Being Emotionally Connected While Holding Diabetes Management Fears at BayFriday, October 11, 2013
Scott Benner has written an emotionally-dense, candid, and funny memoir about being a stay-at-home dad and details everything from the mundane tasks of doing the laundry to taking on the role of caregiver to his young daughter who has type 1 diabetes.
By: John Parkinson, Clinical Content Coordinator, DiabetesCare.net
From a very young age, boys used to be conditioned to be tough and not be emotional. Hearing the words, “boys don’t cry,” might be a common refrain many men of various ages can say their fathers said to them. So, when you meet a man who is openly emotional, like Scott Benner, you realize you are meeting a unique person.
In his memoir, Life is Short, Laundry is Eternal: Confessions of a Stay-at-Home Dad, Benner reminds parents that being human means having feelings and being emotionally open when raising children. He talks not only about being happy for kids when they realize their accomplishments, but also having the honesty to deal with the raw ones, such as frustration, sadness, and uncertainty. Benner certainly had his share of the latter emotions himself, especially when one of his young children developed type 1.
While his book is an excellent example of how being a stay-at-home dad runs counter to preconceived notions of gender-specific responsibilities in American society, it is his emotional frankness in discussing his perspective on parenthood that makes his memoir fascinating.
For example, there is a chapter in his book where Benner discusses the realization his young daughter, Arden, has type 1. Arden was two years old at the time and she was dealing with some ongoing issues including a recent bout of hand, foot, and mouth disease, frequent urination, and a ravenous appetite. Benner was able to strike up each of these individual symptoms due to surrounding circumstances. The situation came to a head when the family went on vacation.
Arden was not quite herself while on vacation. After a couple of days of seemingly no let up and Benner and Arden spending time at the vacation house instead of the beach, he and his wife, Kelly, had a conversation that would change their lives radically. In his book, Benner details the moment when he and his wife stumbled upon the realization that their daughter had diabetes. They had been having a fun evening play a game and an innocuous comment by Benner to Kelly made them both think she might have diabetes. Benner writes about the ensuing, frantic moments afterwards on the computer searching for information on the disease to his trip to the drugstore for a glucose meter to the family`s eventual trip to the hospital. He provides a vivid account of this harrowing parental experience.
Even after processing the news of the diagnosis, he readily admits the first two years were very hard—with the taxing nature of having to take care of a very young child with type 1—which made him almost put himself into a self-imposed exile. He limited his mobility by staying close to home to be sure he could deal with any type of diabetes scenario.
During this challenging time, Benner began his blog, Arden’s Day, about his everyday diabetes caregiver experiences.
As the years have gone by, Benner and his family have adapted nicely to living with type 1. Benner feels much more confident today as he has lived with his daughter’s diabetes for seven years. He says the transition has come as the knowledge and know-how of dealing with acute diabetes management scenarios arise. He says he can calmly problem-solve now, and it replaces the fear he once felt in these situations. Arden is also on a pump, which Benner says has made things a lot easier.
DiabetesCare.net spoke to Benner about the importance of being emotionally connected to your children, his experiences in raising a young child with diabetes, and what advice he would impart to families with newly diagnosed children.
DiabetesCare.net: You said you didn’t feel normal for two years after Arden was diagnosed. Why do you think that was, and what did you do to break free from the sadness you referred to in the book?
Benner: I figured I would hunker down and learn about diabetes for the first year. I thought the anniversary was going to come and I was going to understand it. When that didn’t happen it was defeating. I felt scared to go on long car rides with her. I was scared to go to the grocery store if it was a certain amount of time before or after an injection. At that time, I didn’t have a continuous glucose monitor or an insulin pump.
I had to teach myself to do injections with drops because a half unit was too much insulin for Arden. I took food coloring and took the insulin and drew up the insulin and just pushed it until a drop came out. So I had to learn how hard to push until a drop came out. I would give her insulin drop-by-drop because she was 2 years old and weighed 18 pounds. All that fear made me like a prisoner in my own home. It wasn’t healthy for Arden or for me.
I kept thinking I was going to get enough experience and eventually I was going to understand to be free and go out and do what I want. It takes a long time to accumulate that information. You can’t willfully teach yourself everything about diabetes; sometimes things have to happen. You have to live through the experience. I felt like I had to live through every circumstance that diabetes could bring. For example, the nurse tells you give the insulin and let her eat, but what happens when you give her the insulin and she doesn’t want to eat? It makes every meal nerve-wracking. You eventually give up and say, `I can’t give insulin before she eats, but I`ll do it afterwards.` Of course, that makes her blood sugar go higher and then you have to deal with that battle.
