Support Group

We all went to the CHLA diabetes support meeting last August, after K had been diagnosed for less than a month. I wanted to be there for K to meet other children with diabetes and for us to meet other parents with children with diabetes. (Notice I don't say "diabetic" very often? It's one thing I've learned from other t1d parents - is that our children are so many things; they aren't "diabetics", they "have diabetes" - but I'm not going to be uptight about it or correct you if you call her "diabetic".) However, I so did NOT want to be at that meeting either. I didn't want to be at a park with strangers talking about diabetes because I didn't want my daughter to have fricking diabetes! (Was thick in the denial stage.) But, in the end, we were happy we went. We met some really nice people, who were amazingly supportive (hence the name, "support group"). They all could identify with that early stage of shell shock we were experiencing. We all spoke the same language although my husband and I weren't quite fluent yet.  We also felt slightly discouraged at that meeting; we got home and realized - it never changes- we just get used to it. And in the seven months and one day since she was diagnosed, that is exactly what has happened.

For scheduling, irrational, and/or emotional reasons, we never went back to another monthly support group meeting until yesterday afternoon. We saw a few familiar faces, met more people - including some who live walking distance from our house, and the kids had a blast. We learned new things, thanks to the amazing doctor who leads the group - including, much to my dismay, that K's numbers will be more wonky once she's done "honeymooning". They call the period after diagnosis the "honeymoon" because the insulin producing beta cells in her pancreas are still functioning. This period can last weeks, months, or with good control, more than a year. And despite the inconsistency of when the beta cells are producing insulin during this honeymoon, we learned yesterday that once she's out of the honeymoon, her BG will be harder to control, she'll have more (high and low) swings, she'll have more risk for hypoglycemia, and higher overall BG.  For some reason, because I live day to day with this - not really thinking about the future in an educated sense - thought once her beta cells were kaput, she'd be more stable. But, there's absolutely nothing logical about t1d. NOTHING.

One more point of interest from the support group, which takes place in Pasadena, conveniently, just for us ;) : a family came all the way from the South Bay who have an 11 year old daughter, diagnosed for over 9 years to their first ever support group. They said she's always been great about her care and not self conscious, until this school year. It was heart wrenching to hear the father talk so openly about the struggles they were having (an fyi, the children play in another room for most of the meeting). And, selfishly, despite my line above about about living day to day, my head cannot help but wander to adolescence with our own child. 

When I tucked K into bed last night, we talked about the fun girls with whom she played who had t1d like her, all of whom were older and doted on her. She smiled and then said, "I don't want no diabetes." Rather than correct her grammar, I told her that I wish she didn't either and snuggled her. She then asked, "Will it ever go away?" (like a cold...) and I said that hopefully, they'll find a cure, but for now, no, it won't go away.  I gave her a kiss and was happy I could tear up outside her room.