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Am I normal???

Discussion in 'Parents of Children with Type 1' started by perrinsmom, Apr 13, 2014.

  1. perrinsmom

    perrinsmom Approved members

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    I need to know if I am normal……
    We are 11 weeks into DX as of tomorrow. I feel like all I do is worry and try to find ways to manage this disease. None of my friends have children with T1 and I don't feel like they understand. My world revolves around helping my child and looking into the future and now I feel like I have nothing to talk to about with my friends because they don't understand. Does that make sense?

    I also feel like I'm in this state of depression. I was going through my phone deleting pictures and ran across pictures from his hospital stay. It broke my heart and I started reliving part of it and how much our lives have changed in the last 11 weeks. I wanna go back, I wanna take this away from my son and I can’t.

    I have a great support team, a FB page devoted to my son’s progress so all of my family and friends can keep up with how he’s doing. But with all of that I still feel like I need another parent to tell that I’m normal. I need some friends that are parents with T1 children.

    Thanks from one parent to another....
     
  2. kiwikid

    kiwikid Approved members

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    yes you make complete sense and what you are feeling is totally normal... We're 11 years in and without the support of this website and now FB (with many friends from here), we'd be really struggling. It does get easier , NOT less frustrating, but easier to do the things you need to do, and to cope with what D throws your way...

    Hang In There :cwds:
     
  3. sszyszkiewicz

    sszyszkiewicz Approved members

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    You are normal.

    No people do not understand, but if they are willing to listen that is a good thing!

    Read as much as you can about D management as applies to you. The more you know the more comfortable you will feel in your new shoes. I let D consume me. There was no way I was *not* going to let it consume me. This is my child. he is, in effect, on life support and I am simply not going to drop that ball. Its not that D becomes "normal", but rather my definition of "normal" is different.

    I am about 5 months in and the first thought I have in the morning most days is DS and T1D, and how powerless I am to take it away just this minute. I have had maybe 3 or 4 days where I felt like my old self since 11/27. The lack of quality sleep makes it all seem worse. Interestingly those days have happened in the last 3 weeks or so. Most days I am a million miles away from the here and now. people are talking about this or that, and I barely hear them. Their lips are moving, but whatever they are talking about seems meaningless. I want to talk CGM, lantus, etc....

    I find that to deal with this I need to have hope that it is not forever. That's how I cope. When you get down read about the bionic pancreas up in Boston ( http://diatribe.org/issues/62/conference-pearls but ignore the clunky picture of a child with two pumps and a CGM, they are going to combine the pumps into one) and think to yourself that 5 years before the continuous glucose monitors came into being, they were trying them out in trials just like they are trying the bionic pancreas out now. Imagine if they remove the possibility of complications with that technology, buying precious time for a real cure. I read about Biohub. Cell Pouch. Encaptra. Really though, when it gets bad close your eyes, and imagine driving your son to the hospital where they will take it away, and not just monitor it. That is years away, but there are smart people looking at this from a bunch of different angles which always cheers me up enough to get through the next meal, or late night finger stick.

    Everyone here says it will get better, and I believe them. Things are better now compared to 2 months ago. The trend is up!
     
    Last edited: Apr 14, 2014
  4. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

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    Here's what I think - when a kid is dx'd with Type 1 the Drs and nurses and CDE's all know that in the end it's going to be mom and dad who actually manage the disease so they portray Type 1 as totally manageable and not "that big a deal". So we all leave the hospital with our bag of supplies and start counting carbs and doing injections an after a little while the magnitude of the dx hits and all that shinny gloss starts to wear off and we realize that none of our friends are ever going to understand the stress and the worry and the preoccupation and contingency planning and then we feel betrayed. "They said it was manageable!" and it is... but not without cost. It's a hard slog through that first year. Every "first" is hard - every holiday, every new event - if it were easy we wouldn't need a forum. :cwds:

    It gets better. Really, it does.
     
  5. Sarah Maddie's Mom

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    The "Artificial Pancreas" and the "Bionic Pancreas" are two different teams and would not appreciate being conflated, just FYI. The, "up in Boston" group is the BP group.
     
  6. wilf

    wilf Approved members

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    It is normal to be overwhelmed in the first months after diagnosis. Things that can help you in that time:
    - support of other parents of kids with Type 1, either via this site or a local support group
    - acquiring the knowledge and learning the skills you need to do the best you can with the D (good reference texts can help with this)
    - getting some friends or family to learn the basics, so you (and partner if you have one) can get away - even just for an evening
    - knowing that it will get easier over time, as you continue to learn and gain knowledge and experience.

