Author: Leslie

When there is a diagnosis of Type 1 diabetes a new ‘normal’ must be created. It is the glimpses of the old ‘normal’ that make you realize how different your life has become. It’s heartbreaking.

Let me start by saying, our new normal is pretty darn good, if I do say so myself. I think we have done an excellent job making diabetes part of our life and not the other way around. We do not let Type 1 control us, yes, it is an unwanted guest that never seems to leave us alone, but ultimately it is in our world, we are not in it’s world. However, there is no denying that life was different before Type 1 diabetes knocked at our door, and there’s no better way to see how different when you are eating crackers with your other child, the one without Type 1.

My four year old daughter, my baby without Type 1, was sitting on my lap the other day as I ate Triscuits and cheese. Without asking she took one. Totally ok, I know how to share, but that can never happen again with my son, the baby with Type 1. After having Type 1 for almost 2 years, he knows he has to ask for every single morsel of food that goes into his body. It’s not like he asks for permission per se, it’s more like he is asking as a way to alert me that he is going to eat so I know to get his meter, check his sugar, count the carbs for the snack, and then give him insulin through his pump all before he can even try a bite of his chosen snack.

Sure there are free snacks that he eats without being tested, without it being counted or bolused for, but being he is only almost 6 he is not quite sure of free snacks yet. So to be safe, he lets me know, or asks, before he takes a bite of food or a sip of drink, sometimes up to 10 times a day.

While my daughter and I shared my cheese and crackers I was saddened that my son cannot have such carefree experiences anymore. He can’t just walk past a table and pick up one of his mom’s crackers that she is eating just because it looked good. He has to decide if he really wants to bother eating it. He is never, ever denied a snack, but I do wonder if there are times when he feels like just taking one grape out of the fridge like many people do.

I am saddened that before every meal my son asks, “Can I start eating?” and at the end of every meal he asks, “Can I be done?” I always try to answer as nonchalantly as possible, “Sure you can start eating,” or, “Are you full, do you want to be done?” But in reality, I am always thinking something else like, “Sure you can start eating…I already tested your sugar,” and “Are you full, do you want to be done…I didn’t bolus you for your whole meal so you don’t have to eat it all if you don’t want.”

I’ll take the new ‘normal’ because well honestly, I have no choice. And I am ok with that. I have my boy (and my girl) and that’s all that matters to me. It’s the glimpses of the old ‘normal’ that make me realize how much Type 1 diabetes has seeped it’s way into all aspects of our world, in ways you can only imagine.

Parents of children with Type 1 diabetes have no choice but to be involved with our children’s school. Not that we wouldn’t be involved anyway, but it does not make us the ‘best mommy’ it is a matter of our child’s life and death.

My son is starting a new school next year. While that means new books, new bus, new hallways, and new classroom, it also means a new nurse to train in care of Type 1 diabetes. It also means teaching a new teacher, Principal, bus driver and everyone else that comes in contact with my son the symptoms of highs and lows, treatment plan for different numbers, and emergency glucagon treatment.

It also means teaching EVERYONE in the school, parents, children, custodians, and anyone else that may come near my child that he is not a diabetic, he is a little 1st grader with Type 1 diabetes. While this might not make any sense to you, it makes perfect sense to me. Think about this. Pretend your child cannot do math (easy to pretend as a lot of kids can’t do math). Imagine every time you went to talk to the teacher she called your child the ‘math deficient kid.’ Or every time you were in the lunch room they would add up his total cost of the food for your child because he’s the ‘MATH DEFICIENT KID’ over here in line.

My son is a boy with Type 1 diabetes, he is not a diabetic, and he should not be told, “You are diabetic, you cannot eat that.” He can eat whatever he wants as long as he covers carbs with insulin. Just like the child who can’t do math, he should not be told, “You can add up your own lunch total, you can’t do math, you’re math deficient.” Sounds silly, I know, but I think you get my point.

That is why I am involved in my son’s school. It is not because I am such a ‘good mommy’ as people like to call me. I am just a mom, who would claw through ice to help my son in anyway I can. I want him to be safe in school from a health perspective. I need everyone to know how to recognize high sugar behavior, low sugar behavior and how to treat both. I need him to be safe all day when he is not with me.

I also need to protect his mental health. I need to ensure that people treat him just like every other kid. No withholding snacks because they don’t understand Type 1 diabetes. Protection of mental health is important for all people, especially a 5 year old boy.

I am not a ‘good mommy.’ I am a mom who has a son for whom I would walk over hot coals, diabetes or not.

People with Type 1 diabetes make changes to their insulin amounts as their needs change. You only get one chance a day to make a specific change and then you wait a full 24 hours to get to that ‘time’ again to see if the change worked. You can hear the tick tock of the clock as you wait.

Many people with Type 1 diabetes adjust their insulin needs as they see a pattern of higher or lower numbers over a course of a few days. For instance, if a person with Type 1 diabetes checks their sugar before lunch they will take note of the number. They hope for a number in range, which means their insulin dosage is matching their insulin needs. If that number appears too high for two or three days, the person will look to make an insulin dosage change to something before that meal.

They may need to change their basal rate (background insulin), their bolus ratio (insulin they get for each carb), or their correction factor (insulin they get for a high number). That’s where the change and wait pattern comes in. The waiting pattern can look something like this after the person has decided to make a change:

Day One: Change the breakfast ratio from 1 unit for every 20 carbs (1:20) to 1:18, check sugar before lunch, still to high.
Day Two: Change the breakfast ratio from 1:18 to 1:16, check sugar before lunch, still high, but very close to range.
Day Three: Change the breakfast ratio from 1:16 to 1:14, check sugar before lunch, too low number, well below range.
Day Four: Change breakfast ratio back to 1:16, increase the correction factor (ISF), check before lunch, high again, but close.
Day Five: Keep breakfast ratio at 1:16, return ISF back to original, increase basal 2 hours before lunch, check before lunch, high but in range.
Day Six: Keep the breakfast ratio at 1:16, maintain ISF, increase basal 2 hours before lunch, check before lunch, PERFECT!

SIX DAYS to get to a perfect number before lunch. That’s six separate times that you have to wait 24 hours between each change to test at the exact same time the following day to see how the change worked out. This is a very stressful waiting period especially when the numbers are really out of range.

My son was in range for 5 months after breakfast. He calls from school every day to tell me what his number is 2 hours after his breakfast bolus. For 5 months we were on a roll. Numbers were in range, my son was feeling great. For the last 2 weeks, his 2 hour number has been high. I have been making changes every single day for 2 weeks. Some of the changes did NOTHING, but I can’t do anything about it until the following day. Finally today I saw a reprieve and his numbers are ever so slightly coming down. We are no where near in range at this time of day, but I see a light at the end of this tunnel. The hard part is I cannot get too overzealous and make an extraordinary change, I must go step by step to avoid a serious low from too much insulin.

This is one of the hardest parts of being an external pancreas for my son. I have no idea what change is going to work. I have to methodically tick off change after change, and hopefully by using my knowledge I will eventually hit upon the change that works.

It is easy to see why Type 1 diabetes can become all consuming, we have no choice. We are not allowed to forget about it for even a minute, especially when we are working on changes. Time is too precious when making changes and forgetting about it won’t help anyone.