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It DOES change things

Discussion in 'Parents of Children with Type 1' started by Mama2H, Mar 2, 2009.

  1. Mama2H

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    I wrote this big long post on Ellen's post about the article and decided instead of hijacking her post I should post my own rant. Below is what I quoted and my reply. Take it or leave it, I just need to get this off of my chest.

    I have to agree with this. I wasn't going to post but feel it is important for newbies to understand that, even after 2 1/2 years, you can hate this disease. It DOES make life harder and it DOES rob my child of her CHILDHOOD! Someone said to me the other day "well, at least it is under control. It could have been cancer. She is better now" I bit my tongue and walked away but inside I was screaming "I had cancer, cancer was a moment in time, it was treated and now I am better. Yes, cancer was scary and painful and deadly but the Dr's cured it and I am alive and well today. THIS is FOREVER. My child will NEVER have relief from needles and pokes and blood and Dr's. F O R E V E R. With my cancer, I had radiation, I got sick, they did surgery, I took some drugs, and now I see a Dr 2 times a year for check ups, no blood draws, no needles, nothing. HTH DOES THAT COMPARE?

    I am sorry, I am having a really bad D day. My kid has to deal with BS that no child should ever have to. My child was one of two kids with a medical condition denied playing on the local volleyball league. I can't blame them, they are afraid of her care, they don't have to do it so why should they? If I wanted to push it I could but Hailey is happy just going along and watching :( She knows that the reason that she did not get on was because of D, just like she knows that the reason that she did not make it through cheer leading tryouts was because of D. When you have other parents and other children coming to you and saying "I can't believe Hailey didn't get in! There were girls that didn't remember their cheers that got on and Hailey did perfect. How unfair." These are parents and kids that I normally don't talk to but ah hell, what do ya do.

    Yes, it does change things for the worse. Maybe I feel it hard because my child has been held back by her D :mad:

    Sorry for the rant, bad day.
     
  2. Meghan'smom

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    Beautifully written Nicole.
    Thanks for that.
     
  3. StillMamamia

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    Hugs!! I get what you're saying.

    I think the most important thing to remember, besides that you can hate D at any time, is that it's ok to feel like you feel...as long as you bounce back soon after.
    It's not just the BGs which rollercoast, it's our emotions too.
    We're human.
    Life without D can have it's ups and downs too, but D adds a totally different dimension to things.
    This doesn't mean life cannot be good. It can! Every little wonder becomes more wondrous (sp?)!

    But it's ok to have a bad D day (or weeks).
     
  4. MamaC

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    Not denying your rant or minimizing it in any way - Hailey's disease did not hold her back. Small minded, backward looking, rear-end covering humans did.

    And that makes me sad both for Hailey, and for Mom.

    (((Hugs)))
     
  5. Jensmami

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    Nicole, this is beautiful written, and unfortunately I have to agree with you! All though I want to pretend that it does not change anything, it changes a lot for them. From smaller things (all though our kids don't think they are) like a sleep over non-invitation "oh, my dd really wants do have Jenny here for her birthday sleep over, but I know she can't, and you are so right for not letting her, you are such a great mom!" WtH, I never said Jenny can not go, but of course she did not go, because she was not really invited!

    Also, her performing career, I know she still does some nice things, but nothing like she did before, and since it is well known in the business that she has type 1, I wonder every time she is auditioning, if it will be an issue. Of course, I could never proof it!

    I could go on and on..........but I just want to say Nicole, it stinks that they did not take Hailey, it so unfair and uncalled for. What they should do in my opinion, is saying, look, we would love to take her, but we don't have the resources to take care of her diabetes, if you arrange for it (either doing it yourself or another mom), we would love to take her. I'm sorry you are having a bad d day, hope things look up soon. BIG HUG
     
  6. Mama2H

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  7. betty6333

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    Diabetes changes everything, we all try to put positive spins on it, but it changes everything because it changes us as people, kids and parents. We move forward, we try to put a happy face on and move on, but it does change us all. We parent different and they live different.
    I have 3 younger children who do not have D, my 2 year old knows what a cgm is and likes to wear (old) pods. My 4 year old will ask his brother if he needs candy when he is low. My child with D sleeps with his fingers under his pillow.
    It changes us and them.
    BUT we will do whatever it takes to keep them safe and happy.
    I agree with you guys. I am thankful that even with the bad, he focuses of the good and is patient with all of the things that have changed in the last 15 months.
     
