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Inspired by the Parents.

Parents of kids with diabetes - it's a full time job.Last night I had a chance to sit with some parents here in Norwalk and talk about our collective experiences with diabetes.  These parents were taking care of children with diabetes, ranging from the newly diagnosed three year old to the newly diagnosed 13 year old, and everywhere in between.  High school angst, the issues of disclosure, the pursuit of "perfection," and all those other issues that parents of kids with diabetes, and the kids themselves, are dealing with.

"I was invited here to talk about how to raise a child with diabetes without losing your mind.  But I'm not really qualified to talk about that sort of thing, to be honest.  I'm not the parent of a diabetic child.  I am the diabetic child."

The parents at this group were wonderful, all actively engaged in their child's health, just trying to make sense of what diabetes doles out every day.  We were a small group - about 12 of us in total - so the conversation flowed pretty smoothly and comfortably.  And we hit upon some very intimate issues.

Like menstrual cycles and their impact on blood sugars.  (Remind me again why I'm talking about puberty and my female hormones with strangers?)  Or the dodgy things I did as a kid to lash out at my diabetes or my parents or at life in general.

I admitted to hitting the old school glucose meters with a touch of rubbing alcohol so that the result would come up lower.  I also admitted to knowing that my mother hid ice cream sandwiches in the frozen vegetable boxes, but I ate them despite her efforts. 

"I wasn't the best kid, and definitely not the best kid with diabetes, but I made it through okay.  And my parents and I?  We still talk.  And we still like each other."

They laughed.  

"What advice do you have for parents who are dealing with teenagers?  What's on the 'don't ever say that,' list?"

And the only thing I could think of was the epic "We."  

"It's just that one pronoun.  The 'we.'  We need to test our blood sugar.  We need to take our injection.  We have diabetes.  This always drove me nuts because unless my mother was testing her blood sugar or my father was taking an injection, they weren't diabetic.  They didn't know what the lows and the highs felt like, only what it felt like to watch the highs and lows and to feel those moments externally and emotionally."

The group nodded, understanding.

"But it wasn't until I was older that I realized the 'we' concept did apply.  It wasn't just me.  It was all of us, as a family, living with this disease.  And even though I was the one who had diabetes, my parents were dealing with something, too.  Diabetes has a lot of different sides to it, and it doesn't just affect the person who actually has it.  So it is a 'we' thing.  We live with diabetes, as a family.  And it took me a long time to realize that."

One of the parents piped up.  "How long?"

"Like ... yesterday morning?  Maybe Friday, at the earliest." 

She laughed.  Another parent asked, "When will my kid figure that part out?" 

"I don't know, honestly.  Everyone's experiences vary.  For me, diabetes wa a dragon that we, as a family, fought together.  We didn't fight one another, but it was us against IT.  And now, I'm a married woman with a husband who goes to the doctor with my instead of my mom and dad going, and my mother has no idea how this insulin pump works or how the CGM works or what the hell 'basal insulin' is, but she still has the same protective instincts, and still works hard to take care of me."

"Even just this past Friday, at my Joslin appointment, I saw this CDE I'd never met before.  This lady was critical of every number, every moment of my management, and yelled at me for doing too much while she yelled at me for not doing enough.  I was feeling pretty emotional after 45 minutes of this, so I went to take a break to calm down, leaving the CDE and my mother alone in the room together."

"And I guess while I was gathering my wits in the bathroom, my mother, who had been sitting there quietly and watching the fireworks, leaned towards this CDE and said, 'It's been a long, emotional day.  And you are supposed to support her, not rip her apart.  I think you should tone it down a bit, don't you?'"

"I guess you don't ever age out of being the parent of a kid with diabetes."

Diabetes is a journey, and for some of these parents, they've been on it for many, many years.  For others, they are just beginning to take those first steps.  And for me, with more than two decades with type 1, it was beyond amazing to see them gathered together around the table to find answers, find support, and find inspiration.

Comments

Thanks for posting the bit about the "we". I was only diagnosed at the age of 27 (just 3 years ago) just 8 months after my husband and I were married. We were in the middle of trying to start a family since we had been together for a long time and didn't see any reason to wait. Diabetes saw a reason!!! I have gotten upset with him many times over the past few years because I think he doesn't understand what I am going through, have been through, and will go through. Your post reminded me that maybe I don't know what he is going through....how much he worries about me and how out of control he feels when I have lows or highs that can't be explained. I've been particularly hard on him the past 9 months as we are expecting our first child in the next three weeks!!! A huge monumentous occasion in anyone's life, but I take great pride in doing it as a woman with diabetes. He has been the most supportive man - he went to every single doctor's appointment (4 a week) over the summer since we are teachers and he didn't need to work. He never complained once - he took time off for some of the appointments in the beginning too and has been an angel the past few weeks since I have been on bedrest and not allowed to do anything at all! Your post reminded me how lucky I am to have a supportive husband who is part of the "we" of diabetes. Thanks Kerri!!!!

