My son is 10 years old. He was diagnosed with T1D in Sept 2011 1 week after his 8th birthday. The 2 biggest obstacles that affect my managing his diabetes are fear and GUILT. Did I cause his diabetes? Logically, NO. Do I feel guilty and responsible for it? YES. As his mother it is my #1 responsibility to keep my children safe and well. If my son is T1 then I obviously failed miserably at my main responsibility of keeping him safe and well. Where did I go wrong? What did I not do that I should have done to prevent this from happening? I have spent 27 months repeatedly asking myself what I did wrong. What did I do wrong that he is being punished for? How do I learn to keep the fear and anger and guilt at bay to focus solely on Anthony and his well being? We are lucky that he is healthy (well except for the D!) and reasonably well controlled. He doesn't have any complications and hopefully never will. Does anyone else feel this way and how do you cope? What advise do you have to keep the negativity in check? I have gotten some really great advice from this site already but this area is by far my biggest challenge.
Personally I’m in the anger phase …I hate the “D” word tonight!
I can so feel your pain. I have been there. Our son was diagnosed T1D the second week of spring break 2012.....he came to me the first week in tears saying he was diabetic he had read the symptoms on the internet....I said no way you are running around bugging your brother and you have a Dr.'s appointment next week....famous last words. Three days after that he was throwing up and I thought oh just the flu this will pass well when it did not and he said call an ambulance I said No...we will go to the doctor. She took one look at him and sent us to emergency...he was tested and his reading was 36 .....normal in Canada 4 to 8. I felt my knees buckle as he slipped away unconscious...a whole team worked on him later that night he was airlifted to Children's Hospital in Vancouver. There is a team of wonderful doctors and more than one lectured me that this was not my fault and that nothing I could of done could of prevented this. Our son spent one night in ICU there then 3 nights in the regular ward, 2 days out patient. Our son has been angry and we have all cried. My husband and I felt so guilty ignoring his own diagnosis....he is now 14 and handling all his own injections and testing. I sometimes go back to the guilt and anger but it seems to fade more now. Give yourself a hug and know that you are not alone. I found another Mom of a T1D right around the corner of our block. Thanks for sharing.....
Hi Jennifer,
My son has had T1 for 7 years and just turned 13. My heart goes out to you! I think all parents feel some responsibility (rational or NOT) for their children's diagnosis of T1. I was talking about my son's dx with a friend of a newly dx'ed T1 child a year or so ago and started crying out of guilt and thought: Where did that come from -- so many years later???
My advise would be to focus on being the best parent of a child with a chronic illness that you can be. Where we parents go wrong is that we often want to make up for their hardship by giving extras treats (not necessarily dietary) and letting them off the hook with other responsibilities, etc. Why wouldn't we? Children with T1 have a lot on their plate! But making up for it really harms kids in the long run. We can try to be positive and when our children do make poor choices, not judge them but stay neutral and problem solve with them. We (my family) have all reflected on our own "disabilities" and discussed the fact that we all have obstacles in life. One of my children has an anxiety disorder and learning disabilities and we discussed that too. My kids were practically rolling on the ground when I personally discussed the trials & tribulations of having a weak bladder, which doesn't compare to T1 at all in magnitude (but to them it does)! Normalizing your son's struggles will help him.
Your son is lucky to have a thoughtful mom, cognizant of her emotions and wanting the best for her son. Take pride in that! Lastly, speaking as a former social worker, you might consider counseling if you feel that the negativity is really getting in your way. It can so helpful -- I share that from personal experience. Good luck!