  8. MamaC

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    Yeah, it does...did...does

    I hope someday to get to the place Michelle has found. Seriously. And sooner than later.

    For us, for now, there are no positives. Your diabetes story may vary.

    Tom was already an empathetic and self-aware individual. It stinks that diabetes has made him hyper-self-aware.

    I was already an involved mom. It stinks that diabetes has me so far up his rear that he can't poop. (Pun only partially intended.)

    Tom has lost his spontaneity to a large degree. I realize that will change when puberty ends, or when the planets align, or when Hades freezes over. But for heaven's sake, a teenager shouldn't have to plan his every move. It ticks me off when he eats and treats and then someone brings donuts out of the blue and he has to treat again in order to enjoy one.

    It also ticks me off that I can't partake of party juice (more than a little) for fear I will have to watch or treat or act overnight.

    He almost lost his LIFE to this disease at a time when it should have been easier to control, or at least more predictable. I almost LOST my son.

    I don't think either of us has had a good night's sleep in 34 months.

    But I still really, really want to get to where Michelle is.
     
  9. Mama2H

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    I agree whole heartedly Becky. Hailey almost died. I almost killed her. It isn't fair that she is so aware that she could die. It didn't occur to me that I could die until I was in my 20's :(

    Maybe, someday, I can be where Michelle is. I am not there. I am not even close. Maybe it is my personality. I hate this, I hate it every day. I put on a "happy face" for my kids, for my friends, hell, for my husband but that doesn't make me hate it any less...
     
  10. Mama2H

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    OT: anyone else not getting new message notifications? Is driving me a bit crazy today and I have a short drive :eek:
     
  11. kiwimum

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    Nicole

    I have been debating whether to post here or not. Obviously I have decided to after all!

    I agree with you 100%. I hate to admit it but I am tired of being told that it could be worse, it could be cancer, at least he won't die and all the other comments.

    I have seen many family members go through the cancer thing. And yes, it is terrible, but they are all ok now. They got their treatment, got cleared and now don't even think about it. And the treatment was all done for them. They didn't have to think about how much chemo/radiation they needed, it was all decided by Doctors. I get tired of measuring insulin, deciding to increase/decrease doses, which insulin to change, making sure the carbs balance the insulin. I am jealous of the exposure cancer charities get. Why can't my child get that same amount of exposure and sympathy. Hello, he has a life threatening condition too!

    I am not saying that I want Tyler to have cancer. Far from it. But I don't want him to have Diabetes either. ( I am in no way trivialising cancer. It is a horrid horrid thing, and my experience is with adults, not children.)
    And I agree that D has robbed us of things. It has robbed us of spontaneity, of the ability to go with the moment.
    It has robbed us of peaceful sleeping without the worry of undetected lows or seizures.
    It almost robbed us of our happy marriage but with work we are back on track.
    It almost robbed my husband of his sanity, but with help he is back on track too.
    Diabetes is always there, maybe not at the forefront, but always somewhere in my mind lurking. Is his headache because his BG is dropping? Is he hungry because he is low? Is he grumpy because he is high? Is his bg because of sport/food/insulin/stress/weather?
    Why can't he have a headache because he just has a headache! Why can't he be hungry just because he is a growing 13 yr old who is hungry! And so on.

    But it has also given us things. It has made us realise that those we thought were friends, really weren't and now we don't have to waste our time on them.
    It has given me a knowledge of label reading, ingredients in products and carb factors, all at a level that really is unnatural for a SAHM!

