Stumble It!
Teens with Diabetes: Freedom is Their Secret Drug
In the past few weeks, the diabetes community has suffered several tragedies in losing young people to diabetes. It is shocking and upsetting when diabetes takes the life of anyone, but somehow more so when it cuts a young life so short. Moira McCarthy Stanford is a journalist, a long-time JDRF volunteer and mom to Leigh, 22, and Lauren, 18 — who was diagnosed with type 1 at age 5. Today, Lauren is one of many teens who may look ‘perfect’ on the outside, but under the surface, she struggles terribly with day-to-day D-management. In light of recent events, Moira volunteered to open her heart about raising a teen with diabetes — in hopes that her words can help others.
A Guest Post by Moira McCarthy Stanford
Walking into my kitchen to do one of the billion chores it seems I have to do every day of my life, I was stopped short by the emotion that overtook me when I noticed what was on the counter.
Used test strips. Three of them. Not in the trash; not put away. Now before you think I’m a neat freak, consider this: the surge of emotion I felt was pure, undiluted joy. Because the test strips littering my granite countertop were evidence of the most beautiful kind I could ever imagine.
They were evidence that my daughter was checking her blood sugar.
Moira & daughter Lauren (photo: 2006)
Why, you ask, would this send me so over the moon when she’s had diabetes for 13 of her 18 years on this earth? When the total finger pricks she’s done definitely number in the 40-thousands? Because, you see, she’s that truly puzzling soul: a teen-aged girl who has had diabetes for more than a decade. And while I struggle to get my head around it, that has meant — more times than not in the past five years — periods of checking seldom if ever, ignoring blood sugars until they skyrocket to stomach-retching highs, “forgetting” to bolus for snacks (and even meals sometimes) for her and a constant state of combined worry, anger and sadness for me.
I tell you this because I think it’s time that we all just stood up and admitted what is true in many homes: our teens — even the brightest, smartest, funniest and most driven of them all — have a hard time dealing with the day-to-day demands of diabetes. I know first-hand. My daughter was the “model patient” for oh-so-many years. She started giving herself shots just weeks after her kindergarten diagnosis. She understood the math of bolusing before she knew how to spell “algebra.” She went on the pump as the youngest kid in the Boston area to do so at the time, and figured it out like a trooper. She was seven then, and I can honestly tell you I’ve never done a site change myself. She willingly strapped on a CGM when they were big and ugly (it didn’t last long, sadly), and understood its function. She is her high school student council president. She was on homecoming court. She was voted Most School Spirit by her fellow students. She’s a four-year varsity tennis player. She’s anchor of her school news and its nominated for an Emmy this year. She’s spoken before Congress twice and spoke as part of the Democratic National Convention in 2008. When he was alive, she had Senator Ted Kennedy’s private cell phone on speed dial. So far she has been accepted to every college she applied to. Yeah, she’s quite a gal.
So, one would think, the idea of pricking her finger to check her blood sugar six or so times a day and then counting her carbs and pushing some buttons on her pump must not be such a big deal, right? It’s just something one has to do and that’s that, correct?
Think again. Because diabetes is the one thing that trips my daughter up. Constantly. It started the summer before she turned 13. I’d yelled across our club pool for her to check her blood sugar and she just was not in the mood to do it. Instead, she tried something “new.” She fiddled with her meter for a bit and then yelled back across the pool to me, “I’m 173!” I nodded, reminded her to correct, jotted it down in her color-coded log book and went on with my day.
She told me months later that was her turning point; the moment she tasted the “drug” she’d struggled with for years. That drug is called freedom. That day, she realized that I trusted her so much, she could pretty much do or not do whatever she wanted. The idea of not checking was so delicious, she still says today she thinks she must know what drug addicts feel like when they try to detox. She skipped testing more and more. By fall, she started skipping insulin doses too. And as she told me after she landed in the ICU and almost died, as sick as it made her feel physically, the emotional high of DENYING diabetes any power in her life (and yes, I do see the irony here) made that horrid feeling all worth the while.
Lauren (center) with friends at the 2009 Walk to Cure Diabetes
So the ICU trip was my wake up call. It call came clear; she fessed up. I worked at being more in her face and actually looking at the meter and the pump. Her A1C came down. And by the next summer, I was back to being the trusting mom again. She never did land in the ICU again, but her blood sugars have suffered. She seemed to have two good weeks of doing what she should, and then she’d fall apart again. As she grew older and was not with me often, it became easier and easier for her to hide her secret. And as much as she intellectually knew what she was doing was wrong, the addiction held tight. After a particularly jarring A1C one year, she tried to explain her struggle to me.
“It’s like I go to bed at night and I say, ‘Tomorrow morning I’m going to wake up and start new and do what I am supposed to do. I’m going to check regularly and take my insulin. I’m going to bolus every time I eat. And starting tomorrow, it will be fine.’ But then I wake up and I just cannot do it, Mom. Does that make any sense?”
Ummmm. That explains the success of the Weight Watchers Program. We mere humans want to do right and start fresh. We know well what we have to do, and yet… we stumble. Of course I understood. But the thing was: it’s her life she’s messing with. Each time she stumbled again, my heart hurt more.
I could never admit any of this to just about anyone, either. My non-diabetes-world friends would say something like, “Well, isn’t it just a matter of discipline?” Or, “Well, you need to just take control!” And even my diabetes-world friends would judge. Everyone’s kids seem to have an A1Cof 6.3. None of them mind checking, and they all fully understand why they should change out their site every three days even if it still seems pretty good (or so they all say). I’m the only bad mom. My daughter is the only bad diabetic. That’s what I thought.
Until I started to be honest about it. Lauren spoke before Congress about her struggles and the line of people waiting to talk to her afterwards stretched out seemingly forever. There were either kids who had done the same thing and not admitted it, parents who feared their children were doing the same, parents who wanted to figure out how to keep their kids from doing it, or kids saying “OMG. You totally told my tale.” Then I started to hint to D-world friends that all was not ducky in our house. A few brave souls reached out to me and told me — privately — that they, too, were struggling with their teen. Still, I sit here today a bit shamed as I write this.
After all, I am my daughter’s protector. I am her defensive linebacker. How could I let anything bad come her way? I mean, diabetes? I could not block that. But complications? That’s on my watch. Good Lord.
