No pictures today. Instead, here is a list of things I want you to know about diabetes.

  1. I want you to know that there is no “controlling” diabetes. There is diabetes management, there is experience, and there is a “be ready for anything at anytime”, but there is no control. We do our best to “manage” our daughter’s diabetes. But there are way to many variables that affect her blood sugar to EVER use the word control. And now that we are heading into puberty? Hormones and growth spurts and boys, oh my!
  2. I want you to know that as much as we like to talk about how normal we try to make our daughter’s life, with diabetes there is no normal. My daughter has never been to a sleepover (not even at grandma’s). When there is a school field trip, one of us parents attends to take care of her food needs and insulin requirements. Everywhere we go, (even to the corner market) we carry a glucagon kit that has a needle straight out of this scene from Pulp Fiction. Even that trip to the market requires a backpack full of stuff. When her blood sugar is high, (which is often after meals) focus and attention are strained, making tests, studying, and learning difficult. My daughter can drink a juicebox and eat crackers in bed. Without waking up. We worry every night that she will go to bed and not wake up.
  3. I want you to know that we live in a constant state of flux. Things change rapidly. One minute you are singing Christmas carols and decorating the tree, and the next minute you are in the ER and calling in to work sick for the next 4 days due to your child getting the flu. Nothing is rock solid. Plans change. We will occasionally cancel on you. Sorry. And all though we live moment to moment with diabetes, we also need to plan everything. There is rarely ever a last minute “hey, let’s go to the Jones’ for dinner”. That kind of thing requires prep. Requires advanced notice. Requires knowledge of carb counts. Requires that backpack kit full of stuff. And that needle.
  4. I want you to know that you really do need to know that new math. Carb counting and insulin ratios and looking at a pizza cut into 8 slices that has carb counts for 3 servings and some pasta that is measured dry and some that is measured cooked and now you need to add the sauce and the chicken nuggets at McDonalds have this many carbs but what the hell is the count on the BBQ sauce and knowing that regardless of what the carb count of a banana is it needs to be tripled and that Mexican food is going to need a 5 hour combo bolus plus a 20% basal rate increase and then there is sick day and and and AGGGHHHHHH!!!!!
  5. I want you to know that regardless of how well planned out and prepared we think things like her school day are, stuff still pops up. We have emergency kits in every class she attends and the office. But what happens when she is at PE and the school goes into lock down and she is shuffled into the nearest random class? Yeah, that happened. There are a tremendous amount of type 1 children that are home schooled. There are SO many variables to a type 1’s day that it sometimes seems like the only viable option. When we finally let go of our daughter’s hand at school and send her in, we are no longer there to see if she is going to trade her apple for a Snickers bar. Or to see if right at PE they are going to run loops around the soccer field or just do square dancing, or if we know that tomorrow is a soccer day and make an insulin adjustment, and instead it rains and they wind up watching a movie, and again AGGGGHHHHHHH!!!!!
  6. I want you to know that an organ inside my daughter’s body has died. Stopped working. Kaput. And we/she had nothing to do with it. My daughter has never had a Coke or a Twinkie. It has nothing to do with the way she eats or what we have been feeding her. No amount of raw foods or cinnamon or exercise is going to fix her pancreas. And I am well aware of the long term effects of high blood sugar. Telling me about how your grandma went blind, or your uncle lost his foot, while my daughter is standing there? Well that is just cruel.
  7. I want you to know that while I am in the grocery store or restaurant with my family and our service dog, I get very upset when you say “how cool is it to bring your dog with you” or “I wish I could bring my dog” or my favorite, “you’re so lucky you get to bring your dog”. Let me tell you what I am thinking. It goes like this, “I wish that my daughter didn’t have type 1 diabetes, and our dog could be home being a pet instead of here being a life saving device, and that as far as the dog is concerned, this has got to be a stressful, unnatural, unnerving experience that he too would rather not have to do” and if you happened to be the person that said “you’re so lucky” I apologize greatly for the lambasting I gave you, but really, you had it coming.
