Tag Archives: parent and child with type 1 diabetes

The Challenges of Managing Two Diabetics

It’s been tricky managing my daughter’s diabetes alongside my own. Here are some things I’ve found particularly challenging:

There’s Only So Much Room Up There

There’s only so much space in my head and I’ve always hated taking notes and logging information. I have lower conscientiousness–in the form of organization skills than I’d like so I have struggled with laziness regarding doing these things.

But when managing my diabetes and my daughter’s, there just isn’t enough that I can reliably commit to memory. One thing that helps is that I’ve synchronized our schedules. We give insulin at the same time and eat at the same time (I homeschool so this works well). I also teach her what I’m doing as I do it and that helps me when I’m trying to keep things straight.

Double the Emotions

My daughter’s blood sugars are stellar but every so often when there’s a high or low and she feels awful, it doesn’t matter if I’m 80, I feel awful, too. And that’s been tricky to cope with because too much feeling awful is a recipe for a disaster. So I’ve been trying to just breathe and not get too caught up in those moments, as they are temporary. There are moments of despair though, like if I’m high and she’s low and our allergies are flaring and I’m trying to figure out if we can afford stuff and if I have the energy to pack more than one Frio with all the supplies and pre-cooked low carb food in a large backpack for a park on a hot day. Sigh.

Who Did I Just Inject?

It can be hard to remember who I just gave an insulin shot to. Especially around dinner time when I’m busy finishing a hot meal and setting the table and timing it all with my husband’s arrival from work. I’ve asked my daughter, “Did I just give you a shot or was that me?” Scary, right? I’ve had to nearly slap myself on some early mornings to make sure I’m fully alert and mindful.

Mindfulness is crucial. I have to make sure I don’t switch our doses. I can’t give her my basal or bolus dose without turning things into a life-threatening situation. So I’ve learned to inject only once I’m fully present. If I am not or if I’m rushing, I stop myself and wait until I can inject safely. If someone is talking to me I ask them to stop. If there is a lot of commotion, I remove ourselves to another room.

The same thing happens with checking blood sugar. “Were you 104 or was that me?” It’s easier to keep track of whose blood sugar is whose now that she checks her own blood sugar, though.

We have different doses, different insulin correction factors, different glucose needs to correct lows, and I have to remember my diabetes is very different from hers right now. I’ll go higher and lower much more easily so I can’t mimic her schedule completely. I have to remember to check more often and still remember to check her at the right times. She still makes some of her own insulin and I probably don’t.

Exhaustion

Sometimes I just get purely exhausted. This is mostly due to the physical hit I take from waking up in the middle of the night for our blood sugars. Now, in most cases like ours, I’d say the other parent should be getting up to check the diabetic child and that way everyone shares the “burden”. In my family’s case, my husband works 12 hour days doing hard, outdoor physical labor in construction with dangerous equipment, sometimes on high scaffolds–my point is that he needs to not be sleepy during the day so that he doesn’t make a critical error and lose life or limb (he’s already lost a tooth and his wedding band and almost lost an eye and a finger). You understand.

Some nights, I get up twice for my daughter and twice for myself and that kind of interruption to sleep is brutal if repeated too often within a week. My lymph nodes swell and I start feeling like I have a cold.

Master Mind I Am Not

Forgive me, the kids are really into Star Wars, lately.

Due to being the diabetes expert and stay-at-home parent, all the diabetes stuff automatically falls on my shoulders. My husband and I have a plan for using the weekends as training times for him because he needs to be able to do and know all I do and know. It’s intimidating for him because he sees that I get intimidated sometimes, and I’m an expert in living with type 1 and this is our dear little girl. But if we get a habit of synchronizing our giving insulin and stuff, him taking over on weekends seems like it can cause me to get out of my routine and screw up my flow, so there is a lot of creative trouble-shooting we’ll have to do to work things out. Mainly, I have to work hard to remember my own diabetes. You’d think this wouldn’t be an issue after so many years, yet here we are.

It’s hard to know exactly what it’s like unless one lives with type 1 and also manages it in someone else. If you’re like me, your mind is constantly analyzing and accounting for various factors like food, illness, stress, exercise, insulin doses, and more and when you’re doing that all the time for two people, it can be overwhelming and one person’s diabetes may suffer as a result. In our case, it’s been mine because that’s what parents do.

The Cost of Two Diabetics

The toughest part of everything is something I won’t go into too much because people paying for one case of type 1 diabetes can already imagine–the cost of two diabetics in one household. I grew up with a type 1 sister and these days, it’s a completely different ballgame to pay for two type 1s. We’re talking tens of thousands of dollars. Geez, makes an incredibly tough medical condition almost pale in comparison.

Pity Me Do Not

I like being understood but please don’t pity me. I’m so glad to have a wonderful family and to know how to keep my daughter and I well-managed. This hard work leads to focus, dignity, and gratitude. And in a blink of an eye she’ll grow up and I’ll only be managing my diabetes, once again. Though If I could magically manage both forever, so she wouldn’t have to, darn it, I would lol.

Due to writing this post, I can see what we need. To adopt a strict write-it-all-down habit where our every detail is responsibly tracked. Forcing out my own stubbornness (I hate logging!) won’t be easy but as is evident from all I’ve shared: necessary, it is!

(Sorry, again.)

The Diabetes Post I Never Wanted to Write

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.

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