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Questions About Growing Up with Diabetes.

Rockin' it old school.  Where's my gel pen?No WAY could I ever claim to "counsel" parents of kids with diabetes.  I'm not an expert, I'm not a doctor of any kind, and I don't have the first clue as to what I'm doing 90% of the time.  

So.  That being said, I will admit that I've emailed with lots of parents of kids with diabetes, and I've gotten so much out of that glimpse into what it's like to be the parent of a CWD.  Not counseling, but listening.  And learning.  Talking with these different parents has given me a whole new level of respect for what my mother and father did for me, growing up, and how I view my diabetes as a result of their care.

Over the weekend, I received a few questions from a parent that I couldn't quite wrap my head around.  They were big questions, the kinds that require coffee and one of those old school composition notebooks (and a phone call to my mom) to sort out in my head.  Here's my take on this mom's questions about growing up with diabetes:

How well did your parents do in managing your diabetes until you were able and independent?

I can't say my parents did anything short of remarkable work when it came to my diabetes.  And that goes for every parents of a CWD that I've met in the last few years.  I was diagnosed just before second grade, and my family didn't know anything about type 1 diabetes, let alone that it could ever effect their daughter.  They brought me to the hospital and stayed there with me for 12 days, learning how to inject insulin into oranges using syringes that they would eventually plunge into my own skin. 

My mother, in particular, took her role as "my pancreas" very seriously, and worked tirelessly to control my difficult blood sugars.  She tested me every morning when she first woke up, the sound of the ziiiiip on the black meter case stirring me just enough to poke my hand out from underneath the covers so that she could lance my fingertip.  She carried measuring cups in her purse and had a food scale in our kitchen.  My pancreas wasn't working hard enough, but my mother was.

This isn't to say that we were "perfect" in managing diabetes, or our emotions, or that we had one of those "unicorns and rainbows" types of relationships.  My parents and I battled endlessly about all kinds of stuff, from cleaning my bombsite of a room to my propensity to drive too fast to fighting over the boys I wanted to date to the diabetes I didn't want to control all the time.  Fights were part of the routine, but it wasn't because of diabetes.  It wasn't despite diabetes.  Diabetes was just part of the stuff we fought about. 

(And on the whole "able and independent" part, I'm still not fully either of those things.  I'm able to take care of myself, but I still lean on my parents, and my husband, and my friends for support.   And while I'm fiercely independent, I still need, and want, their help.)

Did you resent them?

No.  I never resented my parents for any of this diabetes stuff.  Not even when I wanted to convince myself that it was hard because they made it hard.  Diabetes is hard because it's diabetes.  Sure, my mom and I had blow outs about when she would say "We have to test our blood sugar," instead of "You have to test," but I grew to understand how much she was truly involved, even though I wasn't aware enough at the time

I've resented diabetes, though, which I know is hard for my parents to hear (and to read on this blog).  I do not like it, I didn't invite it, and I'd sell it to the lowest bidder without thinking twice.  I resent it for making me write To Do lists that a child has no right even worrying about, and I resent it now for making me feel for a kick from BSparl every time I have a blood sugar spike during the course of my pregnancy.  But my parents - my whole family and friends support team, honestly - have tempered that resentment for me by supporting me.  They don't coddle me, or tell me that "Things will be fine" or "Sure, you can go ahead and not care about diabetes."   They understand that this disease is serious.  And unfair.  And only sort of manageable.  But also that it doesn't have to own me.  It never has.  And it never, ever will.

What is one thing you could tell me to do that will make make this easier on [daughter's name]?

Blame the diabetes, not yourself.  Or your child.  Let her know that it's you and her against this monster, and you'll always fight beside her, not against her.  You're in this together, and she'll never be alone.

But Reader, you'll never be alone, either.  You've got all of us.   For the long haul.  :)

I wanted to give my answers to this mom of a little girl with newly diagnosed type 1 diabetes, but I also wanted to offer these questions up to you guys.  To get more than just my perspective, because so many of us have grown up with type 1 diabetes and might answer these questions in completely different, completely honest ways.  If you have insight to offer, please do! 

