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Am I in the right Forum?

Discussion in 'Parents of Children with Type 1' started by rd3100, Feb 28, 2011.

  1. wilf

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    Hi there. Sorry to hear you're having a hard time, but I think it's accurate to say that EVERY parent whose child is diagnosed with Type 1 D has a hard time with it. We all deal with it at our own pace, but we can all relate because we've all been there.

    Though it may seem unlikely just now, please know that it will get easier and better as time passes. I know that 4 1/2 years ago I was where you are now - crushed at the thought of my daughter's diagnosis. But here we are a few years later and we've all settled in to a "new normal". She is a happy, healthy, outgoing teen and I'm a much happier Dad. The D is a pain in the butt, but a manageable pain that doesn't stop her from doing anything she wants to do.

    Glad you found us, there's always someone here if you've got questions or just need to unburden yourself of some issue.

    Good luck! :cwds:
     
  2. rd3100

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    I appreciate the kind words. I just turned my beautiful wife onto the site. Thank you all!
     
  3. tom_ethansdad

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    Dude, I'm not going to hug your or anything like that. :)

    Much as you are going through now, I have gone through periods where I just hate D. I would silently curse it each and every time I had to check E's blood sugar, or count carbs, or give him insulin, but just as you love your daughter so much, I too love him so much. So regardless of how I feel, I will do everything I can to make sure he is cared for as well as possible so as to reduce as much as possible the risk of those complications. I can't guarantee he won't ever suffer from them, but I can do my best to keep him as healthy as possible. And so I focus on that when other things get me down.

    And I have no doubt, just as E does, that your daughter knows that you are doing your best to keep her safe and healthy, and that you love her. Some of the biggest hugs I get from E are after I have changed his infusion set or corrected a lo/hi BG, or we just had a talk about D, and I think it's his way of showing his appreciation for making him feel safe.

    Six months in is about when I felt the lowest. All I can add is hang in there, keep your thoughts on the positives, or at least away from the negatives. Focus on keeping her healthy. It gets easier, but there will always be moments where it gets to you. Having a place like this to vent those to other folks who will understand because they've gone through it as well, helps a lot.
     
  4. ShelbysMom

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    I'm so sorry you had to find this forum. Please know that things will get better and there are many great days to come.

    Grieving for me is an ongoing process. We are three years since dx and it still comes and goes, but I have found that there are things that can help you cope.

    First and foremost, you absolutely MUST let guilt go. Be mad at D, but not at yourself. I have type 1 in my family and still didn't catch it until daughter's BS was 800. Guilt can eat you up now and down the road as you deal with this, so know without a doubt.....THIS IS NOT YOUR FAULT. It's diabetes.

    Second, and you will learn this soon if not already, it's not going to be perfect. As parents, we strive for perfection b/c we want the absolute best for our children. It doesn't happen with D. There will be great days and there will be really rough days. Once again, not you fault, not your daughter's fault, Diabetes fault.

    For me, If we are going through a real rough spot, I find it comforting to look through all the Diabetes research at JDRF, DRI, here at CWD, and on several diabetes blogs. Joshua Levy posts here often and he does a great job of reviewing clinical trials and news. Yesterday I looked at islet transplant facebook page with people talking about how wonderful things were since transplant. Even though this is not an option for us b/c of immunosuppression etc, its nice to hear others success stories. I find that being hopeful for something better one day helps.

    I scour diabetes books on a regular basis. Pumping Insulin, Think Like a Pancreas, and Type 1 Diabetes by Ragnar Hanas. When things get rough, these books help with ideas on the cause and how to improve.

    Hang in there.....it does get better. There will be rough spots even after you "adjust" but you will adjust again and then get on with it. And I'm on CWD daily. We all need the support.
     
  5. momof2here

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    welcome...

    Hello and welcome to the forum. Whatever you do, do not blame yourself for any delay in diagnosis. I actually took my son to the doctor three weeks before his true diagnosis and told the pediatrician that I felt he had type 1 diabetes. It was one of the hardest things I have ever had to say out loud. He had every sign. After checking his urine for glucose, and not finding any at that time, we were sent off with an 'it's okay to be hungry and its okay to be thirsty'. The doctor didn't believe that he had type 1 - in the face of each and every symptom and with the knowledge of what type 1 entails. The moral of that story is that even doctors can miss what is absolutely thrust in their laps so, not knowing immediately what your daughter was suffering with, is really much more common than not and it is completely fine.