But here is the thing: I really believe that by addressing this openly, we are going to help millions of people and even save billions of dollars. What if there was no shame attached to your teen with diabetes rebelling? What if it was no different than, say, admitting your kid skipped their homework and got a zero on something (what kid hasn’t done that once?) What if instead of hiding in shame, teens — and parents of teens — had an open forum to discuss their situation and find ways to make things better? It’s time for the non-compliant teen and his or her parent to come out of the closet.
I believe this will bring us closer to a cure. How? Because, first, the sad coincidence is that the adolescent years are years the body is ripe to start on the path to complications. Tight control is vital. And yet, teen hormones make it tough enough to do when you try hard, and hard to want to try at all. Talk about some mixed up stuff. So what if we could find a way to help teens stay in tighter control? That would save hundreds of millions of dollars in health care for hospitalizations now, and perhaps billions of dollars in healthcare cost for complications down the road. Of course the real “Cure” is the answer, but wouldn’t a good, smart, small, easy-to-use artificial pancreas help bridge this horrid gap?
I mean, what if the first people the APP would benefit are those who studies showed did the worst on the CGM trials? Because the reason they did the worst is simple: THEY ARE TEENS. Like my daughter, their chemistry is messing with them physically and emotionally. They grasp onto this crazy idea that the terrible feeling of constant high blood sugars is a fair trade for losing the feeling of obligation to their disease. So, give the obligation to a cool little tool. Heck, take it away when they are 23 if you want. If all we do is create a world where teens and their parents can cry “uncle” and a good tool will be handed to them, won’t we already have changed the diabetes world dramatically?
The sad thing is this: some mom (or dad) out there with an eight-year-old with diabetes is going to read this and cluck her (or his) tongue and say, “I’m glad I didn’t raise my kid that way. I’m glad my child doesn’t do that.” She’s going to be smug; she’s not going to agree. I know this because I was that mom. I had it all figured out. And look where that smugness landed us. So if that person is you, I don’t want to hear it. But should you ever need support and understanding if you face this, I’ll be here for you.
My daughter is doing better this week: thus the test strips littering my countertop. Her last endo appointment was a nightmare. Her A1C came up high and her endo told her, in no uncertain terms, something that had been in the back of my head: if she does not change her ways and prove herself, she will not be heading off to the amazing college so far away that we’ve put a deposit on for her.
I hate that while other kids are stressing over roommates, she is figuring out how to break years of difficult diabetes struggles. I despise that she really does have to take this on the right way once and for all. But, as I smile through tears at the litter on the counter, I feel overwhelming hope. I adore my daughter. She’s strong, smart, funny and good at heart. She can do it. And the best thing I can do for her is admit that it’s hard, help her try, understand when she slips up, and work hard for that elusive better way of life for her down the road.
Moira, my daughter doesn’t have diabetes, but she’s a burgeoning teen, and I cried when I read this. Pure, unadulterated honesty is always the best policy in my book.
This was me in high shool, but it extended through college. My college experience was a bad one as a result. In retrospect, I ended up with a math degree from an ivy league school, and have no complcations, but I nonetheless feel like I threw away four years of my life feeling awful, physically and emotionally, and I have no way of getting them back.
I don’t have any advice though…I knew what to do, I kept trying to make fresh starts, I just couldn’t make myself do it.
Posted by: kt | February 25th, 2010 at 7:07 amHow honest !- Thank you for opening the door to conversation between parents, between parents and children, and for raising awareness that we must stay aware of and involved in our adolescent’s diabetes care.
Posted by: Ellen | February 25th, 2010 at 8:00 amMoira, this is an amazing post. And not just for moms and dads of T1s! As a PWD, I can say that – at 31 years old, after 16 years with T1 – I struggle every single day to find that balance between self-care and freedom. It’s the biggest problem I think diabetics face, and is why doctors all cluck their tongues about “compliance.”
When you never get a break from something like this, when you never get a day off or a moment to think about something else (because the D is always, always, always there), it is hard to maintain the energy and commitment required to take care of yourself. The diabetes wagon is horrifically slippery – I know I’ve spent all these years hopping on it and falling right back off. It’s work. It’s not fun. It can be draining. And I know I can have a lot of resentment about the fact that this is what I have to spend a lot of my time and emotional energy on.
Thanks for your post – Lauren sounds like a smart, tough cookie, and that’s half the battle.
Posted by: Karen | February 25th, 2010 at 8:14 amI’m the father of an 8 year old and I am not sitting here clucking my tongue. On the contrary I feel your pain and am fully aware I have this to look forward to. Today my daughter’s A1C is 6.3 but that will only last as long as my wife and I manager her diabetes.
Posted by: Joey | February 25th, 2010 at 8:26 amSure I have lots of ideas of how to help her manage as a teen but no clue if any will work.
I don’t see why you find this embarrassing, it’s natural for teens to rebel and push back where life is most restricting. Unfortunately for our kids this is not what party they can or can’t go to but rather what they have to do at the party and everywhere else due to their diabetes. I just hope and pray we get some good solutions for them soon like the artificial pancreas.
I hope your daughters struggle goes well
I feel like this was written for me. That all your efforts here were just for me. My son was diagnosed at 8 mo. and like your daughter, he was the model diabetic. Youngest to get a pump in our area…praised by teachers for how responsible he is, a GATE student. And now, out of nowhere, 12 years later, it is like pulling teeth to get him to test ONE TIME during the school day. Yesterday it all came to a head. I told him I couldn’t understand why he didn’t test. I asked him to explain it to me…to make me understand. And he couldn’t. I saw my bright, smart, straight A boy in front of me and I couldn’t wrap my head around it.
I think I understand more now. I know that this trasition into Jr. High is not going to be easy. But I will support him as much as he will allow. Thank you for your honesty. It was balm to a worried mothers heart.
Posted by: Meri | February 25th, 2010 at 8:28 amGreat, honest post. With a 12 year old daughter and 8 years in the D life, I can really appreciate and relate to everything you shared. Thanks for articulating so much, so well.