  8. I want you to know that for some parents, putting their children to bed is a wonderful experience. But for the parent of a type 1, it is the most stressful, worry filled part of our day. “Dead in Bed” is a real fear. And as a parent, having your children fall asleep in the car after a busy day at the park or the zoo can be a wonderful reminder of a great day. For me? I get worried. I want to poke her and keep her up. I want to pull over and test her every 15 minutes. When she just wants to lay her head down and rest, she is barraged with questions like: “are you feeling okay? Do you feel low? Does she have a fever?”. Even when resting there is no rest from diabetes.
  9. I want you to know that when you send your child to school with a cold, you could be sending my daughter to the hospital.
  10. I want you to know that insulin is not a cure. It is a life saving device. So are apple juice boxes and Smartees. We are still hoping for a cure.
  11. I want you to know that EVERYTHING affects blood sugar. It’s not just food. It’s heat, cold, tests, exercise, hormones, growing, getting in trouble, the list is long. You can see more HERE.
  12. Type 1 diabetes is an invisible disease. When you see my daughter, you would never know she had a life threatening disease. She runs and jumps and eats ice cream just like everyone else. But when you look a little closer, you will see the pump that is connected to her. You will see the tell tale black spots on the fingers. The hardened tips. You will notice the BS checks. The blood stains on the sheets. The backpack and emergency kit. The Gatorade. There is a lot to see if you just pay attention. If more people knew just how serious this disease was, maybe we could raise more awareness, more money for testing, fund more research. But our children are happy. Beautiful. They look healthy. And you couldn’t pick them out in a room full of non-diabetics.
  13. I want you to know that we are tired. We walk around in a constant state of exhaustion. 10pm checks and midnight checks, and 2am checks and “oh my gosh, she’s low, so I need to correct and recheck in 20 minutes, and crap she’s still low so let me give her another juice box” and before you know it the day is starting and kids need to get to school and you need to get to work, and there are alerting dogs at 1am and now your worried about the birthday party they are going to on Sunday and how are we going to handle the carb counts on Thanksgiving at Grandma’s and we need to get to the Endo’s and she said she was tired and she has a headache and how many carbs are in that tylenol and please don’t touch the dog and her BG is not coming up so I’ll give her another juice box but I know she’s going to spike at midnight and why doesn’t this restaurant have carb counts and well, let’s just say that the worry and planning and effort never ends, this disease never rests, and the sleep is non existent. We are literally zombies. Thank you Brenda for the reminder.
  14. I want you to know that my daughter is my hero. I look up to that little girl. If you asked her to describe herself, she might never mention that she’s a diabetic. She just doesn’t see herself that way. As a matter of fact, she might not ever mention it until she talks about her dog and what he does. I love that about her.

There is more. So much more I want you to know. But now, I want you to ask. Ask me anything you want to know. Or if you are a T1 or parent of, what do YOU want people to know?

Oh, and 1 more thing I really want you to know. Click this link, it could save someone’s life: The symptoms of Type 1 Diabetes

Team Blackdogsrule

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  1. I want people to know how horribly isolating this disease is. Friends fade away because they don’t understand your fatigue and cancelling AGAIN. People fade away as you miss their dinner parties because you don’t have anyone who is willing to care for your t1. You lose your hobbies because you can’t get a sitter. You can’t go to the gym and leave your child in the day care. You can’t go on a cruise and drop your kid at the kid’s club. Your child becomes your one any only constant companion. Your friends don’t want to hear you talk about t1 anymore because they think you should be over it by now. Even family members who have been thru diabetic training classes are afraid to care for your child. My child will never spend a week or two with grandma and grandpa in the summer like I did growing up. He will likely never even spend the night at grandma and grandpas. I want people to know that caregiver depression is real, and parents of t1’s often need counseling more than the kids do. I want people to know that the first year after his diagnosis was the worst year of my life. I want people to know that I contemplated suicide because I was sure I was failing miserably in caring for him, and surely someone else could do a better job. I want people to know how so very alone I feel all of the time.