    This forum has been a great resource for me. In the beginning I was grieving terribly. My grief lasted and lasted. I still grieve but, as time progresses, I have become stronger and much more capable. I know you will too but it is absolutely normal to feel powerless over something that has taken your previous life (and, of course your daughter's) and turned it into something completely different.

    For me, getting my son on a pump and a continuous glucose monitor (at about three months for the pump and 6 months for the cgm) helped quite a bit. It is not all sweetness and roses by any means and I pretty much think about our previous lives every day - but we are making it work. The better we become with managing this disease, the better the prognosis is for his long, healthy life - so much depends upon our ability to handle what we have been given. I also feel that the more attention I spend toward making this work, the more likely he will be to feel the normalcy of work that is involved in being healthy with type 1 diabetes. This approach is hopefully going to follow him well into adulthood and that, more than anything else, is my insurance that he will be okay.

    Read, ask questions and act according to what you have learned, it will surely empower you and it will help you to help your little girl to lead a good life with type 1.

    Welcome again to the forum. It is a great sign that you are here, seeking out information and guidance.
     
  6. 5kids4me

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    A few months ago, I was feeling much like you are now. As someone said, many people go through a grieving process and as we approach our 1 year dx anniversary, I find myself feeling more hopeful and determined to instill a positive attitude and mindset- in myself as well as my son. I hope, in time, the same is true for you and your family.

    It is tough, the pain is deep and sharp. But your daughter can have a wonderful, healthy life. She will grow up, participate in any activities she wants...go to college, find a career, have a family- whatever she wants out of life, it is all within her grasp. That hasn't changed. Nothing is written in stone. Sure, it will be a rougher road, maybe more obstacles to climb over- but still a beautiful journey.

    I came to a conclusion a few months ago...if my son sees me filled with hopelessness and despair, then he will soak up those negative emotions. That can lead to depression- which could result in a "why even try" attitude towards t1 when he is an adult. My goal,as his mother, is to love him and give him the skills needed to manage t1 to the best of his ability. To teach him to take t1 seriously, but not let it control him or hold him back. To live well and happily in spite of the hand he has been dealt.

    ((((((((take care and be kind to yourself)))))))))
     
  7. Dmama24/7/365

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    Welcome to the group, of course I wish I didnt have to say that.

    The first year was the hardest for us as well. Sadness, anger, guilt, all kinds of emotions. It DOES get better, and remember youre not alone.

    What a blessing that you found this site so soon after DX. Having others going through the same thing as you and your family will help alot, and you can always come here to vent and ask questions.

    Just remember take it day by day, number by number. ((hugs))
     
  8. obtainedmist

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    When Molly was first diagnosed, we met with the team of endo's, dieticians and finally, a therapist. A few days after dx, my husband called up the office and met with the therapist separately since he felt he really needed someone to talk to. It helped him a lot and he's met with her a few times since. Just wanted to throw that out there because sometimes we all need a little extra help to get over the rough spots.
     
  9. StillMamamia

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    Hi and welcome to our community. I'm sorry you have to be here though.

    After our dx, my husband was a total mess. You know how daddies are supposed to protect their little kids? Well, he felt hopeless that he couldn't protect his little boy.:( This feeling of overwhelming sadness lasted a long time. He came out of it eventually. He still cannot stand this disease but he sees how happy and healthy (!!!) our son is and that gives him some hope.

    The feelings you are feeling are normal. Totally normal. But remember there will be a day when you will feel better.:cwds:
     
  10. VinceysMom

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    Hi and welcome to the Forum...

    Never in a million years did I ever think that I would be here giving advice, lending support to others... I was a complete and total mess! When we came home after four days in the hospital, I could not even take care of my son. I had to leave my house everyday and go to my Mom's and I would cry and cry and cry; my husband took care of my son almost full time for two weeks. I finally snapped out of it, but it took a long time, a month or more.

    I still have my moments, I will be driving and start screaming WHY WHY WHY??? I know some say you shouldnt question things, but I do, that's me.

