I knew quite a bit about type 1 diabetes before I diagnosed myself with it at age 11. My sister was diagnosed earlier the same year and I read up on it at the library in order to be useful to the family.
I still remember sitting in science class in 1994 when it hit me. I knew I had type 1 diabetes.
Days ago I got out the diary I wrote in between the ages of nine and 14. I read my early entries to my two nine-year-olds. They thought a day in February was hysterical which just said: “I’m SO bored!” I read to myself some of my age 10 entries, leading up to my diagnosis. Boy, was I moody…I couldn’t help but get a feeling of deja vu later that day when my daughter said something similar to what I had written on December 8th, 1995: “I just don’t know…” I wrote that so I know the feeling behind it and the way my daughter said it when I asked her if she was ok actually gave me the creeps. She sounded dazed and confused. I felt panic because it seemed that if I didn’t know what was wrong, and she didn’t know, then how could I help? She is an articulate child and generally knows herself so this kind of response was disturbing and abnormal.
Then on a typical Wednesday, my son comes up to me and says he is nervous because his vision is blurry. I stay calm and tell him that I’m going to check his blood sugar just to rule that one thing out. Type 1 diabetes in my children is a constant worry of mine.
I have two siblings with type 1 and an uncle with it, too. We definitely carry the genetic predisposition for it.
Alex is home from work now and he encourages our son to let me prick his finger.
He’s very nervous but he lets me do it. He’s 108. My stomach falls. I wish it was lower. That number is just good enough and just bad enough that I sit there dumbfounded. He looks worried and says, “that’s a little too high, isn’t it?” I have never lied to my kids so I tell him, “I think so…but it’s not too bad, we’re just going to keep an eye on your blood sugar going forward, ok? You don’t have to worry about it right now.” (His vision was back to normal after we checked him, turns out he had been pressing on his eyes, you know, things kids do).
Then suddenly, I decided I must check my daughter’s blood sugar. She is afraid of having her finger pricked so she runs away to her room. Alex has a chat with her and I am able to do it, though it’s no easy task. She has generally always been a very tough patient and I’m distracted by trying to keep her calm and keep her from pulling her finger away until the meter quickly counts down and beeps and the strangest number shows up on the screen: 245 mg/dL making my jaw fall open.
I’m speechless. I show Alex the meter and he looks just like me. He mouths the word “no…”. I tell our daughter there was a mistake and that I need to check her again. She’s upset by this and asks why. At this moment our son is looking at the result on the meter and says, “Was that her number? She’s really high…oh no, mom, I’m scared” And he starts to cry. She is on the other side of the room avoiding another finger prick. We check her again and confirm the high. She walks away to the couch and is upset about her bleeding finger and the slight throbbing. I accidentally pricked her too hard due to being unable to stop my shaking.
I check Alex’s blood sugar, for some strange reason. I don’t know what I was hoping for, the possibility of a screwy meter? He’s 100 mg/dL. I feel a rush of despair as I realize that our kids, who should have lower blood sugar than their dad, both have higher blood sugar than him.
Immediately I start thinking about research that shows what the chances are for a fraternal twin to get type 1 if one has it. I think the chance was about 22%, which is crazy high. For identical twins, I think it’s 50%.
I sit crying quietly with Alex at the dinner table for a few minutes. Then, while he’s holding our daughter in his arms, I ask him, “should we tell her?” Our daughter still doesn’t know what’s going on while the three of us are all mourning for her. Alex nods to my question. So I tell her that her blood sugar was high. She immediately knows she has type 1 as she covers her face to cry. She’s lived with it all her life by being my kid. Since she’s always been homeschooled, we’ve spent all our days together and she and her brother have not only seen all that I do to manage but have also heard me talk about it often. She even knows the risks and complications that can come with type 1.
I inform her with strong conviction that I have learned how to manage type 1 diabetes well and that we would take care of her. This is true. I have been a weird type 1 diabetic. I’ve talked and written about it much more than most type 1s would ever want to. Recently, I had told Alex that I still didn’t know why I have been obsessively compelled to learn so much about diabetes and to constantly read about it.
Sometimes you work hard and spend all your free time on something and you don’t understand why you’re driven to do it, you only know you must. I don’t enjoy learning about diabetes or talking about it or writing about it all the time. But now I know what I was training for, apparently.
A few years ago I imagined what I would feel if one of my children were diagnosed with this and I vividly saw myself on the floor, a puddle that no one could pull up and console–a pitiful shell of a person that couldn’t help anyone. I truly imagined that I would be so emotionally injured that I would die. But since my kids need me, I decided then that I had to toughen up. Because I can’t die on them.
Over the last few years, I have changed dramatically. My mindset is different now and many of my beliefs, too. I studied philosophy to learn how to determine was it real, true, and good and I started looking at everything more objectively. I was able to stop being mad at certain things and start being mad at things that deserved my wrath. I began to hold myself accountable and responsible for my life and my emotions. I stopped being fragile, honestly. I have been transmitting all this to my kids, teaching them how to think critically, be resilient, be righteous, and brave.
So I realized that night, standing in the kitchen with Alex’s arms around me, that I wasn’t a puddle on the floor. I was full of adrenaline of course, but I was standing tall and determined. If type 1 diabetes were a person, I’d be glaring at it, calculating just how I was going to beat it down.
Alex and I had a meeting with the kids the same evening about how we were all going to eat from now on. I eat a very low carb diet to manage my diabetes and now my entire family is going to do it. They are already used to a low carb diet but the step down to “very low carb” is not easy. I was surprised by how willing our son was to do this for his sister.
My daughter hasn’t cried again since…even after seeing me break down after the official diagnosis at the doctor’s office days later. She just took my hand and looked me in the eye and said firmly, “Everything is going to be alright.” I told her I was just so sorry and that I never wanted her to have what I have. She said, “I know, mom, it’s ok. Let’s go home.”
When did she grow up? Was it the day she was diagnosed with type 1 diabetes?
We caught the type 1 early so she doesn’t need insulin, yet. Her diet is keeping her mostly in the 70s and 80s. I check her during the day and in the middle of the night. She’s like a new kid when it comes to the finger pricking. She easily gives me her pinky, her favorite finger–mine, too coincidentally, turns her head away and covers her eyes with her free hand.
I’m still bursting into spontaneous tears at times but I don’t feel weak and hopeless. I am devastated. Yet, my love for my kids fuels me. I will take care of my daughter’s diabetes and teach her how to have excellent blood sugar management. I will keep an eye on my son’s blood sugars. I will make sure my husband knows what he needs to know to feel confident when I’m not around.
If there’s anything I’ve learned thanks to diabetes is that life is hard but much harder if you don’t learn to defer gratification and be stoic and use restraint and wisdom and curiosity. It feels good to avoid sweets in order to see better blood sugars. It feels good to check blood sugar in the middle of the night to stay safe. Everything you do that is wise but difficult will boost your self-confidence and self-respect and make you the person you always wanted to be: healthy as is possible, brave, and in some very meaningful ways–triumphant.
I strive to be humble, patient, empathetic, calm, and respectful with my daughter throughout this journey. I know that if I do these things, she’ll likely treat herself that way the rest of her life and she only deserves good things–including normal blood sugar.