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Changes.

Watching your child suffer through the ups and downs of Type 1 diabetes is like watching them get picked on in the corner of the school yard…and there’s nothing you can do about it.

I don’t usually complain about Type 1 diabetes, heck, it’s not my disease, it’s my son’s, but I am really hating Type 1 these last 2 days. For some reason, it could be anything, my son’s insulin needs are changing. His body is calling for more insulin. I know this because almost every number he has had in the last 36 hours has been above range.  But because the nature of this disease, I can only make one or two changes at a time, he has to suffer through these highs until we find the right balance again.

I say suffer through them because in the last 36 hours my son has complained of tiredness and a headache, has been really really grumpy and super mean to people around him. He is not normally like this, it is the high numbers that is making his little body feel awful. I can see when I do a correction to get him down, his physical appearance changes within an hour, as soon as the insulin starts bringing the number down. His face lightens, he smiles again, he is nice to his sister again, he wants to play and have fun. The insulin fixes the number and then brings him back to himself.

It will take several days for me to find the balance again. I can make the changes, but I can’t make them too quickly or drastically because then we risk the other end of the spectrum, lows which are also uncomfortable for him, never mind dangerous.

I made changes to his breakfast insulin, so school really has to be on their game tomorrow to watch for lows in the classroom and the hallways. I made changes to his night time insulin, so I have to pull a semi-allnighter to ensure he doesn’t drop too low with the changes. All of this is fine, except while all this is taking place, my son doesn’t feel right…and that’s just not fair!!!

If I could wish for anything it would be for a cure…now. And if a cure were not an option as a wish, I would wish that someone would give me his Type 1 diabetes instead. He is just a little boy. He shouldn’t have to deal with a disease that hurts him in so many ways. He is just a almost 6 year old boy…and he needs a friggin break.

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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.