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How do I cope?

Discussion in 'Parents of Children with Type 1' started by Jesse's Mom, Jan 25, 2013.

  1. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

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    And in answer to your question, "How do I cope?" You just do. You do becuase there is no alternative. How you cope is up to you - but none of us were blank slates at dx. Everyone here had some pressure on them - sick parents, other children, work or educational obligations, poverty, ill health themselves, etc etc etc. Life is unfair, Diabetes is unfair. You just have to pick yourself up, find whatever you need to do to be strong and do what needs to be done.
     
  2. Darryl

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    Yes, that's pretty much what it comes down to. Only thing I could add is to be thankful, because people with T1 can live a long and healthy life, which cannot be said for many other things a child could be diagnosed with.
     
  3. Ali

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    This. I was that child diagnosed with T1 many many years ago and one of my saving thoughts has been "Thank God" it was something I have some control over. Shortly after my diagnosis my Mother was diagnosed with cancer and a type that was untreatable,10 years later my Dad died from cancer. So while T1 is a huge pain in the a... and no doubt reduces your length of life, at least most of us T1s can grow up to live productive happy lives and have spouses and children. Also luckily it is not a disease that causes pain for most of us, it is a huge pain to deal with but for me my body feels pretty good 90 percent of the time, unlike my friends with cancer or arthritis or other chronic illnesses where they feel miserable (physically) 90 percent of the time.T1 is a huge burden because it is constant and forever and every minute something one has to have a "sense" of but for most, but not all sadly, it is a disease that can be managed for a long time. That is a blessing. Ali
     
  4. Matterhorn

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    My son was diagnosed just after he turned 2 years in Dec 2011 and I can totally relate to all the emotions you go through. I came across some thoughts on a blog of a parent with a diabetic child (unfortunately I lost the link) and its contents really put things in life into perspective. I read it when we have bad diabet days to perk me up.

    QTE
    And while you are worrying about the quality of your child?s life, know this:

    They will be okay.

    While you worry about how diabetes will affect our lives, we will be living them. We live with this. Through this. We do this every day. This is our disease. But this is also Our Lives. So while we test our blood sugar and take our insulin, we won?t be missing out on a thing. Do not worry. Your child will make you crazy by talking on the phone for hours with kids they just saw at school. You will catch them dancing in their rooms to music you don?t understand. They will drive the car to the store for the first time while you wait at the window, wringing your hands. They will go to school dances with their friends and come home with stories that make no mention of finger pricks or infusion sites. They will cry when they are sad. Or they will light up the room with their smile when they are happy. They will fall in love. They won't miss a thing. They will persevere.

    They will be okay.

    So when you look at them as they sleep, wondering what their level might be or if they ate enough of a bedtime snack, know that they sleep peacefully. You do the worrying. You will so carefully integrate diabetes into their lives that they will barely notice the seams. Your love and perseverance will teach them to succeed at both life and diabetes.

    But they won?t notice the separation.

    To them, it will just be Life.
    UNQTE
     
  5. Turtle1605

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    I'm so sorry. I'm crying with you :(. I will tell you that I was an emotional wreck when my son was diagnosed and quite frankly had very crazy thoughts running through my head all day long. On top of that, I woke up several times a night and every time I woke up, I had the split second thought that it was all a nightmare and then reality hit over and over that it was not a nightmare. It was like living the diagnosis over and over and over every night. I could not eat, could not sleep and for the love of God...could not stop crying. Like you, I tried to keep a happy face on for my son but made frequent trips to the bedroom to cry my eyes out. The one thing that ripped my heart out was when we used the last test strip in the first bottle of strips and my son said, "Yeah mommy...we did it!". He thought he didn't have to do it anymore:(.

    If you need help, please see your doctor. My husband finally made me go. My doctor prescribed an anxiety medicine (Lexapro to be specific) and he told me that I had nothing to be ashamed of and if he were in the situation, he'd be taking the same thing. I thought I could pull myself out of it myself, but quite frankly, the lack of sleep made me unable to do much of anything but survive. You may not be at the point I was, but I just wanted you to know that some help for you might be an option.

    Some diabetes-relatated tactics I used that might help...I did every finger check I could while he was asleep. I did his before breakfast before I woke him up and his "before bed" after he went to sleep, etc. I also tried out the "multiclix" and "one touch delica" lancet devices. These are typically the preferred devises that hurt less than the others. The other thing I did was get one of the stuffed animals (we have Lenny the Lion from Medtronic) that has the patches on its little body where you give shots and do pricks. I let my son prick fingers and give tons of shots to that poor stuffed animal. I also let my son prick my finger. We wasted some supplies, but it was completely worth it. I think JDRF also has a stuffed animal. I also made sure to do things together that made us LAUGH! Hearing my son laugh warmed my heart like nothing ever had. When we were all able to laugh, it made me realize we were going to be okay. Rent a funny movie or whatever you can think of. Also, don't let this stop you from doing ANYTHING. The more you know you can do...the better you will feel! One other thing I did was read as much as I could about people that have had type 1 diabetes for many years and are thriving! I had one kind gentleman send a message to me from this forum that outlined things he has done in his life despite diabetes and it helped me a lot!

