Last night, for the first time, my daughter screamed at me, “I don’t want diabetes anymore.” Screaming, crying, hysterical at the top of her lungs. She is almost four and a half. She was diagnosed with Type 1 Diabetes when she was 13 months old, she started her pump at 14 months. We have been changing her pump site about every three days for the past three years. Tonight she decided that she was scared and didn’t want her pump on. We recently tried to get a sensor on her and she is adamant that she doesn’t want it. She will run and automatically go into hysterical crying mode. In trying to make her control better by using a sensor, she has become scared of her pump. Her pump is her lifeline. She needs insulin to live. We had to change her site tonight because for some reason her old site started to bleed and she got a no delivery error on the pump at dinner. In three years this had never happened before, but she is older and playing rougher and outside in three feet of snow this week, so these things happen. But this resisting…it’s as if she is starting to finally understand that she has diabetes. Even though she still doesn’t understand it fully, she knows she doesn’t want it. Tonight she looked right at me and screamed, I don’t want diabetes anymore and I didn’t know what to tell her. I said I don’t want you to have it either. It took all my might not to cry with her.
This disease is all about control. I am with her 24 hours a day trying to control her blood sugar, constantly trying to predict how she will react to the next activity or food that she eats. When she screamed at me…it stopped me. I can’t cure her. I can’t give her what she is crying for. For the first time I felt truly helpless and it felt horrible. She makes me smile everyday and the best I can do right now is teach her acceptance and faith that we can raise money for a cure. It doesn’t feel like enough.
I’m really feeling sad for u now and I feel your pain. It’s def not easy and my son has taken off his pump at times and said he doesn’t have diabetes anymore (he’s 8) . Kids and adults esp care takers do go thru diabetes burnout because like u said u are with her 24/7 and of course it can take a toll on both of u… Wishing u best of Luck! Tmw is a new day
Thanks sambat7, I never thought I was burned out, but it does make sense. I actually love when she just gets out of a bath and has a few minutes without her pump on. Good luck with your son, I hope they see a cure soon.
Thank you.
My heart hurts for you. None of us want diabetes and we definitely don’t want it for our children. But it’s unfortunately not something we get to opt out of.
And I completely understand your daughter’s frustration with an extra site change. I’m okay doing the normal changes, but when I have to do an extra it’s like adding insult to injury. But again, it’s not something we get to opt out of.
I was diagnosed at age 4. When I look back at my 36 years as a diabetic, there are ebbs and flows. Some days it didn’t seem like a big deal, some days it felt impossible. I went through almost a decade trying to ignore it.
The truth is diabetes is like the rest of life. You have good times and bad. You have to learn to handle both and to not get bogged down by the bad times. Of course your daughter is 4, so that isn’t going to happen now. But she will eventually get there, just like she will mature emotionally in other ways through her life.
For now it might help to figure out which diabetes management tools give you the best results and let some of the less helpful ones go. The expectations for diabetics these days are intense. We all have to figure out how to make diabetes fit into real life. Know too that you can lighten up in your control a little bit. The world won’t end if you don’t test for a day or don’t look up every carb count. I’m not advocating bad control, but as a person who lives with diabetes 24/7, taking a small break can help you persevere over the long haul.
There are good books on diabetes burnout. You might see if one will be useful to you. Ironically enough, what’s helped me get free of a diabetes funk before is reading about people who’ve lived well with diabetes. Sheri Colberg’s book “50 Secrets of the Longest Living People with Diabetes” helped me see I wasn’t powerless and that all of this trouble is worth it.
My 4 year old daughter Madison was diagnosed this past week with type 1. I never imagined the helplessness and fear that our family has been introduced to. I have cried more in the past week than in the past 30 years. My faith has been tested by the screaming and the absolute terror in her little body as we have had to restrain her and are forced to hurt and scar her. We have found that she can do her blood tests on her forearm and it does not hurt or frighten her as much. She is a champ with the insulin injections, we use her bottom and she is pretty much volunteering to get it done. I am amazed by her courage and cannot imagine the anxiety she has to endure when it’s time for her tests/shots. I am hopeful that we will win the battle until there is a cure of some kind. We pray for all of you out there dealing with this monster and hope to learn from/contribute to the fight in any way that we can. Any advise/suggestions/positive input, are welcome. Thank you
