Reading about so many other IBD experiences is both inspiring and overwhelming. On one hand you have a lot of cure/treatment stories which tend to give you hope that the right treatment/diet/circumstances will keep it from being chronic. On the other hand, you get the other side of it too, where one thing leads only to something else, and any number of drug treatments and surgeries later and still the pain and problems persist.
Somewhere in the middle of this hope spectrum we and most IBD patients exist. A really good interpretation of this is the spoon theory penned by lupus patient Christine Miserandino. It describes an aspect of chronic disease, and as far as I can say, also gives you a perspective of parenting a wee one diagnosed with IBD.
Today for example, we went to an activity at a church which is new to us (we are also new to our area). The kids we dropped off with a nursery there. We dropped them off with snacks, and we have paperwork filled out about Isaac not tolerating soy anything, which also includes almost every merchandised food product. However, almost the whole time I was eating and snacking on the foods provided to us adults, I couldn't help but think about how I sure hoped Isaac wasn't getting any of that sneaked to him by a caregiver with good intentions (soy things just really inflame him). Happily, nothing like that transpired, but it sure made me think about others who have to care so much about paricular allergies/diets/exposures.
Also, nowadays everything is going okay with him. But if it weren't, I can't imagine that we could do activities where Bonnie and I are both doing something for more than an hour (or maybe even that). Until, I guess, we know enough caregivers that we can make arrangements. We'll see--more no that as we experience it. It's probably best to worry about things as they occur and not so much before.
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