    At this point (7+ years since diagnosis) I would say our lives are back to normal, and quite comparable to what they were before DD's diagnosis. Things are different - we eat better, and exercise more. We know we have to plan in a bit of extra time for D management, and we do so. We know that someone has to get up to do the 3 am check, and we take turns so no one gets wiped out. But overall life is good.

    DD is on top of things at school, is an accomplished distance runner, and has great friends. Her D management isn't perfect, but it's good enough. And she's happy. :)
     
  7. shannong

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    I think it is true that no one will really understand what you are going through unless they have a child with Type 1 Diabetes. It can feel lonely and very hard in the beginning. But through forums like this one, you do get support and realize that there are lots of others going though what you are. Type 1 will always be a lot of work, but I think emotionally you do begin to accept that this is just one aspect of life - yes, you would love to not have it there, but you work on acceptance. Well, more than that, you begin again to celebrate life. Until you get there (and you will) take the time to grieve. There is a profound sense of loss for how you thought life was going to be for your child. My son was diagnosed about a year and a half ago. There are days that I still cry and feel sad. But mostly, life has returned to "normal". My son is healthy, active, plays sports, has friends, and more importantly never lets diabetes stop him from doing anything. Diabetes may be on my mind a lot, but it is definitely in the background of my son's life. I think as parents, we shoulder the burden for our kids so that they can still have a pretty carefree childhood. Maybe not as "carefree" as we would like, but they can still have happy childhoods. Hang in there, it does get better.
     
  8. Mish

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    You're totally normal to feel this way. :)

    The real value, IMO, in finding groups of other type 1 families is that the life you're living is also completely normal. I know you feel like a complete freak show among your friends and family, and none of them really understand this new life your family has, but we're all doing exactly the same things you're doing - every single one of us; Thinking about diabetes, counting carbs, figuring insulin, waking in the middle of the night.

    You will get to a place where diabetes becomes more normal. Think about when you brought your first child home from the hospital. Did you think after 11 weeks that you had it all figured out? It takes time to grow into this.
     
  9. dshull

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    You are very normal. I know that in those first months, all I did was think about diabetes. Probably all I talked about was diabetes. And it was so incredibly frustrating that no one understood what it was like. Maddie's Mom said it right, I felt betrayed. The nurses and doctors all made it sound like this was all very manageable but the more I learned, the more I realized how hard it really was. I almost feel like we are a victim of our own successes. We try so hard to make our kids lives as seamless and normal as possible that from the outside, what we do looks like a piece of cake. They don't see the logging, the calculating, the planning for every situation possible, all of the thought that goes into giving our kid a piece of pizza, sending them into a bounce house, or going to a friend's house. And while that made me really mad for awhile, I have really come to accept that no one really truly understands unless they're living it, and I'm OK with that.

    A D mom once asked me if she feels our D has made me less judgmental of other people, and I really think that it has. Certain things that used to really get under my skin just don't bother me anymore. I used to get really mad at people who cut me off while driving, rude store clerks, etc., and now I sometimes stop to think, "maybe they're having a bad day. Maybe they just got some really bad news and they're just not thinking." I'm sure I cut off more than one driver on the road going back and forth to the hospital after my son was diagnosed.

    Everyone has said it, but I will say it again. It really will get better. The first year is HARD. There is no getting around that. But I promise you that in a year you'll be able to give people the same advice. What helped me the most was getting around other people who were dealing with the same thing. Either online or in person, it's just nice to know you're not alone. Hang in there. You are doing a great job!!
     
  10. MomofSweetOne

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    In their defense, if we'd understood the truth, no parent would have the confidence that we could manage this disease. It was scarey enough to bring my daughter home feeling empowered.

    I will admit, though, that every time I have to call in to customer service for whichever diabetes gadget is being problematic or insurance hassle has developed, I almost always get off the phone and commented that I overused up my allotted diabetes time for the day just in hold-time, etc. The worst part was being told that we'd arrive at New Normal in a couple of weeks. At two weeks, the grief/anger had hit my daughter, and there was no way I was willing to accept that as our new normal. It was awful.
     
  11. skyblufig

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    I will chime in as well. Yes to all of it: being overwhelmed, a bit depressed, somewhat out of the loop friends-wise. We're about a year and a half in since diagnosis and yes, it gets easier, but there are plenty of days where I still feel mentally cold-cocked. Our team at the hospital was all about reassuring us about being able to manage the disease and reaching "the new normal"; in fact, I remember them literally telling us, "don't worry, you won't kill him the first week". That phrase ("the new normal"), by the way, still irritates me; there's nothing remotely normal about any of it. Perhaps "the new routine" or something would be more apt. But I digress. My husband and I would say to each other "It's not cancer!" and that has sort of been our way of bumbling through rough patches. That being said, if I could make it all go away by ripping out my own pancreas and giving it to him, I would.
     
