"But he's so normal - we totally didn't expect that!"
"He's so big, just like a normal kid!"
And those were from people that read Acorn's "family" blog, the blog we started when I was pregnant to post updates so we didn't have to answer so many phone calls, and didn't have to answer questions over and over again....the blog that they all stalk for new photos of him, standing and crawling and smiling and sitting in his high chair....the blog where we regularly talk about how much progress he's made on eating (even if we do have a ways to go yet), and how much he weighs, and all those other things you talk about when it comes to kids....Acorn is just doing them on his own timeline.
What made them think that, beyond the tubes, he wasn't a "normal" kid - whatever that means. The opposite of normal is abnormal - and while Acorn is unusual, being a preemie and all, and having a trach....it's not like there aren't other kids like him out there.
And what, then, do they think of kids who have more visible disabilities than Acorn? How do they see children with CP or Down's Syndrome or any of the other things out there that are obvious to everyone on the street? Without the ventilator, people have actually not noticed that Acorn has a bright green oxygen tube trailing along behind him....
"He's just so good natured - so interactive - so normal!" - because, you know, the big cheesy grin in almost every picture doesn't give away his attitude? And did you think just because he has a hard time breathing, that he was catatonic?
Or do they just think that all special needs kids - all kids, all over the world, no matter what their medical,educational, socio-economic, mental, chromosomal, or other status is - are the same? Or that special needs kids belong off in a corner somewhere, like furniture?
"He was so quiet on the flight! I didn't think kids could be that quiet" - I did say, "oh he's got some medical issues, and he doesn't talk" But I hate feeling like I have to explain everything about our lives to everyone we meet.
"He vomited! There must be something wrong with him! Is he sick? Does he have a fever? He fell earlier - maybe he has a concussion!" My response, "no, that's just Acorn, he vomits if he coughs too hard" doesn't sit well. Because, you know, "normal" kids don't just vomit. And we're down to only 2-3 episodes a week, rather than "vomits after every feeding"...if we rushed him to the doctor every time he vomited, we'd never leave the doctor. But apparently as parents, our knowledge of our child counts for less than the opinion of random passers-by, who aren't medical professionals.
Even the EMT student who was along for the ride the last time we called 911 thought we must be doctors...
And Gods forbid what they would have thought back in the days when Acorn turned blue and stopped breathing every couple of days? "Normal" kids that turn blue go to the hospital. It was so "normal" for us that we didn't even call the doctor most of the time.
I hate the word normal, because it causes people to believe that they know what to expect from Acorn - that because one thing about him isn't quite normal, nothing else about him is either. And I think, overall, the world would be a more loving and peaceful place if we'd stop thinking of each other that way.
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