Comments

I don't ever recall resenting my parents. But I do recall the fights about eating when I'd had my insulin. This was, of course, back in the days when you HAD to eat and I just didn't want to. Thankfully, with new treatments and carb counting, your child can eat or not eat and still be okay. :)
My parents did a decent job with what they had. I can't complain.
As far as making it easier on your child, get her involved in groups with other D kids (thankfully, and sadly, they aren't as hard to find as they were in my days as a child w/ d). It helps knowing that other kids "get it".
And don't be too hard on yourself. You aren't perfect. Neither is your child. And no matter what, even if you think you have everything perfect and diabetes still acts up, don't feel bad about it. Its not you. Its diabetes.

Thank you for that I am a mom with a CWD we are going on 3 months now and I have to say I am frustrated, mad and resentful, my daughter (she's only 5) is too and sometimes she gets so mad when she's playing with friends or doing something fun and I say okay, lets check your Blood Sugar. I stumbled on your blog, I read it everyday and am working on starting one of my own, for alot of reasons, but one of the biggest is to get out there, I like reading that other mom's and dad's the the PWD have some of the same feelings I do. It helps alot. Thanks again

In my case, my mom is a Type 1 diabetic since the age of 5. She was told not to have kids - she had me. Her greatest fear was that I'd become diabetic, and that fear was realized when I hit age 5. But I don't resent her one iota. This isn't her fault, and there's nothing she could have done. In teaching me and parenting me, she did all that she could to balance her roles as a parent and a PWD herself. All I have is admiration and respect and gratitude, even as I now look at starting my own family. If someday I'm ever to have a diabetic child, I hope that I can do what she has in my life.

You hit the nail on the head, Kerri. The biggest thing, in my mind, that a parent can do for a t1 diabetic child is not to take out their frustrations on the child, but rather on the diabetes itself. The child didn't ask for it, nor did you. They don't understand what's going on any more than you do. Tackle diabetes as a team. Don't belittle them when the glucose level reads out of range and make them feel ashamed, rather work together to try to figure out why it happened, correct it, and move on. I always hated to have my mom or dad fuss at me because of a high reading, giving me the sense of failure and shame. For years, it was why I didn't check like I was supposed to and let my diabetes do whatever. I never resented my parents because of my being diabetic, though. They didn't cause me to become diabetic, so why should I? They did the best they could.
I do resent diabetes, mainly because it consumes so much of your life. Everything you do revolves around it. Every choice you make. Life with diabetes is doable, just done in a different way.

My daughter's Type 1 diagnosis was just over 2 years ago, and I stumbled across this blog in my grief-and-shock haze in the days after she came home.

This blog has been my lifeline when the diabetes makes me crazy. Just reading here reminds me that Kerri, despite her choice to be a vocal spokesperson for life with diabetes, isn't all about the disease. She's a beautiful, smart, funny, caring person who I'd love to get to know in real life, just like all my favorite bloggers. Oh, and she happens to have diabetes, too.

Which gives me hope that my daughter -- beautiful, smart, funny, and caring as she is -- will grow up and fall in love with someone who deserves her and reach with both hands for everything she wants, and manage to grab a lot of it. Oh, and manage her diabetes, with the help of her family and friends.

After two years, I can usually recognize my daughter's symptoms for highs and lows, but she's only six, and she doesn't really remember life before diabetes, and so she has no words to tell me what it feels like, to have her blood sugar spiraling out of control. So I'm grateful to this blog for giving me a glimpse into that feeling.

My best advice for parents who are new to this: find other parents to talk to. I remember those first months like a bad dream, and one of the few things that pulled me through, besides this blog, were a couple of other parents that I managed to contact. They gave me advice and helped clarify the things the doctor said and provided suggestions and recipes, and most of all reminded me that I wasn't alone. Please contact me, if you want someone to talk to (click through to my website and leave a comment somewhere).

I think I do have some resentment against my parents about this disease. Only because the only comments I get are things like rolling eyes when I have to count/or ask about carbs at dinner at their house or my dad asking me if he'll have to call the ambulance at Christmas when I eat a cookie. There are countless times that I have asked for support and have been met with disinterest from my family. So I am envious Kerri that you had/have the support from your family that you do.

