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Am I really doing this?

Discussion in 'Parents of Children with Type 1' started by njswede, Oct 6, 2015.

  1. njswede

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    Am I the only one who gets that feeling of "Am I really doing this?" hit me like a ton of bricks from time to time?

    Emotionally, we've all been doing pretty well, mostly because Noah is the bravest T1D warrior on the planet (except for your kids, of course). But every once in a while I'm overcome with this hard-to-describe emotion that this is somehow unreal and I kind of have to pinch myself to come to terms with the fact that I'm actively keeping him alive on an hour-by-hour basis.

    Just some psycho-babble I needed to get off my chest... :)
     
  2. Christopher

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    Perfectly normal feelings that I would suspect almost all parents who manage Type 1 diabetes feel at some point. These kinds of feelings come and go, become more intense and fade over the course of dealing with this disease. For me they were more frequent and intense in the begining, when she was younger. As time has passed and she has gotten older they have faded. But they still crop up occasionally.

    (I just realized I need to change her age to 17 in my signature. Yikes!!!!!)
     
    Last edited: Oct 6, 2015
  3. forHisglory

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    Along those same lines, I have had the sobering thought, "What if my son had been born before 1920?" (Discovery of insulin). Makes me eternally grateful for modern medicine. He can still lead a fulfilling life and influence his world. I like Six Until Me author's motto, "Diabetes doesn't define me, but it helps explain me."
     
  4. rgcainmd

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    You're not alone! I get hit with a similar feeling when I've stepped on one too many landmines while walking through the minefield of life (those times when you-know-what hits the fan or life hands you the straw that breaks your camel's back or however you want to put it.) T1D is a rough road at the best of times, and it can become overwhelming at the worst of times. That's when I cry, feel sorry for my daughter (and myself), and indulge in a time-limited pity party. I don't think there's anything wrong with doing that. It validates your feelings about your child getting the short end of the stick when fate decided to play the "life isn't fair" game. It's healthy to vent. Hang in there!
     
  5. susanlindstrom16

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    I know that feeling. I will just out of the blue think, I can't believe she has diabetes. It's weird. We are going to hit that point of time this year where she will have been living with diabetes for longer than she lived without, and it just seems so surreal and sucky that she doesn't even remember not having diabetes.

    And I also just realized I need to change her age in my signature!
     
    Last edited: Oct 6, 2015
  6. DiabetesMama

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    Yes, me too! I feel like that sometimes. I know the first three months or so, I would wake up in the morning and lay really still and ask myself, "Is it a dream? Or does he really have Diabetes?" And, yes, there are times that I can't help but get overwhelmed, (like standing in the pharmacy line about to pay a whopping bill of $700-$800) and I think about how crucial my decisions are about his units and so forth. In the middle of the night I pray while I am testing him and trying to either raise or lower the numbers that I am enough awake to make good rational decisions. I think that at first, it might be part of the "mourning stage" because you are having to deal with the loss of your perfectly healthy child, and are now having to make decisions on how to make sure they live. I do have to say that those feelings are fewer for me, but on occasion, they still poke up their nasty head and remind me of our battle for normalcy. It should get better eventually, and until then, it is great to let us know how you are feeling because it does help to express how you are feeling with others. You are in my prayers and I hope those feelings get less for you soon. Take care! :triumphant:
     
  7. njswede

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    Thanks!

    I too have to update my signature. He turned 8 a week ago.

    We're blessed to have such an awesome son. I can count the times he's complained about his diabetes on one hand. I think I've said this before, but as a man and as a father, you want to be your son's role model. And I hope I am. But the fact is that he's MY role model when it comes to handling the hard knocks life gives you. Let's just pray it stays that way through the teenage years...
     
  8. DiabetesMama

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    Yes, my son is totally my hero too! He doesn't complain either and was so brave when he was first diagnosed. We are getting to the teenage stage quick and I hope and pray that we will stay this close through the upcoming years. I am so proud of all the parents here who share all the rough things we have all gone through and the great advice we give each other! We need to be each other's support group so we can get these kids raised up and on the right track together. Love everyone here that has helped in the last month! Great people here! :triumphant:
     
  9. shannong

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    I get hit by overwhelming sadness sometimes that stops me dead in my tracks. It comes at odd times, like when it is summer time and he goes shirtless and there is his pump and Dexcom sites and I feel sad that all this technology is strapped to him and that other people stare and wonder what is on his body. It's like a reminder of how life can't be completely carefree for him. But I often experience the complete opposite too: sometimes when my son accomplishes something (like being named Captain of his hockey team, does well on a school test, competes in a cross country race, etc.), I feel overwhelmingly proud and happy. I know that despite all the baggage of diabetes, he really is kicking it in this world. And it makes this momma so happy. Two sides of the same coin.
     