  12. susanlindstrom16

    susanlindstrom16 Approved members

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    I hear ya...its really hard to talk about this stuff with someone who isn't going through it because honestly its just too much. And it can be isolating because its literally all you are thinking about. Thats why this forum has been a godsend for me. Even when the threads don't directly apply to what we are doing, its nice to log in and know that there are other parents out there thinking about carb counts, BG levels, etc. Because its too hard to explain to other people sometimes, even if they are super supportive and want to help. It helped me to realize I don't need to share all the ins and outs of D management with friends to get support from them.
     
  13. sszyszkiewicz

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    Skyblufig.....has Lake Michigan thawed yet? You guys had it bad this winter.
     
  14. Toterra

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    You are perfectly normal, dealing with an abnormal situation. I know exactly how you feel, now 10 weeks from diagnosis I am completely obsessed with diabetes. Pre diagnosis diabetes was just a word. Now it dominates my life. I just don't understand how this monster has managed to completely take over. Everytime I relax, or think I have things under control, it rears its ugly head and hits me hard.

    Lots of parents here will tell you things get better. I almost believe them. But right now you, I, and many other parents are in a dark place. All we can do is love our children as much as we can and go on as best we can.

    And I totally understand about not really being able to talk to friends and stuff about topics other than diabetes. I just don't care about the hockey game, or the weather, or whatever thing is troubling their life.
     
  15. glko

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    We are about 6 months since diagnosis of my 9yo son. A couple of things helped me after the initial learning curve and getting used to the routine.
    1. Stop reading about diabetes online. Initially I soured the web and this forum day and night. It was helpful to a point but honestly after a while I felt like it took up too much of my time and energy. Now I try to go online once or twice a week only. Diabetes is enough work, try not to spend the rest of your time reading about diabetes. Not to knock this site or forum, it is definitely helpful, but for me I needed to find a better balance and not let diabetes take more of my energy then it needed to.
    2. Connecting with other local families via our JDRF chapter. There is a moms group that meets once a month and that has been good support especially in the early months
    3. If after 3 months you are still feeling overwhelmed and maybe depressed consider counseling for yourself. This is a lifelong disease, you need to take care of yourself to care for your child. For me I did need to take an antidepressant to help me cope with the diagnosis and changes and that has helped a lot. But counseling alone was also helpful in validating my emotions and helping me to develop healthier ways of coping with the changes. For us it was a double whammy since my dh has Type 1 so he was dealing with feelings of guilt as well. Our children will need to be resiliant to manage diabetes so if we can model those skills then they will hopefully be more successful as well.
     
  16. wilf

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    You are doing what you need to do, which is focus on the matter at hand. You need to care for your child, and learn what you need to learn in order to do it better in the future.

    Seen longer term, a point will come when you've learned most of what you're ever going to learn and when the D management has become routine. When you know your child and your family will not only survive this, but be able to get back to living your lives.

    But in the meantime, you buckle down and do what you have to do. I salute all you parents who find yourselves in this hard post-diagnosis time. Keep at it. Don't beat yourself up if you make mistakes, as you have to make mistakes in order to learn. The key is learning, from the best possible information sources. Knowledge is power. Once you fully understand the details of D management, it will get easier. :)
     
  17. skyblufig

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    Ha! Yes it did! 51 and sunny today - not bad for April.
     
  18. Darryl

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    Yes that is normal. After a while you'll settle into a routine, not worry as much, and the truth will settle in which is that you son can have a normal life and a normal lifespan, that he will accomplish everything and possibly more than other children. Stay on top of the BG control as it is important for long term health. Get a CGM if possible as this takes away a great deal of the worry.
     
  19. mmgirls

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    I don't think i have shared this linhttp://m.youtube.com/results?q=northern%20nevada%20jdrf&sm=3k before because this is a just a snippet of hours of footage. JDRF took what suited their needs for the GALA video that they needed to do. It was a very specific question that i was answering yet it makes it seem like it is our life, everyday, 24/7.

    but at one point, yes that is how I felt. That T1D was my life and on my mind 24/7. I remember those time in the shower crying about what my life had becomd, and the sadness that i could not see past.

    If you can not get to a better place where this diagnosis is the be all end all of your family then maybe you need someone to help you talk it out.
     
  20. ladybird

    ladybird New Member

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    Yes you are normal. I'm new here and struggling myself. We are only 4 weeks into diagnosis of my second to youngest son, aged 15. I would give anything for it to be me with it instead of him....anything. He's fine tbh. He's getting on with it and tho initially angry he can't go in the army, he's doing better than I am. I know no one irl with T1 and the DSN are my only support. I know it will get better but it's a struggle now.
     

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