Tomorrow my daughter marks her 11th year with diabetes. I can say that it does not get "easier" it does, however, get more familiar. I can hear a low or a high coming on by the tone of her voice and how she is acting, I can see her getting pale and sweaty, I remind her about getting her kit and testing before we sit down to dinner...Her doctor once told her during a particularly difficult visit that "diabetes really sucks". It made her smile and it made us realize it does suck. I still wake up in the middle of the night when she needs juice or has a problem with her pump. I always tell her "it's part of my job" as her parent to help her when she needs me. No matter how old she gets, I will always be her mom, and will never regret one second of this job!

Thank you so much Kerri, I am a mom of a CWD she is 8yrs old and was diagnosed just over 1year ago, so great to read your thoughts and perspective on things, I am always so worried about my daughter and how she is feeling if she blames us for this, she is so strong and never complains about any of it, she has us in complete amazement. I have been reading your blog since about 2 wks after her diagnosis and I can say that it has helped me tremendously to get through this, and to stay strong. Your parents did an amazing job and I hope that we do the same for Lily! Thanks

Kerri:

I appreciate that you can tell us that you were not the perfect PWD. All I seem to read about is how kids are perfectly accepting to this crappy disease and are really working hard to tame the beast. At our house it is completely different our son wants nothing to do with the disease and at this point could care less what his bg is at any given moment. He just spent the last 9 days in a hospital because he was becoming more and more defiant with his care. Telling us higher numbers when he was low or taking insulin at school for lunch and then not eating. It has been the scariest time and he is only a preteen. I can't imagine what the teen years will bring. Do you think there is a time in a young persons life when a light goes on and they realize they can fight this disease and still be happy and healthy? My son can't seem to accept it which I think I would have a hard time with also. He hates that we have to look over everything he eats and all his bg numbers but he will not do any of the work himself. He refuses to give shots or even learn his I:C ratios. I'm willing to do all of this for him now because I also realize that he will have this disease his whole life and if I can help him now hopefully he won't "burn out" from it later.

This journey as a Mom who has a child with Type 1 sure is one heck of a ride, isn't it? I applaud your Mom, Kerri, she did it all before the times of online support like we have now. What strength and what resolve she must have! For all the things that may make you crazy about what your Mom did or did not do, she did the best she could at that time. I would love for you to do a videoclip with her some day, I would love to hear her and you together. I think she has made you the strong woman you are today Kerri.

When G was dx'd over a year ago at age 6, I'm not sure I knew how I was going to get through it all. This community, this beautiful, heart-rendering, giving DOC gets me through it. In turn, I think I can give G the strength to get through it too. I see you, Kerri, and you have given me so much as a parent of a child with T1. You show me what is possible for my young daughter. You show me how you do it, faults and all, and show me the realness of the big D in her life. I cannot thank you, and your Mom too, enough for that.

That being said, I would tell this Mom that telling your daughter that you are on the roller coaster with her. Gripping the bars some days. Throwing your hands in the air on other days, feeling the thrill of just being on the coaster with her. And you will stay on the ride with her, day in and day out, for her life. That's what I think you tell a young child with D. That she is not alone. That look, there are people out here, living strong with D, surviving, carrying on, living their best lives. You can too my dear daughter. You can too. We will do it together and we will do it well. You have the strength to persevere, the courage to withstand what life hands you and the faith that it will all be well.

I've recently made a friend who is a mom of a beautiful 9yo type 1 daughter(diagnosed at 1 year old!)

The thing that struck me most when talking with her about it is that she didn't want to force her daughter to carry the "I'm a diabetic!" flag or lead her own parade if she didn't want to. She wanted her to be all the great things she is first...swimmer, reader, big sister, etc., before being identified as diabetic. What she said really hit me, because it made me think of your tagline...diabetes won't define her daughter any more than it defines you.

I sent her a link to this post in hopes it brings her a little peace ~ both from the post itself but all the great comments. I hope she knows she's not alone and that she can get support from the DOC, and that her daughter, if she's ready to do so, will know it's there for her too.

