The Summer Doldrums

I haven't felt much like blogging the last few weeks. Probably the summer doldrums. Perhaps you're familiar with them?

Some of it is the looming inevitability of another school year. Even though my son is starting his senior year, there are still stresses associated with the start of school. I no longer have the worry of food in the classroom, or appropriate accommodations, but the shopping lists does change as we consider school lunches, and inevitably key items are discontinued that made up last year's lunches.

Additionally, there's the running around to get medication letters completed. We had our FAHF-2 check-up at the end of July, and of course I forgot to bring the permission form with me. That means a round of faxing since our high school will not take a blanket letter, even though the dose is exactly the same as last year.

Looking back, I appreciate my husband's role as stay-at-home-dad and school bully much more than I used to. The paperwork alone is staggering!

One note: if you are working on a school 504 for the first time, I highly recommend my old community as a resource. There are endless examples of 504s on the site, as well as state-specific guidance. Unfortunately, the group had to move from the old home to this new one, due to spam issues with the last host. If you are looking for something specific and don't find it, just ask — it's probably on the old site.

The rest of the posting doldrums probably comes from having tried to save the world, one poster at a time, a few too many times this summer. I took a hiatus from ALL chat boards a couple years back because I find them stressful. Even the well-meaning posters often have a very different approach to food allergies, and everyone is very, very sure their way is the only way.

And then...of course...there's the next set of challenges looming in October. At our checkup, the head of the clinical trial chirped "so next time is the exciting appointment!" Not the word I would have picked. But, yes, perhaps it will be exciting too, somewhere under the terror. Oddly, as the summer of massive medication has gone on, my son has gotten more optimistic about the results of the trial as I've become more pessimistic. We have not had one wink of food-allergy trouble all summer...no mystery stomach aches or vomiting, no itchy mouth, nada. So, who knows — he very well may be right.

Travelling light with food allergies

The other thing I know that causes summer doldrums is the travel. We don't do much of it during the summer, but this year we did take a few days and visit my brother in another state. I have noticed an interesting phenomenon over the years that I've christened "The Circle of Safety." I seem to have a radius away from our house that doesn't stress me at all. Get beyond that radius, though, and all the worries come out. I look at maps to make sure I know where the hospitals are along the way. I go over the packing list obsessively. I ask my kid "do you have your medicine bag" enough times that he starts making fun of me in response. It takes two days to plan for every day away, which means I need a vacation from the vacation!

I know every mother feels this way. Every trip, every school year, every medical challenge is surmounted one step at a time. But August is that time after the trip and before the school year starts where we can pause at the top of the mountain we just climbed and see the whole range ahead of us. Especially, for us, the gigantic mountain labeled COLLEGE.

My son has told me this summer that he's thinking of a community college. That's o.k. IF (and this is the big if) he's choosing it because he wants the extra time to mature before he leaves home and not simply because it's easier than tackling the really scary mountain of residential food service.

But that's the hell of food allergies, isn't it? It's so intertwined with everything that there's no way to tease out the tendrils of fear that sneak into travel...school...life. Some days you gotta just keep walking and not worry so much about where the trail leads.


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Food Allergies: An Indecent Proposal

When the stresses of dealing with food allergies were particularly bad, usually right after (or sometimes during) a hospital trip, my husband and I used to play a warped little game called "What Would You Pay?".

The rules are simple: name a figure you would be willing to pay to make food allergies go away with the snap of a finger. You can't just say "a million dollars" because you don't have a million dollars. (If you really do have a million dollars at your fingertips, perhaps this blog would be more to your liking?) You have to really think about what not having food allergies in your life would be worth to you.

The first five minutes of the game usually involved us calculating all the things we already pay for because of the allergies. $1000 a year (easily!) for special groceries, chocolate, treats. Say $500 for medications. Another $1000 for doctors and hospital bills in a bad year. $500 a year to provide treats for as many of the class parties, soccer games and birthdays I could weasel my way in to so he wasn't left out.