    And now I am capable of disabling a criminal by blowdarting a syringe of novorapid into the thigh, causing his almost instant collapse, thus allowing my escape. How can I not be grateful for that!
     
  12. Becky Stevens mom

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    I was talking to a friend one day, her daughter has aspbergers syndrome this girl gets straight As and high honors. I was complaining about the d how much time is spent on it how Steven will not be able to go for sleep overs with his friends. My friend looked at me and quietly said" Becky, at least Steven can make friends, my daughter doesnt know how to and may never be able to interact with people in that way" she had tears in her eyes. Diabetes for us is like a very important but unwelcome guest in our home kind of like our past president I guess:D. It needs to be treated with the utmost care and respect but I wont hesitate for a second to kick its a** out the door when a cure is found. God bless
     
  13. betty6333

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    LOL --- send me one and i'll tell you , and send you a message back!
     
  14. Mama2H

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    LOL, are you getting emails when someone posts to this thread? I am so addicted to instant gratification through gmail :eek:

    Kiwimum
    And now I am capable of disabling a criminal by blowdarting a syringe of novorapid into the thigh, causing his almost instant collapse, thus allowing my escape. How can I not be grateful for that!

    OMG I about peed my pants laughing when I read this! You are right, that is something we can be grateful for :D
     
  15. hawkeyegirl

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    I understand where both you and Michelle are coming from.

    I think we're as happy as we were before Jack got diabetes. Life is different and more stressful at times, and things are harder, but I've still got my boy. Do I wish he didn't have it? Oh yes. Do I sometimes get down about it? Yes, indeedy. But most days, it just is.
     
  16. betty6333

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    No, I don't have that set up... I'd go crazy from emails (he he he ... i mean crazier than i already am) have you checked the settings page?
     
  17. OSUMom

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    Everybody's feelings are coming from different experiences, etc... ya know? Who's to say where each of us "should" be? I guess if you want to be at a different place you can work towards it, but it's the 'feelings are neither right nor wrong' thing to me.

    I do know families who have lost loved ones from cancer so I don't think you can really compare one over the other. I know one of the first things out of my son's mouth after diagnosis in the hospital was "at least I don't have cancer". He was thankful for the type 1 in that he didn't have cancer. That just blew me away.

    I know there are times when it's clear the diagnosis has changed things for my son no doubt about it. I guess with any adversity maybe it's not what hits us but our response to it. I don't know. :confused: I do know I learn a great deal from all of you so thank you.
     
  18. kiwimum

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    I just wanted to add that most days it is what it is and we just deal with it without giving it a 2nd thought.
    But on the rollercoaster that is life with D, when I am down, I am really down. I turn into a bitter person who feels that her life has not gone in the direction that it was meant to go. Yeah, I do pity myself on those days. And I pity my son.
    But luckily, those days are not common and usually only happen when someone says something that gets me thinking, such as the bus incident this past week. Most of the time, we are just who we are doing what we can to care for our sons to the best of our ability.
     
  19. AlisonKS

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    I don't get why people have to say "at least it's not cancer", well geez thank you very much! Then I've dealt with the other extreme, two moms with kids with minor food allergies telling me they have it worse. I just dealt with one yesterday and my head is about to explode cause I didn't want to cause a scene where we were when she told me "at least he can eat whatever he wants" and "finger pokes don't hurt". It's no wonder why most of my friends live in my computer:p
     
  20. joy orz

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    Ha, Ha. I've always thought that if we were carjacked or had a burgler, I'd jab em with the glucagon and not tell him what it was till he started pukeing. Glad I'm not the only one with warped superhero fantasies. :p

    I REALLY miss the simple pleasure of giving my gorgeous girl a bath. Either she goes too high because we've unplugged for too long, or we have to change a set, or she goes low because it was too close to the dose. Sigh. Yep it changes everything. And Yep, there is so much to be grateful for. And yep, I wish D was an actually human I could jab in the thigh and knock out.
     

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