Posted by: Sarah | February 25th, 2010 at 8:30 amThank you for sharing your story. It’s really the emotinal side of diabetes that kills. My experiance was a bit different. I didn’t hit diabetes rock-bottom until my JR year in college. I remember calling my mom the morning after I tried to OD on insulin and asking her if our insurance had any mental health benefits because I needed to go get counceling. No one ever wants to make a call like that to their mom. Luckily our insurance did have mental health benefits and I was able to find a good councelor to help me work through my depression and anger towards diabetes. Now I’m looking forward to being a mom myself. My husband and I are expecting our 1st child in July.
Posted by: Autumn | February 25th, 2010 at 8:50 amI started crying as I read this – my 16 year old T1 niece and I were discussing this just last night.
I try not to be heavy with her – it gives her a break from Bad Mom (who isn’t, but willingly takes that role to keep her kid alive) and a place where she can “confess” some of the scary and frustrating things about taking care of herself.
My heart aches for her struggles, and I also get angry (you stupid kid!) but I always just listen.
And I know she’s lying about testing, blousing, eating – she *is* a teenager after all – and just wants to be “normal”. So if the other girls claim they don’t eat, she won’t. And if they all go wild after school with pizza and sweets, so will she. Although she intellectually knows better, it seems like she can’t help it.
Her endo told her at her last appointment that she would be dead by 40. She thought he was kidding, but I can tell she is taking it seriously because she is still talking about it. But finding her way is hard, even though 40 seems light years away.
Thank you for bringing this into the light. The more we talk, the more we understand. The less shame, the easier the correction.
Posted by: Robyn | February 25th, 2010 at 9:05 amThanks for this. We are there now. I know how weary “I” am of this disease…I can’t even imagine how my son feels.
Posted by: Charlotte | February 25th, 2010 at 9:10 amYour story brought tears to my eyes as we face similar issues with our son 17 diagnosed at 22 months. Freedom as a drug is a great explanation for it and I never thought of it that way. That is why the artificial pancreas is not the cure, because our children will still not be free.
Posted by: joan | February 25th, 2010 at 9:12 amThis is MY STORY as a mom. This is MY DAUGHTER’S story with diabetes as well. She’s exactly 13. It’s starting. I’m horrified & at my wit’s end. At our last endo appt. I cried. My daughter has it ALL together in every other aspect… so I thought this lack of care about her diabetes was just laziness or forgetfulness, but after reading this I see I’m using the wrong word. It’s freedom that has a old on her. =) A good thing in some ways, for sure, but how difficult this has been for me. Thanks for sharing your story, and what is the story of so many parents out there. It’s truly nice to know I’m not alone in my frustration.
Posted by: Staci | February 25th, 2010 at 9:14 amThis was my life as well, only with slightly less diabetes technology involved. I spent a lot of time saying “It was fine” when my mother asked how my blood sugar was. I spent lot of time not testing. I didn’t skip insulin doses until I was in college. But I did it then. And had several bad a1c’s and a doctor who loved me enough to tell me if I didn’t shape up I might as well not bother finishing college. Even after that wake-up call, it took me several years to get in the good control I’m in now, but it set me on the right path.
Posted by: Cara | February 25th, 2010 at 9:23 amBeing “free” from diabetes is a fantasy, but a fantasy that I think many of us have gone through in our lives.
Moira:
Posted by: k2 | February 25th, 2010 at 9:24 amThanks for being honest and open about the teen years with diabetes. While I’m not a parent of a child with diabetes, I was a child with diabetes who grew into a teen with diabetes, and I thought I knew EVERYTHING!
As a teenager I wanted to be like everyone else. I wanted to be normal, and honestly, I wanted to hang with the rest of my friends and not deal with D moments every single day!
It’s a delicate struggle to be a parent of, and a teen with diabetes.
Teenagers want and need to learn how to handle their diabetes so they can take control of their lives as an adult. As parents of children wth D, your constantly figuring out when to take a step back and when to stay put and not give in. !uite the balancing act for all parties involved!
Hope indeed floats, and you and your daughter are doing what needs to be done. Your both learning from the mistakes and the triumphs, and moving forward.
And you both are quite awesome!
Kelly K
This is me. 100%. I was diagnosed at 3 years old. As I entered middle school and then high school my parents started giving me more and more responsibility. I realized that I could log readings and insulin doses that really didn’t exist and they would believe me. I’d keep used test strips in my meter case and when my parents would want me to do a blood sugar in front of them I’d go into the memory of the meter and put the used strip in and come up with another wonderful number. After sometime my parents caught on and lost complete trust in me. I think the 16.7 A1C may have clued them in…
Here’s the thing, I don’t know if I could give any advice to anyone going through this. I knew what I was supposed to be doing, but I didn’t care. I just didn’t want to check my blood sugar or give my insulin.
Thank you for telling your story.
Posted by: Kay | February 25th, 2010 at 9:58 amAs a sister of twin T1s I have seen the struggle with this also. One brother more than the other. Now I have a daughter with T1 who is only 3 (diagnosised at 20 months) but I remember my brothers struggle thru teenage years and keep those thoughts in the back of my mind. Knowing that one day, no matter what I do or don’t do now, this will probably be a reality for us. I will also now remember “Freedom” and maybe will be able to put words to her struggle when the time comes. Thank you!
Posted by: Carrie | February 25th, 2010 at 10:01 amThis is our story too. Thanks so much for sharing. I had a lump in my throat while reading this post. My son, diagnosed at 2 years is now 15 years old. I always thought that because he was diagnosed at such a young age, he would get through the teen years a little better, but those hormones wreak havoc. It’s just a tough time. I also started giving him more freedoms and sometimes it works..sometimes not. But all in all I give him so much credit.
I have been so fortunate to find a group of of moms in my area who all have kids with diabetes. There are about 6 of us and we have become such close friends, and meet every other month for dinner or drinks to talk about issues. It is so therapeutic and I have always known that we all go through this. They are my lifeline!
Posted by: Vanessa | February 25th, 2010 at 10:11 amThank you for being so brave and sharing this story.
When I was in high school, I felt so “different” from my non-diabetic friends. Unhappy with my stocky, diabetic build, I starved myself and exercised to excess. I knew that if I did these two things that I could take less insulin and, therefore, loose weight. This would work for a month or two until I would binge on junk food and then struggle with the resulting highs (and disappointment in myself) for the next day or so.
