No pictures today. Instead, here is a list of things I want you to know about diabetes.

  1. I want you to know that there is no “controlling” diabetes. There is diabetes management, there is experience, and there is a “be ready for anything at anytime”, but there is no control. We do our best to “manage” our daughter’s diabetes. But there are way to many variables that affect her blood sugar to EVER use the word control. And now that we are heading into puberty? Hormones and growth spurts and boys, oh my!
  2. I want you to know that as much as we like to talk about how normal we try to make our daughter’s life, with diabetes there is no normal. My daughter has never been to a sleepover (not even at grandma’s). When there is a school field trip, one of us parents attends to take care of her food needs and insulin requirements. Everywhere we go, (even to the corner market) we carry a glucagon kit that has a needle straight out of this scene from Pulp Fiction. Even that trip to the market requires a backpack full of stuff. When her blood sugar is high, (which is often after meals) focus and attention are strained, making tests, studying, and learning difficult. My daughter can drink a juicebox and eat crackers in bed. Without waking up. We worry every night that she will go to bed and not wake up.
  3. I want you to know that we live in a constant state of flux. Things change rapidly. One minute you are singing Christmas carols and decorating the tree, and the next minute you are in the ER and calling in to work sick for the next 4 days due to your child getting the flu. Nothing is rock solid. Plans change. We will occasionally cancel on you. Sorry. And all though we live moment to moment with diabetes, we also need to plan everything. There is rarely ever a last minute “hey, let’s go to the Jones’ for dinner”. That kind of thing requires prep. Requires advanced notice. Requires knowledge of carb counts. Requires that backpack kit full of stuff. And that needle.
  4. I want you to know that you really do need to know that new math. Carb counting and insulin ratios and looking at a pizza cut into 8 slices that has carb counts for 3 servings and some pasta that is measured dry and some that is measured cooked and now you need to add the sauce and the chicken nuggets at McDonalds have this many carbs but what the hell is the count on the BBQ sauce and knowing that regardless of what the carb count of a banana is it needs to be tripled and that Mexican food is going to need a 5 hour combo bolus plus a 20% basal rate increase and then there is sick day and and and AGGGHHHHHH!!!!!
  5. I want you to know that regardless of how well planned out and prepared we think things like her school day are, stuff still pops up. We have emergency kits in every class she attends and the office. But what happens when she is at PE and the school goes into lock down and she is shuffled into the nearest random class? Yeah, that happened. There are a tremendous amount of type 1 children that are home schooled. There are SO many variables to a type 1’s day that it sometimes seems like the only viable option. When we finally let go of our daughter’s hand at school and send her in, we are no longer there to see if she is going to trade her apple for a Snickers bar. Or to see if right at PE they are going to run loops around the soccer field or just do square dancing, or if we know that tomorrow is a soccer day and make an insulin adjustment, and instead it rains and they wind up watching a movie, and again AGGGGHHHHHHH!!!!!
  6. I want you to know that an organ inside my daughter’s body has died. Stopped working. Kaput. And we/she had nothing to do with it. My daughter has never had a Coke or a Twinkie. It has nothing to do with the way she eats or what we have been feeding her. No amount of raw foods or cinnamon or exercise is going to fix her pancreas. And I am well aware of the long term effects of high blood sugar. Telling me about how your grandma went blind, or your uncle lost his foot, while my daughter is standing there? Well that is just cruel.
  7. I want you to know that while I am in the grocery store or restaurant with my family and our service dog, I get very upset when you say “how cool is it to bring your dog with you” or “I wish I could bring my dog” or my favorite, “you’re so lucky you get to bring your dog”. Let me tell you what I am thinking. It goes like this, “I wish that my daughter didn’t have type 1 diabetes, and our dog could be home being a pet instead of here being a life saving device, and that as far as the dog is concerned, this has got to be a stressful, unnatural, unnerving experience that he too would rather not have to do” and if you happened to be the person that said “you’re so lucky” I apologize greatly for the lambasting I gave you, but really, you had it coming.
  8. I want you to know that for some parents, putting their children to bed is a wonderful experience. But for the parent of a type 1, it is the most stressful, worry filled part of our day. “Dead in Bed” is a real fear. And as a parent, having your children fall asleep in the car after a busy day at the park or the zoo can be a wonderful reminder of a great day. For me? I get worried. I want to poke her and keep her up. I want to pull over and test her every 15 minutes. When she just wants to lay her head down and rest, she is barraged with questions like: “are you feeling okay? Do you feel low? Does she have a fever?”. Even when resting there is no rest from diabetes.
  9. I want you to know that when you send your child to school with a cold, you could be sending my daughter to the hospital.
  10. I want you to know that insulin is not a cure. It is a life saving device. So are apple juice boxes and Smartees. We are still hoping for a cure.
  11. I want you to know that EVERYTHING affects blood sugar. It’s not just food. It’s heat, cold, tests, exercise, hormones, growing, getting in trouble, the list is long. You can see more HERE.
  12. Type 1 diabetes is an invisible disease. When you see my daughter, you would never know she had a life threatening disease. She runs and jumps and eats ice cream just like everyone else. But when you look a little closer, you will see the pump that is connected to her. You will see the tell tale black spots on the fingers. The hardened tips. You will notice the BS checks. The blood stains on the sheets. The backpack and emergency kit. The Gatorade. There is a lot to see if you just pay attention. If more people knew just how serious this disease was, maybe we could raise more awareness, more money for testing, fund more research. But our children are happy. Beautiful. They look healthy. And you couldn’t pick them out in a room full of non-diabetics.
  13. I want you to know that we are tired. We walk around in a constant state of exhaustion. 10pm checks and midnight checks, and 2am checks and “oh my gosh, she’s low, so I need to correct and recheck in 20 minutes, and crap she’s still low so let me give her another juice box” and before you know it the day is starting and kids need to get to school and you need to get to work, and there are alerting dogs at 1am and now your worried about the birthday party they are going to on Sunday and how are we going to handle the carb counts on Thanksgiving at Grandma’s and we need to get to the Endo’s and she said she was tired and she has a headache and how many carbs are in that tylenol and please don’t touch the dog and her BG is not coming up so I’ll give her another juice box but I know she’s going to spike at midnight and why doesn’t this restaurant have carb counts and well, let’s just say that the worry and planning and effort never ends, this disease never rests, and the sleep is non existent. We are literally zombies. Thank you Brenda for the reminder.
  14. I want you to know that my daughter is my hero. I look up to that little girl. If you asked her to describe herself, she might never mention that she’s a diabetic. She just doesn’t see herself that way. As a matter of fact, she might not ever mention it until she talks about her dog and what he does. I love that about her.

