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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. Jesse's Mom

    Jesse's Mom New Member

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    My sweet little boy, only 2 years old, was diagnosed on Monday. We are home from the hospital now and trying to adjust.

    I am a wreck. I cry every time I am alone. My son is scared of my touch - if I even graze his hand, he pulls away and says "mommy no poke!" It breaks my heart every single time.

    I keep my emotions in check when he is near me. I smile and try to encourage him, hug him, play with him. But as soon as he falls asleep, I fall apart. I don't sleep - I'm terrified all the time. I worry that he will go too low at night, even though we test him while he's sleeping. I worry that he will grab food when I'm not looking, and eat before he has his insulin.

    I hate everything about this. I'm just devastated and don't know how to snap out of it.
     
  2. sooz

    sooz Approved members

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    I think it is not a matter of snapping out of it. It IS heartbreaking, and it is right that you are grieving in private moments. The thing that makes it more bearable is time. As time goes on, you will all come to understand that this is just what it has to be now. Every finger poke you do, every injection, is an act of love and bravery, on both your parts. You are saving his life. Mistakes will happen, he may eat something you don't know about. It's ok if he eats before his insulin. Many people who have toddlers wait to see how much they actually eat. You can deal with it. It will be ok. Know that being overwhelmed at this point is totally normal and to be expected. Stay in close contact with your care team and get as many of your family as you can to learn along side of you. Let time do its magic.
     
  3. MomofSweetOne

    MomofSweetOne Approved members

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    My heart is breaking for you. Diagnosis is so hard. It does get better, though there are days when diabetes is just beyond hard. Most days, now, though it is just part of the flow. My daughter is thriving and doesn't let diabetes slow her down.

    I couldn't sleep either after diagnosis, and I would highly recommend you ask your team for a Continuous Glucose Monitor right away. For me, the risks of a severe low were not an abstract concept. I have a sibling who still lives with the complications of a seizure 20+ years ago. CGMs are not perfect, but its so much better than not having any idea what is happening in your child's body. There are nights when I would love to smash the thing for waking me so many times, but the reality....not being woken would be so much worse.

    We have a gastro-bug that has hit our house, and for the past two meals, my daughter hit 50s shortly after treating lows in the 70s. It's been nice to track how her BG is doing without poking her every little bit because I can't stand not knowing what curveball will hit next.

    For me, knowledge was power in feeling like I knew how to care for my daughter again. Think Like a Pancreas is an incredible book for learning how to manage insulin-dependent diabetes. The other thing that helped save my sanity was discovering scales that give carb counts. Perfect Portions Nutrition scale is sold at Target and Bath, Bath, & Beyond, I know.

    Hang in there. It takes a while to get to New Normal. We were told 2 weeks in the hospital, and it was so wrong. Three months is more typical with lots of grieving coming out again at the 6 and 1 year marks. Beyond a year, it will have become normal with having experienced all the seasons and their factors.
     
  4. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

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    If they sent you home from the hospital with a lancer then it's probably one of the more painful ones. You might want to buy a multiclix lancer - most people think they are the least painful. You should also make use that you are checking his bg one on the side of his finger rather than the tip.

    Big picture, all you can do is muddle through. It gets easier, really, it does.:cwds:
     
  5. JNBryant

    JNBryant Approved members

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    I remember being right where you are now. 8 months ago, everything changed for me, my son, and our entire family. It's perfectly normal for you to be feeling the way that you are. If you weren't at least a little upset, you wouldn't be human. I still have my moments from time to time where I get completely overwhelmed. I just remind myself that I have to be strong for my son, I take a step back, take a deep breath and keep moving forward. Time is the key to healing, and I promise you that things will get easier. I know it may be hard to comprehend right now, but you'll get there. Your little guy will settle in, and just like my son, after a while he won't remember what his life was like before the diabetes came.

    Right now, it's important for you to take the time to grieve. Diabetes is like a loss in certain ways, but you and your son will come away stronger because of it as well. Reach out to family for support, and don't forget that you have all of us here at CWD to help you :) Just take it one day at a time.
     
    Last edited: Jan 25, 2013
  6. Traci

    Traci Approved members

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    I've been there. My son was diagnosed at 23 months. It's so hard in the beginning, but you will adjust and so will he. I was so worried that he wouldn't be the happy go lucky kid he'd been. His first real sentence? "Mama, lets get out of here!" Referring to the hospital. Once he started feeling better, he was back to himself in no time flat. You'll learn all the "rules" of what to do when and you'll learn what works for your family because every child is different. It's lots of trial and error mixed with intuition and a healthy dose of science. You'll be able to look at a cookie and know the carbs and you'll realize that sometimes a guesstimate will be all you can do. You'll dose and check, correct and move on. It will be okay.

