Truth is...

...it's never a routine kid-handoff when a set of epi-pens and the instructions, "Feed them ONLY the food I've given you to feed them and Absolutely nothing else or I'll kill you, and also no play-doh." is involved.

...it's beyond a major hassle (and I cannot over stress this) saying Yes to visits, but making clear, absolutely clear that I need a darkish room with a fan or other comparable noise and no screaming kids between the hours of 1:30 and 3, or I WILL get a migraine, fall asleep at dinner, and hate you.

 ... it's a really sad (stressful, shocking) unfortunate misunderstanding when I ask you not to bring your goddamned allergens into my house, my one safe zone, and somehow you misunderstand that and bring them anyway. Or you whine about not being able to bring them. Or you eat them RIGHT BEFORE walking in.


We might look like most people, but we're not like most people at all, so I can see why most people don't understand. But life is one long perpetual pain and hassle, and I'm beat, because even those closest to us don't understand, because they are not us. They don't live in our bodies, even if they occasionally eat our food. They don't have a migraine every single waking minute of their lives and call a "Flare Up" what the rest of the earth calls a "Migraine", a migraine that literally, never goes completely away, and if I ever treat my body as if it has, it flares up with a wicked vengeance, 100effing% of the time. 


If I don't advocate hard and loud for myself and for my kids, no one will.  Not that it's anyone else's job, but that's why I don't really want to go anywhere or do anything.  Because it's one giant battle for survival, at school, at the store, at the playground, and even occasionally in my own damn house. And unfortunately, it's not like I can say what I have to say calmly and politely for most people to understand.  I have to say it over and over (to some of the same people mind you) and they often STILL won't get it.  It's just too much work, too much misunderstanding, too many idiots, too little willingness to communicate or cooperate, and I'm too burnt, and the consequences are too real.  


Truth is, finding balance is the hardest part of all.  I have to run a house and raise my kids, but not overdo it and trigger more migraine flare ups than I'm already going to get just by living and breathing.  I have to do Gobs of research and make weird ass food, but not let it overwhelm me; I still have to enjoy feeding my family.  But the hardest balance of all to strike for me, is probably a result of the fact that I am a major people person.  I have to be gracious with the dense, yet advocate FIRMLY (Loudly and in your Facely) or we all get hurt from the wrong foods or an off schedule.  And I think it is a pity and a shame.  My Neurologist, has no such pity.  And I kind of love her for it.


Truth is..."But naps are so good for you!" She says as she smiles at me.  I tell her that it keeps us from going places and doing things like normal people and I kid you not, she looked at me blankly and kept smiling, as if that weren't actually important.  I griped that I had been feeling so good lately that I majorly overdid it by baking two different items in one day, and was rewarded with a three day migraine for my efforts, and she was happy for me that I was learning my limits!  She's so positive and happy with my progress, I mean, am I missing something?!? Is it Not a total shame that we're so bizarrely different from the rest of the world?!!!  (Er...the U.S. since most of the rest of the world takes an afternoon nap as our bodies suggest we do...pause for genuine question reflection...)  I'll tell you why for the first in my life, I don't like being so different, and it's not because of the hassle of researching and buying and making weird ass (expensive, hard to find) food, and it's not even because school could actually kill Emily some day; It's because it hurts.  


Being the only one able to fully stand up for myself and my kids hurts.  Being the only one willing and capable to explain over and over to people who don't get it, don't believe it, or don't care, hurts.  I don't mind explaining at all, I mind the disbelief, the scorn, and the numbskulls.  And some backup would be nice.  And some backup who looked like Captain America, well...just sayin'. (;

Having the kids in school kicked my butt.  Having them on Summer break is kicking my butt.  I'm seeing a disturbing pattern here.  We have one secret weapon left: Grandma Is Now On Summer Break Too.  Perhaps, PERHAPS with an extra hand around, I'll be able to contemplate what I suspect my Neurologist was trying to tell me.  And maybe I will find that balance between Advocate and "Yell-at-you-with-my-eyes" with "Give you the face-finger".  Funny the things you can still do on Botox.