We didn’t know back then about the psychological effects of this disease and I didn’t know that what I was doing was extreme. Even today, I think our medical teams often ignore our psychological health and, instead, focus on the physical. But this is so short-sided. We cannot keep up with the regimen required to maintain our physical selves if our minds are not healthy.
Posted by: Nici | February 25th, 2010 at 10:12 amThank you, was very inspiring. You are a great writer too.
Posted by: terry | February 25th, 2010 at 10:57 amYour story is heart-wrenching and seldom told. The psychological element of this just not wanting to perform anymore seems to just take hold as you described like an addiction. It sounds like you guys need more help to turn this around. Like a therapist trained in diabetes if you have access in your area.
I’ve worked with two diabetes therapists (Joe Solowieczyk and Wendy Satin-Rapaport) and they advise treating not doing diabetes tasks like any other task/responsibility a teen has. When they perform, they get rewarded, when they don’t, they get privileges denied. It might sound harsh but they say it works.
I couldn’t say it would work for you and your daughter but now’s the time to be looking outside what you’ve done to find a solution. riva
Posted by: riva | February 25th, 2010 at 11:43 amThank you. My son is 7 and has been living with T1D for three years. The teen years are what worry me most for all the reasons you describe. I just sit tight right now, plugging along, taking it one day at a time, hoping that when those years hit, there will be something better out there for PWD that will make it easier and less stressful. But if not, it seems like now is the perfect time to start planning the best strategy to soften this impact. As Kay herself said, she doesn’t know if she could provide any advice even having gone through it, so I expect there are no easy answers. But it’s valuable to be mindful of what likely lies ahead.
Posted by: Lorraine | February 25th, 2010 at 12:35 pmAs far as the shame you feel, I understand that, however, clearly, you are an amazing mom and have an amazing daughter and truly have not one thing at all to feel the slightest bit guilty about.
Thanks to both of you for sharing your story (and for Amy for bringing it to us).
Thank you. Thank you for opening the door and ushering shame out while welcoming reality.
It’ll be several years before I have a D-Teen. Until then, I’ll be paying close attention to those who have gone before me…hoping to figure out where to turn when it happens to us.
Posted by: Wendy | February 25th, 2010 at 12:58 pmMy daughter was DX’d w/Type1 16.5 years ago at age 2.
She’s at college now and probably doesn’t test as much as she should, but still she’s testing regularly because she’s always complaining about not having enough test strips and fighting w/our insurance for more.
She looks at testing differently. Testing gives her the freedom to do what she wants with diabetes. Once she’s tested and has a number, she is in control. She can choose to eat something she’d like or exercise or bolus or do whatever. Without testing, she’s in the dark and held hostage by this disease. With the information she gets by testing, she is free to make her own decisions (or ask us for input, which still happens).
BTW, there is no such thing as a “bad” number, no matter how high or low. The only bad number is the one you don’t know and can’t react to.
Posted by: Linda | February 25th, 2010 at 1:25 pmmoira:
Thank you for this outstanding article. As you know, I lost my 32 year
daughter from the complications of Type 1. This could be her story.
Thank goodness your ending was and is better than mine
I am still ordering and giving your book to parents.
Regards,
Duke Roos
Posted by: duke roos | February 25th, 2010 at 1:59 pmThank you Moira and Lauren for heartfelt words and thoughts. I am the mom of a 7 year old gal with T1. I promise to always admit that I don’t know it all. I don’t even know half of it. I just wanted to thank you for your honesty and giving me a window into the world we will one day enter.
Posted by: Penny | February 25th, 2010 at 2:01 pmI think your honesty with Lauren and your willingness to share your journey with all of us out here will only bring you positive things. Thank you.
Thank you for the reality check – I have been complaining about the dLitter and forgot to focus on the fact that my daughter (recently dx T1) is happy and healthy and tends to cooperate. For now.
With this child, our 4th daughter, I have tried to “choose my battles,” but you are right. This is a sign of Victory! The recent trauma she faced was horrifying to us all and now she feels comfortable enough with the equipment and supplies to casually leave it lying around like dirty socks! (This realization has me choking back tears.)
It has been scary, sad, and exciting as my older girls tested their own freedoms, but freedom from diabetes as a “drug” terrifies me because of the damage it leaves.
Moira, I appreciate your candid story. The details will help so many parents!
Posted by: Wendy | February 25th, 2010 at 3:08 pmI feel lucky right now. I was diagnosed with Type I on my 16th birthday – way back in 1972. At the time, the only Type I diabetic I knew was my cousin’s best friend (we’ll name her “Anne.”) Anne was 5 years older than me, and had been diagnosed at age 1. Her parents measured her urine sugar daily (initially by squeezing out her diapers.) They measured every morsel she put in her mouth. When she hit adolescence, they told her she was on her own now. She’d go to dinner with my cousin (who was on Weight Watchers) and order regular soda when my cousin ordered diet soda. She’d eat anything and everything she pleased (all the while taking a single shot of Lente, I believe, daily.) God only knows what her A1C was back then (the test hadn’t been invented yet – nor had blood glucose meters!)
Well, I could tell, even then, that Anne was not healthy. I decided to live my life with diabetes differently than she did. The last time I saw Anne was at my cousin’s wedding. She was blind. I understand she passed away, of bedsores, at the age of 30, sometime after her diagnosis with kidney disease. (I was 25 years old when Anne passed away.) I HATE this disease, and I don’t know how it is that I got lucky enough to have made the decision that if I DIDN’T take care of myself, diabetes would win, whereas if I DID, it wouldn’t have power over me. It’s not fair that Anne was not as lucky. Why does this disease not choose its victims more carefully?
God bless all of you who are raising adolescents. I cannot think of a more difficult job. I keep praying for a cure to this disease. IT IS NOT FAIR THAT CHILDREN SHOULD HAVE TO BE DIAGNOSED WITH TYPE I DIABETES! A cure cannot come soon enough!