    Today my son is almost 12. He's student council Vice President, a straight A student, plays guitar, is starring in the school play, and charms everyone he comes in contact with. He manages himself at school (with the nurse as a back up) and is diligent in his testing and bolusing. I can assure you that diabetes plays a very small role in his life. We treat it like brushing our teeth--neither good nor bad, just something that needs to be done. We're hoping that he will use his super powers for good and not evil when he grows up.;)

    It really will be ok. I'm so sorry you had to join our group, but welcome. This place is full of wonderful caring people. I've learned more here than from my endocrinologist.
     
  7. hawkeyegirl

    hawkeyegirl Approved members

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    My son was diagnosed at age 3, and it was heartbreaking. Literally heartbreaking, as in I could feel my heart shattering into a million pieces. He hated shots and hated finger pokes, and we had to hold him down to do them for at least a few months. I was convinced that he would hate me for doing this to him.

    But, we often underestimate the resiliance of our children. As much as it SUCKS to have them diagnosed so young, and as much as any of us would choose to give our kids as many D-free years as possible, the one upside is that the little ones adapt very, very fast. My son is now almost 9, and for him, diabetes is just part of who he is, like having brown eyes or being tall. He doesn't remember life any other way, so he doesn't mourn what was.

    It will take a while, but you will get there too. There will be lots of milestones along the way. Your first scary low. Your first out of nowhere high. The first time you guess at the carbs in some food and do a great job at it. The first time you realize that you're not scared of fast food anymore. There is a learning curve, and it is steep, but you will get there. There's no other choice.

    There will come a day when you won't cry anymore. When grabbing that little finger and poking it becomes automatic between turning the coffee maker on and brushing your teeth. It is hard to imagine now, but you will not always feel so raw. There will be bad days, but eventually most of them will be good again. You will find your new normal, and it will be okay.

    Please stick around and ask questions. We have all been where you are now, and there are people on here at all times of the day and night who are willing to share their experiences and advice with you. You are not alone. :)
     
  8. cdninct

    cdninct Approved members

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    Like the others, I feel for you, too. My son was also 2 at the time, and diabetes came at us from out of the blue. Sooz is right--you are more than allowed to be heartbroken (ideally, when your little man is not too close by, but you do what you can). I promise that these feelings are going to fade gradually, but more quickly than you can imagine right now. 2 year olds are very adaptable, and once he gets used to how things are done, the two of you will get back on track.

    You know that lows can be dangerous and that highs can be bad, too, but you will get a feel for how resilient he can be in between extremes. When you get there, life will not seem so dicey anymore.

    Take things one day or one meal at a time. Put off doing what you do not need to do, and give yourself a break! It will get better, I promise!
     
  9. Dan

    Dan Approved members

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    My son was diagnosed at 18 months. I remember hearing the screams when they tried to poke him for an IV when he was in the hospital the first night. It was like a dagger in my heart every time they poked him. I finally told them they needed to stop and find someone else. As time went by Josh got used to the finger pricks and shots as did I. I know it is tough now but it will get better. Also as mentioned above get a lancet with a 33gage. Currently we use the AccuChec Fastclix. Hang in there.
     
  10. mom2Hanna

    mom2Hanna Approved members

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    I'm so glad you found your way here. Right now it's day by day but it will get better. I remember our first JDRF walk which was about 6 mo the after Hanna was dxd. I hardly cried anymore but seeing all the people and realizing that my daughter has a disease people walk for, we'll it was devastating all over again.

    But I think the key to remember is what Sooz said. Monday was not the day your lives were ruined, changed yes, but it is the day your sons life was saved. He may hate the constant pokes but with every one you are helping him be a healthy happy kid. Hugs for you.
     
  11. Darryl

    Darryl Approved members

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    My dd was dx'd at 8 years and at first I had to chase her around the house when it was time for a shot. Now she insists on doing it all herself and does not like any show of sympathy from anyone when it's time to do fingersticks and other D stuff. Your son is much younger and can't quite understand what's going on yet, but within a few months it will become routine and in a few years he'll be telling you to stop worrying about it.:cwds:
     
  12. Marcon2000

    Marcon2000 Approved members

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    Hang in there!

    I feel for you! My son was diagnosed last month at the age of 6. It has been hard. At first my husband and I were heartbroken. It is a grieving process. Your life will never be the same. For the first few days my husband could not tell anyone about Max without breaking down in tears. Little by little it has gotten easier. We've come to think about his diagnosis as life changing but not life ending. It could be SO much worse. On the way to the hospital that is what I tried to keep in my head. I did have my breakdowns, and still do, but Max is going to be OK, just like your little guy is going to be OK. He has a mom who obviously loves him and wants him healthy and will do what it takes to take care of him. Take it one blood sugar at a time! We are here for you!
     
  13. Cookie Monster

    Cookie Monster Approved members

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    I hope you come back and read all these replies. It's so true. It does get easier.

    I remember all the finger pricks on those tiny little fingers. I remember sticking pump sites into my son's leg when the needle was almost as big as his thigh muscle. I remember the screaming whenever a doctor tried, and usually failed, to insert an IV. I remember the tears and the panic on his face before each site change. Those memories will be vivid for the rest of my days.