    I think we will always have our moments of anger, sadness, grief, because we could not protect our children from this monster called D.

    I found that when I educated myself, read as much as possible, read all kinds of information on this forum, join the live chats, you feel like you are finally learning more about this disease and you can get a handle on things. I have learned So so much from being on this forum, it has been a Godsend.

    My son is a very happy, healthy 14.5 yr old boy who plays football, baseball and just loves life!

    Many of us are on facebook as well; and in the middle of the night, when my son is fighting lows or highs, someone is always there for support --we have support here from around the globe!

    You will be ok, your child will be ok. We wish you the best. Please come back here often, this is the number one place for support!

    - Kathy
     
  11. denise3099

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    My dd was 4 at dx. she's 8 now and has lived half her life with D. :(

    It helps me to read adult patient blogs and forums. It helps to see ppl grow up and live their lives as healthy adults. I read Kerri's blog and imagine my daughter as a grown up lady with a baby of her own and I feel like she'll be ok. http://www.sixuntilme.com/ she' funny and witty and will tell you what her bad days are like and her good days. It's like looking into the future. (She's crabby today so watch out. :p ) Or I go to the ADA site and read what the grown-ups are up to. And by the time our kids are grown, so much will have changed, it can only get better. Your baby will be ok and you will too.
     
  12. Our3girls

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    I ditto everything said already and don't have really anything to add as it was all said so perfectly. I did want to ask what part of California you are in? We are in California too. Between LA and Fresno. It is always nice to meet others it is kinda theraputic.
     
  13. rd3100

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    Speaking with my wife last night, we know we're not alone. I know that the highs and lows I'll go through, you have already been through. With that, believe me, I'll be turning to you. I've booked this forum as my FAVORITE and I will be logged on often!!! Thanks again. Reading all these real-life stories is touching. GOD bless each of you.

    By the way, we are in SoCal east of LA.
     
  14. Sari

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    No lie, I cried for a month when Ross was diagnosed (I didn't let him see me cry though). He was just 22 months old. Ross has adjusted to be an amazing 6 1/2 year old. He is kind, smart (REALLLLLLY good at math - guessing from all the carb counting), athletic, and just a down right good kid. It's been a long time since I have cried about Diabetes in our life. But I like what Sarah said Diabetes doesn't define who Ross is. It's just yet ANOTHER thing that makes Ross so special.
     
  15. HBMom

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    Welcome to the "club". We are just south of LAX - just wanted to say hello and let you know that if you need any local resources, feel free to PM me. Since your daughter is younger, you may be interested in a family camp - here is one organization that has both family camps for younger kids and regular camps for when the kids are a bit older - http://www.dys.org/ .
     
  16. LoriLee

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    I am here with you!

    OMG, you sound just like me...I think we are all soooo normal to feel this way... I to have grieved for my daughter, and still do! But it does begin to start feeling like, Ok it is just one of live's curves and we have to deal with it..Now, my husband struggles with it everyday, and when our daughter curls up in his lap, and tells him as she did this past weekend, " Daddy I am just so sick of Diabetes." It is hard to hold it together...It seems so unfair, and I too have doubted myself, thinking that I did something wrong or fed her to much milk etc while she was little.. She was placed in our home at 6 months old, after having a rough time in utero, as well as the first 6 months of her life she was neglected, so at first I was ANGRY with the Biological parents, but then I became educated and learned it was NO-ONE's fault, just that she pulled a short straw (as one of our endo team stated)... We don't have much on family history, but then it really doesnt matter, I have excepted she has Type I, there is nothing we can do, but make it work and pray for a cure! And my goal is just to raise this beautiful little girl who I waited my whole life for!!!!
     
  17. rd3100

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    I wish I could speak to more people who are not educated on this. We all have the same story. I HOPE PEOPLE LISTEN TO US AND NEVER FORGET THE IMPORTANCE OF THIS TERRIBLE THING HURTING OUR KIDS!
     
  18. bibrahim

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    Wow, Kathy your son was Dx the same day as my daughter and I think we are on the same trajectory as far as coping with this...to the original poster I too am glad you found the forum. I think it will help a lot and give support. The only other thing I want to add is to talk with your spouse about your feelings. There are things that trigger me and I go through the same "why" feelings and relive the sadness and often times when I talk with my husband he felt the same way. It just helps to have that support.

