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Parenting.

Parenting is tough. When you are a parent of a child with Type 1 diabetes, there is the fine line you must not cross where you switch from parenting your child to parenting the diabetes.

Parenting is tough. Diabetes is tough. Put them together and sometimes you get a combustible combination that with the proper fuel can explode in your face.

Let me explain. Most days in our home we just truck along life every other family. Of course we have the added dimension of counting carbs, checking blood sugar, giving insulin, reviewing blood glucose logs, but all in all, we are a pretty regular family who does pretty regular things.  But then there are the moments in our days that define our relationship as parent/child/Type 1 diabetes.

When my son sits down to eat, I immediately check his sugar. Then before giving anyone their food, I weigh the carbs on my son’s plate. Immediately after I give him his food, I grab his pump remote and bolus (give insulin) for about 1/2 of the carbs on his plate. This is a decision that I have made for our family and it seems to work. Let me explain why I have chosen to do this and why I think it ensures that I am parenting my child and not the diabetes.

If my son starts to eat his meal, and then halfway through decides that he would prefer more meat (zero carbs=no insulin) and less of the carb on his plate, by only giving 1/2 of his insulin up front I am able to allow this to happen. As long as my son eats a good portion of his dinner and he is full, I am pleased.  I can remain parent of child, and not parent of diabetes.

On the other hand, if I were to give all of his insulin before the meal, for every carb on his plate, he would not be allowed to stop eating any portion of anything. He would have to finish every carb because if he doesn’t then he will go low, and probably seriously low because he gets insulin for and eats about 60 carbs per dinner.  So then I have a almost 6 year old full of insulin, not wanting to finish the carb portion of his dinner. This could be disastrous.

So I would have to try to get him to eat the carbs, and I would have to think of another way to cover the insulin that is already working in his body. I could offer milk, juice, skittles, bread, anything that has the equivalent amount of carbs that I already bolused for. I could even demand that he finish all the food on his plate, but that is not my parenting style. STOP. This is what I call parenting the diabetes.  Because my son would have received all the insulin up front, my main concern with this scenario would be to cover the insulin, not whether my son, who is a fantastic eater, was satiated. I would worry about the diabetes, not the boy.

Parenting the diabetes does not only present itself when eating. It rears it’s head with discipline too. When my son is acting out of character: rude, whiny, whatever, it is my first and foremost responsibility to find out his blood sugar. I have no choice in that matter. However, when the meter beeps with a number, I then have a choice to parent the child or the diabetes. If the number is low, treat, discuss behavior and move on. If the number is on target, deal with the behavior immediately. Delaying any response to the behavior because you had to stop time and check the sugar would be just parenting the diabetes. Same goes for if the number is high, treat accordingly, calm the situation and move on.

Some parents of children with Type 1 diabetes brush the inappropriate behavior off as a side effect of a high or low number. I choose not to do this. If my son displays inappropriate behavior because of high or low blood sugar, he is still removed from the situation until he is feeling himself again. I certainly don’t punish for behaviors related to blood sugar, but I also don’t let it continue. I don’t parent the diabetes and let him act anyway he wants and use his number as an excuse.

Now why I am writing about this tonight. Not to shout out other parent’s of children with Type 1 to say they are doing it wrong, but to say, this is HARD. This is a difficult battle that we deal with everyday. We have to remain true to our own parenting style without letting diabetes rule the roost. Dealing with the attitudes and behaviors associated with high or low blood sugar is like dealing with a toddler. You have to stay cool, calm and collected. Keep your wits, and handle the situation. It is not fun…it is parenting.

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Caregiver’s health.

When a caregiver of a child with Type 1 diabetes gets sick, the first and foremost thought is who will take care of the child with Type 1, the health of the caregiver follows a close behind.

For a few weeks now, I have been having heart palpitations. No big deal, but I wanted to get them checked out by a cardiologist. I made the appointment, and the earliest appointment was two weeks from the day I called. Again, no big deal. I was told once that I had Mitral Valve Prolapse and palpitations may be a side effect of the MVP.

Fast forward to the night before my scheduled cardiologist appointment. I was cooking dinner, nothing very exciting, I cook every night, and my left arm went numb. Now normally, I am not a worrier or a hypochondriac, but this scared me. I knew that I had been having the heart palpitations, so the numbness in the arm coupled with the palpitations really got me concerned.

But what really was disturbing me was the thought of who was going to help take care of my son if I went to the ER. ER waits are sometimes very long and no one had ever stayed with my son longer than a few hours without constant contact with me on the phone.  Now even more concerning to me was what if the palpitations and the numb are were something serious, and I was going to die, who was going to take care of my son if I died.

I have another child and the same feelings did not go through me for her. I know if I die, she will be ok. Yes, it would be awful, devastating, horrible and all the other adjectives that you can think of, but it would not be a  matter of life and death. If I were to die unexpectedly many people would know what to do with my daughter: feed her, love her, hug her, give her strawberry milk, but only 1 or 2 people would know what to do for my son: feed him, count his carbs, love him, check his sugar, hug him, adjust his insulin needs, and give him hot cocoa. The first few hours after my death, when my family would be mourning, would be the most critical time for my son’s health as well. It truly would be a matter of life and death.

Because caring for Type 1 diabetes is such a hands-on 24 hours a day responsibility, it is almost impossible to teach someone everything they need to do if I were not available, not available as in dead. A support system needs to be put in place before my early demise to ensure my son’s health. My parents know to call our CDE, a friend whose son also has Type 1, and a visiting nurses association to come and stay with my son for a few days.

So in the end, it was not the fear of the heart palpitations and numb arm that brought me to the hospital, it was the fear of dying. Not the rational, healthy, respectful fear of dying that most of us have, but the irrational fear of dying that my son would not be immediately well cared for if I died. No one in this world wants to die when their children are young, and no one wants to die if they think it may be at the expense of the health and well being of another person, namely their child.

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New normal.

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.