Posted by: June S. | February 25th, 2010 at 4:14 pmMoira:
Posted by: Renee | February 25th, 2010 at 4:15 pmIt can’t be said enough – NO ONE should ever have to do this ALONE. Diabetes is so capricious, so insidious that just when we think we have it all figured out, it reminds us that we DON’T. So we do the best we can, day after day, battling on against a relentless force, hoping that if our kids “hit that wall”, they’ll still be able to “bounce off” without too much “visible damage”. But the “invisible damage” that your poignant tale underscored so beautifully is a whole other aspect that NEEDS to be acknowledged & addressed, along with the litany of complications. I never realized how my daughter’s perception of MY feelings added to her burdens, until one day I blurted out “I HATE that you have to deal with diabetes”. At that point she had had diabetes for years, but what SHE had always seen was a “cheerleader” mom pushing a “can-do” positive approach- which made her think she wasn’t ALLOWED to say how much she hated it…..It was a liberating & revealing moment for us both. Diabetes was still in the room, but it didn’t have quite the same power over us at that moment.
warmly
Renee
Thank you Moira for sharing your story. You are both doing everything right – as much as can be expected of any normal human being dealing with an infinitely complicated and challenging condition.
When I was first diagnosed T1 at age 15, my mom — whose side of the family has diabetes — would say: “If I could take this illness away from you and put it onto me, I would do that.” “I wish it were me instead of you.” It made me feel angry, because I WANTED it to be someone else instead of me — I didn’t want to have it! It also made me feel overwhelmed and guilty because she felt intense anguish over my illness. But at 15, I was not able to manage my mom’s emotions about my illness, let alone my own. So I stuffed my own emotions. And I rebelled by not taking care of myself.
It took until I was about 24 years old to start to manage and control my own illness. I needed psychotherapy to disentangle my confusing adolescent years when puberty, sexuality, and breaking free from one’s parents – got merged with needles, insulin, hypoglycemia, testing, etc. 20 years later I am now in great control. But it took outside help to get there. So moms, please remember not to burden your kids with your own feelings about the illness. Get support from other adults like the moms group mentioned above.
Above all, let your kids know that it’s not fair, it stinks, it’s OK to be angry, and that they are not “bad kids” when they must act out their anger. If my story is any consolation to you, I spent a decade being pretty reckless in my D care, and I haven’t had complications as a result, because I righted myself in due course.
Posted by: T1 in Boston | February 25th, 2010 at 10:41 pmThis was me in high school, too. Though I never knowingly skipped a shot. But I made up a lot of log entries. I hated disappointing my parents with a high bg, so magically all my bg numbers were perfect. (I still don’t like drinking water, because it feels like a punishment for high bg.) When I went (far) off to college, I realize there was no one to disappoint but myself, and started being a lot more honest with my endo.
Just this week I put on a temporary cgms. As I was filling out the food log, I got that old urge to lie about what I just ate. But what good does it do to lie to yourself? I’m paying a lot of money to do this, and it will be worthless information if I can’t be honest with myself?
Posted by: mollyjade | February 25th, 2010 at 11:57 pmMoira,
Posted by: Lisa | February 26th, 2010 at 9:01 amThank you so much for sharing your story. As a parent of a “tween” who has a had diabetes since he was 4 I am definitely finding this new and complex stage challenging enough without diabetes thrown in to the mix! More attention should be paid to the specifics of what tweens and teens with diabetes go through ( and strategies for parenting tweens/teens with diabetes) at that already difficult stage of life. I am routing for Lauren and for you!
Lisa
Kudos to those of you who are telling your adolescents how much YOU wish they didn’t have Type I diabetes, and how you unfair it is that they do. I’ll never forget hearing my Mom break into tears when she got word that my brother (2 years my junior) had been diagnosed with Type I, just two months after I did. Neither of my parents has Type I (or Type II) diabetes. They were shocked and horrified, and very, very sad for their children.
Posted by: June S. | February 26th, 2010 at 10:40 amI am an Aunt of a 19 year old diabetic who was diagnosed at age 5. He is rebellious. He doesn’t check his blood hardly ever. Has been in the hospital at least 10 times in the last year for off-the-chart high blood sugar levels. He doesn’t want to work, and is currently collecting unemployment from two jobs (lasting less than 6 months at each and quit both.) He bounces around from family member to family member and takes what he can get. His parents pay his medical bills. We’ve shouted, cried, pleaded, begged, talked until we are blue in the face. He was put on depression medication and is supposed to go to counseling, but he only went once and sometimes goes days without his depression medication. He’s a mess. WHAT can a person do to reach him?? I’ve thought getting conservatorship over him and then getting him admitted for help. But, where??? I cannot stand back and watch him do this any longer. The “silent” injuries he is doing to himself will someday reveal themselves. HELP! Anyone?
Posted by: DAS | February 26th, 2010 at 1:14 pmMoira, I’m not sure you remember me but I’m Margery P.’s daughter. I’m sure you and my mom have talked about this but I have done everything your daughter has/does do. I think this blog post is so important for parents to read. Thank you for writing this. Thank you for all the work you and my mom do in trying to find a cure for this disease.
Posted by: Adriana | February 26th, 2010 at 2:46 pmLike Lauren, I am 18 years old and have had diabetes for 13 years. I know exactly what it is like to have diabetes and be a teenager. I totally agree that as a teenager, I have looked to gain more and more freedom. I enjoy just as much as anyone else “sticking it to the man.” There is one thing, however, that I will never be free of… diabetes. As much as I want it to, diabetes will never go away. Simply forgetting about it will not negate the effects that it has on my body. If my blood sugar is high, it will be still be high whether I test or not. There are plenty of ways to be free in life, but not taking of care of yourself is not a logical one. In no way does making yourself feel awful, and putting your life in danger, prove a point to anyone. You are only punishing yourself by not testing. I have never even considered lying about my blood sugar, and can’t understand why anyone would. There are definitely times when I just don’t feel like testing, or changing my set, but it’s not really something I have a choice about. You need to take care of yourself, bottom line.
Posted by: Michael V | February 26th, 2010 at 7:06 pmIt’s taken me a few days to read this (thank you dear friend Moira for sending me the link). After all, I’m not here to scare any of you. Most of you know that my 13 year old son, Jesse, died unexpectedly due to complications of his diabetes on 2/3. It is still raw and I’m guessing it will stay that way. He would have “celebrated” his 10 year anniversary of diabetes on 3/3. Instead, all of his friends will be wearing hats with his name on them and diabetes tshirts in his honor that day – and every year after that.