  10. KHS22

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    Yup. I get it too… I had a really hard time around a year after she was diagnosed. I think the "adrenaline" just cope kind of thing had worn off, and I was just TIRED. Plus, I started thinking like some above have said, what if this was 100 years ago, I would have spent the last year watching her starve to death… And then I get mad, and sad… cycle repeat!
     
  11. DiabetesMama

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    Yep! And that's what we should be proud of! Look what they can accomplish even with an incurable disease! Wow! My son kind of takes it in stride and comments about "the borg" and laughs. LOL! Kind of his way of making other people more comfortable I guess. I too see his cgm or pump cord hanging out of his pocket and get choked up, or when I am dumping his trash yet again and see the flood of test strips, juice boxes, alcohol wipes, etc. and I just stop, and it hurts. I would take it from him gladly, if I could, but I can't. I know we all would. These kids are amazing, simply put. But as parents, I don't think the worry ever goes away, but the overwhelming thoughts and sadness does lessen in time. I just try to think about all the things he CAN do and am so relieved that he was born after the "insulin miracle". Can't even imagine what parents did before that! We are so blessed!
     
  12. dpr

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    Almost 5 years in I still get those feelings now and then. It does get better and the feelings of anger and unfairness come a lot less. Now for me it's the grind of another site change, another night up every hour and so on. Diabetes sucks for sure.

    On the other hand it has introduced us to a lot of great people that we never would have never met. The T1D community is incredibly full of people wanting nothing other than to help and support each other.
     
  13. msschiel

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    We are just shy of two years into this (on the 18th) and it still feels like a dream at times. We just had a dr. appointment today and they were really happy with his numbers (A1C down to 7.1 from 7.8 the past 6 months). He does so well with managing himself and very rarely does he get upset. I do get upset at times because he can't eat like other kids his age, but he doesn't complain, much. I think of how far treatment has come since my dad was diagnosed in the 60's and he is still here.
     
  14. SarahKelly

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    It's been a while for us and there are still moments where I feel like it is still fresh and new and I can not believe that I am poking my beautiful child's finger in the middle of the night to just make sure he's okay. You're definitely not alone in this feeling.
     
  15. MomofSweetOne

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    Yes^^^ We were at a historic site last week, and as I was enjoying watching my daughter participate in the activities, it suddenly hit me that neither she nor the other girl wearing a Medtronic pump there that day would have survived in the 1880s. Bit of a damper on the setting, and thankful to deal with this era of diabetes.

    My daughter has now lived with T1D for 1/3 of her life. I would say most of the time, we're in our new normal. Travelling to family, etc. brings out how much work our life involves, but here at home, it's just...normal. But on the days that unexpected curveballs get thrown into the equation, the grief and reminder that her life very much depends on the consistent supply of exogenous insulin come back.
     
  16. Christopher

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    Just curious, why can't he eat like other kids his age?
     
  17. Mimikins

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    I get those days also, but I found that they're not occurring as frequently compared to when I was diagnosed (I ended up crying for four weeks straight). Now, it's usually the passing thoughts, like if I'll be able to deliver healthy children and see them grow up or if a guy would want "damaged goods" who might experience life-quality-changing complications later on, that make me stand back and pout that diabetes isn't fair.

    It's been almost two years since D-day, and some days can still be a struggle. It's usually those days where I need to step back and remind myself of the opportunities that diabetes has given me: I met some awesome people though the online diabetes community, I know what I want to do after the NCLEX (I want to pursue a CDE license), I have never been this healthy in my life, and I can celebrate that I don't need to study when we discuss diabetes in pathology or need to practice drawing from a vial and syringe from pharmacology :)p).
     
  18. jenm999

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    Very moving thread. Thanks for starting this conversation. This has been the hardest part for me, and the part that others outside our community don't understand.

    T1 has also taken a toll on me emotionally and physically. Everyone says, Take care of yourself, how can you take care of him? Don't let it take over your life! etc. etc. They don't understand it's my privilege to care for my son, and that I want to carry this burden for him while I can. And I can't even find a therapist who knows what the hell this is about (the last one told me, At least when he's sleeping you know he's safe.)

    Safety feels precarious.
     
  19. SarahKelly

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    I have felt this exact same way in terms of others not getting it, however those are the times I just find another local T1d mom and ask if they want to have coffee and I ask if she's felt the same. I hope you have a few helpful t1d parents near you. I went to a therapist to talk with them right before Isaac was diagnosed and complained about his relentless crankiness, then when I went back after his diagnosis the doctor acted as if I should be relieved to know it wasn't "anything serious". I just remember feeling like I was grieving and nobody got it, then I chatted with a mom of another young child with t1d and she got it. I just think that unless the other person has had a family member diagnosed with something life altering like t1d they don't get that it is a 24x7 medical condition and that even with the best technology and supportive family it can be overwhelming. Thank you for sharing your experience.
     
  20. msschiel

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    I meant he can't always eat when the other kids are eating. Like at church, sometimes there are snacks that his brother's eat when it just isn't the right time to eat. We are still on shots, but once we got on the pump it will make this a bit easier.
     

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