I never know what to say to people when they ask me "how's Ben doing?" They are very pointedly asking me about Ben...because he has CP. But yet, I never know how to answer them.
Are they just asking to be nice? Or do they really want to know? I can never figure that out. I pretty much just say "Oh...he's doing great". And leave it at that. Maybe show off a recent picture or two.
Do they really want to know all the details of having a kid with CP?
I mean I could tell them that he's made virtually no progress in 6 months due to the vicious struggle we're having with his spasticity at the moment. We're in a constant round of botox and casting just to keep up with the status quo. We're supposed to be working on independent standing and maybe even an independent step or 2, but we're just stuck trying to keep him from getting so tight he can't even walk in his walker.
I could tell them that every morning Ben asks me "where are we going today Mommy?" because he knows that we're very likely going off to some appointment with some doctor or PT or OT.
Or do I tell them that I get this feeling that we're about to be referred to an orthopedic surgeon and that surgery scares me to death?
I don't know about you guys, but sometimes I wish there was a "special needs" handbook to help me navigate through this life I've found myself in.
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I have the same problem. My 15yod Hannah has a rare chromosome deletion and a lot of issues from it. Everyone always asks that and I never know how to answer them, my husband always says, she is being hannah! If I say she is not doing good, they act like that's not what they wanted to hear and if I say she is doing good, then you know what happens, she gets sick :)
ReplyDeleteI have been eyeing your blog for updates on the casting and Botox, mainly the Botox. Oia goes in next week for her first ever Botox shots, curious how Botox is helping Ben.... we did casting in July and in retrospect it turned out to be more of a setback than a gain.
ReplyDeleteI can totally relate, even though we haven't been diagnosed (yet). People ask how my little guy is doing and I KNOW they want to hear "Great!" so that's what I tell them. They don't want to hear that his issues are becoming more pronounced and that a trip to the neurologist for "diagnosis CP" is imminent. Everyone wants the happy ending. It's frustrating. But the nice thing is, saying "great" isn't a lie is it, because they really are great :)
ReplyDeleteMy answer to that is usually "Fine," as long as I am fine. Then the people who really want to know will talk more promting more details. I never get too far into it right off the bat because then you usually get a pity response. And who really needs THAT?
ReplyDeleteThank you for your honesty. some days are just tough, and those days its really hard to respond to others. I too wonder how much they really want to know, especially when I'm not feeling positive. I guess it depends on the asker but I usually stick to the short version of "fine" too unless they prod. I'm grateful every day for the blogging community and internet because it makes me feel FAR less alone on days like those. HUGS!
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