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Discussion in 'Parents of Children with Type 1' started by theMad_D_Dad, May 14, 2013.

  1. theMad_D_Dad

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    Hi everyone,

    just thought I'd introduce myself, considering I'm not even sure I'm in the right place. Everything I'm about to say I realize I may just be reiterating what everyone here has felt, or is feeling. I just have no one else to talk to about this sort of thing so I feel I must get it off my chest.

    My daughter is 6 and was diagnosed at 2, so for 4 years she has had to put up with the ignorance of others who have no clue how hard this is, but make their petty, infuriating comments just the same. While I feel like punching every damn one of them in the face, I don't. For her sake.

    I'm angry. All the time.

    I hate this disease, with everything inside me.

    It's especially hard when we go out and she see's other kids her age enjoying "satan's snacks" without having to be checked and I hear her say "Dad.. I wish I wasn't a diabetic." I want to grab her, hug her tight and cry, But I don't.

    I can't.

    I have to be strong for all of us. I have to pretend like they're the ones who are suffering. As I reply "I know honey, but think of it this way. When that kid grows up to be a 450lb adult, they'll be saying "man. I wish I would have eaten better when I was a kid."

    If you met me in person I don't seem angry at all, I'm probably the least serious seeming person you could ever meet. But, deep inside I'm clinched up, wanting nothing more then to lash out at the entire world for doing this to my little girl. Even though I realize how irrational that seems, obviously it isn't the world's fault.

    But, people who don't have to check sugars 10 times a day, replace an infusion set at 3 am in the morning. (or worse still, being awaken to the sounds of vomiting, and large ketones because her tubing got pinched) Like everyone of you have at some point I just wish I could do that thing from the Green Mile, take this horrible affliction from her and instill it in myself. I'm an adult, I've had my time to live a life. She hasn't, and it breaks my heart.

    More then I could ever let her know.
     
  2. Christopher

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    Welcome.

    Everyone has their cross to bear and your daughter's happens to be diabetes. It is normal to be angry about it but if after 4 years you are still angry "all the time" you should seek professional psychological help.
     
    Last edited: May 15, 2013
  3. nanhsot

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    I think you might find this place useful, if only to know you've got lots of company and support.

    Diabetes sucks, no doubt. But I can't take it away, I can only provide him with the best resources, the best knowledge, the best supplies. That's my role at this point, I research, I educate him, I work extra hours to pay for things. My son is a teen and heading to college soon, so it's his disease to manage on a day to day basis and has been since he was diagnosed at 15. He's often irritated by it, definitely considers it a nuisance, but thankfully I wouldn't put anger in his range of emotions. He's accepting and he's gone on with his life. I would caution you to not let your daughter adopt your angry stance about it, she has a wonderful life to live, one that has a few extra steps before eating...but nonetheless a full active, NORMAL life. I wouldn't want my child to go through life in anger so I guess I'll just hope for her sake that your anger isn't something she also decides to live with.

    I hate this disease with everything in me too. I think you will find some help in knowing others who are walking the walk.
     
  4. Beach bum

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    Hello and welcome. This is a great place for support and learning.

    First, anger is a normal part of the grieving process. Just a few thoughts on some of your comments.:
    I just have no one else to talk to about this sort of thing so I feel I must get it off my chest.

    Reading your entire post, you seem to have a lot of pent up anger. As we all know, this is not healthy for anyone. Would you consider seeking counseling?

    My daughter is 6 and was diagnosed at 2, so for 4 years she has had to put up with the ignorance of others who have no clue how hard this is, but make their petty, infuriating comments just the same. While I feel like punching every damn one of them in the face, I don't. For her sake.

    We've all crossed this bridge. We just remind our daughter that people say things because a)they don't know about the condition b)they don't think before they speak.

    I'm angry. All the time.

    I hate this disease, with everything inside me.

    Again, counseling could be a big benefit. Check with your clinic to see if they have someone on staff.

    It's especially hard when we go out and she see's other kids her age enjoying "satan's snacks" without having to be checked and I hear her say "Dad.. I wish I wasn't a diabetic." I want to grab her, hug her tight and cry, But I don't.

    I can't.


    But you can just go on as usual, remind her that yes, it stinks, but it is what keeps her healthy. Just do it and move on. Don't dwell on it. And snacks aren't satanic, it's something that can be enjoyed in moderation.