Our daughter was diagnosed in 2009 at age 11. I have had many similar thoughts and feelings as the ones you share here. Seeing our daughter in the ICU while in DKA was terrifying. The endocrinologist made it clear that there is no way to stop diabetes once it starts, that there is nothing you can do (yet) to prevent it from happening, and that we did not cause it. He told me my job was to make our daughter’s life as normal as possible, to be constructive with my energy (and anxiety). His example: let her eat the cake at the birthday party like all the other kids, make an educated guess at the carb count, recheck in a few hours because you probably got it wrong, and correct. Ditto sleepovers, etc…
It was hard to break out of the guilt trip I put on myself, but the more I learned about diabetes, the more I realized that the doctor was right, and I have made “make her life as normal as possible” my goal. I’m not always good at it, especially when fear gets in the way, (think school camping trip) but I am trying. It really helped all of us to talk to other T1 families. I hope you find peace.
Heather I hate it everyday! I don’t even like to say the word. I don’t acknowledge my anger much because I’m afraid if I do it will take on a life of it’s own and I won’t be able to stop being angry.
Betsy I did the math and on the American scale that’s 648. Anthony was 621 when we got to the hospital. He didn’t have symptoms! I was floored. No signs of illness at all. I’m so glad your son was ok! We found out because he had wet the bed which was unusual for him so I mentioned it in passing at his well check which happened to be scheduled around that time.
Karen, I keep hoping that the emotions will quiet down like a volcano no longer on the verge of erupting. Hasn’t happened yet. Maybe talking to someone will help. I can’t spend the next decade or longer guilty, scared and pissed off. I won’t be any good to him if I make myself sick from stress.
I cried non stop for 3 days in the NICU with him. Not the best way to make him feel better! It was hard when he was on shots and having to tell him he had to wait until his next shot to eat cake, etc. the pump is much better. I am a carb researching, food scale using queen lol. I know doctors don’t like lows with kids but they sure scare me less than highs. Low? Ok eat! And it’s fixed. High? Ok let’s correct and recheck and hope and correct again if it didn’t work. Ugh. I’ve gotten pretty good at carb guessing but I sure do prefer solid carbs facts vs being wrong about my guess. The doctor is right though. Make the best educated guess you can and fix it later.
My son was diagnosed February 2013. Sometimes I still feel the "shock" of it all. I do not blame myself. I just wonder if I could have connected the dots earlier with any health challenges he had since childhood. I looked at causality not guilt, anger or fear.
If you are diagnosed with cancer, you can sit back and take the diagnosis and set your watch to the exact day and time of death. You can do the same thing with Type 1. Or…you can take all of that energy and anger and put if forth into teaching your child what you can do and how you can live and turn it into the greatest love that can heal both your own feelings and pass it to him.
Put your energy in to where it is best utilized. The present and the future. It will make you a more loving and productive soul.
K
I understand your frustration, your anger and that you are in a place where you probably want to yell, "UNFAIR!" and, "WHY?" I can tell you that for a long time, and perhaps still today, (6 years later) there are times I too feel this way, too. I struggled with deep guilt and wishing I was the one diagnosed instead of my son. I too wondered, "Why Lord? What did I do wrong? Did I place my job first? Was it because I took extra hours to pay for this damn house? Was it because I couldn't find the right babysitter? Why?" The truth is there is nothing you or I did to cause our child to become sick. We have to come to a place where we can vent, shout, cry and do what you need to in order to let go. But, then, Let it go. Your child needs you. So, you need to get strong and not remain in the place of anger, or fear and guilt. You and I have a child that need us to be healthy, alert and that show that in the midst of it all we have together, even if in our hearts, many times we are somewhat broken. Be encouraged. You are not alone. You are in the right place for encouragement. There will be better days. Receive hugs that I send you way from one mom to another and know that YOU are amazing and courageous and awesome!
It is okay to be angry and you know what? I too hate the "D" word, not only tonight but daily. But, I love my son and love life. So, look for the wonder and greatness in who you are, not what you have. Look in the mirror and see someone that is stronger than what is taking place in your body. I hope you feel better soon. I truly do. Be encouraged.
Our little girl was diagnosed September 15, 2013 at Childrena Oakland. Tomorrow we start fresh at UCSF…I’m relieved to be starting a new chapter.
