When my daughter was first diagnosed as T1, I had several friends and friends of friends contact me and offer to help, give support, or provide information. I emailed some questions and got some advice. I called a woman who has a T1 teenage son and lives in my neighborhood. I asked her about diabetes and athletics, because her son is a runner and my daughter is a softball/field hockey player. I told her I wanted to get together, and I would really like to get our kids together. Nothing happened. All my leads turned cold.
I went to a support group meeting for Parents of Teens with Diabetes. One man monopolized most of the discussion (as often happens at support groups) and when he said, “Our kids could die at any time” I HAD IT! I said I couldn’t operate with that on my mind at all times, so it just wan’t going to be my approach. I haven’t been back.
But I logged on to TuDiabetes, set up an account, started asking questions and got all kinds of answers! It helped me so much, when I couldn’t get doctors to respond and we had no idea what was going on or how to handle things. I asked why Sam felt so tired, many members suggested thyroid issues, and I pressed the doctor harder to figure out if that was the problem. (It was). That’s just one example.
Sometimes I vent in a blog, because it feels like our world has been turned upside down and it’s hard to ride it out every day. In this case, members leave me comments that inspire me to keep going. It’s a give-and-take relationship. I like to check on members that I feel I have a “relationship” with and see how things are. In that case, I may be the one leaving a note to hang in there.
What those people promised me post-diagnosis didn’t pan out in real life, but I did find it. On TuDiabetes.
And I feel strongly that if I hear of someone in my neighborhood struggling with a new diagnosis, I will be there for them. They can call, I will meet them, I will email or text. That’s the way it should be. But I’ll also tell them to check Tu.