    I have to be strong for all of us. I have to pretend like they're the ones who are suffering. As I reply "I know honey, but think of it this way. When that kid grows up to be a 450lb adult, they'll be saying "man. I wish I would have eaten better when I was a kid."

    I don't think it's fair to single out people to her like that. We explain to our daughter that Type 2 occurs for many reasons, but one is improper diet and lack of exercise. When she's having a bad day we don't use that as an example because a)it's unkind b)comparing T1 and T2 is comparing apples to oranges.

    If you met me in person I don't seem angry at all, I'm probably the least serious seeming person you could ever meet. But, deep inside I'm clinched up, wanting nothing more then to lash out at the entire world for doing this to my little girl. Even though I realize how irrational that seems, obviously it isn't the world's fault.

    You are only hurting yourself and eventually your family with these pent up feelings.

    I'm an adult, I've had my time to live a life. She hasn't, and it breaks my heart.

    I'm sorry you feel this way. My daughter is 11, she skis, dances (competitively), runs track. She is living life to it's fullest. She's an 11 year old who enjoys being active...and just happens to have diabetes. Everyday I love waking up to see her (and her sister) continue to blossom and grow.

    We are patients at Joslin Diabetes Center. This weekend we were at an event where they honored people who have been living with diabetes for 50+ years. We had the honor of meeting a gentleman who has had diabetes for 70+ years. He and everyone in that room continue to live life to its fullest...and they just happen to have diabetes.

    IMO, I would seek out help to work on these feelings and to see your daughter for who she is. A lovely child who has hopes and dreams and just happens to have diabetes.
    For your daughter I would look into sending her to a diabetes camp. There are many day camps for younger kids around the country or you might consider attending Friends for Life sponsored by CWD. There's a link to it on the home page here describing it.
     
  5. Turtle1605

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    I hear you...LOUD AND CLEAR. Nobody understands this terrible disease unless you are in the trenches with it! Not even my close friends or my mother understands what a toll it can take. I wish I had some words of wisdom for you but I don't. However, I will share that I found this forum just after my son was diagnosed and I was and still am eternally grateful for the support. Just knowing that there are others who understand means a lot!

    I will tell you that in response to my very first post on this forum, I received a private message from an adult male (I think mid 50's) who was diagnosed as a young child. He explained to me how his life has been quite "normal" despite the disease. He has traveled extensively, has a great career, a great family and most importantly, amongst his family and friends, he is the healthiest of them all! You see, he explained to me how this disease (while it is an absolute pain in the who-who) made him learn to listen to his body. It made him learn at a young age what his body needs and the foods that are pretty much poison for all of us (just think how hard all of our bodies have to work to digest a big bowl of ice cream!). This gave me HOPE that while it is hard, this disease may be a bigger blessing than we know. I know that is a stretch but if it helps to keep my son healthy in the long run, I will suffer through the ENDLESS sleepless nights. Heck, if I'm not sleeping, I might as well know there is at least a small benefit to it!

    So...we will march on fighting the good fight until there is a cure or at least a "practical" cure that alleviates the daily struggles. And...during that time we all will continue refraining from hitting stupid people who make stupid remarks in their stupid mouths. :)
     
  6. DavidN

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    If you truly want to be strong for your daughter and your family, you'll find a good therapist to talk to.

    You can pretend that your daughter does not pick up on all of your anger, but she does. Our kids are sponges. At some level she is internalizing all of your emotional scaring.

    The disease sucks and I feel like you do ... often. But not all the time.

    In fact, I'm leaving in about an hour to go chat with my therapist. About diabetes? Maybe. Maybe not. Not sure what we'll talk about today.

    One thing I do know is that therapy has made me a better father and husband, which I think in the long run will go a long way towards helping my son manage his diabetes.

    Good luck.
     
  7. MomofSweetOne

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    I would urge you to take the suggestions of the previous posters and seek out counseling for both yourself and your family. All of us hate diabetes at times, but I wouldn't say it consumes our days. I would say far more are the days when I am overwhelming thankful for insulin providing us the sunshine moments we wouldn't have had otherwise. For me, it's definitely harder to be positive on the severely sleep-deprived days than others.

    As far as having to be strong for your family, I doubt you do. There's a very good chance that they and you would benefit from you not showing strength that is faked. Diabetes is tough, and we find crying together is healing. I've learned that when my daughter is down, she doesn't need me to be strong and optimistic about how well she's doing. She needs me to take the time to cry with her.

