The theme of the grief of diagnosis coming and going is common here, and my husband and I really get that. For one, it's like real grief, so we have a way of understanding how this happens and how it will pass. But, last night something happened that caused my 11-year-old to be hit with the reality of this disease and the unfairness of it and just sadness of it. I'm realizing that she's getting old enough to not just be consoled and listened to, but to actually understand that this is a process that humans go through at another level. My mother passed away suddenly a few months before diagnosis, so my daughter does have some experience with waves of grief hitting you at unexpected moments. Have any of you explicitly talked about this with your older kids? How did it go? In case it matters, the specific trigger was around being reminded that a younger sibling does not have D and can, in this case, just go to bed when he's tired rather than having a conversation around what Dex says and how many units are left in the pod.
In our case, it seems like she needs to be allowed to express her sadness or burn-out. It doesn't last long. The other night she was miserable with a high and had tears in her eyes. She asked to be held. All she wanted was to be held while she didn't feel good. She was asleep within minutes, and I was thankful that she could escape in sleep. The next morning she woke with a beautifully in-range BG and was happy from awakening.
Thanks. This approach - listening, validating, empathy - works for us. I'll keep thinking about what might help as she gets older. Thanks for posting.
My daughter is 11 years old. Listening, validating, and empathy usually works and is the best I can do. What doesn't work at this age (or maybe it's just my daughter) is moving on to the "positives" of having T1D: how it makes her more responsible and better able to face adversity in other areas of her life. I guess I understand; when you're dealing with something that makes you feel this badly, it's pretty much impossible to see the imperceptibly thin silver lining.
During the good days, my daughter herself will often list the "good things because of diabetes" and I make sure that those things stay a part of her life, even when I'm beyond tired and would rather curl up at home.
My so also just wants to be held and loved on. He's always been sensitive and has handled his diagnosis and everything since fabulously. But every once in a while, always during a stubborn high, he gets emotional about it. It's happened at school and the nurse loved on him. It's happened at home and we love on him. I think he just needs to know he's not in it alone. Someone just told me the other day that she didn't know of a family who could have handled all this any better. That made me feel good, that people beyond our little clan understand that we are all trying as hard and the best that we can.
In our experience those lousy periods happen and we tend to just let them happen. There is plenty about living with Type 1 that is worthy of anger and grief. Sometimes you just have to let yourself feel what you are feeling. I've never tried to convince my kid that there's an upside to having diabetes. What kid wants to be an "old soul"? What kid wants to know that they have dealing with adversity under their belt? Not mine, she just wants to not have diabetes and since that isn't going to happen any time soon she has every right to feel upset about it sometimes. What we do do is to try and make sure that she's aware and conscious of all the good things that she has in her life and it's a lot. In other words, we give her the space to hate the disease but try to remind her that type 1 is just part of her being, just part of her life and that she's able to do what needs to be done and not get trapped in her sadness about this fraction of her life.
I like how you said this, especially "this fraction of her life." It will be helpful for my daughter and I to focus on this and remind ourselves that T1D is not her whole life. Thanks, Sarah!
