on my mind

In the hopes that I might get a little sleep tonight I thought I'd put my thoughts to paper, uhh, screen.

When I was in beauty school I worked on a LOT of older women - they were my main clientelle. It was fun to talk them into color or a new haircut; most wanted a new do and it was fun to give it them. There were a few, though, that I just didn't get. These were the ones that came in for a shampoo set week after week with nothing to talk about but their ailing health. They were the ones who didn't wash their own hair because they couldn't lift their arms over there heads in the shower and didn't dare lay down in the tub incase they couldn't get back up. As much as I tried to steer the conversation away from their health problems, it always came back to that. I thought, "does this lady have NOTHING in her life besides her bad health?! Can't she think of ANYTHING else?"

I understand now. When you have bad health it IS your life. It's not that you have nothing better to think about, it's that it's all you can think about. It is what you are, it is your lifestyle, it just is the way it is.

...

The words, Severe Food Allergy, don't get the same reaction from people as diabetes, or such and such syndrome, or cancer. But for me, the words have the same meaning - a "disease" that has to managed, and dealt with and lived with. Something that can become, and sometimes is, debilitating. Something that could ultimately take my boy's life.

I have great empathy for people whose children suffer with life-threatening illness, people whose children are confined to wheelchairs, people who have to give their kids around the clock care, people who try to give their kids as "normal" of a life as they can have. From the outside looking in, no one would think of me as a mom with a kid like that... and I am grateful that my son's issues are quite manageable. But when I see him scratching his skin, all over, until it bleeds, when he starts panting and asking for benedryl, when his lips swell and he gets hives around them and in his eyes, I just wish people knew that he DOES suffer and THIS IS A BIG DEAL.

I have a nagging feeling that no one would question me if I said Austin had diabetes; people would make an effort to give sugar-free snacks, or even non-edible treats for birthdays and class parties, no one would think twice about not giving a diabetic child candy.

...

Yet, no matter how I say it, people don't seem to understand. His teacher let someone bring a jar of peanuts to be served at a buffet. More than one friend, has given out PBandJ's or even handfulls of pistachios and almonds while Austin was there. I've picked kids up for carpools and they've brought their peanut butter and jelly in the car with them. "sorry, it's all I had." they say. I understand. Who am I to say what someone can or can't feed their kid. All I know is that I panic every time Austin is around nuts. And I panic at people's indifference and lack of understanding. And I flashback to seeing his unconsious, blue little body at 2, after an anaphalactic reaction.

Everytime Austin leaves the house, I send him with his own food. Before a birthday party, I call the mom and find out what she's serving. I try to make the same thing for him to bring - so he gets to eat what they're eating and still be safe.

On this day, I called the mom, explained the allergies, told her Austin could only eat his own food, asked if peanuts would be served, asked if she could have the kids wash their hands after ice cream. It's hard for me to do that, becuase I feel intrusive and annoying. But if they saw him after a reaction they'd understand. She didn't understand. She said, "gosh, good thing {her son} didn't want to have Rocky Road!" In a rush I think: he's not safe there, she's annoyed that I'm making this a big deal, people are going to stop inviting him because it's too hard to worry about handwashing and what food is safe, I should teach Austin to use his own Epi-pen, no. still not old enough, do I tell her about that now too?!..." I give a courtesy laugh, hang up the phone, and start crying.

It's hard to find a balance, even here at home, with living a "normal" life and paying attention to what's in the food we eat, and even what we don't eat. I picked up Landon from scouts the other day and he jumped in the front seat with a bowl. It had pinecone bird feeders in it, that they had just made. He had peanut butter smeared on his shirt and pants, the peanut butter smeared strings were hanging over the sides of the bowl, his hands had peanut butter on them. I wanted to make him get out of the car, walk home. Instead I calmly got out a napkin, told him not to touch anything. We hung his feeders up high in our tree and threw the bowl in the garbage. He went in and took off his clothes and put them in the washing machine. We washed our hands. I wiped down the door handles to the car and the house.

After Young Women's, the other night, I was cleaning up. There was extra cake (it was Costco - I LOVE Costco cake - the filling is like bismark doughnut filling). We were putting pieces on plates for us to take home. I said no thanks. Of course everyone said, "Come one, just take some." They think I'm trying to be nice or something. Really I don't want it because when someone offers me food all I can think is, "is it safe for Austin? Do I have something similar to give him? Do I have time to make something?" I can't bring it home because...well, how would you feel if everyone was eating cake and you couldn't have any. It's just easier to make my own that Austin can eat.

...

Managing food allergies has been a big adjustment for us. And it continues to be. Austin has been having other reactions lately. He tested positive for wheat allergy. The allergist said not to worry about it because it was such a low positive. But then he started having symptoms. I live in a city with NO health food store - in order to buy the ingredients I need to put him on a wheat,peanut,and dairy free diet I have to drive 55 minutes (one way). It's hard to fit that in because I have 3 kids with 3 different school schedules, and going at night after Cameron gets home is hard too because I barely can get there before the store closes. So, I try to organize and figure out ways to make it okay. I've heard of all the new research, we haven't found a doctor that's willing to try to desensitize Austin, yet. I've heard of chiropractic therapy to help. We'll see. For now I have to get his allergies under controll. That means, figuring out what's causing his reactions, that means restricted diets, that means I really have to organize and plan meals better. I'm overwhelmed by it all, to be honest.

...

One thing I have discovered is a great shake recipe - it's one of our favorite breakfast/afterschool snacks:

in a blender (I use a Ninja, that I love, thanks Mom!) put a handful of spinach (yes, spinach, you won't taste it, I PROMISE!), a cup of yogurt (we use SOY) a couple handfuls of frozen fruit, some grape juice (grape or fruit punch is best because it hides the green spinach color - but we've this with OJ and it tastes good too), and some soy milk to make it extra creamy. Mix it all together until it's smooth and you'll kids will ask for it everyday, especially if you give them a straw!
...

I just love Austin. He's happy and energetic. He is such a good helper. He's a fort building, stuffed animal loving, book reading, ball bouncing, couch jumping, great kid. He is dependable and responsible. He is hillarious. He has a great ability to sense what someone needs and to do it. He is always trying to make someone happy. He handles all of this very well. He's learning to ask, "does this have nuts in it?" instead of, "can I have this?". He's careful about handwashing. He's excited to bring lunch next year when he finally gets to have a full day at school - another thing I worry about, since the school won't go peanut free. And so the circle continues, maybe it does for every mother, the worry...

*edited to add: The comments I've recieved have reminded me that I have so, so, so much support from so many friends and family. And for you, I am grateful.