Then we think about the money we didn't earn because of food allergies. When our son was little, we managed a job share -- 55 hours between the two of us at one company. But, this didn't last and eventually he stayed home while I worked. Let's say $400,000 (10 years at $40k).

Then there are the things we bought to make life easier. The kitchen appliances and camping gear for travel. The van to haul all the crazy stuff around with us. Kitchen-Aide for making bread. Food dehydrator. Popsicle molds. I would guestimate a $20,000 premium over the last 10 years just for this kind of stuff.

So now the game has shifted to what DID we pay and the answer is ~$471,000 over the last 17 years. Only half a million.

Then there's the cost of NOT saving the money from my husband's nonexistent job. We're now looking at funding our son's college education with loans because the choices we made to have a stay-at-home parent resulted in no college fund. Even if you discount the principle, let's figure $60k in interest that he/we are likely to pay over the next 20 years that we wouldn't be paying if the money were already saved.

When we start taking into account what we would be willing to give up in order for our child to be just like the other kids, things start to really get fun. Eating out. All Starbucks coffee forever. Magazines. Gifts. Hosting parties. New clothes - can buy used. Phones. Of course, many of these things have essentially already gone by the wayside, but would we give them up forever? In a heartbeat. Could we come up with $28k a year in savings or second jobs? Not easily, but we could if we really had the promise of a cure. $28k x 17 years = $476,000. Plus the college loan interest - $536,000.

Guess what? We really would pay a million dollars.

Wouldn't you?

Dreaming of the End of Food Allergies

We all dream about life without food allergies. What makes it especially hard for me is that I've heard now for 17 years that "a cure is just five years away." (Now I didn't do well in high school math, but even I know the numbers don't add up there.)

When I get really bummed out, I think about what it would actually be like if the wish came true and my son outgrew all his food allergies:

• He could travel anywhere. No thoughts about whether there's a good enough hospital, close enough, with the right equipment. No concerns about finding appropriate foods. Cruises...rural camping... exotic locations...college semester abroad...backpacking through Europe: all on the completely-manageable list of possibilities.

• He could eat in any restaurant. No more only four restaurants in his future! There would be no calls to the manager before he went, asking about the kitchen in general and their comfort level with cross-contamination. There would be no conversations that border on confrontation in order to ensure that everyone who touches his food really knows what's going on. We would no longer discard whole worlds of food (Chinese! Indian! Italian!) because of the risk. He wouldn't have to carry in his own bread and salad dressing. We wouldn't have to watch him like a hawk after eating. We wouldn't have to argue with food establishments about the legality of carrying our own food in. He could eat dessert. 

• He could kiss a girl if he wanted. No worries about whether she had eaten peanut or put on lip gloss containing soy protein.  No wondering if the hands of the girl he's holding at the dance were just dipped in the buttered popcorn a few minutes before. No awkward questions and avoiding the whole situation because it's just too embarrassing. 

• He could carelessly socialize with his friends. No going back for the medication bag (which looks like a purse no matter what we do). No negotiating which restaurant so he can eat something. No avoiding the school pancake breakfasts and language food days and United Nations weekend trips because they're so food-centric. 

• He could get a part-time job without concern. So what if he had to handle peanut-butter cookies, or make coffee drinks with cream? Without food allergies, he doesn't have to worry any more if he touches his contaminated finger to his eye. Look ma, no reaction! 

• He could have a reasonable amount of stress about leaving home. No thinking about how to find foods, store foods, cook foods. No missing out on communal dining and cookies sent by other kids' parents. No psychological weight of a possible reaction: anywhere he eats, everywhere he goes. No balance between telling people for safety's sake and boring/ annoying/ alienating people by talking about it. No convincing, cajoling, educating, avoiding. No need to question whether they believe, whether they would help, whether they might even harm. 

I know I'm whining. I remember my pediatrician tell me when he was little "just be grateful it isn't something really bad, like cystic fibrosis or diabetes." I understand that, I really do. My child is healthy. He's happy. He's reasonably well adjusted.

But I'm a MOM. I want what every mom wants: no limits for his future. No risks. 

Clearly I can't have that. But I can dream, can't I?