” incredible friends online who helped me to get past the above mentioned food battles and so much more.  I connected with amazing people in real life who met with me for regular “therapy” sessions which included great conversation, good food and a few drinks…and eventually I got a tattoo.

I tackled the federal government and won.  I saw that the Disability Tax Credit was not fair and had the issue brought up before a parliamentary committee. I was blessed with an amazing mentor who guided me and helped me motivate others to ask the Federal government for further change.  A bill of $41million was the projected cost, but we now see children up to 14 years of age given the Disability Tax Credit, and adults who intensively manage their diabetes also qualify without hassle…and did I mention that I got a tattoo?

My son got older and was soon heading off to school.  I began to worry about protecting other children with diabetes.  What happens to those students who’s parents can’t speak for them? How do we protect all of our children? I began speaking to anyone who would listen.  I wrote letters. I suggested policies. I educated educators. I educated parents.  I badgered provincial members of parliament. I wish I could say that I won and all of our kids are protected, but we have seen change.  I have worked with the CDA to change their guidelines.  I have been quoted by boards who use my policy as their guide.  I have been asked to meet with provincial policy makers to adjust how they deal with children with diabetes in their schools. Progress is slow but it is being made…and of course there was the tattoo.

Somewhere along the way I tackled something I had never done before. I created a website. It allowed me a platform to do a lot of the things I mentioned already. It also allowed me to interact with a lot more people than I normally would. This led to a challenge. 

Each year in November I worked to created heightened awareness of diabetes.  I wrote letters about our experience. I created a booklet on the “Faces of Diabetes“.  One year I wondered out loud what to do next.  The answer I was given was get a tattoo. The gauntlet was laid down by a woman in her 70s who claimed that she had done it so what was my problem? A number of other people said that they were up for the challenge. The plan was to get a tattoo relating to diabetes done in November.  Media attention to what you had done would be vital.  Pictures were a must and we would share.  The result was I got a tattoo and created one of my most visited and amazing web pages…my tattoo page

The tattoo created some controversy for me as in my exuberance, I shouted what I had done from the roof tops.  Some people did not appreciate my enthusiasm.  That was okay.  I grew.  Things changed but I had a tattoo.  Yes its my only tattoo. I had thought of getting one years ago but it didn’t happen.  When the challenge was made, I contacted an artist and he created something that I love–two entwined hearts.  I have two boys.  Their names were placed in each heart.  Their birthstone color was added and of course we had to have a diabetes awareness ribbon and blood. 
My boys sit on my left shoulder, close to my heart.  I have told them that when I am old, senile and walking the halls of the home in a nightdress with the back hanging out, they will not be able to say that I am their mother.  Their names are on my back and they will have to claim me.
So I guess I have made a few contributions in eleven years.  I hope and pray that I have (and will continue) been able to give back even half as much as I have been given (that list is for another post so come back and read again!).  In the meantime, well I have a tattoo that shows that diabetes has not beaten us..and never will!!