As a Food Allergy Mom, I find myself doing it all the time. Bargaining about the quality of life my food allergy kids have.
"He can't eat normal foods, but what he does eat is healthier."
"She can't do birthday parties, but she's better off not taking the risk."
"He's covered in a rash and is so miserably itchy he can't sleep or eat or play, but at least it's not Anaphylactic."
"She's got Anaphylactic Peanut Allergy, but at least it's only one food I have to worry about for her."
And then one day it hits me what I'm dealing with between the both of them. One can't eat anything and the other one can be killed by one of the most popular convenience snack foods in our country. And it also hits me that I've put on blinders and stopped even trying to think about what a life without food allergies coulda, woulda shoulda been like for them.
I look at 'Lou and think,
"Well, he looks terrible and he's broken out just about as bad as he gets, but this only seems to happen about 4 or 5 times a year now and really the itching is only terrible about 15% of his entire day...so, it's not so bad, lots of people have it way worse!"
I intentionally push away thoughts of studies showing prolonged inflammation being linked to higher risks of cancer and autoimmune disease. I consciously avoid calculating how much of his 3.5 yrs he's been healthy compared to how much of it he's been reactive and ill.
If I start to think about how freaking sick I am of he and I having to eat the same 24ish foods for over 3 years now, I sternly remind myself of the kids with EE who have permanent feeding tubes attached to little backpacks so they can still be mobile while they're getting their calories. They don't get to eat at all anymore, in many cases. They play with and smell food while their families eat, so they can get a sense of the ritual of it, but they can't even eat anymore at all. It's happening more and more frequently to kids with food allergies as multiple and sensitive as 'Lou's.
I also go to bargaining instantly when things get bad.
"Okay, here we go again, I don't know what he's reacting to now, but whatever it is, I can cut it out - we can be fine on one (or more) less foods - (Hey, we still have about 24 things we can eat in the whole wide world, why the hell not?) nothing can be worse than that first shock and the withdrawals from cutting out the top 8 allergens plus corn and beans, lentils & sesame, my beloved cat & all my favorite skin and laundry products - we'll be fine!!"
Once in a while, something just happens. Somehow the blinders get knocked askew. And I get a glimpse. I see a normal 3.5 yr old next to my guy. I see that other toddler is 2-3 times bigger than 'Lou. I can't tear my eyes away from his or her beautiful, intact, well-filled, rosy, gleaming skin. Suddenly he looks like I've raised him on fish food all his life. He's all dark circles, thin lifeless hair and red, inflamed, broken skin. His head is too big, too, while we're at it. He is the only child I have ever seen who can fall while standing flat on his feet in the middle of an empty room and land right on his head. He's like a human lollipop.
Or I'll be out in public with him and he'll see another child eating a soft serve ice cream cone or a bag of french fries and say to me,
"What's that, Mumma?"
He has no clue what the ice cream truck is - he calls it the 'Music Van'.
Or I'll watch my daughter light up like a light bulb upon seeing another little girl or baby...and then watch the light fade from her eyes as she comes over to ask me, "Can I touch?"
No public play areas, no birthday parties at ice cream parlors or most food/play venues, no birthday cake from bakeries - my 5.5 year old daughter already knows without asking these aren't options for her.
Once in a very great while, it really gets me down. It's not something everyone immediately understands or empathizes with. In fact, you can tell someone you have children with severe to life threatening food allergies and get anything from outright disbelief, misinformation about how they are overdiagnosed and your child(ren) probably really don't even have them, mild curiosity at the freakishness of being allergic to everything "normal" ppl eat all the time to defensiveness that anyone would suggest people can be allergic to something they themselves hold dear.
Sometimes I just get tired.
Sometimes I get angry at the unfairness of it. I never wanted this for my children. To be happy at the half-childhoods they are getting without normal activities or foods. To be at the mercy of ignorant people who want to put my children at greater risk rather than do a little research and learn what a valid concern this is. To learn to do without, to be left out, not to expect what others can take for granted...some days it gets hard to even call it bargaining when I can't really see the plus side for my kids in any of it.
I'm not pining to give my children the foods that probably made them sick in the first place, I'm just mourning at having to negotiate a percentage of my children's quality of life away.
So there's the moody preamble to my latest update on 'Lou and the Green Tea trial. Ooops, was my bitchy showing? Ah, well - it is part of the title of this blog, now you know why.
By day 5-6 of using the Green Tea twice daily, 'Lou broke out anew. Unlike his normal food reactions, this rash has covered him from head to toe in a beefy, inflamed rash with no individually defined bumps or sores. It's not concentrating at his hands and feet, like his worst food exposures do. It's also over his buttocks and even his nose, which I actually just realized I've never seen on him before. I began the oral steroid and antihistamine for him on monday, June 20, 2011 and the pics above are from today: Wednesday, June 22, 2011. They haven't touched it yet, at 48 hours.
However, I have to say the Green Tea may not be taking away the redness and inflammation with this new, more severe outbreak, but it is *still* helping with the itching. He's only itchy about 2 or 3 total hours out of 24 (See, there's that compromising and settling for less again -how much misery can my child deal with and I still have to call it okay?) and if I soak him with it before bed, we are still getting almost a full night's sleep with only about 1 or 2 wakings to comfort nurse.
The best discovery is that when I let him start spraying himself whenever he feels he needs it, he somehow doesn't feel so helpless, overwhelmed or victimized by the discomfort. I guess it's kind of like the way hospitals let patients start administering their own pain meds. Just feeling in more control can help with the perception of pain/discomfort. So, i'm still using it twice daily on him and letting him spot- spray itchy parts as needed any other time.
I want to take comfort that though these reactions are bad... and last a long time...and keep him from growing well... at least they're not Anaphylactic, that would be the scariest! And then I remember,
"Oh yeah, I have one of those, too!"
And she's starting school in the Fall and I get to deal with the worry and red tape over how to keep her safe and alive there while trying to keep him healthy and thriving at home. And it always happens when hubby is out of town for 2 weeks and I'm on my own with 5 kids out of school. (It really does! I looked up 'Lou's allergy log at a friend's recollection and we were doing this last year in June, too!!)
Some days are just made for the corn, soy and gluten free margaritas! What do other food allergy moms do when they're feeling discouraged?