    The day we got the pump we were all excited and then boom it hit me...I don't know how to take care of her anymore, and this is the best it gets, etc. But we got through it...we learned how to use the pump, and we learned how to use the CGM, and life is better and more normal...keep up the good work. Feel what you feel, and you will move forward and you will all be OK.
     
  19. Little Diabetic Dude

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    I cried as soon as we were told I remember it like it was yesterday ( he stayed in ICU for 4 days) and everytime I think of our family without Ashton I get this lump in my throat. I have this poem I read that helps me accept that he has this and he has been sent to me. I tend to deal with it in my own way. I am up with him constantly, when he is sick it's nightmare but at the end of the day he is still here with me and we have plenty more adventures to go through together, he's not going anywhere and as time passes it will get easier, as each day passes a cure comes closer, I often write him letters and tell him how much he means to us and what we do to keep him safe, he wil grow up knowing that we have done our best for him.I often ask why me? but the same old answer comes back he chose me to be his mother. He has had it for 2 yrs and he was 16mths as diagnosis.
    Joining in the fundraising ( empowers you) and forums and going to meetings at the hospital help alot because you feel like you are not alone.
    This has done the rounds but incase you haven't seen it yet.
    HOW GOD SELECTS THE MOTHER OF A CHILD WITH DIABETES

    by Erma Bombeck

    Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. Did you ever wonder how mothers of children with diabetes are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

    ?Armstrong, Beth, son. Patron Saint Matthew.?

    ?Forrest, Marjorie, daughter. Patron Saint Cecilia.?

    ?Rutledge, Carrie, twins. Patron Saint Gerard. He?s used to profanity.?

    Finally, He passes a name to an angel and smiles, ?Give her a child with diabetes.? The angel is curious. ?Why this one, God? She?s so happy.?

    ?Exactly?, smiles God. ?Could I give a child with diabetes to a mother who does not know laughter? That would be cruel.?

    ?But has she the patience?? asks the angel.

    ?I don?t want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she?ll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I am going to give her has her own world. She has to make it live in her world and that?s not going to be easy.?

    ?But Lord, I don?t think she even believes in you.?

    God smiles. ?No matter. I can fix that. This one is perfect. She has just enough selfishness.?

    The angel gasps. ?Selfishness? Is that a virtue??

    God nods. ?If she cannot separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with less than perfect.?

    ?She does not realize it yet, but she is to be envied. I will permit her to see clearly the things I see?ignorance, cruelty, prejudice?and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side.?

    ?And what about her patron saint?? asks the angel, his pen poised in mid air. God smiles. ?A mirror will suffice.?

    ~By Erma Bombeck
    I read it again and it always brings tears to my eyes a very powerful poem.
     
  20. DsMom

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    Certainly nothing is wrong with you. You are grieving--and I reacted very similarly. The first few months are all about getting through each day, learning the mechanics and the many, many "rules" of Type 1. When I could finally breathe a little, the pain really hit again--just like at dx. There are scary complication stories. However, there are many inspirational success stories too. Seek them out--athletes, regular people, etc. I read Diabetes Forecast magazine and feel like singing every time someone writes into the Letters to the Editor about their 50 year Joslin awards. Just think--healthy after 50 years with D--even before all of the innovations our kids can take advantage of!!! And please don't beat yourself up about not knowing. I had an aunt and also have 2 nieces with Type 1. My son was so thirsty all summer in 2008 and peeing a lot. I chalked it up to it being summer and his 4 year-old love of visiting every public toilet he would see!! Didn't sink in that he ALWAYS peed at every toilet he visited as well! My sister noticed his drinking before I did. It wasn't until he threw up at preschool and peed through his clothes twice in one night that it sunk in. Even with my family history, I guess I was just in denial. You never think it will be YOUR family affected. So, please don't feel bad. You will grieve, and you need to grieve. But you will also get through it and see the bright life ahead of your child--even with D. My one niece just had a beautiful baby girl and also has a healthy 3-year old son. She has no complications and never even had a major hospitalization after dx at 2 years old. My other niece is a flight attendant, participates in triathalons, and is extremely active. They have great lives--and so will your child. Hang in there, and good luck!
     

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