Hi Kerri, I am a mom of 2 T1's - ages 12 and 5 and I thank you for sharing your journey with the world. I read you blog everyday since I've recently run across it and I think you are wonderful and a testament to PWD as to how good life can turn out with a little (ok, make that A LOT) of extra work! Your blog always brings a smile to my face and for that I thank you. I hope my children never despise me for this disease or for the fact that the first thing out of my mouth everytime I see them is "did you test? what was it?" I hate that, I hate this stupid disease but my love for them is beyond words and so like you and all other PWD and parents of T1's I will press on and do the best I can each and everyday. Good luck with your new little one! I'm sure she will be beautiful and strong just like her mother and I'm sure she will understand why you can't share your juice box sometimes! : )

My parents are the reason why I am alive today. they worked hard and spent alot of time dealing with my highs and lows and putting up with my anger from not being able to do something until my BG was good. They learned so much and taught me very well and have made me strong and to fight this disease by keeping my BG under control. I could never blame my parents in fact My parents dealt with this disease times 2. my twin also dx'ed with type 1 2 yrs later and so my mom wow she had to be amazing I mean 2 am BG checks and carb counts for 2 kids same DNA but differ. insulin dosings and like I stated before I am alive today because of my parents and so is my sister.

Thank you Kerri...that is exactly what I was looking for. I struggle with this because I am new to parenthood and new to having a CWD. This has brought me some peace. And to think your parents did it all without the internet to find information and support. Wow. I'd be interested in a sibling's perspective as well. Now that JJ has a new baby brother, how can I deal with one child's diabetes and still treat them as equals when nothing is equal? So if and when you are searching for another topic to write on. Thank you thank you thank you!

making me feel for a kick from BSparl every time I...

Kerri, that ain't the D it is parenthood. You are gonna check her crib when it is too quiet. You are gonna check the crib even if it isn't too quiet. You are gonna check the crib when the cats act funny, when there is a sad movie on TV and when there is a happy commerical on TV. You will probably check her when you blood is off before you you check your blood because something feels wrong.

Just being a parent - It is awesome.

Thank you Kerri for a wonderful post. I get so much inspiration from PWD. You guys give me encouragement that Tristan will grow up to be healthy and responsible when it comes to his diabetes. But also, that he won't resent me for mistakes that I sometimes make while trying to manage his diabetes.

I hardly know what to add as everyone has said such lovely things. My little boy is now in his second year with T1 and he is three and a half. I was horrified and just couldn't believe it would get easier and be kind of routine at any point. But is does and it is.
Lots of love and reassurance and finding others who actually KNOW what you are going through all help. Do this either on line or in person if possible. The online community is amazing and so caring and supportive.
Try to find little pockets of time to look after yourself. Get as much sleep as you can manage. When I am tired I get very emotional about it all and yet when I sleep well I have the energy to help my little boy, Frank, deal with his fears and the pain of finger tests.
Huge doses of empathy for your child and yourself will help. There is no ideal way to do this. Just deal with each day as it evolves.
And as Kerri said, you are not alone. Reach out and others will be there.

Wow, I am crying like a baby right now. Kerri, thank you for that perspective. Wow. I just hope my daughter, who is 10 now and dx at 20 months, feels the same way you do when she is an adult. The ride of type 1 is difficult on parents, we are prone to worry no matter what.......throw type 1 in and wow! But the ride as a person living w/ d is much harder.

My grandmother had diabetes, and I remember how it effected her life, I remember watching her prick her finger and check her blood sugar. And then the doctors told me they thought I might have diabetes. They did more tests, and I was lucky, I didn't have diabetes. But I know the struggle, and I appreciate this post. I could feel the love you and your parents share and your desire to help others.

