Saturday, January 30, 2010

Things I Need To Know

How do I transition from, "I know your sensory disorder sometimes makes trying new things harder for you than for other people, but remember, new foods are not going to actually hurt you. If something tastes bad you can just spit it out. It won't kill you. Please try new foods. Try everything!" to "Always ask an adult before you take a bite out of anything you haven't had before. Read labels on food packages. Don't eat or even touch anything that says PEANUTS or PEANUT BUTTER or PEANUT FLAVOR or MAY CONTAIN NUTS or MAY CONTAIN TRACES OF NUTS. Don't allow other kids to share food with you. Don't eat at a restaurant, ever, unless I am there with you and I've brought your Epi-Pen."?

How do I do this? How do I tell a child who once spent an entire year of his life starving himself nearly to the point of mandatory feeding tube insertion because he was afraid of eating food that certain foods he could eat without trouble a week ago can now, suddenly, KILL HIM, without sending four years' worth of constant effort to get him to eat well careening back to square one?

How do I convince a child for whom certain shirt tags feel like little knives constantly stabbing his back, a child who can feel a tiny crease in his sock as though it were a rock in his shoe, a child who is terrified of needles, that he must now carry an Epi-Pen with him at all times, and practice repeatedly with a dummy pen to learn how to inject himself with it, and that if he feels a severe reaction coming on and there is no one around to help, he must use it, he must stab himself with a needle, and he must hold it there on his leg, and he must hold still and let the medicine flow, no matter how much it hurts him, no matter how scared he is?

How do I protect a child who was already quirky, skinny, short, bookish, nerdy, dreamy, uncoordinated, red-haired, and dangerously smart from getting teased by children or excluded by adults even more than he already was before, because he now has an allergy that many people seem to find so inconvenient to deal with that they'd like to isolate the children who have it entirely from other kids at school?

How do I convince not-so-medically-savvy family friends and relatives who have seen my kid eat peanuts before without trouble that no, he can't have just a little, and yes, in fact, three bites of a peanut butter cookie could actually, now, kill my son?

How do I make myself really believe the words of our brand new allergist, that my child probably won't die from this, that he may even outgrow it, that there are treatments down the line that could help him overcome this entirely in five years, or ten, that this won't change his life to terribly, that really, truly, everything will be okay?


Carmen said...

We need to talk. I've got an anaphylactic kiddo.

Hang in there. xoxoxo

Farrell said...

Wow. I totally get it.
But I don't get how the allergy just started...I didn't even know that could happen.
And on your previous post: 2 comments:
1. I want to kick the EMFs in the nuts
2. It's amazing what mothers will do for their kids - running for

Jaelithe said...

Farrell, it was only a mile and a half. Not to say I wouldn't have run 10 miles if necessary, but, you know, it takes 10 minutes or less to run a mile and a half if you're motivated. (Which I was.) Especially if you used to be a cross country runner in high school (Which I also was.)

That was actually the first of two times I've had emergency medical people blow me off when there was actually something really serious going on with my son. That's why I didn't call 911 when he had the reaction this time (the one last week). I just took him to the ER myself. Because I figured once I was actually THERE at the ER, they would have to treat him or physically drag me out kicking and screaming.

Luckily for everyone involved, the ER staff were actually really nice and helpful (with the exception of the stone-faced doctor, but there aren't that many kindly cuddly ER doctors in the world - I imagine it's hard to stay friendly when you work in an ER).

Farrell said...

I still don't get how his allergy just all of the sudden came, he was eating peanut stuff for a long time without a reaction....
I'm not doubting you or your doctor, I'm just trying to understand because it's SCARY!

Also, yes. I used to run A MILE in HIGH SCHOOL in JUST BARELY under 10 minutes. But today? I THINK NOT. Though I get what you're saying: MAMMA BEAR takes over and you just DO IT. Still, what you did was pretty amazing; don't ever think it wasn't.