There is more. So much more I want you to know. But now, I want you to ask. Ask me anything you want to know. Or if you are a T1 or parent of, what do YOU want people to know?

Oh, and 1 more thing I really want you to know. Click this link, it could save someone’s life: The symptoms of Type 1 Diabetes

Team Blackdogsrule

Related Posts Plugin for WordPress, Blogger...

65 Comments

  1. I want people to know that as a Type 1 adult, I have these concerns for myself! I am now 41, and people see me as over weight, past 40 and assume I am Type 2- doctors do this! It is still a struggle 32 years later, and will always be.

    • I’m in exactly the same boat–40, overweight, and tired of people thinking I caused diabetes myself because of it. A new nurse at my endocrinologist’s office thought I was Type 2–and I use a pump!

      • Holly, I developed LADA in my early 40’s and was treated as a T2 until it became clear that it was not working. Now I’m 65, and people are even MORE likely to think of me as T2, because as we age, there are more and more T2s in our age group. But I’m fortunate to have an endo who understands, and my family knows to be vigilant in case I’m ever sick and can’t speak for myself. And I don’t think T2s cause their diabetes themselves, either — they have a strong genetic propensity towards it — much more so than with T1. So if anyone EVER comes at you with that nonsense, please set them straight for ALL of us, both T1 AND T2.

      • I got diagnosed as T2 at the age of 26. And I had to listen to my mum telling me it was my fault and if you had just cut out the junk food/soft drinks this wouldn’t have happened. The truth is when I was a kid I wasn’t the one buying the food – she was the one shoving the food down my throat; it was easier because my parents worked a lot and then they’d come home tired; so it was easier for them to just buy mcdonalds after a long day of work then to cook. I take the responsibility for being overweight and being unhealthy when I was on my own – it was denial on my part; but it wasn’t all my fault – turns out that diabetes runs in the family; when we visited my family in Greece I discovered that 3 of my mothers siblings have T2 (my mother hadn’t seen her family for 20 yrs so she didn’t know it was in the family). Turns out when ppl see an overweight person eating unhealthily who has T1/T2 we automatically get the blame; which isn’t fair for ppl with T1 because oftentimes they’re born with it – the pancreas is no longer able to produce insulin; whereas with T2 the belly fat is preventing the pancreas from using insulin properly to break down the sugars. A little less judgement from non-diabetics and sympathy goes a long way.

    • Sounds like we have a lot in common. I am 41 years old, and have had Type I Diabetes for 35 years!

  2. very very well said. my little girl is t1d and we have a service dog. so i can highly relate to this post.

  3. I want you to know that even tiny babies can develop T1. We almost lost our baby girl at 8 months when she went into DKA. She is a thriving 2 year old now, and we will be getting a service at the end of this year. Well said post!!!

  4. Perfectly describes life as or caring for a type 1 diabetic. I would love to see this published everywhere. Whenmore people grasp the challenges and fears of type 1 for what it really is more people will come together to search for a cure.

