Yesterday at a regular check-up with the bear’s CDE we met another family in the waiting room. It was so clear to me at first glance that their daughter was newly diagnosed: she was skinny, dark circles under her eyes, dad looked exhausted, mom looked anxious & stressed out, they were carrying a ton of “stuff” in tote bags from the pediatric center in the hospital. One of the CDEs came out & introduced us all; we told them that the bear had been diagnosed about 2.5 years ago and the other mom just held up 3 fingers while dad said, “3 days.” The rest of the story is that they are interested in hooking up with a “mentor” family so we’ll try to keep in touch with them and help in any way we can.
I haven’t stopped thinking about them since. All the fear, sadness, anger, and being so overwhelmed with what you are expected to learn (oh, and you need to learn it all right now because this is a very serious disease)… They are at the very beginning where it is hardest to see that there will be hope and laughter and good health down the road. In my e-mail to them I really only had a few messages (though I still wrote a long message somehow): 1. something that helped us so much at the beginning was seeing our daughter get her energy back and start to feel better once her body had the insulin it needed – that’s a small (huge) victory that you get even early on, 2. There is no right or wrong – every number is just information that you act on and move forward – you aren’t trying to be perfect, just keep your daughter as healthy and happy as possible so she can do whatever she wants to do, 3. It is ok to feel the full gamut of emotions, it is ok to ask for help, it is ok not to know what you need, it is ok to do whatever you need to do for your family.
The biggest advantage that we had when our daughter was diagnosed was my own experience with T1. I already understood how insulin works in the body, already knew how to count carbs, already had years of adjusting I:C ratios and basal settings. Thinking of this lovely family having to start all of that from scratch while under such extreme emotional stress – my heart just breaks for them. As much as I dream of a someday cure that will help my daughter and all the other people (myself included!) who are living with T1, it would also be amazing if T1 could be prevented so that no more families would find themselves in hospitals and endocrinology waiting rooms, afraid, uncertain, and exhausted.