18 years have passed since my son was diagnosed with type 1 diabetes 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 glucometer 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 to 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.
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14 years ago today my world turned upside down. It was not a fork in the road. It was not a minor blip on the radar of life. A bomb exploded and it forever changed the landscape of my life. It was the day diabetes entered our life.
14 years ago this morning, I was looking at a sick little boy in my arms and was waiting to be able to take him in to see our doctor. I was ignorant of what was to come.
And just like that, he is a young man who happens to have diabetes
14 years later, my son is a young man making his own decisions and stretching his wings…who just happens to live with Type 1 diabetes. I am stumbling to come to terms with my new role of no longer being a hands-on mom and often find myself looking back to see what I have done in hopes of figuring out where I will go next.
There have been a lot of changes in diabetes technology
14 years of type 1 diabetes have brought many changes. Insulin pumps are more readily available and continuous glucose monitors are no longer things found in hospitals that are blinded for 7 days. They are real tools that families and individuals are using in real-time to help fine tune their care.
14 years later and still living strong with diabetes
14 years ago, type 1 diabetes threatened to take the life of my son. Today he is strong, vibrant and learning how to handle his disease. Diabetes does not control him. It’s just his “thing” to live with.
We have not always seen smooth sailing. We have had our moments. He has driven me crazy at times–failing to test or change infusion sets. He still can drive me nuts. I have yelled at him because of my own failings and frustrations. We are not perfect but we are living. As the commercial says, we are living with diabetes. It stops him from little.
Type 1 diabetes has brought us life long friends
Type 1 diabetes has brought me the most incredible friendships. I have friends throughout the world who have reached out at various times in my life to help me up or shove me forward. I hope I have done the same for them.
14 years seems like such a long time and yet I can see us back in that ICU just like it was yesterday. Some things you never forget…my son has but I haven’t.
On days like today, I look back and say thank you! Thank you to the doctors and specialists that kept him alive and have taught us through the years. Thank you to the Higher Power that has been with us through it all. Thank you to the friends and family who have joined us on this journey. Thank you for 14 years of good health and improved technology!
Diabetes sucks but life after diabetes…well it’s still life and that is pretty amazing!
I was recently asked what advice I would give a parent of a child newly diagnosed with Type 1 Diabetes. It has been a number of years since I fell into that category but I can sadly remember it all like it was yesterday. That being said, it was an easy question to answer and comes in the form of three pieces of advice.
First and foremost, live your life four hours at a time. Do not worry about six hours from now. Do not worry about tomorrow. Live life in four hour time slots–nothing more.
Chances are high that your child is using a rapid acting insulin. They basically last four hours. Look at readings inside the four hour window. Look at food and activity in that four hour period. If you see a reading that is in range for that four hour period give yourself a high-five! You did fabulously! If you see something out of range during that four hours then begin to problem solve. What can you learn? Did you learn that your child is producing a small amount of insulin now and doesn’t need as much insulin for that food at the moment? Did you learn that not all slices of bread are the same number of carbohydrates? Did you learn that hockey practice before supper changes the amount of food and insulin your child needs?
Four hours. Its simple. Its manageable…and for an overloaded parental mind, really it is more than enough to handle.
My second piece of advice is to find a support system and use it! Let parents, partners, friends, and people from support groups (online and in real life) help! Share with them, unload on them, and again…use them. Some people will “get it” more than others and that is okay but find a way to lean on even those who may not get it but are willing to learn, listen or take over for even an hour. You deserve the break. You cannot be the very best external pancreas that you can be without a break and an outlet. Its okay to ask for help or even see a counselor. Many families with diabetes have to turn to someone along the way. Its okay to do this.
Finally, cry in the shower. Go ahead! Stand in that shower and let it all out. Let go of the big girl/boy pants, crumble and let that strong shell crack for just a little while. Allow yourself to feel the pain and frustration that comes from a diagnosis of diabetes for your child. Allow yourself to feel the anger and hurt. Allow yourself to grieve while the water washes away a bit of the pain so that you can be strong again once you step back into the real world.
You can do this. There will be bumps. There will be victories. The landscape of your life, and that of your child, has changed forever. This doesn’t mean that he/she will never achieve their dreams or live a long and full life. It means that your perspective will shift a little (or maybe a lot). You will find new friendships that will bring you through the worst of times and celebrate with you in the best of times. Life will be different but it can still be amazing…just four hours at a time.
As we drove down the street my son turned to me and said, “You knew that I had type 1 diabetes when I took a face cloth to my tongue, right?”
I had told him that he had wiped his tongue with a dirty sock. We knew something was wrong. I then recounted the rest of his type 1 diabetes diagnosis story.
He told me that he was glad he didn’t remember…but I will never forget.
It was March of 2000. 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 see the emergency doctor when he began to wipe the white spots off of his tongue with a dirty sock. He said it was nothing serious–an ear infection and white mouth. We were prescribed some antibiotics.
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.
“I think he has diabetes”
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” and “ketoacidosis but could be a chest infection.” It was no big deal. I had healthy children. He had a chest infection. Little babies do not get diabetes. I didn’t know what that keto…something or other even meant. He was fine, I rationalized. 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. Diabetes could not be ignored as a diagnosis. His breathing continued to be shallow and he continued to sleep. Terror 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 our boys and began the forty-five-minute drive to the hospital. Later, my son’s father would tell people that it was a blinding snowstorm 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 made it to the hospital
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 (about 22 pounds). 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 he 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 someone 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 was diagnosed with type 1 diabetes
He said that my son had type 1 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 different 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.