  5. My son is 14 and he has been diabetic for 2 yrs we came off the honeymoon period right into puberty and it has been rough..very rough. I can say I’m not perfect and neither is he we both get angry and overwhelmed because as soon as we think he is doing good something goes wrong. I am trying very hard to deal with everyone else’s judgements they all have the answers and they don’t mind telling you what your not doing right and telling what you need to do. Every diabetic is different and their bodys react different and what works for you might not work for me. I live on pins and needles everyday try to be strong and give my son some freedom but dang its hard. I pray for a cure everyday.

    • My son is also 14 and has been a diabetic for 1 1/2 years. I agree with you it has been quite a struggle with both the diabetes and puberty. My son handles it very well but I know it has to be rough for him. He can’t do the “normal” teenage things…he has to always be aware of his blood sugar count. And as the article says many things affect his number – it’s not just food. I also just try to be strong for him and let him have the freedom he needs. He is my hero.

  6. Beautifully said!! this should be published and mass distributed!!! there is no voice currently out there screaming for a cure like there is for other diseases. I have been diabetic for nearly 30 years, I was diagnosed at age 3. I want people to know that there have been so many advancements in the last 30 years, and life for a diabetic is so much better now, but it is still unbelievably hard, painful, embarrassing even, and we STILL don’t have a cure. I have been told since I was 3 how close we are to a cure, and it seems that 30 years later we are no closer than we were then. I don’t want you to tell me about it until we are there, I also don’t want to hear about all of the people you have know who have been damaged by diabetes. I don’t want anyone to tell me what I should or should not be doing or eating. I have lived with this disease for 30 years, I have danced ballet, figure skated, kayaked, whitewater rafted, camped, backpacked….I have even given birth to two perfectly healthy, full term babies who both weighed under 7lbs at birth. I have done all of this and so much more without your help, guidance, or advice, please don’t try to be my backseat driver because I know my body better than you could ever imagine (I have to)!

  7. Hearing you, loud and clear, Frank.

  8. Hello, and thank you for this wonderful, frank conversation. My grand daughter was in a coma before the doctors realized that she (at age 3 1/2) had diabetes. Rosie will be 7 years old on Sept. 9th…and I am thankful for the technology that allows her to manage this life threatening disease. I am also thankful that my daughter has the determination and strength to do all the things necessary to provide the care that Rosie needs. It is a tough disease, tough on all the family members. Right now it is a roller coaster ride, and as you said there are so many things that make this disease difficult to manage….but we will continue to hope for a bright future for Rosie. God bless you and your family, and God bless all the families dealing with diabetes.
    Diana

  9. My mom is a T1 diabetic since age 11. Back then, they knew nothing.. she went to college, married, had two perfect children ( of course. I am perfect!) She is healthy and fit. She watches her carbs, checks her sugar 3 times a day, and tries to plan for special events. When she gets the flu, Dad and I go into scare mode. When I call back home at 6 pm, and she argues with me , I know she needs to eat. Growing up, meals were scheduled at specific times and we took our own good to theme parks and movies.. I thought mom was just controlling and cheap, but she was taking care of herself. She worried about her kids, and made.us pee on test paper every few months. That is all we had in the 70s. Sorry to ramble, but this is so close to home!

  10. Well said, Frank (as always)!
    What I’d like all the parents of newly diagnosed T1’s to know is to be PERSISTENT and DEMANDING when it comes to your children’s medical care. YOU know your kids better than anyone and can tell when something is wrong and/or they’re not acting right. Be assertive and be heard!
    As a T1 for 31+ years, my greatest support came from my mom…she fought the battle with me and wouldn’t take no for an answer. Most doctors treat our T1 kids in a “Textbook” manner, but each of our cases are different and every T1 reacts differently to medications, foods, and every other aspect of our lives. If something your doctor has prescribed (or recommended) isn’t working for you, speak up and get help. And if there’s a new tool you’d like to try (pump, CGM, etc.), use it! If one doctor tells you “No, you don’t need it,” go to another doctor, call your insurance company, or call the manufacturers directly. We should always have the option to use anything that may help us manage our diabetes a little more effectively. It’s OUR world…they’re just living in it!

  11. I want you to know that as the parent of a child with type 1 diabetes, I am exhausted, all the time. It is my normal state of being now and has changed who I am. Even if I could sleep at night, which I don’t, I would still be exhausted from the worry, planning, number crunching and attempts to stay one step ahead of this disease.

    • Frank Wisneski

      Oh my gosh Brenda, how could I forget exhausted?!? I think i was too tired when I wrote this! I may go back and add that

  12. Deanie P. Terminie-Ros

    I have two type 1 diabetic sons and I want people to know how insensitive it is when you say, “It could be worse.” Yes, I know it could be worse. I know that in your opinion it isn’t cancer. I know that it is “manageable”. But I want them to know that our new normal, that didn’t exist until November 19th of last year, SUCKS and sometimes when people tell me how lucky I am and that it could be worse that I fear that I may punch them square in their pretty little non-diabetic face.

    We live in New Orleans and before now we talked pre-Katrina and since the “storm”. Now our life is before and after diabetes. My son can no longer go to Westpoint and it not only changed their eating habits or their insulin control, it changed their life plan. I dare anyone who thinks that it could be worse to trade places with me, just for one day.

