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Easy?

The phrase, “you make it all look so easy,” in reference to how we handle Type 1 diabetes is always met with mixed emotions.
While on the outside, “you make it all look so easy,” is a definite compliment, it does stir up some mixed emotions inside of me. I am proud that I have done what I have claimed to do since diagnosis day almost 2 years ago. I incorporated diabetes into OUR life as opposed to rearranging our lives around diabetes. Diabetes just became something that we dealt with. It didn’t determine if we went to the beach for the day, it just came along. Diabetes didn’t decide that we couldn’t go on playdates anymore, diabetes was just going to have to tag along. We did this, my son and me, and I am proud of both of us.

On the flip side of ‘you make it all look so easy,” I feel like my son is not getting the credit he deserves for living with this disease 24 hours a day every day of his life since diagnosis day. He does get his finger checked 10 times a day. He does have to stop playing in the pool even though he feels fine because sometimes lows can sneak up on you faster than you can say, “Mommy, I’m shaky.” He does have to wait to eat every single time he’s hungry to see if I need to check his sugar or to make sure all the carbs are counted already.

My son deserves credit for withstanding numerous blood glucose checks while he is sleeping, and then sometimes eating full snacks at 3:00am to raise his blood sugar, all with his eyes closed.

My son deserves credit for all the things he does to live with Type 1 diabetes. He withstands numerous questions about his pump, his meter, his candy that he carries for lows. While it’s nice that people are interested, some are not really interested, just intrusive, yet my son answers them all equally.

My daughter deserves credit for living with her brother’s chronic illness too. She has learned at a very young age that when her brother says he is low that mama has to run. She has learned that even during our quiet times together mama may be needed to go tend to something diabetes-related for the safety of her brother.

My parents, my son’s grandparents, deserve credit for learning all over again how to care for their grandson. They chose to go to Caregivers Camp to learn about how to handle diabetes during outings and sleepovers at Nannie and Papa’s house. My brother, my son’s Uncle, deserves the same credit. He has given up a few nights of his life to sleep over with my son at Nannie and Papa’s house to ensure there is one more adult there that can help if any issues arise.

My husband, my son’s daddy, deserves credit for giving up time with me. There are many times when we are out and about remembering why we fell in love over 17 years ago, when our ‘date’ is cut short because my son needs something that only I can provide.

I don’t say any of this for people to feel pity on us. That is why when someone says, “You make it all look so easy,” I smile and say thank you. No one needs to know the behind the scenes when it is not all so easy. We chose everyday to live our life exactly how we would live it if diabetes never reared it’s ugly head. We chose to ‘make it all look so easy’ so that we can go on living our lives as before. But I will tell you, it is nice when someone who says that also adds, “But I do know how hard you work to make it all look so easy.”

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Summer.

Summer. School’s out and summer’s here. Are you thinking what I’m thinking? Sleeping late, summer nights, ice cream, swimming, and basal changes. Wait. What?

As the carefree days of summer approach us there are many things that undeniably shout ‘Summer!’ The sound of the ice cream truck, the smell of the beach, picnics, jumping off the diving board, and for a kid living with Type 1 diabetes it also means basal rate testing and basal rate changes.

Basal insulin is the background insulin that is coursing through the body 24 hours a day. Basal insulin is either given through a shot once every 24 hours or through multiple rates throughout the day via an insulin pump. My son wears an insulin pump, and he currently has 8 different basal rates set. His total amount of basal insulin over a 24 hour period is 9.25 units. That means over a 24 hour period his body needs 9.25 units to live. Some hours during the day he needs more insulin, like at night, and some hours during the day he needs less insulin, like in the morning, hence the 8 different rates. His body needs more and less insulin all different times of day.

With summer here, and no school schedule to follow my son’s basal needs will change. You may ask yourself, how is this possible? What does summer and school have to do with insulin needs? Unfortunately the answer is everything.

During the school year my son goes to sleep at 7:30pm. His body requires much more insulin from the moment he falls asleep until about midnight, when his insulin needs slowly taper off until about 5:00am. I am not a doctor (I just play one on TV), but it just makes sense then that in the summer when his bedtime moves to 9:00 there would be a difference in his insulin needs. The difference between 7:30 and 9:00pm is an hour and a half that he may (or may not) need less insulin. The only way to tell is to watch his numbers at that particular time of day and test more often for a few days. If he drops too low during or immediately after that time frame then I know some changes in insulin output need to take place, he may need less insulin.

On the opposite end of the night, the morning, there are sure to be some changes there too. On a school day my son has to wake up and eat breakfast almost immediately. Now that summer is here, he can sleep in and eat breakfast when he wants. Two things, sleeping late and eating off schedule, that may or may not change his insulin needs at that time.

Confused? Imagine how I feel.

While I am ecstatic that school is out, I am apprehensive with what the next few weeks are going to bring with my son’s numbers. I have no idea how his school basal rates are going to fit into his summer needs. I have to be more diligent, if that’s even possible, with testing his sugar. While I already test him over 10 times a day, I may have to cluster some of the testing during certain times of the day to determine specific insulin needs for the summer months.

It will all get done, hopefully quickly and smoothly, so that my son can enjoy summer just as any other child. I want him to have memories of ice cream trucks, swimming and just being a kid. Testing blood glucose levels, treating lows, and correcting highs should not overshadow all the good things we have going on.

Summer is one of my favorite time of year…I just want the same for my son.

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Tell me.

Tell me, a mom of a boy with Type 1 diabetes, what I am supposed to say when he tells me, “Diabetes stinks!” All I can do is agree, and hide my broken heart.

The other day we were talking about camp and filling in my son’s camp journal. I was helping him because he is too young to do it himself. We got the the question that asks, “How do you feel about having diabetes?” The responses were: It’s ok, it’s not so bad, or it stinks! My son replied, “It stinks!” And then he continued on and said, “Having diabetes stinks because of the site changes, it stinks because I have to stand there while you bolus me, and it stinks because you have to give me insulin for everything I eat.” He continued, “There is nothing fun about having diabetes.”

I was speechless. I told my son that I totally agreed with all of those things. I told him that diabetes stinks and I wish no child ever had to deal with it. But I know these answers are not enough. I have no idea what it feels like to have to count ever morsel of food I put in my mouth. When I am hungry I eat. When my son is hungry, he has to check his sugar, then count carbs, then give himself insulin, then he can start eating. Of course, I do all this for him, but it is him that all this stuff is happening to.

No matter how hard I try, I will never fully grasp what a daunting task this must be for him. At the tender age of 6, my son knows that if he does not have insulin with every meal he will get very sick and could possibly die. What other 6 year old has to grasp that cause and effect? He takes insulin because he wants to stay healthy. That is a huge responsibility. He is only 6.

Everybody can skip some things. You can go to bed without brushing your teeth one night. Another night you can go to bed without taking a bath. Maybe even another night you can skip dinner and just have dessert instead. My son can skip all of these things too. But, he already knows, he cannot ever skip site change day or his numbers will skyrocket making him feel awful. He also knows he cannot skip getting his insulin after every meal no matter how badly he just wants to get up from the table and run and play. He knows these things already. He may want to fight it, and he may say it stinks, because that’s all he really can do.

My little 6 year old son is my hero. Anyone who can get up everyday with the biggest smile on his face ready to conquer the world full well knowing that stinky diabetes is still there is a true hero. Bolusing won’t go away, carb counting won’t go away, diabetes won’t go away, but fortunately neither does my son’s strength. He beats diabetes everyday, no matter how stinky he thinks it is.