It seems strange how one day in time can change everything about your life. September 4, 2014 was such a day, when we received the news that you have Type 1 diabetes. Mom and I already suspected the diagnosis due to your constant thirst, hunger, and urination.
You didn’t do anything to cause this, and neither did we. I hate that diabetes is part of your life and I hate that we have to tell you that you can’t eat something before we check your blood sugar and count the carbohydrates. We hate having to give you shots every day. It’s not fair to you.
I feel like you can’t be a normal 5 year old because when you want to do something there is always that delay. We will always look out for you, but I hate that we have to watch you like a hawk. I hate that you have to wear a medical alert bracelet. I hate not knowing how you are going to react to the insulin. I hate that there isn’t a clear, cut answer to how much you need. Every time you have a low, I feel like I am doing wrong by you. I hate the extreme fluctuations in your blood sugar. I hate that we have to wake you in the middle of the night to give you sugar. I hate seeing how this affects you. I hate diabetes.
The most frustrating thing about this is that when I go to work, my job as a firefighter/paramedic is to fix people’s problems. I get paid to do that, and sometimes, I even get thanked for it. I should be able to fix you and it absolutely kills me that I can’t. I should be able to give you the right answers. I hate knowing that sometimes when I think I am right, I couldn’t be more wrong. I hate the feeling of using you as a science experiment because I constantly have to juggle your numbers.
If I could trade places with you, I would. I hate that this is not an option. Though I am grateful for the medical devices that we have to help manage this, I hate that you even need them.
Diabetes is so new, and the pain of it coming into our lives is still fresh. The sleepless nights are the only thing that’s consistent. I hate the feeling of running on fumes. If I don’t stay healthy, I can’t make sure you stay healthy. I am trying to put things in place to make sure that you do.
I don’t know if your service dog Jellybean is more for me or for you. I do know that he will provide your mother and me some peace of mind, knowing that you will have a buddy looking out for you when we are not with you.
It is my job to provide every possible thing for you to keep you safe, no matter the cost, and even if some people think it’s overkill. I am your dad. I don’t like it when my decisions are questioned by those who do not live with diabetes. They don’t know, they just don’t know.
I don’t like the feeling of grabbing at straws. I hate the unknown variables. I am frustrated with the quality of care in your school district. I shouldn’t have to jump through hoops to make sure that your needs are met. I shouldn’t have to hound the school about getting competent nurses there in a timely fashion. I feel that a better school district, or a private school would have had everything in place as soon as we told them that you have diabetes. I feel that no one is advocating for you. I hate wondering if people are going to think that you are an inconvenience because of diabetes. I hate that I can’t afford to send you to the school I want you to go to, where you would be much better off. You deserve to go there, and you should go there.
I am mad that I couldn’t sell our house to get you into a better public school district. I am mad that we have to play the school lottery game. I am frustrated that we will have to play again when you move to your next school, and when your brother and sister enter kindergarten. I hope we can find a better solution than what we have now.
I hate not knowing what to do. I hate not having the correct answer, because there isn’t one. I hate that you have diabetes. You did nothing wrong. No kid should have to deal with this. I know that I am doing all I can, but I still feel that it’s not enough. I don’t know what else to do, except take it day by day. I know I will feel better once we have this managed better. I just hope that happens sooner than later.
When I have told people about your diagnosis, some have said that it could have been worse. Yes, this is true, but I feel that it is an inappropriate response. This is bad enough. I know sometimes people don’t know how to react, and feel that they need to say something, anything, even if it’s the wrong thing. Perhaps if they found out that their kid had diabetes, and the huge change that it brings, along with the day in and day out worries that go along with it, perhaps their response would be different. Like I said before, unless you live with diabetes, you don’t know, you just don’t know, you have no clue.
I am trying my best to put up a strong front, because your only worry should be about being a kid. The truth is, this has beaten me down more than I thought anything ever could. I hate that, too. I hate this feeling of weakness. I hate feeling mad all the time, because I am not a mad person.
I am not a type A person. I don’t even know if I know how to be that type. I’m afraid that in having to be that way, I’m going to unleash a hurricane of rage if I feel that your needs are not being met according to my expectations. Yes, I have extremely high expectations for when you are not under our care, and why shouldn’t I? You are my son, and anything less than the best is unacceptable. The problem is, my level of expectation and my belief and trust in the school system don’t match. As of now, they have to “wow me,” and prove me wrong, and so far, there has not been the “wow factor,” which makes me more frustrated and angry. I am a fair and normally patient person, however, I am not so patient now. I need things to happen yesterday. Tomorrow, or next week doesn’t cut it. I feel like we’re already behind the curve. I feel like no one cares.
I hate worrying about how other kids are going to treat you, especially as you get older. I hope that no one ever treats you as “diseased,” and decides not to be your friend. I hate knowing how negatively that could affect you, and I hate that I can’t predict, or change how people will respond to you. It’s not fair to you. None of this is fair. You are not Mason the diabetic, but Mason who happens to have diabetes. This does not define who you are. It’s just something you have. There is no shame in this. Lots of kids have diabetes, and they own it. You can, too. You can be a superhero. You are already one to me. You can be hockey player, a soccer star, or whatever else you want. Diabetes will not beat you. I won’t allow that, not on my watch.
Your diagnosis has knocked me down, but I’m getting up. I’ve already begun to fight back, and I hit hard. I know that as you understand this more, you will too.
I wish I had a better way of explaining what is going on, and why it is so important to get a handle on this now. Because of our medical knowledge with mom being a registered nurse, and my work as a firefighter/paramedic, we know too much. We’ve seen it, and nothing good comes out of poor management.
I don’t know what else to say at this point. I wish I could snap my fingers and make this all go away. I hope that within your lifetime, there will be a cure, and you will be able to say to people I used to have diabetes.
I love you.
“Mason” is your typical, sweet 5 year old boy. He loves superheroes, his two younger siblings, and sports. He is a huge ice hockey fan, and would love to play for the Los Angeles Kings. He graduated preschool in June of 2014, and began Kindergarten a few months later. It was only three weeks into the new school year (September 4, 2014) when he was diagnosed with T1D. His parents have a strong background in medical knowledge, as his mom is a registered nurse specializing in pediatrics, and his dad is a firefighter/paramedic.
Mason has been using an insulin pump since October 15, 2014. He also has a continuous glucose monitoring system, and his parents set up a way they can remotely monitor him. Mason’s parents keep reminding him that he can be anything, and do anything he wants. There are a lot of people with diabetes who live normal, successful lives. He may have diabetes, but diabetes does not have him.