This past week we had* appointments with the Bear’s CDE and the practice’s associated social worker. I didn’t have anything specific for the social worker but was just feeling like it was important. The BHE assured me that this was fine — it’s ok to say that something feels important and what does she (social worker) think?
By the end of the hour, I felt like I had gone to therapy**. I thought that maybe the Bear would talk a bit about how she feels about diabetes, her pump, the CGM — all those mornings when she cries or screams about hating to wear her pump (which honestly aren’t very often but so traumatic for me that they loom large in my memory). Or that the social worker would get her to talk about school, other kids. Really, I didn’t know, but I didn’t expect to be talking about my guilt about the Bear’s eating habits, high bgs, combative lows. My. Guilt.
D-parents are in a strange relationship with chronic illness. They (we) are managing the illness but not physically experiencing the symptoms. [disclaimer: yes, I also have T1 so I experience the physical manifestations of this disease, but I don’t experience the Bear’s T1, only my own] We have our own feelings about the disease and its impacts but we aren’t the patient. I know many D-parents worry that they can’t fully understand what their child is going through, and I have that same worry. I was diagnosed at age 29, so never had to deal with diabetes at school or through the teenage years. At this age I think it somewhat helps the Bear that I also test my bg and change out pump sites. But at some point, that won’t be comforting — it will be one more way in which she wishes she wasn’t like her mother and she’ll need other people to talk to. <– That’s kind of a digression, sorry.
It’s bizarre to have the responsibility and worry of the chronic illness without actually having it. The social worker clearly sees this all the time with the families she is working with. The Bear seemed perfectly happy playing with the toys in the office and gave us both a look of disbelief when we wondered how she was feeling. Duh. Fine.
I set a few goals for our family around healthy eating and the Bear trying new things and we got our school orders from the nurse. And that’s kind of diabetes in a nutshell. Emotional struggles and everyday life; playing, talking, and solving problems.
*Well, when we got there it turned out I had the day wrong and we were there 1 week early. We drive about 1 hour to get to the appointment and of course I had taken time off from work. Our fabulous practice managed to do some magic and get us in to see the social worker about 30 minutes after our first appt was scheduled and then one of the nurses for pattern management, etc. I was so grateful.
**Which I have 🙂 My therapist who specializes in chronic illness & T1 diabetes pretty much saved my life 6 months after my diagnosis.