    Now, I know that you feel like you are dying inside but I promise you IT WILL GET BETTER! If you are like me , you will have ups and downs but all in all...as time goes by, you will find that diabetes will not take up your entire life. You and your baby WILL BE FINE. You can alway visit this forum (day or night) with questions or if you just need to cry :(. As time goes by, you may want to vent, too. :)
     
  6. kyle and ryans mom

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    When my son was diagnosed 2 years ago at age 7, I remember crying the entire night in the hospital once he fell asleep. The second day, he got a roommate, a little boy wih cancer with a feeding tube in his stomach who could barely walk. When I'm feeling sad for my son, I remind myself that he is healthy kid that can run and play and live a long life. Let yourself grieve, but you and your child will be ok.
     
  7. Nicole N

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    Hi Jesse's mom,

    I COMPLETELY understand where you are with this. My son was diagnosed about 9 months ago at age 8. I was and am completely devasted! I cried every single day for 6 months. Now I cry 5 days a week (of course do not cry in front of him). It is so heartbreaking. Our lives have changed so much.
    My son still has issues with "checking" and refuses or cries to do it. He also goes through periods of depression. We have seen a psychologist for a few months right after diagnosis and again around Christmas. I'm not sure how much it is helping.
    I hate everything about this disease. It is so difficult to manage. It has affected his social life. It has affected our social life. He is at the clinic at school 3-5 times a day. It is so disruptive. He cannot be alone. I could go on and on....
    Sorry not to be positive, but there is just nothing positive about this. It is not only tough to deal with a chronic disease now...but also knowing the (most likely) future complications is so sad.

    I have met other parents who have offered support. That is best you can get - support.

    Take care,
    Nicole
     
  8. shannong

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    Nicole,
    I think that it is totally normal to be sad after diagnosis. I feel your sadness and can relate to it. However, I think that if you are not finding yourself feeling positive at all after 9 months, then it is time to get more support. I don't mean that you have to be positive about the disease...yes, most times I think diabetes sucks...but life doesn't suck with diabetes. Life for my son is happy. I think that if sadness turns into a prolonged depression, it is time for help. I say this only with kindness and concern and hope the fog lifts for you.
     
  9. Christopher

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    Very well said, shannong. I was thinking the same thing.

    To Nicole, I just wanted to add that if your son is in the school clinic 3-5 times a day, which I agree would be disruptive, you may want to look at why that is happening and if there is anything you can do to mitigate some of those visits. Can he test himself and if so, does his 504 state he can test in the classroom?

    Also, I was wondering why it is affecting his social life so much? Maybe examining ways to reduce the impact this disease has on him would go a long way towards making him feel better about living with it.

    I have found after 6 years of living with this that my feelings about diabetes and its impact go in cycles. There are times when I feel very bleak about it and see little hope. And other times when I feel confident and hopefull that I have given her the tools she needs to have a productive, healthy and happy life. I make it a point not to let Danielle see the negative feelings. They take their cues from us.

    Good luck.
     
    Last edited: Feb 21, 2013
  10. Mish

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    I agree. It's fine to hate diabetes. that's normal. None of us like it. But it's not normal for you to be crying over it most of the week this long after diagnosis. You don't have to live like that. I would urge you to seek some additional help because it doesn't and shouldn't have to be this miserable for you. I don't want that to sound harsh, and I"m not trying to sound mean at all, but maybe just knowing that it's not the norm, that there is help, might help you in some way. You shouldn't have to feel like this. :)
     
  11. cdninct

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    I know diabetes can be overwhelming, and looking ahead can be scary. I believe that future complications are not inevitable, though. There are many senior citizens out there with diabetes whose health is no worse than that of their peers. Yes, they might be the lucky or especially disciplined ones, but they managed to beat the odds through decades when diabetes management was far less sophisticated than it is today. Now, we have more knowledge and more tools at our disposal, and although breakthroughs and developments might not be happening as fast as we would like, they are happening.

    I believe that my job is to keep my son healthy now so that he will be healthy as an adult. I am not powerless to influence my son's health, and I focus on what I can do. Every high I correct, every problematic pattern I see and adjust for, every opportunity I take to find a way to help him be positive and take ownership of his health, helps him.

    Hope this perspective helps!
     
  12. Darryl

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    Hi,

    My daughter's doctor is around 60, has had Type 1 for 50 years, has a successful medical practice, is very social, avid tennis player, wonderful family, and as far as I can see is as healthy as anyone else. This could be your son 58 years from now.

    Stay on top of the BG control. Use a pump and CGM if possible, they help with BG control and peace of mind quite a bit. Find a doctor who wants you to achieve good control and low A1C's, and who shows you how to do this, as that is important for long term health.
     
  13. Laura Ben

    Laura Ben Approved members

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    My son was diagnosed just before turning 3. I am so sorry. It is so sad for them and so hard for us, too. It does get easier. It becomes a lifestyle, a stressful one at times, but a lifestyle. Bribery is a wonderful thing to make it better for him initially. A sticker chart if he's old enough to "get" that or the dollar section at Target has tons of great little toys. I bought a bunch and let him pick one from a basket after his shot or finger stick when he is struggling and it helps. It was surprisingly quick that he was much less resistant overall and only needed the reward occasionally.
     
  14. bisous

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    DS was diagnosed at age 2 also! Then I watched DN (niece) get diagnosed at age 3. It was very, very hard for both of them! My son is now 9 and my niece is now 7 and both lead incredibly happy lives. They no longer flinch when their blood sugar is tested and even my life is pretty darn awesome. I don't know about complications and other tricky things in the future but I'm optimistic that through my hard work and through new innovations in technology we'll keep my son free from complications and we fully expect him to live a long and healthy life!

    I'm glad you found CWD as it was invaluable to me. I want you to know that it gets better. I am a happy person, DS is a happy person, despite diabetes diagnosis!
     

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