    But that is all they are: distant memories. My son is now 4 and pricks his own fingers. He likes to get everything ready for his site changes and swab his skin before I inject his site. I can't remember the last time there were tears over a site change. And he secretly gets a kick out of how the other kids think he's really brave when he gets an injection! He leads a full life, doing everything a 4yo should. He makes friends easily and loves his time at preschool.

    And best of all when I pick him up at the end of the day he always greets me with a huge smile and a hug. All the pain he's had to endure at my hands because of this disease was long ago forgiven. He understands.

    As will your son. Keep doing what you're doing and please come back and let us know how things go.
     
  14. mom2two

    mom2two Approved members

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    You will start to feel more comfortable in time. My son was diagnosed before he was 2 yrs old and it was the hardest thing our family has ever gone through. I cried ALL the time and to be honest I still have moments where I cry. Just remember before you know it you will look back at this time and see just how strong you were!
     
  15. Jesse's Mom

    Jesse's Mom New Member

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    Thank you all. I still feel like I'm living in a nightmare, that this isn't my life. That this isn't his life. To add to my story, and help explain my extreme fragile state, I spent the first part of this month at my mother's bedside in the icu. She had extreme complications following routine surgery, and has been on a ventilator since January 5th. I left her to come home and hug my kids and regroup for a couple days when I noticed something off with my son, and took him to the doctor. We went to the hospital that night, and I have not been able to get back to see my mother since. I have been dealt a pretty crummy hand this month.

    My baby boy, and his older brother, have to be my priority. As hard as that is. And it's hard. I have moments where I feel strong, and think "I can do this. It will be fine", and other moments I just curl up in a ball and weep. My husband is not an emotional person - he detaches and looks at it as just another task. It's a very lonely place to be.

    I have hope that it will get better. I have hope that we will be okay. I go from sadness, to anger, to hope 100 times a day.
     
  16. Turtle1605

    Turtle1605 Approved members

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    I'm sorry you have so much to deal with at one time. Please know that while you may feel as though you are in a lonely place, we will all cry with you! My husband was upset, but (as I bet you know) my level of upset was unlike anything I had ever experienced. I also felt like I'd been taken out of my life and put into someone else's. Every time I went to sleep and would wake up, I would have a split second moment of "oh my God what a nightmare!" until I realized over and over it wasn't a dream. It was like reliving the diagnosis over and over again...several times a night. It is emotionally and physically exhausting. I love what another poster said...the day your child was diagnosed was not the end of his life...it was the day that SAVED HIS LIFE. YOU SAVED HIS LIFE! Reflect on that a lot over the next few months.

    As others have said, I agree that it will get easier in that you will adapt to all that is new to you now. It just takes a bit of time. Your baby will be just fine!
     
  17. denise3099

    denise3099 Approved members

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    Great advice given, but let me add that you should have you son prick you too. Let him test you blood sugar. He'll like that.

    Also, I'm not making light b/c we have all been there and it sucks--but can I remind you of how lucky your are? If your child were born at antoher time or another place he would be dead right now. Every day I'm grateful that my dd was born in a time and place where I can care for her. You did save your child's life and you save him every single day! You are a hero. Being a hero isn't easy but it's very rewarding. :) Hanf in there--I can only promise that someday your child will run out the door to hang out with friends and you'll be calling after him, doy you have strips? the way other parents yell to take a sweater and he'll roll his eyes at you and he will be a normal kid.
     
  18. denise3099

    denise3099 Approved members

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    oh btw, put fun stickers on all his supplies and maybe buy a cute case to keep his stuff in. His poker should be decorated with his favorite stickers. Make everything d related as cute as possible. there's even cool duct tape to tape things up with.
     
  19. kimmcannally

    kimmcannally Approved members

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    The multiclix is a wonder! Best lancet ever made IMO. If you don't have one, get one and try it.

    Someone else mentioned CGM. I have in my hot little hands a Dexcom 7 plus system. It is not the latest and greatest technology (they just came out with the G4) but it is a wonderful tool. It helps alleviate the worry about overnight lows, but it will also alleviate you of a fair amount of sleep - it's a trade-off! :cwds:

    J is on the new system. Most of the sensors I have will expire in February, but I believe a lot of people use expired sensors with no problem. I've been wearing it myself for the past few days to see how "normal" blood glucose levels change with eating, exercise, etc. Interesting info, but I don't need it.

    If you want it, PM me and I'll send it out. There are plenty of YouTube videos on how to insert it. You may not be interested right now, as it is a "big stick" for a little kid, but it might help you a lot. Watch the videos and see what you think. Let me know.
     
  20. Mish

    Mish Approved members

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    I'm going to make a promise to you: it won't always feel like it does today. I can say that with certainty. Life is going to return to normal - new normal, but it will be pretty much normal. Diabetes will be this constant thing, but it won't be THE thing in your lives.

    you need to just give yourself time to let it all sink in. We've all been where you are - holding our kids down to give shots or pokes, locking ourselves in the bathroom to have a cry, spending all night terrified that something would happen. It's NORMAL. You are very normal!!!
     

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