    • Frank Wisneski

      grrrrrrrr don’t even get me started on the “well it could be worse”, and normally said by people with perfectly healthy children, and NEVER by someone who actually is worse off

      • I’ve been Diabetic for 14 years. Both my parents have been diagnosed with cancer. Any medical diagnosis is the worst thing ever when it has the power to change your life forever, no matter what that diagnosis is. In some ways I envy my parents because their tunnels have light at the end. My mom is now in remission and we think and hope my dad is too. There is no remission in Diabetes and I think that is the worst part. That’s what I wish people would realize. You can only adjust, you can’t get better.

  13. It always amazes me that people ask if my blood sugar is under control….then look at me sideways when I say…..not even for a day!! I am a 42 year old Type 1 that does marketing for a living….yep I drive a car around all day. To say the least, there’s not a squirrel anywhere that can store up food better than me. I walk ALOT everyday, get caught taking care of my accounts during times I should be eating, and…..battle every single day to keep it all going. I have a tender spot for the kids that deal with this horrible disease everyday. I hate it!! We need a cure!!!!! My daughter has now started exhibiting symptoms and I am devastated…..your blogs and posts are so very therapeutic to me. Hoping one day we can be celebrating a cure….thank you for your willingness to share your life!! :-)

  14. Spot-on and educational post! Im going to share on my FB page. Life PRE-; Life POST-.
    I am honestly grateful for many things, however I also get really annoyed when someone says “at least its not……”

  15. We get asked all the time how he is doing and if his diabetes is under control. What does that even mean? Is there such a thing? Ummm let’s see, a couple 300′ readings this week, a 54 today- he hasn’t been hospitalized with DKA or had any seizures yet, so I guess that would be considered under control?

    • Frank Wisneski

      That is as under control as any of us can ask for Amber :) I really due prefer the term management. We practice diabetes management

  16. Frank, I want YOU to know that we t1’s LOVE our life saving care givers – we just may not show it until when we get older and wiser. Keep working hard – you’re doing great. =)

  17. I am the aunt of a niece with Type 1 diabetes. Your post was very informative and educational. I know my brother and sister in law are going through the same challenges with their daughter. . . your story brought it close to home. I will continue to pray for a cure and for simpler ways to manage diabetes.

  18. What I want people to know is that it is not my fault. I did not cause my infection from doing something wrong. That is what happens to T1 diabetics. I am 52 and have T1 for 27 years. I just left the ER due to cellulitis and an abscess of my pump insertion site. Tomorrow I was supposed to leave on vacation. It is not my fault. Tell my husband that.

  19. I’d love for people to know that T1 can be diagnosed at any age, and just because I got it at age 43 (LADA, and I’m now 65), it doesn’t automatically mean I’m T2. So don’t tell me about the supplements or diet or exercise I should be doing that will cure me. Cause it just ain’t so.

  20. I want you to know that you must be inside my brain and my heart because you are speaking my fear and thoughts. The only difference between us is that I live half way across the world from you and my hero is Mr 13 (my Type 1)

  21. BRAVO! Loved this post. We have two in our family with t1d, my husband and youngest son. As we were well aware of the possibility that our children had a 5% chance of developing t1d we were completely unaware that it can happen so young, Isaac was 19 months old. So now almost four years later we are still learning. The part that gets me, and still does my hubby, is that there are times when it just doesn’t make sense a 300 out of no where or a 40 from the same exact “treatment”…there are days where I just want to know what the heck is going on so that I can adjust something, tweak somewhere and have a descent # so that my child can feel fine. Those are the days that wear me down, especially with lack of sleep. Anyhow, thanks for writing this great post :)

  22. My daughter has recently turned 3 she has increased peeing and weight loss had doc dip her urine and send off for uranaliysis which was all clear should i still be worried or is it possible she just has a small bladder.

  23. I enjoyed what you wrote so much! I’m 46, was diagnosed with TI when I was 5. Everything you wrote about made perfect sense and I felt like you were my Dad talking about me. Even now, I have the same issues. I get up only twice during the night to check my sugar, though. I can’t afford a Dog 4 Diabetics so I don’t let my dog out to use the bathroom before bed and that way she wakes me between 3:30 & 4:00 a.m. and I set my alarm for 8:00 a.m. to check it again. (I check it @midnight when I usually go to bed and 10:00 a.m when I get up) I am often low at least once out of those four times. I understand how you get tired of advice from others who “know it all,” but you mentioned how your daughter’s little fingers get black marks and hardened tips. I used to have those too. Then I found out that I should wash my hands in warm water, not use alcohol, use the lowest setting on my lancet device and prick the sides of my fingers. There are less nerve endings there and the sides bleed much easier. I learned that from a Diabetes Educator about 15 years ago and my fingers are never sore anymore. (I usually test 12 to 14 times every 24 hours). Anyway, I’m sorry this turned out to be so long. What you wrote was so informative and I wanted to let you know that you it was very well said and seemed very heart felt! God bless you and yours!!!