Okay... things a parent of a CWD should do...
1) a blood sugar is simply that... a number... it is not "good" or "bad", it is simply what it is... something you may have to correct and move on with... just a number (I still have a hard time not getting mad at myself for out of range numbers).
2) Let your CWD me pissed off about diabetes, and join in. Diabetes is not something anyone is happy about... or at least anyone I know. It flat out SUCKS, and if you and the child don't let that anger and resentment at the disease out every once in a while... there will likely be depression, rebellion, denial, etc.
3) Diabetes is not who anyone is, it is simply a disease they have. It does not define them (or me), however, it is a small part of who we are.
4) Ask "how was your day?" sincerely before asking "what was your blood sugar at lunch today?" or some variation of that... it shows that you see them as a person first and foremost, above a "diabetic".
5) NEVER show shame about diabetes, or your CWD will likely hide the disease. It's not something to be proud of really, but winning the battle of living with diabetes is something I am very proud of. Diabetes is what it is.
6) One blood sugar at a time, one day at a time, one week at a time, one month at a time, one A1C at a time... do what you have to in order to correct out of range blood sugars and move on... the past is the past. Take things as they come because diabetes sure ain't predictable!
7) LIVE LIFE - let them live their life, and YOU need to live yours as well.
8) Ask yourself... if my CWD did not have diabetes, would they be allowed to participate in ___________ (sleepover, field trip, sport, etc.)? If so... there should be no reason why accomodations could not be made to let them participate even with their diabetes.

My advice: Never, ever, give value to a blood sugar reading. all numbers are good--from the unexplained 300 to the unexpected 42. We want to be in range, but highs and lows are just pieces of information about which you can make a plan and act. Don't react to a scary high or low--read the number, plan your course of action, and just do it. Otherwise, you're setting up your kid to feel guilty when they are high or low, and it increases the likelihood that they'll start lying about numbers because they don't want to see the disappointed or worried look on your face.

My wife blogged a few weeks ago about a well-meaning comment that really gets us. "At least she'll never know any differently." I could go on and on about how that is of no help at all, but I won't.

Thanks for sharing. I look forward to your insights almost daily. As a father of a four year old daughter diagnosed less that two months ago, I am encouraged by your words and hopeful for a happy life for our daughter. I worry about my daughter constantly and have to force myself to try to focus on today and not get caught up in all of the potential pitfalls of diabetes in the future. Keep up the good work. Thanks again.

We're all part of my daughter's care team. Sometimes we call ourselves BOP (brain of pancreas) since her pancreas can't "think" for itself anymore.
Also, consider getting her counseling for all the emotions she'll be feeling when it's beyond what you can help her with (hating her body, or worse.) It was very helpful for us.
As far as sibs go, we let our younger daughter help with the lows - get the juice, washcloth, etc. She also gets a juicebox when her sister needs one.

My son was just diagnosed 109 days ago. How can I be so exact? Well, he added an app. to my ITouch and his. So...yep. There's an app for that!
So far he and I have had great communication about all of this. He is so positive. He says things like...the shots are better than the alernative if I don't take them. He says it is good to feel good again....well..most days. He was up to an A1c of 13 when diagnosed! He is 15. Someday he is going to have to be intependent with all of this but for now he says..."Mom..I need you to help me still so this isn't overwhelming to me." My niece that was diagnosed 3 months before him is 18 and totally on her own with it. She has to be though because she is going off to college. My mom tells me I have to let my son do it all on his own. That I should be more like my sister and let him do it all. He does a lot. He is mostly on his own. He does all the shots (doesn't trust me to do them anymore!) The only thing I do is keep the log book and help him w/ the carb counts and the ratio changes. He can do both...if he had to but I am more like his "Diabetes personal assistant...or secretary." I make sure he has all he needs from the pharmacy and remind him to check his bag before we go anywhere. I am also here when he needs to talk. I spend many hours on the computer..learning and learning. I hope that I am doing things right. I am doing the best I can.

Kerri,
My six-year-old son was diagnosed with T1D two years ago. Shortly thereafter, I discovered your blog. I have been "lurking," but not commenting ever since. Today I feel compelled to post a comment. This blog entry was great. I only know my perspective as a parent of a CWD. Your entry and readers' comments opened my eyes a little. I think (I hope!)I'm doing a pretty good job with my son, but still could use all the advice I can get get. Thank you so very much for this and all that you put into your blog on a daily basis. Good luck with BSparl! Can't wait to hear your good news!