It became obvious after the first year that there would never be a “standard” or “regular” day in Arden’s life in regards to diabetes and there would never be a point where I wasn’t forced to adapt to a new experience in caring for her.
You literally get up at 7 a.m. and you try to fill your day with activities for a healthy two year-old, and a two-year old with diabetes is a completely different animal. I was packing the knowledge into my head and I felt like I wasn’t doing it quickly enough. And on top of that, I had the pressure of when my son, Cole, was a young child we would go to the zoo together or do things outside the house. I felt I was letting my daughter down because I’m not doing those same fun activities with her. People say it is a 24-hour disease, and it’s just so true.
DiabetesCare.net: Do you thinking acquiring that knowledge and getting into that routine stabilized things for you?
Benner: I started gathering enough courage in that second year in dealing with some of the unexpected situations. Arden grew and when she was four, she could tell me if she was hungry and I could give her something to eat and count on her to eat it. I also think I finally found a stride and a routine. I knew what I was doing. All of a sudden there were no real situations that could happen that I couldn’t deal with. I had lived enough with diabetes and I had enough experience at that point to refer back to. It didn’t seem so scary and new anymore.
What I tell people now is while it is frightening upfront, you have to hold onto the knowledge that it’s not going to feel that way forever. You’ll eventually get to a point where you feel mostly confident in your ability to manage life with diabetes.
DiabetesCare.net: How was the transition going from multiple daily injections to the pump?
Benner: Having a pump took half my stress away. Things immediately felt better. When their kids are diagnosed, many parents stick themselves with a needle. I told my wife, ‘I’m never sticking myself with a needle ever.’ And she asked why, and I said, ‘well what if it hurts? I wouldn’t be able to inject her.’
When she was two, I was holding her still so I could give her a shot 10 times a day. It hits your soul every time you have to do that. Restraining your child to give her a shot feels counterintuitive to being a parent. It doesn’t feel like you’re helping when you’re causing your child pain in the short term. And we didn’t want to have a school nurse give her shots, so we wanted to get on the pump before she went to school.
And once on the pump, her blood sugars and her A1cs got better. Mealtimes didn’t seem so stressful. With the pump, you push a couple of buttons, you get a beeping noise, and you can sit down to dinner. Life goes back to being about our experiences as a family, instead of constantly being focused on diabetes.
DiabetesCare.net: There is a real emotional component to raising children. Can you provide a man’s perspective on it?
Benner: If you don’t allow yourself to show your emotions when you’re with your kids, you can’t give them the upbringing they deserve. You’re not really being honest with them. They are tiny people having experiences every day, and you can’t be walled off emotionally when they are going through these things.
I get why guys think when they grow up that they can’t cry and be a “wuss,” and all that stuff, but at some point, early on with my son, I thought it wasn’t fair to him to not be emotionally connected to him. My wife is fantastic at being emotionally in-tune with our kids, and I wanted to offer that same support to them as a stay-at-home dad. It really doesn’t have much to do with gender; it’s just about being the best parent you can be for your kids.
DiabetesCare.net: You make a very interesting statement in the book that diabetes has helped make you a better family and yet you also wish your daughter had never been diagnosed. Can you explain the conflicting messages?
Benner: It’s the perspective that diabetes lends. It’s the idea that as bad as things are, they aren’t that bad. There are a lot of far worse chronic or fatal diseases, so diabetes is better in that regard, yet it has also changed how we act and think as a family for the better. We’re a closer unit now than we might have been otherwise.
DiabetesCare.net: What do you see as your biggest ongoing challenge as a parent and caregiver of a young child with diabetes?
Benner: In the broader sense, it is managing the feeling of burning out in terms of caring for the diabetes. I think my burning out would lead to all sorts of bad things for my daughter.
If you stop taking care of diabetes properly because you have burned out, the complications don’t stop coming because you are tired. And I need to be Arden’s supporter and advocate, most importantly.
DiabetesCare.net: What advice would you give to another parent of a child recently diagnosed with diabetes?
Benner: In the short term, find people in the diabetes online community. There is so much value in meeting those people and those who can understand what you are going through. They become your supporters who can get you through all of the crap we sometimes have to deal with in our diabetes life—things that maybe our friends without diabetes just don’t get.
In the long-term, managing, and even thriving with, diabetes will eventually make sense and feel manageable—and not scary. You will amass your 10,000 hours, so to speak, and it will all start to click, slowly but surely.
When I’m now in a diabetes moment that needs addressing, I can look at it from different angles and the panic is no longer there. The unconfident aspects are gone, and I see where I need to focus my efforts and I act on that.
Give yourself time to learn what you need to learn. Keep soaking the experience in until it makes sense.
For any reader interested in finding out more about the book or purchasing it, go here.