Thank you 
You’ve pretty much summed up my feelings well. I try not to let the negative overwhelm me but damn it, it’s hard! Unfair? That hardly scratches the surface. What did my baby at 7-8 yrs old ever do to anyone? Nothing! He is a good, sweet kid. But as much as I almost savor the negativity because being ok almost feels like I’m ok with diabetes I know it’s not productive but it’s understandable to be angry, upset, scared, etc. And it’s EASY. The easiest thing is to be mad. But again it’s not productive so I’m trying. Not very successfully sometimes but I am trying.
I just realized I said Anthony was in the NICU when he was diagnosed. He was in the PICU. Not sure it matters but I didn’t want someone else to have incorrect info.
I hope this helps. For When You Feel Guilty and Angry When Your Child Is Diagnosed with Type 1 Diabetes or any Illness
I just completed a Mindfulness Based Stress Reduction class. They are offered around the US and beyond and a site called emindful.com offers a diabetes specific version online. There are also apps and books. MBSR was developed for people with illness and pain, but widely effective. The idea with mindfulness is to detach from but not try to stop these thoughts. As in, “I see my mind is busy trying to help me make sense of this again.” Or “there I go feeling guilty again”. This has been more effective for me than trying to stop those thoughts or argue with myself about whether I should feel this way or not.
impressive that your son diag himself at 13!! I think you have a intelligent insightful boy on your hands! lucky you, and no guilt on you mom, sometimes our kids can be dramatic and we don't know when they are crying wolf or serious. our sons are similar in age, Jacob is 15 please ask if you have any questions it has been 5 years for him. best wishes, amy
great advise! so easy to get stuck in the past, but it is so important as parents to work through our issues so that we do not transfer this fear to our children. Of course fear and anger are valid emotions especially upon diagnosis but in order to move forward and empower our children we must come to a place of acceptance in order for them to do so and learn to live in the present handling all situations with as much grace as we can. As you suggest we should be an educator and cheer leader to our children when it comes to D, while allowing ourselves and our children to acknowledge heavier emotions, knowing tomorrow will be lighter.
Jennifer, I so feel your pain, it seems like you have gotten some great advise here! I think the biggest thing you can do for yourself is release the guilt there was nothing you could have done to prevent this. life comes rolling threw with the ups and downs every single day, there is not always a cause and effect there just is good and bad good and bad, even the 'good and bad' is subjective. Yes this is up there on the bad scale but there is nothing mamma bear can do to take this away, nor was there anything you did to cause this, rather than focus your energy on that which is fruitless, work to educate yourself and your son to live well with diabetes, yes there will be some heart wrenching days, but try to focus more on empowering your son and recognizing all his wonderful nonD qualities, as well as yours, enjoying what ever makes you happy as a person within and without your family. Love your self, love your son, you will be supported through all the ups and downs in your life, we all have hardship but we choose how will react to this and move forward. If you need some inspiration maybe check out a video by one happy diabetic here on tu or on utube, he was diag as a kid and is a huge advocate and is very clear that being a diabetic has made him a better person. those with charmed lives are typically not the nicest people. best wishes, amy
So agree with you, Jacob's Mom, awesome!
Diabetes is a huge wake-up call to parents about how little control we really have over our ability to keep our children safe. My son was 18 months old at diagnosis. Did I second-guess every last aspect of his first year, even the prenatal exposures he may have had? You betcha. Especially since at the time I was carrying him, I worked for a company that is located smack in the middle of a major T1D cluster that was identified just about the time he was born.
But in the end, wondering and beating oneself up about what might have contributed is useless and a waste of time. Everyone does the best they can with the information they have at hand, and you can't blame yourself for not having everything at your fingertips to make better decisions. If I had left my job when I found out I was pregnant and found another job in another location after he was born, would it have made any difference? That's an unanswerable question. And wondering about it does not in any way improve my ability to take care of my son's health.
The load is heavy enough without burdening myself with fear and guilt, so ... somewhere in the last five years of living with this disease, I jettisoned them both. I highly recommend it.