Tag Archives: parenting a child with diabetes

Parents Suffer But Children With Diabetes Suffer More

I’ve been active in the Diabetes Online Community for an entire decade, literally since my twins were born. I’ve noticed that parents suffer a lot due to having children with diabetes. I’ve always had compassion for this because I could empathize and did empathize with my own parents growing up–it is gut-wrenching to see your child develop and live with an incurable, life-threatening illness. I know what it feels like to grow up with diabetes as a little girl so when my little girl was diagnosed, I felt strong emotional and physical pain. Type 1 diabetes in a child IS hard on parents.

However, something I’ve long wanted to say that has more weight now that I’m also a parent of a child with diabetes is that parents do well to remember that no matter how much suffering you’re experiencing, it’s worse for your kid.

Since I was 10 years old, when my sister was diagnosed, I’ve heard the following from type 1 parents (I never heard my parents say these things, thank goodness):

“Kids are resilient, it’s so much harder for the parents”.

“I’m glad my child got it early, they don’t know life with type 1 so this is much easier.”

“Children are different, high blood sugar doesn’t bother them much.”

“It’s so tough for adults who are diagnosed because they didn’t grow up with diabetes and get used to the needles and everything.”

These comments, while they might be someone’s valid opinion, for which I’ve never received an explanation that makes enough sense to me, indicate a lack of empathy and ignorance on the part of the parent, towards the type 1 child.

Parents are adults (or ought to be) and so they have much more in the way of resources with which to cope with difficult situations. I’ve been the kid with diabetes and I’ve been the parent of a kid with diabetes and I think it’s harder to be the kid. You still have worry, fear, and increasing awareness about how diabetes affects your life and you have to deal with it without completed brain development and before you master many other tasks.

We look at children and they play, they smile, they laugh, and we tend to forget that deep down they think and feel very deeply. Often, we talk to others about how they’re doing and we’re only giving out our perception versus the reality according to that child. So we have to be aware that in the midst of our suffering, it is our child who lives with this disease. It will move out of your home one day, but not your child’s body. Your child knows that and so while you’ll get a break one day, they know they won’t. You’ll likely worry for them their entire lives, but it won’t be the same. In my case, I’ll live with it forever alongside my daughter but I can’t carry it for her so she’ll have to bear all her own burden and I have to respect that reality.

Amidst your suffering, don’t give your child the impression you’re suffering more than they are.

As a kid, it was annoying for me to hear adults tell each other about how their job was the hardest and the diabetic kids were just living it up as normal kids. I did the teenager eye-roll, which was invented precisely so that kids would have a way of physically coping with the desire to throw something across a room when adults showed they forgot what being very young was ever like. Kids don’t have an absence of suffering, they just show it differently.

If diabetes is bad, then more time with it can’t be good. Impossible. So, that’s my thinking on the topic of it ever being a good thing that someone gets it sooner versus later. Damage adds up over time. It’s simple arithmetic and statistics. Damage is bad and who knows what someone’s personal threshold is for damage turning into a complication.

High blood sugar still affects kids, even if they say they can’t feel it and even if they can still be good at sports like I was, despite running high numbers. Children struggle to pinpoint their symptoms, this is why pediatricians get trained in the specific ways children describe certain sensations. They also have acquired less potential for neuroticism in their short lives so you’ll not hear so much complaining from them the way you will from an adult. Deep down, the symptoms they feel affect them. And at a cellular level, they’re absolutely being affected, the effects of which may not be very noticeable until they’re adults who must now take on this huge burden of accumulated damage.

I’m constantly wowed by the things my kids say, evidence that I too can forget their capacity for nuanced and complicated thoughts and feelings at their tender age. What children with diabetes need (speaking as a former child with diabetes) is to be asked about how they feel and what they think. You might discover they don’t care if someone tells a diabetes joke (that outrage might just belong to you) and they might feel profoundly sad or tired. Try not to speak for them. Don’t tell others that your child is empowered and handling this well. They might feel that you’re misrepresenting their experience and that makes it hard for them to tell you if they’re having a particularly hard time–they don’t want to make you out to be a liar. Listening to them talk about their diabetes from their perspective is probably one of the most helpful things you could do.

Why My Child Eats Low Carb for Her Diabetes

In a post for Diabetes Daily, I wrote about the 5 main reasons why I feed my child with diabetes a low-carb diet. My duty is to deliver her safely into adulthood and ideally with perfect health, so that’s what I’m going for. And yes…her mental and emotional health is one of the priorities. Click below to go to DD and check out the article.

Share with a parent of a child with diabetes you think may be interested. As a former child with diabetes, I wish someone had shared something like this with my parents.

https://www.diabetesdaily.com/blog/5-reasons-why-my-child-with-diabetes-eats-low-carb-608466/

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.

The Greatest Lesson my Parents Taught Me

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My parents have taught me many things.  This is from my perspective as to what has been the most valuable lesson for me.  Now that I’m a parent do I even begin to understand things from my childhood.  Some issue will arise with my children and I’ll think back and go “Oh…I get it now”.  And only now do I really get what I would call their greatest lesson as a married couple.

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Let me tell you a little about my parents.

