Other people really just don't get us. The cooking. All the cooking. The obsessive search for recipes. The crazy avoidance rules. The eating out only on special occasions in a handful (if we're lucky) of trusted places.
When a friend of mine heard how much we cook and how little we eat out, she was horrified. "We order in EVERY NIGHT!" she exclaimed. Now, granted, she's at the extreme end of a very economically-privileged bubble. But the message wasn't lost on me: real Americans do not cook any more.
Our kids can seem overprotected and antisocial, even when they're not. My son does go along with his friends to the various restaurants in town at times, but there are times when he'll also stay home. "It makes them uncomfortable when I just watch them eat," he tells me. Sometimes he's just not up for ordering the Coke and trying not to stare.
I know what he means when it comes to social avoidance. There's no way to fly under the radar; showing up with unsolicited food for just your child always required explanation. If I do it without warning, people are offended. If I try to explain before the party, the host usually will want to try to make something safe...and try is the operative word. Years back, I used to attempt the crash course in kitchen cross-contamination, label reading, substitutions. Now I know better. There's just no way to explain it without opening up that wide cultural gap and I'm tired of people looking at me like I'm wearing a Quaker cap. Far easier to just beg off from social events that involve meals.
Our tribe is so very important in life. There's nothing worse than feeling isolated from, or even shunned by, those who should understand what we need. It's easy to start to think of ourselves as a group apart.
The problem is that we don't live in a community of individuals dealing with the same issues like the Amish do. Our food-allergy connections are mostly virtual ones. It's great to learn on a chat board that applesauce subs for egg, but that doesn't help with the grind of making those three meals and after-school snack every day. Plus, these ties are surprisingly tenuous. It's easy to chat on-line with someone for years and then, when you finally meet in person, get a completely difference sense for who they are. Face-to-face interaction trumps the internet every time.
Respite care is also a huge issue. For most of us, there are only a few people who really understand food allergies. What do we do when those people aren't available, especially in an emergency? Even in the everyday, food allergies take a toll. Date night can be a difficult goal when a trained, adult sitter is required. And those elusive weekends away? Unfathomable for the food-allergic parent. Yet emergency backups, date nights and weekends away are necessary if we are to keep our stress levels low and our marriages together.
If we identify too much with the "tribe" of food allergies, it's easy to see people who would genuinely help us as hostile outsiders. "It's hard to make them understand" can quickly become "they really don't want to understand or help."
I know I need to do a better job of asking for support. It takes a village to raise both a barn and a kid, as the sayings go. Time to hitch up my buggy and mingle among the English.