  24. I’m sorry but it actually sounds like it worse to be the parent of a type one than to be an actual type one….my life is good and I live with type 1 (since I was 11).

    I’m actually not trying to be rude. Okay I admit diabetes sucks, but there is nothing we can do about it…. so why don’t you support your daughter and look at all the positive things in her life rather than post something like this?

    Right now there is nothing that can be done about type 1 diabetes so unless you want to go in search of a cure, why don’t you start looking at the positives? You might say this is hard, but you know what it’s alot easier than living life with type one as you have made it seem in your post…

    … the only people that actually care what diabetes is like are the ones that have it, or are parents/partners etc of type 1s… and we already know all this. And I’ll just add, I don’t expect or care if other people don’t know about type 1… I don’t know anything about lots of things either.

    And I do agree with you on one thing, your daughter is a hero and having diabetes will certainly make her a strong and empathetic person. But the way she sees it is the best way, because diabetes should not define who anyone is.

    • Frank Wisneski

      Perhaps you should read the rest of my blog, and not just this one post. And you are completely missing the point of this post. I am the most supportive parent of my daughter and very vocal about fighting to make sure she lives an amazing life. Just look at this site and our Facebook page to see how well she is doing.And my part to finding a cure is advocacy. Giving a voice to those that either can’t, don’t, or won’t.

    • I so agree with you there. I have diabetes (allbeit I have type 2) but all I can say is its not the end of the world; having diabetes means you change your eating habits; you do everything in your power to manage it – that’s all you can ask for. Live life to the fullest.

    • You are so right on with your comments. My 10-yr-old grandson was diagnosed with T1D at age 6 and though he can sometimes get angry about his disease, he is another hero who inspires me every day with how he’s accepted and learned to live with T1D.
      I agree that dwelling on the negatives (and I could add about 6 more paragraphs of negatives to this blog) only makes it worse AND makes us (his village) lapse into pity parties that can only be described as selfish.
      I hate T1D as much as the next guy, but there are a lot of kids who suffer much worse afflictions and I must remember that Diabetes is at least manageable, if not controllable.
      Kudus to you for speaking against the grain

  25. I want you to know that I am not an over protective parent when I go in and fight with a school that refused to put the juice boxes I supplied in lockdown areas of her classrooms. I am literally taking steps to see that my child lives through the lockdown!

  26. I want you to know that there are people WITHOUT Type 1 diabetes or do not know anyone with it that supports what you do and appreciates the education. Me for one. I want you to know that any child who has to have her finger stuck at 2am and eat crackers and drink juice boxes in her sleep SHOULD have parents and other T1s advocate for her. If they don’t, who will?

  27. I still get asked by grandpa, after 20 years of T1, how my “control” is going. I really try not to laugh straight in my grandpas face, as he’s really just concerned. But “control”?! What is that? Sure, the last time I ate pizza, I somehow managed to not spike above 200, but that doesn’t mean that the next time I eat pizza, even with the same correction, that I won’t spike to 400…or crash to 40 before the pizza even hits my system. But that’s not going to stop me from eating pizza :)
    I do admit, and I’m not saying “you’re lucky” in the sense that non-T1’s say it, but I would love, more than anything in the world I think, to have a DAD. None of my 5 dogs are of any use at all except for total love and devotion. Maybe one of these days. Until then, I will continue drooling over your pictures on Facebook, of your real life continuous glucose monitors. (A dog sized Dexcom suit would be a really cute Halloween costume!)

  28. What a wonderful and informative post. As I was reading, it felt like my parents were writing it. I have been a Type 1 diabetic for 16 years now. I am now 31 and I fight each day to juggle everything you mentioned and still maintain a “quality of life” for myself. It is a hard balancing act, and a struggle (to say the least). That is the part that no one sees. You probably won’t know if I’m not feeling well unless it is so bad that I have to act immediately. I agree that I hate it when people say “it could be worse” or when they say I should or should not do certain things. This is my struggle, not yours. I know my body much better than you do. Another thing I would like to add is the financial burden this puts on the person (or family). All of the medication, test strips, pump supplies, trips to the doctor, unexpected trips to the ER, etc. etc. I had no idea how expensive this disease would be. With the support from my family, I have come a long way and my quality of life has improved. I now have a career as a teacher, I have an active social life and I play on a competitive, nationally ranked roller derby team. Thank you for your post. I wish your daughter and your family the best.

  29. I want you to know that I understand all your concerns, but maybe you should try harder to make your doughter’s life as normal as possible. SHE CAN HAVE IT! SHE DESERVES IT! I’m a 17 years old diabetic and the most annoying thing is my parents thinking I can’t do anything because of this damn disease!

    • Frank Wisneski

      My daughter’s life is pretty awesome. Please read more then just this post. We are off to her horseback riding lessons now as a matter of fact

  30. As a type 1 diabetic that has had diabetes for 31 years (diagnosed at age 6), I could completely relate to your post of what life was like when I was young.