Thank you Kerri for this post. It has me crying. I am trying so very hard to be a 'good,' no, 'great' parent of a T1 diabetic child. It's hard. She is only 7 and I worry about the lasting impact of all the worry on her (Talk about a vicious cycle!). Trying to figure it out, trying to do always what is 'best' for her. I always hope I am doing enough.

Penny - You are definitely doing enough. It's a hard job, but you can't forget that it's not your fault. It's DIABETES doing this, not you. You and your child have to work together on this, and there is no perfection. It's just finding a healthy balance between good mental health and good physical health, in my opinion.

((( hugs )))

Kerri, Great post "WE" your "blog followers" look forward to and appreciate your posts. Thanks.

I wish I knew real-life Kerri. You are simply amazing! What would I do every day without your blog for inspiration???

It's cool that you can give such a great perspective as the D child now all grown up.

I love it.

Having made that transition from a CWD to an AWD like you, I think we see what our parents did for us in a whole different light once they're not so involved. It's almost like we've stepped outside the situation to see in and I almost feel like it's harder on parents with a CWD than it is being an AWD. Does that make any sense? I am so thankful for my parents and how they raised me and my D. My heart goes out to all the parents you met with and all the others around the world too!

This was great. I was actually not diagnosed with Type 1 until I was an adult, but feel while I "own" it, others in my life have to be educated and aware. My friends are who have taken care of my dog when I was hospitalized and brought me Diet Dr. Pepper, for example. Book club members watch what they put into food they are making and give me a head's up. Another friend recently switched from doing a 5k to a fun walk with me 'cause my sugar was dropping and I was afraid to run. A lot of people in my life weren't familiar with diabetes before me and we're learning together. Having said that my pet peeve is still someone thinking they know more than I do or want to say what I should/shouldn't be eating/drinking. It's a long road, but with daily research and a bajillion finger sticks, I'm aware.

You are such an inspiration Kerri!! Just made a JDRF sneaker for you for the dexcom lobby!

Thank you so much for both posting this and doing things like talking to these parents. It IS a kid with diabetes that they need to hear from - one that has 20/20 back vision!

Whenever I make comments on blogs, I usually have something to add... here, nothing. Just had to add my thanks. :-)

Geeze Kerri, talk about turning on the water works!! I know, it's probably just the hormones, but every word you said is so true. I've found myself in the position to offer 'advice' to parents as well, and am often speechless. I don't know what to say and I don't know what I would tell myself as a CWD now that I am an AWD to help make it all easier, to help me do what I need, or to understand the 'why me'. But you are so right, we all made it... and I still like my parents, too!! Isn't that the ultimate goal :)

My mom’s a RN so she knows the body and grew up with me when I was diagnosed at 13 months old. We talk a lot because it is still hard on her some days and it makes me a wreck sometimes with as many complications as I am going through now. We always were very real with each other and always knew what the disease was and that there were going to be complications because of how old I was when I got it, my organs totally developed with this disease so I barely got half a chance.

The one thing that my mom had never been able to forget and says she still had a hard time with is when I was very little and did not want to get that shot, she would directly say “You need this to live, and you will die without this.” Yes, it is very real and no punches pulled. Other people may look at it as cruel and unnecessary, but it was not. My mother had a hard time doing that and she had to do it for me. It had to be installed at the young age so I carried it with me forever, because I have this disease forever.
I swear when I go through tough times, it is harder on me thinking of what my mother and stepfather and sister and niece are goig through. Your right there is many aspects to the disease.

At a very young age I decided I was not going to be treated like crap from ANY diabetic educator or doctor. I tell them when they start to get nasty and it gets tense that they need to settle down and talk to me, not belittle me and act right, because at 10 years old, I already had more experience with the disease than they did and trust me, at 5’4” , my red head can yell just as loud and when I get to yelling like your yelling at me, the gloves come off and I will say something I regret, so I do my best to keep them in check like I keep myself in check. There is no excuse for educators or medical people to be yelling like that, they are your doctors and educators, you pay them they need to be real and they need to be polite but firm, non codling. Go ahead and fight with me. I’ve been fighting all my life. Get on my team or find someone for me that will want to WORK with me.

Great blog and I’m glad you were the one to speak with them. I truly admire you for all the wonderful accomplishments and things you do Kerri.

I wish you well

Robert

Yay for moms and dads who stick up for their d-kids, no matter how young/old they are! I love, love, love that she spoke up at your appointment.

What a great post Kerri! I wish that I could have been at that meeting! :) I'm so jealous. LOL I think it's great for parents of D kids to get a an insight from you. It does give us a lot of hope. Thank you for being so involved! :)

Thanks, Kerri...from the bottom of this PofCWD's heart.