I don’t have to spend time here explaining the amount of advocacy my family has done since he was diagnosed. He, himself, outlined it to me in his very last essay written at school entitled, “My mom is courageous.” I received that letter two weeks after he died. Imagine the bittersweet pain of reading my son’s version of what an amazing mom I am, when I feel like I failed.
I was never a tongue-clucker. But we had 9 years of ZERO issues. Puberty hit and my son took advantage of my trust when he would yell “172″ when he was really 400. I can’t turn back time.
There is a reality here: Jesse was more mature than most adults I know. He knew what he was doing.
I’ve spent 10 years telling newly diagnosed families that diabetes is not a death sentence. Heck, I created a documentary about that topic! And for me it is a death sentence.
I invite you to read a poem written by Joe Brady – a man who has lived his life with type 1 and recently completed Ironman Wisconsin as part of our documentary. He says Jesse lived out a LIFE sentence, not a death sentence. He chose to live it.
Our kids – your kids – are amazing. I’ve spent a couple weeks wondering where I fit and what message I hope to carry forward. I will continue the fight because I refuse to let my other children develop type 1 diabetes. And I continue to fight so that we once again remind ourselves that high blood sugar is not BAD – it just IS. My type 1 adult friends have told me that they keep separate meters – one they take to the doc for downloading, and their “bad blood sugar” meters. WHAT? I was floored. They bring the “good” one to the doctor. And I don’t blame them. They don’t want to feel bad.
If you would like to read more, http://www.triabetesdocumentary.blogspot.com
best,
Posted by: Michelle Page-Alswager | February 27th, 2010 at 8:56 amMichelle
The late onset Diabetes is a slow moving Diabetes and is usually misdiagnosed as Type 2. This Type is considered slow onset because the pancreas still produces some insulin and has not yet reached the Type 1 stage. Typically, at the time of diagnosis, insulin therapy is not yet required. This type usually occurs in adults past the age of 30.
Posted by: Disease Awareness for kids | March 1st, 2010 at 11:54 pmI too have an amazing son – his values, his character, and his humor are admired and noted by all. He is a junior in high school, a multi sport varsity athlete, smart, hard working, and he has never given us any trouble. Until he was diagnosed at age 15. He was GREAT for a year, then puberty, etc hit, and there are times when he just wants to forget he is different, in fact, he won’t wear the CGM while in – season, he does not want the boys in the locker room to see it…We do not nag, but we do check in regularly, and we have, in fact, punished him if he is not diligent for an entire week. I know he will outgrow it, it takes a good parent to stay on top of it all without being too crazy and making it the only thing we talk about. He has too much other great things going on to spend all out time talking about diabetes. thanks for the article, LOVED it!!
Posted by: Lyndall Hauver | March 3rd, 2010 at 2:40 pmI am the father of a soon to be 17 year old daughter that is going through the same things that Lauren’s mom is. My Emily is a super bright girl ( 5 GPA for 1st half of Junior year ) and also is a terrific athlete. We have been dealing with her D since she was 2 1/2.
Posted by: John Schmalbach | March 5th, 2010 at 10:34 amI would say if our U.S. Health Department would spend the money on developing a non evasive blood glucose meter instead of wasting billions of dollars on so many useless ventures we would solve a lot the problems our children have dealing with the ordeal of checking their blood sugar.
By now I am sure the meter would be very small in size, but no – they are too many drug companies lobbying against something that would take money out of their pockets that they make selling the strips that cost about a dollar apiece.
It is LONG overdue time that our Government starts taking care of their most important assest – our children!!
While I found this article a bit uplifting, it was disturbing also…here’s why:
Posted by: xim1970 | March 6th, 2010 at 11:11 amMom is taking her daughter’s diabetes too personally. Her article sounds like “I’m trying to do everything for my daughter’s health”. Mom, you can’t. I’m a T1 diabetic, and I try my best to make sure that my parents don’t worry about me. I don’t tell them that my BG isn’t so good, but I would if it would put me in the hospital (again). No need to worry about my occasional 210…worry about the 470!
The other thing that bothers me about this article is this: “Her A1C came up high and her endo told her, in no uncertain terms, something that had been in the back of my head: if she does not change her ways and prove herself, she will not be heading off to the amazing college so far away that we’ve put a deposit on for her.”
What was her A1C? 20? I carried 13.5 for my early teen years (diabetic for 29 years now). You will NOT die by carrying a 13.5 for 5 years (as I did). Not healthy, but not a death sentence either. Sounds like Mom is a bit overconcerned, as are some doctors. Not a good practice to “shame” a diabetic into better control.
It was really hard for my mom to come to terms with my sister’s diagnosis. She was diagnosed at three years old… It was so hard for our family to get used to an insulin regime and counting sugars.. but we’re adjusting. You can make it! It’s definitely not the end of the world.
Posted by: LSS | March 10th, 2010 at 3:28 pm-Sylvia
What an amazing and heart felt story, your blog is very touching, thank you so much for opening up about parenting a child with diabetes, it was really incredible to read.
Posted by: Max | March 15th, 2010 at 12:55 pmAs a mother of a diabetic teen, I can relate to this story. It helps to know my daughter is not the only one who struggles with control and is not honest about blood sugar levels. It has been 10 years. Thank you for your honesty. I needed to know I am not alone.
Posted by: slky | March 18th, 2010 at 9:11 pmYet another incredible writing from you Moira. Your words echo the very thoughts and feelings I, and thousands of other parents of T1s experience. You are an amazing writer, an amazing D mom, and such an inspiration to me!
Posted by: paula | March 23rd, 2010 at 6:40 amOMG!!! I am typing this through my tears, I can’t believe how much I can relate not only to your posting but to all the people who have responded to your blog. I have a 16 year old daughter, dx’d 2/17/2000. She too was a model patient up until she hit middle school. We went through skipping blood sugar checks or yelling out fake numbers to me, a trusting mom, she started skipping corrections, she even skipped long lasting injections (always telling me, trusting mom, she had taken them). She was ended up in ICU 5 times her 8th grade year with DKA!!! I am the only one that cares for my daughter and inevitably hear from others about having to “tighten up”, check her meter daily, have her write her numbers down…things that happen for a little while and then stop, over and over again.