    What I wish people and parents of diabetics knew…

    ~ Children living with diabetes need a relationship with God and they need counseling. Even though I didn’t share all of my thoughts, worrying that I would make my parents even “more sad”, I thought God hated me and did this to me because I was unworthy or bad and I became a perfectionist to try to make up for it… Even if your child seems fine emotionally, make sure they have someone besides you to talk to. I also felt a lot of guilt for the financial burden (I heard them argue on multiple occasions about how they were going to cover camp costs and testing strips and… and… ) and guilt for stress in general that my disease (or I) caused my parents, but I did not tell them this to avoid causing them more pain. I am in counseling today to deal with the effects of how diabetes changed my view of my self-worth and almost destroyed my relationship with God.

    ~ Diabetics are not DOOMED. Diabetes complications are not guaranteed. I always had in the back of my mind that I was doomed… the end was coming… blindness was coming… amputations were coming… the inability to have children… no one would love me… etc and i lived my life that way. In constant fear. When people found out I had diabetes, they would tell my parents to “take lots of pictures”. I also ran into an older woman who saw me giving insulin in the bathroom and she very rudely said “you better take care of your diabetes.. my sister didn’t and she died from it!”… Was that supposed to be helpful as I’m injecting my insulin?.. I was also told that complications start after 10 years so I kept waiting…and fearing… So far, I am complication free and was able to successfully have two healthy babies (which was my ONLY life goal). Now, I have hope, make plans/goals for the future, do my best with my diabetes that I can, enjoy every day and let God handle the rest.

    ~ Teach your friends and family how to care for your child’s diabetes and take lots of breaks. My parents lived in constant fear and it affected how I grew up and I have had to undo some of my wiring because of it. My parents only took a break when i went to a diabetic summer camp for 12 days a year. Had they taught my friends parents how to check my blood and look for symptoms and even how to give glucagon, I could’ve had sleepovers and had a break from my parents, which every kid needs. My parents also insisted on going to every fieldtrip and while it was fun when I was younger, as I got older, I ended up opting to not go because I didn’t want my parents to go. It wasn’t that I didn’t love them, but it’s hard enough to be “different” when you are going through puberty.

    ~ Never reward or punish for having good/bad blood sugars. And never use the word “cheat” when they finally eat something that every “normal” person gets to eat.

    ~ Never tell a diabetic what they should or shouldn’t eat unless you are their parent, doctor, or someone that they have asked for their advice in this area. It is such a shaming thing to do when you have no idea of what their diet entails or if this is their one time to enjoy something after much planning and now you have just ruined it with your ignorant “knowledge” of what we are “allowed” to eat.

    ~ Diabetics can be self-sufficient. Before I got married, I sensed my mother-in-law to be’s concern and wondered why she didn’t like me. I took her to lunch and asked her. Her response was that she really liked me but her only concern was my diabetes because they had an older family friend that had it and she required a lot of care and was a burden to the family. That was devastating to me… again I am doomed and I have no way of changing my diabetes. We did end up getting married, and 3 years later we were in a head-on collision and my newborn healthy son and my husband were severely injured. My husband was wheelchair bound for almost a year and my son (now 11) is 100% dependent for all his needs due to his traumatic brain injury and I cared for both of them while having a broken leg and collar bone, AND having diabetes. I am now a single mother of two boys, one of which is severely disabled, l live by myself, pay my bills, and manage my diabetes all on my own. Life happens to all of us… Diabetes doesn’t have to equal burden.

    All that being said, you sound like an excellent father and I hope my experience only helps you in living with your daughter’s diabetes. She is and is going to be amazing, thanks to you. I am still very close to my parents and your post reminded me how much I appreciate all that they did for me when I was younger, in the absolute best way they knew how. I owe them my life and my children’s lives.

    Bless you and your family.

  31. This is the first post I have read and I think this is a great place for him to vent. As an adult i can only imagine what hell my parents went through. I have been a T1 since I was 5 and and just starting on my 41st year. The treatment I had available to me in 1972 was one shot a day of NPH and Regular made from Beef or Pork and the only way to remotely know if I was high or low was the color in my testbube of a mixture of urine, water and an acidy tablet. It isn’t easy on anyone who deals with T1 Diabetes but everyone needs to vent at times and that is perfectly understandable. I have my down days when I just want to scream but mostlyI deal with it very well and live my life where people working with me don’t have a clue or don’t think about me even have this disease. I refuse to let it define me or use it as a crutch I think knowledge is power and that is one of themain jobs (among many others) of a parent of a T1. They can’t be with them
    24/7 so the more people that know about what it really is, is only better for their child and gives them freedom to learn how to take care of themseles. How you as a parent handle your child’s care is how we learn to take care of ourselves. I know my parents think of me as the hero but I don’t really think of myself that way but I do think my parents are true heros because they did everything in their power to make sure I have been well taken care of. So Frank, thank you for your post, people do need to realize that we dont just take a shot and eat right and that is all there is to it! I’m sure your daughter is a better diabetic both health wise and mentally because of you. Stay connected with other parents and diabetics….there is strength in numbers and we all need to be there for each other with this common bond.