This is why we love reading your posts. You are giving great advice to kids and parents!! My mother in law warned me that my husband was a "candy wrapper hider." I find candy wrappers in the most interesting of places. Behind the TV, in the couch cushions. All learned behavior from his teenage years.

Kerri- I always LOVE to hear from an adult diabetic what their life is like, how they managed the teen age years and how their relationship with their parents are. You give me hope to get through the tough times and to see that she can learn to take care of herself, be healthy and live well.
So glad you got to meet some d-parents. I don't know what I'd do without my d=blogger moms!

will there be a day when I don't know what basal is?or what CGMS is? will they come up with new terms?

How did your mom let go? I guess I'm doing it now little by little.

Oh, your CDE was mean to you? That's horrible! ...I don't understand why? :( Thanks for sharing.

It's possible my parents and I have a little of a wall, a kind of defense that I'm sure has to do with all the crap we all went through after I was diagnosed. But I know for sure they care even when it's those times that I have to remind myself. :) That's important. ...I wish I'd gone to diabetes camp. LOL :D Oh well.

Great post Kerri. I love reading your perspective and insights.

Diabetes definitely affects the entire family. When people ask how *I* am doing, I usually change the subject saying that it's not about me.

I write regularly about my daughter's diabetes and would love to connect with other d-moms (and dads, too!).

Delurking to say what an amazing post this is.

about diabetes, sure, but IMO it can so be extrapolated out to myriad diseases/experiences (learning disabilities etc).

Carla

Thanks, Kerri - you give me hope that someday my daughter will look back at what her dad and I did and understand in the same way you do now. She sure as heck doesn't get it at the moment. Being 12 is hard enough, but 12 with diabetes....ack.

Hugs to you and to your mom for setting the CDE straight!

I second what Penny said. Casey is now almost 14 and has been T1 for half of his life. I worry, try to be the "good" mom and still wonder if it's enough. As for the CDE, I'd lose the doc before I'd lose Jane, his CDE. She is a godsend. Kudos to mom. I'd have done the same thing..bet she did it with a smile on her face.

what a great post! I know I am guilty of the "we" and "our"....I'll say "well, our bg's have been pretty high at night and I need to work on our basals." I don't know where to tread with this. In lots of ways I want Ian to know that it's not his alone to deal with - that I consider it just as much my problem to solve, not his. I wish we had a crystal ball and I could see how this turns out for us.

So..when you get to MA..you know that JDRF has these great "coffee" nights - usually at people's homes where they discuss all sorts of things - Barton hosts a lot of them but many of them are out in the Boston burbs... ;)

How very true, we are fighting the dragon together. Thanks for the great post.

Your mother is pretty much awesome. ;)

Thanks - I so appreciate your blog. It gives me hope. We are coming up next week on two years of diabetes with our 5 year old daughter, who handles it so much better than me sometimes. Thank you for your insights - it is so encouraging!

"I'm not really qualified to talk about that sort of thing..."

Well I'm qualified to comment on that, double qualified, from my perspective you are as good a voice to listen to as there is.

Oh and if mom ever needs someone to play bad cop to her good cop, I know a few thousand other parents who can go tune up the CDE on general principals.

LY/MI

Dear Kerri,
Thank you for taking the time out of your very busy, hectic, changing life to come to Pediatric Endocrine and Diabetes Specialists Monday evening in Norwalk to speak at our parent group.

I have been taking care of children and young adults with type 1 diabetes for over 15 years. In all this time, I have never met someone who was able to really "teach me" the different things I learned about living with diabetes that evening. I can promise you, the way in which I think about caring for children with diabetes will always be somewhat different, and somewhat better, after my experience Monday night learning from you.

I wish you luck with your move and I look forward to continuing to read your blog.

Elizabeth Doyle

Thanks for the beautiful post.

I completely relate. Especially to this: "my mother has no idea how this insulin pump works or how the CGM works or what the hell 'basal insulin' is, but she still has the same protective instincts, and still works hard to take care of me."

I'm calling my mom now. Asking if she's free for lunch. *hugs*

Hey Kerri,

Sorry for the "late to the party" post - thanks so much for coming to the support group meeting. There's nothing better for us parents than to meet someone with diabetes that is so up-front, honest, and down right funny. My daughter maintains her sense of humor in spite of the fact that for her diabetes is "old" - 6+ years. She said the other night that "it was time to quit diabetes" as she was doing the umpteenth glucose test of the day. She was smiling the whole time so I know she meant it but wasn't sad about it at the same time. I'm counting on that positive outlook to carry her through life's challenges especially the ones that may be more difficult than diabetes.

I hope all is well and that your "new life" is entertaining and fabulous. Will miss you at the Fairfield Walk.

All the best,
Joan

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