Posted by: Heather | March 24th, 2010 at 8:39 amI thank you for writing this blog and thank everyone for their honest responses!! I’ve been told by doctors and nurses that this rebelling is common but had yet to “meet” anyone else going through the same experience that I have been dealing with. My daughter will be 18 in 2 years and I am terrified!! She has talked at times as though death would be an acceptable trade off to not having diabetes anymore. How do you as a parent make your child understand that it isn’t acceptable and life doesn’t have to be so miserable?
Any T1P please feel free to friend me on facebook!!
Dear Parents,
You need to get your kids’ friends involved in their diabetes care.
I was diagnosed with Type 1 at age 20, in college. From the first day, I was responsible for my own care. Fortunately, I had already passed through the difficult teen years. But I was greatly helped by meeting other women in college who also had diabetes.
If you can find a college-age mentor for your teenage child, this is a great gift to their health. They need friends (in addition their parents and/or doctors) who think that checking blood sugar and staying healthy is important.
As they grow older, they will share the burden of caring for diabetes with their peers, friends, girlfriends, boyfriends, and, one day, their spouses. It’s best to foster these supportive peer relationships now.
Posted by: Francesca | March 25th, 2010 at 12:30 pmThis story is so my Cassie-Nae and me. I just wish she made it out of the icu last time. she had only been 3 times. Once when diagnosed, second sick at gma’s, and last when she died from cerebral edema due to dka. My message to the world….To all diabetics…test yourself often and don’t pretend…take care of yourselves Be an organ donor Cassie-Mae’s last heorics was saving lives with her own. Wish her friends mom just called me cause maybe she’d be home.
Posted by: Regina Locken | March 30th, 2010 at 2:31 amThanks so much for sharing your story. My son is 9, diagnosed almost a year ago. I applaud you!
Posted by: Suzanne | March 30th, 2010 at 8:35 pmI have a 14 year old son who is doing the same thing. and i am not sure what to do it is a battle. He thinks i am smothering him but if leave it in his control he does it on purpose so they will send him home from school. He lies n cheats i am still crying from the story i feel like some one else does understand becouse everone i know makes me feel like i am not careing for him. some even say well r u new at this. He was diagnosed 5 yrs ago we have had r ups n downs with it he is now on an antidepresion. high a1c, hospital vists n i am lost. they even talking of half day school r home bounding him becouse of the way he is doing he is on a pump n my husband thinks we should put him back on shots. should i take all back all cotrol. i am afraid
Posted by: donna | April 5th, 2010 at 10:19 pmThank you for sharing this. It’s very, very scary – my T1 daughter is only 3, diagnosed a year ago. So I guess we have all this to come. I hope we will manage to deal with it when it hits….reading this sort of thing can only help prepare us for it better and help us learn from others’ experiences. Thank you!
Posted by: Kerry Cracknell | April 7th, 2010 at 9:22 amThis is not something that only teenagers deal with. i will be 29 in july and i have had type 1 for 9 years now. i struggle with these same feelings everyday. it is a control issue with me. i like to be in control and i hate going to check my sugars and knowing that i have NO idea what number is going to pop up on that screen. i like your daughter have my good weeks and bad weeks and i tell myself the same thing everyday…tomorrow…tomorrow will be the day that i will get it right. unfortunatley i have been in the ER more time that i can count my A1C is crazy and i have recently been diagnosed with diabetic gastroperesis, which is a stomach disease. please pass this on to your daughter, there are tons of diabetics that feel the same way she does and all we can do is realize we are human and that we make mistakes and take it ONE day, one finger stick, one shot or bolus at a time. Thank you for sharing you story it gives me hope and i think i will go check my blood sugar! Thank you!
Posted by: Michelle | April 7th, 2010 at 11:13 amI felt like I was reading a story about my stepdaughter who now is taking better control after he ICU admission and a BS of 1080 and almost dying. No that was not a typo. Watching your child walk around weighing 78lbs at 20 years old with an A1C of 16 is heartbreaking. As a parent you want to do something but at this point she is an adult what can you do. Thank you for sharing your story its so great to know we are not alone. I also have a son who is wonderful, most of the time with managing his diabetes and we are heading into his teen years and I know its going to be hard. The best advice someone gave me is, make him own his disease, he has to live with it his whole life not you. As a parent we take on the role of being diabetic and we are not. I do thank god that my childrens disease is managable while others are losing their children to life threating illnesses. Don’t give up hope our kids will continue to thrive. I will not complain about those used test strips on my counter any more my eyes are open to that at least he is checking his blood.
Posted by: Heather | April 7th, 2010 at 4:54 pmThanks you!
Thank You for sharing!! Unfortunately I know exactly how you feel…my now 11 year old daughter was diagnosed @ 6 & recently hospitalized twice w/in 30 days due to “highs”. All because she “just wanted to be like all the other kids & not deal with it!” Thankfully she’s doing much better now….but as you know that doesn’t necessarily lessen the worry or heartbreak I feel every time I have to say “What was your sugar?!?!” or “Let me see your checker!”
Thank You Again,
Praying for the CURE!
Posted by: Trina | April 7th, 2010 at 5:32 pmTrina
Thank you for this! I was diagnosed at 18mos and am now almost 21. This is my story. I’m told that when I was little I was the “perfect” diabetic, but the only memories I have of my diabetes are horrible endo appointments where I was yelled at because my A1C wasn’t a perfect 6, and my parents were berrated for not taking better control. (when infact it is not their disease at all! It’s mine!)
From preschool-8th grade, I was the ONLY student with T1D in our school system. Teachers were not happy to have a diabetic student, and my parents had to fight tooth and nail to allow me to be in regular classes and not special needs. Imagine that! Special needs classes for an A/B student because she has diabetes!
In high school I realized I had more freedom, and started skipping breakfast blood sugar checks. And by my freshman year in college I was hardly checking at all (or bolusing). As I write this now ( finishing my Junior year in college as an Occupational Therapy major with a minor in Psychology) I know that I have not checked my blood sugar in probably close to a week or two. <– Oh I know how dangerous this is, and all the horror stories that should come with that statement, but like your daughter I get the energy to be great with my diabetes for a week or two then I'm back to not caring.