  32. In many ways, I compare it to having a newborn baby again. Constantly feeling sleep deprived, overwhelmed, and worried about every little thing that could possibly go wrong. Remember that diaper bag filled with extra clothes, diapers, wipes, bottles, pacifiers, changing pad, etc? Now the bag is just filled with a meter, test strips, alcohol swabs, lancets, extra pods, glucose tablets, etc. The bag has to be restocked every night because unlike a diaper bag, where you can run into 7-11 and grab more diapers, you can’t just pop into any store and buy more pods. And just like with a baby, perfect strangers feel compelled to constantly offer unsolicited advice.

  33. Just be careful about how you demonstrate and example the tight food control or “management” in front of your children. I have had type 1 for 20 years since I was eight and I see the biggest contribution to the anorexia I went through for 5 teenage years was diabetes. Just saying it’s a high risk I wouldn’t wish on my worst enemy. I admire how you parents get through the nights. I was a lucky little girl who could feel my blood sugars and ring a bell telling my Dad to wake up and give me juice. Since day 1 I have always tested myself…the more self sufficient and knowledgable a kid can be, the better; often we underestimate them.

  34. We need more support groups specifically geared toward Type 1’s (separate groups for children, adults, and parents of T1 children), because after living with this disease for over 36 years, I can say that it never really gets any easier. It is stressful and exhausting, and often sucks the spontenaity and joy out of life! Without support groups, we are often left feeling all alone and without support, because most other well-meanining people just can’t really understand all that goes into this disease and the effect it has on nearly everything! Where are all of the T1 support groups??

    • Shanan – if there’s not already a support group where you are, check out http://www.TODF.org and consider starting your own affiliate. This sounds very much like the type of support group you are looking for!!

      • Amber, thanks for the information, but when I tried to go to that website (www.TODF.org) my anti-virus software blocked it saying it was not a safe site. Is there another way to get this information (e.g. a phone number or e-mail address I could contact for a list of groups in my area)? Thanks so much for this information!

      • Amber, I hope this comes out in the right place! Anyway, I checked out the TODF site, and it’s clearly very child-oriented, which is not what we adults need. Children and their parents clearly need support, and there is a lot of it available, but not much on the post-college adult side of the spectrum. I don’t have any parents to take care of me, nor to listen to me when I’m struggling — I need other adults who know what it’s like. And other than the internet, it’s very hard to get that kind of support. The only face-to-face groups in my community are kindergarten for T2s and that’s not what I need. I still think there is a very widespread notion that T1s are all children and it magically disappears when they’re adults, and certainly no one is diagnosed as an adult. And it just ain’t so!

        • Agree Natsera! I think having T1 diabetes for a “lifetime” is extremely stressful to live with day-in and day-out, and it would be really helpful to have “face-to-face” support groups! I hope any of the diabetic educators or endos that might be on the list will consider adding this to their services or mentioning the need for this type of group through their professional affiliations.

  35. Pingback: Week in Review 7/8 to 7/14 | Black Dogs Rule

  36. I just want to let you know that you guys are awesome parents and are doing a great job – probably something you don’t hear enough. I was diagnosed w/ type 1 when I was 7 years old and 25 years later – I am doing very well. I’m pretty sure my parents had the same thoughts, concerns, fears, doubts when it came to my diabetes but they did an excellent job. Diabetes is not an easy thing to live with but let your daughter know that it is possible. I went through puberty, high school, gym classes, sleepovers, driving (yikes), college, drinking, fast food and dating and came out the other end. I’m 32, married, employed and own my own home. My A1Cs have never been great, but I’m working on them now so I can start a family. Whatever dreams your daughter has and those you have for her are possible and will come true!! Right now – you two are your daughter’s best advocate and teach her how to become her own one day. I love my family, friends and my husband, but they will never know what its like to be a diabetic – so teach your daughter to stand up for herself, be positive and look ahead to the future.

  37. Thank you for saying there is no controlling this disease. My 13 yo. son was diagnosed 9 months ago. He is all over the map. As hard as we try we will look at that meter in disbelief! Oh, the mood swings!! Hard enough with puberty, but now with diabetes? Good grief!! I have watched my child turn from the devil incarnate back to his sweet self in a matter of minutes during a meal or after a shot. It is a heck of a roller coaster ride!

    • And what is even worse is that the “moody” diabetic is most of the times not even aware of the mood changes, which makes it very difficult for him or her to manage. I was 13 when I was diagnosed, and I had no clue that I was having the kind of mood swings that my parents saw!
      Hang in there as best you can, and try to find some support groups in your area (for your son, and for yourself), as this is a difficult disease to live with (or love someone who does)! My best goes out to you and your son!