    Anger is a secondary emotion that comes after another emotion. Take the time to let yourself feel the pain, to grieve the death of her beta cells, and then to heal. The teen years are coming, and diabetes makes them incredibly challenging. You'll want to have yourself, your wife, your children all as emotionally healthy as you can possibly be before you enter that roller coaster. It's worth the effort.
     
  8. theMad_D_Dad

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    Counseling would more then likely help me out a lot with my anger, but that goes way beyond just diabetes
    I've felt this way my entire life but have used comedy as a coping mechanism
    because where I'm from, mental health issues are still shrouded with a stigma of being a weak person. Obviously on the surface I realize how ridiculous that sounds but subconsciously it has been beaten into for so long (25+ years) that it still has prevented me from reaching out. sort of like people who know they will die from smoking but still don't take that step needed to free themselves.
    The previous post was made during one of my "break down" moments (anyone else have those?) Where everything seems a whole lot worse then it really is. To be honest I can't blame everything on diabetes as easy as it is to do so. I was crazy long before my daughter was ever born, let alone diagnosed. But, every once in a while I have a melt down, quietly, alone, long after the kids have gone to bed.
    And oh how do I know how absorbent my kids are. But I have mastered the art of faking happiness. To me it's not so much teaching her to be accepting of other's uneducated statements. But more about standing up for herself, and not letting people think they can get away with saying whatever they want to anyone without consequence. I said this earlier in another post, but, You stick your hand in a hornets nest, you can expect to get stung. They don't care that you "didn't know any better". Life doesn't care either, it's unforgiving, and at times very cruel. I suppose I just grew up differently then most of you. That I don't let things "just roll off my shoulders" but that doesn't mean that what I teach my child is wrong.
    Granted, creating that wall between type-1 and type-2 is quite wrong, and that I will certainly take into account. But as for my style of parenting, I guess that is something we will just have to agree to disagree. You teach tolerance, I teach empowerment.
     
  9. Christopher

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    Is that really how you want to live? Is it really how you want to interact with your daughter? Faking it? As she gets older she will see the fakeness. Hey, you live your life the way you want to, that is your choice. But real, natural happiness is better than faking it, in my opinion.
     
  10. DavidN

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    Lots in your post but I'll pick a few topics.

    Of course I have meltdown moments. Stay tuned, you'll likely see one on these boards soon.

    There is stigma with therapy so you don't go? Is that what you'd tell your daughter?

    Therapy has very little to do with diabetes, rather everything to do with "faking happiness". If all you speak is German (fake happiness), then your daughter will grow up speaking German. In short I go to therapy to learn a new language so my kids don't have to grow up speaking German (faking happiness).
     
  11. theMad_D_Dad

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    I didn't mean any offense by that, only merely explaining why I haven't been. If you go to therapy I commend you, you are far stronger then I obviously. But if she doesn't realize that the happiness is faked, how is that bad? She see's a smile, so obviously that must mean happy? The same way you smile at people as they say things and let it roll off of your shoulders, is that not faked?

    My point is this, if it looks like a duck, walks like a duck, quacks like a duck, rational thinking would tell us, it's a duck. But what if really that duck was a goose, pretending to be a duck. You'd be none the wiser. I'm not saying it is the correct approach, it is just what works for me.
    I put my anguish, anger, violence, into words on a page because that is how I don't snap on people, and choke the life from their lungs. Even therapists would tell you to keep a journal, right? That is how I express myself. My writing is the pillow I grip tight, thrust my face in and scream at the top of my lungs. My daughter never see's this side of me.
    But as far as making myself happier, you are right, therapy would work wonders, and I will certainly look into that. thank you for the advice.
     
  12. DavidN

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    Absolutely no offense taken.

    Some how you got the impression that I just "smile at people and let everything roll of my shoulders". Absolutely not the case. Sure I try not to react to all instances of ignorance but I absolutely stand up for myself and am teaching my son the same.

    When I said our kids our sponges, I think they can see through the faking. Maybe not on a conscious level, but it definitely leaves an impression, in my opinion.

    I think writing is a terrific exercise. Heck, it's a form of therapy. So is coming to this board and venting.

    Please don't view my feedback as critical. I know you don't need my approval but you strike me as a loving Dad who is doing a lot of things right. Your daughter is lucky to have a Dad who cares so much.

    Good luck.
     