I feel horribly for my parents, who know that I do not take care of myself, but I don't want to disappoint them anymore by not being the perfect diabetic, where I am near perfect/stride for perfection in all other aspects of my life.
I am tired of being the only T1D (even in college) I know, and feeling like I am the only T1D that doesn't have her D-life under control.
This was an amazing story to read, I am so glad to know that I am in fact NOT the only person in this situation! Thank you
Hope for a cure!
Posted by: Colleen | April 8th, 2010 at 8:22 amThank you for this wonderful. I know exactly how you feel. My daughter is only 11 and we had to make two trips within 11month for the same reason. I blamed myself for not double checking each time she tests. I think she just wants to be like everyone else. I will more understanding of her now that I have read your story. Thanks you so much and lets all pray for the cure.
Posted by: Eddie | April 8th, 2010 at 11:04 amI met you at the JDRF Children’s Congress when my son was a representative. I want to thank you for being so honest about your experiences. I suspect more often than not teens and college students struggle with wanting to be free from diabetes. I think I am also not alone in feeling that I didn’t measure up to the other perfect parents with perfect kids, even though we tried to do everything “right”. My son is now 17 and through counseling we are working on getting him ready to be on his own in college…walking the fine line of being a support without being a hindrance. Just today an old high school friend of mine related that his college age niece had just spent her second time in the ICU in 3 months, having been found unconscious by her roommates. These are the realities and fears we live with, and it helps to know we are not alone.
Posted by: Terri | April 8th, 2010 at 5:54 pmI’m a type 1 diabetic, am now 26, and was diagnosed at age 11. I also went through the stage of just not caring about my diabetes, especially when I left home and went to university. From my experience, I had my parents and doctors telling me that I needed to be keeping better control, but I just didn’t care.
I’m not sure whats changed but in the last 6 months I’ve started testing more and am learning about carbohydrate counting (I’m from NZ, from the sounds of things we are lot more behind in Diabetes care than America! My doctor basically told me the other day that pumps aren’t a good idea because they are so much work, she didn’t even mention all the benefits!) I’ve reduced my HBA1C from 9.2 to 7.5. I’m not sure that anything would have changed my attitude when I was younger although I do think knowing other type 1 teenagers and being able to discuss how much of a pain having diabetes was might have helped. It might be because I recently got married and we’ll want to have kids in the future, so my diabetes isn’t just affecting me, its affecting my husband and potential children.
I’m sorry I don’t have any helpful advice, but from the few other diabetics I know, they have all gotten over this period in their mid 20’s, so maybe its just a phase that most of us go through. I do know though, that its not lazyness, and I’m sure that most of you don’t accuse your diabetic kids of that, and if you do tell them that they’re lazy, I can tell you right now that that will not work at all! Maybe try rewarding good HBA1Cs, or ones that are better than they previously were. Even though I’m not a parent I know that your childrens diabetes must cause you so much stress, but just remember that your children can’t take a day off from diabetes, so if there is the occasional slip up, its not the end of the world. In the end its their decision how they deal with things, and you don’t want to ruin your relationship with them by alientating them by always going on about their diabetes.
Posted by: Karen | April 19th, 2010 at 9:38 pmThank you Moira for your brave story. My youngest sister, Maria, has T1D and she is 26. My mother calls me continuously about her ups and downs. My sister has blackmailed my mother with the threats of not take her insultin for whatever she wants… rent for her new apartment… food money… you name it. I want to be kind and understanding but my heart is resentful and angry. Maria boozes it up with alcohol every chance she gets… and about three month ago, she landed in the emergency room with TKD … and an $11,000 hospital bill that she can’t pay. Death did NOT scare her at all. And she looks to mom to pay it all. I tried to talk to her … and she kicked me off her facebook page and refuses to take my calls. It is depressing because I think that she may be the first of us kids to be put in the grave. My mother lost her husband in November … she should enjoying herself… travelling the world … visiting her other children … but no … she has to babysit a 26 year old. Then, I feel guilty for not being nice to Maria … and I get very depressed about the whole situation. It is a constant DRAMA… I often think if it is this bad for me… it must terrible for my mom. If I had a wish, it would be that my sister would take care of herself.
Posted by: Debra | May 4th, 2010 at 9:28 amThank you Moira, and all the rest of you for your comments. THIS was exactly what I needed to read today, as we wait for blood test results to confirm (or not!) if my 16 year old T1D daughter has an abcess that needs to be surgically removed, caused by high blood sugars. The emotions of her diabetes are what we all seem to struggle with the most. I so appreciate your honesty. It is truly nice to know that as we struggle day to day, we are not alone in our battles with this disease, and with our children! As we drove to the endocrinologist the other day, and she raged, mostly in fear, I came to realize that she really has not accepted diabetes as a part of her life. She was diagnosed 5 years ago. But I am still left wondering…what can I do to help her facilitate that acceptance? Counseling? Support groups? I have suggested these over the years, but she tells me she will refuse to go. Her A1C has been consistently high the past year or more. The docs say she could go blind before she gets to college. Once to the hospital for DKA. But none of these things have been a wake up call for her to take on the responsibility and acceptance. And then, it becomes an emotional struggle for all who live in our house. As many of you know, we’ve tried to set limits, but she breaks them. Sometimes she lies…my sweet girl who I know knows that lying is wrong…will lie to get what she wants without having to test, or correct. I need some advice on where to go next…..
Posted by: Kristen | May 10th, 2010 at 9:21 amHi Kristin,
First you can feel free to find me on facebook if you want. Second, DO NOT panic too much. I got so tired of threats — and the endo saying she will go blind before college is a threat . . . she won’t. You take her for eye exams, right? I mean, yes, we want our kids to have tight control and high a1cs are horrid . . . . but how about a little empathy? We are moving to a new endo (well my daughter is) and the first thing he wrote was “Listen, not knowing details yet I do know you’ve been a teen. I have MANY patients who struggled in teen years and have now had diabetes and few if any complications for decades. It’s not too late. Don’t worry. We can make it work.” OMG – I almost screamed I was so relieved to get some CARE in our “care.”
Anyway, I do have some ideas. Find me on facebook — Moira McCarthy Stanford — and we can chat.
Posted by: Moira | July 28th, 2010 at 6:48 am