Kerri, you are a real gem. That is all.

Kerri, I have tears in my eyes from reading your post and the comments. My 17 yo daughter was diagnosed just two years ago this month and after a long time of taking care of herself has in the past six months decided she doesn't want to test her BG or bolus. I have done what the doctors have counseled me to do (not nag) and worried my fool head off in the meantime. An appointment today with her amazing primary care doc (not her endro) may have done the trick in turning her around, but time will tell.
Well, I just wanted to tell you that was a wonderful post and I have hope for my daughter, oftentimes found in the words here on your blog.

Kerri, I try to keep up with your blog -- which is the first one I've found since my son's diagnosis 15 months ago that really speaks to me...and boy did I look! Like another of your commentators here, I too have started a blog to try to plug a hole -- I want to say what it's like and offer support...

Diabetes is like a rock that seems to shift around and make itself known in every relationship. It sets up and won't move, so you have to try so hard to see and understand and be genuine with each other *around it*. We are managing, but my son is now beginning to get angry at it. Probably high time, but it makes me cry. We all know we are in this together, and strong in that...but I hate the way that diabetes is now part of our relationship with our son. It has to be, and I hate it.

Just a little while ago though, I apologised for reminding him about something -- putting himself on temp basal maybe, after exercise -- I knew he was capable of remembering, but was worried...And he said, 'don't apologise, I need you to help me'. This made such a difference. I knew he understood, anyway, and was grateful to him for that. He's 14 next week.

Thank you for the post.

One comment among the many already here strikes me particularly because I am the parent of a 15-year-old type 1 son. I also assist him with many diabetes-related tasks, including logging, carb. counts, making sure he has all of his supplies and insulin. And yes, I do bug him more than I think I should about bolusing because his forgetting to bolus (and he truly does forget) has been a problem from time to time. I too, have relatives who seem to think that he should be doing everything on his own, because "he will be going off to college soon." Well, for us "soon" is still 3 1/2 years away. There is a big difference in maturity between an 18 year-old and a 15 year-old. I know that other teens my son's age, especially those who were diagnosed as much younger children, do well without so much parental assistance, but at this stage in his development I think my son still needs this kind of support and I don't think any parent of a type 1 child should feel pressured by relatives, friends or others who have little or no experience with managing diabetes to push responsibilities onto kids who feel unready to take them on.

Thank you for offering some reassurance to those of us parents who struggle every day to try and make the world right for our children who are living with diabetes. As you will soon experience, parenthood truly is like having your heart walk around on the outside of your body. There is nothing more painful than not being able to protect your children.

I am constantly second guessing myself about the best words to use or tactics to employ as I struggle to help my daughter manage diabetes. I cannot tell you how reassuring it is to hear you say that you do not resent your parents.

Following your lead, I have launched a blog at www.goodmeasures.com/blog in an effort to redirect my energy. Rather than agonizing over daily insulin doses and blood sugar checks, I am seeking ways to connect with other people and tackle those dynamics I can control. The value of this medium revealed itself to me one night while my daughter was at a sleepover and I was worried sick. Writing became an invaluable tool for me as I processed my fears.

I look forward to learning more about your journey.

Thank you.

It's very interesting to read an adult's perspective of their T1 diabetes...especially how they view their parents rolls.

I'm on the other side. The mother side. The side where You unzip the black glucometer case and try to be as quiet as possible...whether it is 3 a.m. or 5 a.m. or anytime when your daughter is sleeping. You know she needs that sleep. You don't want to wake her but you need to know where her numbers are. You have to protect her. Because, this isn't about you anymore, you have to do it right because this is HER life. Your sleep isn't nearly as important as her health. And, even though you know her Type 1 wasn't your fault, you still feel guilty.

I can see this through your mom's eyes. I can understand and empathize with her. I want to hug her for teaching you to be so independent and wonderful and that you can be an inspiration to us who still worry over our kids and wake up at least twice a night to check her while trying not to wake her up.

Hugs to you.

And, I know your mom still worries over you. ;)

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