  13. theMad_D_Dad

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    Thank you! It may just be the sleep deprivation playing tricks on my eyes but it seems like everyone is telling me that my approach to parenting is the wrong one, as if there were any one right way to go about anything our children, or even we as type-1 parents go through on a daily basis.
    Yes, inside I feel angry
    Yes, I would probably benefit from talking to someone trained to handle my kind of crazy.

    But as for my daughter being negatively impacted, meet her, then tell me that. Diabetes is serious enough but the fact that we can laugh about the infuriating things people say, speaks volumes.

    I'm sure everyone on this board has seen this video and thought these things
    The only difference, I actually say stuff like this to people.
    I dont shake my fists and threaten bodily harm. BUT, if someone says something this ignorant to me, yes, I will let them know, and I expect the same.

    http://www.youtube.com/watch?v=LFIVVHQod5o
     
  14. Beach bum

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    I don't think your parenting style is wrong, it's different. We are all different. It may just be that you are having a bad day and it is all coming out in your writing, but from what I am seeing, there is no joy in your life. Again, it's just what I'm seeing in this post. IMO, if I was 4 years in and having these constant feelings still, I'd want help, regardless of the stigma. You say you are good at hiding your anger, but kids do see it. I have a family member with anger issues. He pretends to be happy, he puts on his game face for everyone, but there is always an underlying current there and my kids pick up on it and his kids always talk about dad being in one of his moods, not to his face, but to others. Just something to think about.
    Please take that wall into account. Who knows one day your child may go to a diabetes camp or function and meet a kid with T2 and become friends. Her vision of someone with T2 may be very, very skewed from things that have been said to her. Empowerment is great, but tolerance is needed too. It creates a much needed balance in life.

    My life is not all rainbows and unicorns. I have sought help to get through that first rough year and it did me a world of good. Overall, most days are great, but we still, nearly 8 years in, have our moments. What gets me through is knowing that my daughter is happy and healthy and that the good days outnumber the bad.
     
  15. theMad_D_Dad

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    You are absolutely right.
    I will certainly make it a point to catch myself in the future.

    I just get so mad at people for treating us like this is something we did to our daughter. As if, had we been better parents all this could have been avoided.
    But you are right there needs to be balance.
     
  16. Beach bum

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    Yes, it's one of those "you can't cure stupid" situations. My daughter, when diagnosed dropped down to 26lbs. She was 4 years old, so imagine how spindly she was. We had someone say to us "you must have given her too much sugar." Another person said (just recently) "but she's not fat."

    Generally, I try to educate people. I'm not whipping out a soapbox and getting up, but just saying a quick word or two. But trust me, there are moments when I just look at the person like they really aren't the complete idiot they are being and walk away.
     
  17. nebby3

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    Who are you angry at??
     
  18. theMad_D_Dad

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    It's more of a question of what I'm angry at, and I guess when you strip it down to the bare bones.

    Ignorance.
     
  19. Sarah Maddie's Mom

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    And let me guess, you have never been ignorant of anything, right? :rolleyes: How much did you know about living with Type 1 before your child was dxd?

    I'm not going to comment after this. You clearly have your rage and you like it - whatever. But your kid will blame herself for daddy's rage, for Daddy's bad mood, if she doesn't already. And if you think children cannot tell a fake smile from a real one then you really don't know kids.

    You want to think you're special, that your rage is special. Yeah, it's not.

    Good luck. You are going to need it.
     
  20. SandiT

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    Please let your daughter cry.

    She's going to grow up and want to marry someone like Daddy... someone who can't cry about her Diabetes when it's hard. She'll be like me... 25 years old before I ever saw a man cry. Before that, I thought that men didn't even feel things. They SAID they did, but I figured that they must not love like women do, they must not feel like we do. Their feelings were minimal... the only feeling they experienced as deeply or as real as us women, was rage.

    Let your daughter see that you worry, you hurt, and that She doesn't have to paste a happy face onto her diabetes.

    Crying about it tells her that you care. It gives her permission to grieve, too. And it shows her that men can cry, too. That even a man with great courage can cry over diabetes.

    So she won't grow up and accidentally marry the guy who really DOESN'T care, when she tries to find the one that hides it like Daddy always did.

    Forgive me if I've overstepped my boundaries, but pasting a happy face on your rage or on her diabetes doesn't help her. You giving yourself permission to be honest about YOUR feelings gives HER permission to be honest about HERS.

    I do hope that you pursue therapy. It's the best possible advice, and it's given from a place of genuine compassion.
     

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