  38. Thank you so much for writing and posting this. I have a 9 year old T1D and while I’d like to say I’m glad I’m not alone, I wouldn’t wish for anyone to have this in their life. Silver lining: I used to suck at math in my head. I’m a pro now. *sigh*

  39. Pingback: What Parents of Kids With Type 1 Diabetes Want You To Know – A Guide | Chasing Lows

  40. Thank you for this article…as a non diabetic I remain confused as to why my third date with a type 1 diabetic ended with no further contact from him. He let me find his pump….didn’t even explain. …didn’t even want to discuss it with me. Perhaps he just doesn’t want to start a sharing his particular ‘cross’. It leaves me confused and inadequate but your statements help me appreciate why he takes the stance he does…

  41. I want you to know that i’m a type 1 diabetic and I have had it since the age of 4. My childhood was normal. Yes, I had to take shots, test my sugar, and eat a certain times but I still went to sleepovers, I could still make last minute dinner plans, and a cold did not kill me and this was all before the insulin pump was around. Now i’m even more free with the pump. Stop looking for sympathy please. It’s annoying.

  42. Sorry.. Just noticed how rude my comment was. It just gets under my skin when people look at me as if I am going to fall over and die of low blood sugar. My parents acted the way you do when I was little and still do! I respect them for that but it drives me crazy. I just want to feel normal. Please don’t make your child feel abnormal.

    • I can assure you that my daughter is as normal as can be. She feels empowered, and we are bringing her up to know that she can take over the world. As parents, we do the worrying, the learning, the training. So she can be a child. As she gets older she takes on more responsibility and ownership of her diabetes, but only as age appropriate. I’m sorry you think I’m a whiner seeking sympathy. I prefer to think I’m an advocate seeking a cure. I like my version better.

  43. I love this, especially number 4. My son was diagnosed 10 months ago at the age of 13. The hardest thing for me has been the way everyone has just ignored his diagnosis and never speak about it.

  44. I want you to know that I feel like the worst parent in the world already, giving me a dirty look or a lecture when my daughters BS is HI or LOW is really unnecessary. I want you to know I need help. I want you to know I don’t neglect you or our relationship on purpose. I want you to know that I didn’t sign up for this roller coaster ride so phrases like “at least it’s manageable, I couldn’t give my child shots like that every day and Can she eat this?” … Just don’t!

  45. I am 41 years old and was diagnosed with Type I Diabetes when I was 6 years old-on Halloween! It does not have to be as ominous as you make it sound. Yes, it is not ideal to have this disease. However, there are far worse conditions and diseases that I could have gotten. I also had a difficult time in grade school. I did not even have a nurse in school, and that was back when the only way to test glucose levels was through urine! But, as a result of this experience, I am a stronger and more resilient person! Knock on wood, despite my lack of “perfect” control, I still have no major complications. Please make every effort to make your daughter feel as normal possible. Despite everything else you do, that is what she needs the most. My thoughts and prayers are with you, as I hope yours are with me.

  46. I’m a 19 year old type 1 diabetic and I was diagnosed 11 years ago in February. Reading this article and your list of point you want people to know I can understand where you are coming from because I know my mom had concerns like that when I was younger. When your child gets older they become a lot more independent though, or at least that is how I went with it. My mom always told me she wishes she was the diagnosed with diabetes instead of me and that is the one thing I hate hearing the most. Even though I know she says it with the best intentions it’s an empty sentence. I hate hearing it because if I can accept that I was the one diagnosed, everyone else should be able to accept it and move on as well. Your daughter may grow up resenting being diabetic and never communicate her feelings to you until you say one thing wrong. I know I never say how much I hate having to do 4 blood check a day (sometimes more), doing a set change every 3 days, carb counting and ratios but you learn to deal with it. I realized there isn’t anything I can do and that’s fine. Even though having the pump is a blessing and it’s so much easier then doing multiple needles throughout the day having something protruding from your side all the time sucks, plain and simple. I mean I’m 19, clearly I’d love to wear a tight fitting dress if I went out but clearly it sticks out like a sore thumb.
    Another thing is to understand is the pressure your daughter will feel when she does become more independent in her treatment of her diabetes. Trying to keep her blood sugar in target ( mine is 5-7) and trying to keep her A1C in range, which for me in nearly impossible it seems.
    Even though most of my post is somewhat negative, one positive thing that has recently happened was I started teaching two hip-hop dance classes. In my younger class there are two girls who are type 1 diabetic as well and when they saw my insulin pump they told me all about their diabetes stories. One of their dads felt a lot more comfortable leaving his daughter with us for the hour when he realized I knew how to treat a low/high blood sugar or if anything went wrong.
    Anyway, best of luck with your daughters growing up with diabetes!

  47. Pingback: Things I Want You to Know | Raising A Dia-Bad-Ass

  48. My husband is a type 1 diabetic and whenever he orders diet coke at a restaurant, people often say things like “Oh! Are you trying to watch your figure?”

Speak!