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If it an adult I explain that she has a neurological disorder that affects her eyesight. If they want to know more I will tell them about it. With kids we explain it at their lever. My 4 year old knows Jamie has "boo-boos" in her eyes and the doctors help the boo-boo's go away.
I am very vocal about the food allergy side of things. The questions I get are more along the lines of "Why does he go to so many doctors? He looks fine!" Those questions are irritating because they start with the assumption that I am an overprotective hypochondriac. It is NOT normal for a child to go from eating 3000 calories per day to overnight eating 0 and then 4 months later be eating 1500 and then finally getting back to 3000 and his weight never change more than a few ounces. You can't see asthma until it is already flared, you can't see blood counts dropping, and you can't see internal organs that are irritated, ulcerated, and refluxing. I can tell people what is wrong until I am blue in the face but most people still don't believe me. It is really stupid...
I HATE the "s[he] looks fine" thing... there is nothing more irritating to me than people assuming she's "normal" cause she looks that way. Seriously why does med school even exist if every person off the street can diagnose our kid based on how they look?
Our conversations with strangers go much like this:
Carrie: (out of nowhere) Hi!!
Them: (looking at Carrie) "Hi, what's your name"
Them: "What's your name"
Me: "She isn't able to say her name, she's just learning to speak"
Them: (confused look) "What's wrong with her"
Me: "She's got some delays, but we're working on it"
Them: "but she's so pretty"
Me: (in my head)... delayed kids are all ugly? Does that mean your kid is delayed? (sorry, I get aggravated and think nasty things easily)
"Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live."
Last edited by C&K'sMama; September 28th, 2011 at 12:10 PM.
It's obvious that Ava has some medical concerns since she's attached to various machines at any given time. We get a LOT of stares. Children are quick to ask about the tubes and I'll say something like "That tube helps her eat" or "She needs some help breathing"......Children won't understand Mito, and neither do most adults.
We don't get too many questions, but I am always happy to talk about Kaiden and what I've discovered and his dietary needs . . . I could talk about that all day! Most of the time I don't even mention T21, I just say he had seizures for about 9 months, so he is about 9 months behind, which is very true and accurate. I hate the preconceived ideas that people automatically think when you mention Down Syndrome.
We don't get questions... she "looks" normal. If she is wearting her glasses we just get stares (they make her eyes look HUGE) of we get teh "why is she in glasses" well why do you think? She can't hear? no she can't see!!!!