My mom is the kind of person that will tell it like it is.  She stood up for me when my teacher picked on me while another parent might have avoided confrontation (I was embarrassed, relieved, and proud all at once).  Everyone I know likes being around her.  She’s energetic, bubbly, and fun loving.  People are always surprised that I’m her daughter and not her sister because she looks at least 10 years younger than she is.  My mom loves a party or social gathering.  It’s why I didn’t just have a father daughter dance at my wedding, I danced a samba with my mom, too.  She rarely loses at board games.  She always is ready to spring into action.  She has five grandchildren and I swear she has more energy than me when taking care of them.  She raised two children with type 1 diabetes and was the main pancreas for us both.  I don’t remember her getting emotional or upset over what we had to deal with.  She just did what needed to be done and continued to live life.  I know inside she suffered but I don’t remember seeing it.  I can recall her frustration when managing Ana’s low and my high all at once, as well as the needs of our three other siblings who needed her attention.  But overall her attitude of “you and Ana can do anything with diabetes and still be healthy” always reigned.  So I continued to play sports and do the things I enjoyed, regardless of how much more challenging diabetes made it all.  My mom was in the stands ready with water, juice, glucose tablets, our meters, all while chatting up parents and cheering on the game.  She helped us live as normal a childhood as was possible and looking back, I am really appreciative of that gift.

My dad is in many ways my mom’s polar opposite.  While my friend’s dads were drinking a beer and watching football on TV (nothing wrong with that) my dad was spending time with us.  He often talked to us kids about science, philosophy, religion, politics, health-heck every possible subject in the world, aside from gossip and small talk.  I don’t recall one instance in my entire life where my dad went out with friends or coworkers without his family.  He was with us or he was working, period.  I thought that was normal until I got older and realized that there were many dads out there who did very different.  I grew up thinking that everyone’s dad played the guitar for them before they went to bed and that everybody’s dad had taught themselves to play the piano.  Ana and I have a few favorite songs we share and they are original piano compositions by our dad.  My dad is our family’s moral compass.  He’s like a visionary, too, observing and looking ahead.  He taught us to do right by others and to dream big.  A family friend once aptly stated that if she was going to a party she’d call my mom and if she was on her deathbed, she’d call my dad.  Despite all his deep thinking and seriousness, I think my dad can be quite the character.  He worries for everyone and their wellbeing and takes his responsibilities seriously but sometimes he’ll break out with a random joke or do something utterly spontaneous.  When I was pregnant, I went to my parents house one day for lunch.  As my dad opened the grill to get it ready he basically freaked out over this:

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He was genuinely angry at the birds (a hilarious stark contrast to the normally very concerned citizen of nature so this was a huge surprise to us all) and I can’t remember the last time I laughed so hard.

He managed our diabetes from a less intensive point.  He made charts and graphs and helped point out trends he noticed.  My dad was often the one to notice when Ana or I didn’t seem like ourselves.  My mom is naturally more hands on and did our shots and finger pricks and carb counts until we took those over.  My dad, a little further removed, was able to see the bigger picture.  He also served as the more emotionally available parent which is as valuable as anything else.  My mom pushed her emotions aside and reserved all her energy.  Anytime I needed something I’d automatically say “mom!”  I still do that and instead of call my parent’s house, I call my mom’s cell without even thinking about it.  I can’t imagine how much more difficult things would have been with my diabetes without either one of my parents.  I think Ana would agree.

My point of all this is that no parent of a child with diabetes has to be be able to do it all.  Together, parents and even family and friends can use their skills and areas of interest to help a child with diabetes make their way through childhood.  I think Ana and I were very lucky to have two very different people working together to meet so many of our needs.

Now that I’m a parent, I try to accept which roles I play in my children’s lives and try not to feel bad about what I can’t do or don’t do well.  I can accept that I’m the nerdy mom that is a bit of a control freak and is always thinking about everyone’s wellbeing.  I think it’s great that Alex is so different from me.  Every time one of us is struggling with the kids, the other takes over and is more equipped to handle the situation, thus saving the day.  I never want to be jealous of how Alex seems to usually be the fun, cool, and relaxed parent because when someone needs water or food or seems to have a belly ache, I am the usually the first to notice and that’s certainly valuable, too.

I hope that when my parents think back on the jobs they did with Ana and I and our other three siblings, they’ll see their short comings were simply an opportunity for the other parent to step in and to show us what teamwork is all about.  In fact, I like to think that’s their greatest lesson to us- teamwork.  I hope you both know you did a great job.  Thank you so much.

Wordless Wednesday

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Ok so my version of Wordless Wednesdays isn’t so wordless.  But it’s shorter than the usual post.

I just read an article in last month’s National Geographic about Teenage Brains.  By using modern technology they’ve discovered that the teenage brain is not fully formed and this serves as an explanation to the often bewildering and parent maddening behavior.

What does this have to do with diabetes?  Well, the article states the brain’s development is completed in the mid-20s and the fact that before this the brain is incomplete and this has a direct impact on decision making skills.

How many of us struggled most with our diabetes during our teenage years and early 20s?  I did.  For those of us who grew up with diabetes, I think we owe ourselves forgiveness.  Trying to survive, day to day, with such a complicated and relentless disease without even having the proper mental maturity to do so 100% of the time?  That’s actually amazing.  For those of you with children with diabetes, this article really is a great read.  I definitely needed my parents to help me with my diabetes when I was a teenager and to stay connected and to catch my sneaky ways and notice when I was taking a crazy risk and I don’t think I’m the only one.  (And I was a kid everyone thought was responsible and “together”)

This may not be the most uplifting of news but the article puts a very positive spin on it and helps us appreciate all the wonderful things about young people and gives a few tips on how to help.