All opinions expressed below are the result of years of sleep deprivation and worry caused by Type 1 diabetes
Category: Children with Type 1 Diabetes
There are very specific challenges that accompany the diagnosis of a child with type 1 diabetes. We examine the emotional toll on parents. We look at the technological options available to children with type 1 diabetes. It is also important to consider their protection and health when at school.
It is almost that time of year again. Time for Easter treats, Easter hunts, the Easter bunny and memorable time with family. Our house was never really big on a lot of chocolate at Easter. There was the occasional trail of jelly beans for them to follow but for the most part, my children loved to search for hidden treats like small cars, new colouring books and a new movie to watch.
Parents of children with diabetes know that it is possible to cover treats with insulin. If you are multiple daily injections or an insulin pump, you can simply inject or bolus insulin to cover the treat based on your carb to insulin ratio. Despite that fact, many parents of children with diabetes or not, don’t want to give their children a lot of sugar and are looking for alternatives. For those who are trying to control the amount of “junk food” that their children eat, it can be a challenge to come up with candy-free alternatives.
Here is a quick list of 35 items we came up with to fill
Easter baskets that don’t include candy.
Magic grow toys
Magic grow capsules
If you are still struggling to fill your child’s basket? Check out these great ideas…
Baby O and I has fun suggestions including PlayDough packs and rubber boots! Read all of their suggestions here.
Mommy Takes 5 shows you everything that you need for a toddlers basket from the basket itself to great things to put in it right here!
It will happen and it will be okay. That’s what I would tell myself if I could talk to the diabetes parent that I was 15 years ago.
You see, once upon a time I could tell you what my son’s bg level was at 3am. I could tell you what his reading was before breakfast. I knew if he had run high or low during school. I would be able to give you his pre and post supper glucose readings. I knew it all.
I knew when his last site change was. I knew what his last A1c was. Years ago, I could tell you when his glucagon kit was going to expire and how many carbs he ate with his last meal.
Today, I can tell you that my son does test his bg levels. His last site change was just the other night. I know this because he asked for my help. I know that he sees his diabetes doctor again in April. I know that he has some insulin in the fridge.
I have no idea what his last A1c was. His current basal rates are a mystery to me. It’s a real challenge for me to use his insulin pump.
Years ago, I would never believe that I wouldn’t know these things. I swore that I would always test my son at night as long as he was in my house. I would be hands on in my son’s diabetes care forever. I was certain. I was wrong.
If you are like I was, you are having a stroke reading this. You are probably thinking…Not me! I will know everything regarding their diabetes care always! I thought so too.
For the bulk of his childhood, I knew every carbohydrate that entered my son’s mouth. I wrote down every exercise that he did and how it impacted his readings. I micromanaged my son’s type one diabetes like nobody’s business. His care would take me over 40 hours per week. It literally was a full-time job. Keeping my son alive and healthy was one of my top priorities.
The health of my children is still very important to me but this strange thing has happened–they have become adults. As an adult, my son has asked that I don’t test him at night. Sadly he wakes up a lot during the night now and tests himself. He doesn’t see the sense in bothering me as well.
Because my son is an adult, he comes and goes when he pleases. He treats his lows at work. He programs his pump while he is at school. My son is completely in charge of his diabetes care.
It was terrifying at first I will admit. I had a need to know. He had just as strong of a need for me not to know. He would be vague with his answers about bg readings if he answered at all. It didn’t matter if I was mad or upset. It was his condition to deal with and he would quietly show me that he could handle it….and when he couldn’t he would ask me for help.
As I have watched him handle his diabetes care, I have been amazed. We still occasionally share carb count guesses. I will look up the carb counts in certain food for him. I will suggest a temporary basal when he is working long hours. He will tell me what he has already done.
My role in diabetes care is now on the periphery. It shocks me that I have managed it but I have. One day you will step aside too. It will be hard. How far you step will be between you and your child but eventually you will no longer know how to work their insulin pump either. One day you won’t know their A1c but they will still call you when the going is rough–for you or for them. For me, that remains a huge comfort.
I have gone from the most hands on parent on the planet to an average mom. Diabetes no longer is in my every thought. I now only think of it every few hours. The most amazing thing is that I am somewhat okay with it all. Don’t get me wrong, the control freak lives on and would love to know more but my son is an adult. As a young adult, he has taken ownership of his diabetes and Mom is only allowed glimpses when he deems it okay.
Day 5 and today’s prompt..Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions?
This may seem weird, but I would not trade for any other chronic disease. Each one has its challenges and struggles. I think of people I know with asthma–they have to carry inhalers at all times and never know when an attack could strike. They do not always occur during the day. If an attack happened at night, would someone be there to help?
There is epilepsy. My aunt and uncle both live with this disease. My uncle has been seizure free for enough years now to be able to drive and live a “normal” life but the fear of never knowing when one could hit? The embarrassment they sometimes feel afterwards? No thank you.
There is celiac. That would be easy right? Wrong. I have considered trying a gluten free diet and then I looked at all of the “stuff” that you have to stay away from. Its bad enough reading carb counts, watching fat and dealing with fiber and protein but looking for hidden ingredients in food? Add to that the high cost of those foods without gluten No, I think diabetes will do. Granted with celiacs, you don’t have to carry around “stuff” but you have to be on your toes with every ingredient in every piece of food you think about eating.
Diabetes sucks. I hate dealing with it. I would love a cure but as they say “better the devil you know”! Has this devil given me a new respect for other chronic diseases? Absolutely! Before life with diabetes, I know I took things for granted. Now when I sit down to a meal with someone and we don’t have to count the carbs or deal with bg levels, I almost feel like something is wrong! Its not normal to do that–not to test or calculate!
I better understand parents who struggle for school supports for their children. I “get” adults who need time off work for health related issues. I hurt for those who have to struggle to get medications and medical devices paid for by insurance or public health care systems. I value my health in a new light. I appreciate each day in a way that I did not before diabetes. We are all (usually) happy to be alive but knowing how fickle diabetes can be, brings that happiness and gratitude to a new level.
Do I attribute this empathy with the DOC? Honestly, probably not. It comes from life experience–watching my son nearly die. The diabetes online community has brought people into my life who have situations that have made me work harder as an advocate. It has brought stories that keep me aware of how deadly this disease is. Most importantly, it has brought me friends and people who also have learned greater empathy and strength because of this beast.
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.