DISCLAIMER -- I asked for (and received) permission from Susan to write (and then post) this blog. We aren't trying to change things. I am (merely) hoping to help those who do not live with food allergies understand the ways in which they impact Susan's life.
I don't know about other people out there, but I remember how my own skin never seemed to fit quite right as I hit middle school. I was shy -- and awkward -- and very, very reserved. And I was truly never comfortable -- always feeling that I had something wrong with me, said the wrong thing, looked "different" -- whatever. I had a small group of good friends who were, like me -- shy and awkward...and reserved. I think we mostly wished we could float along invisibly -- although I am quite certain we never verbalized that wish.
Susan, our oldest, at just eleven and one-half, is among the youngest of the sixth graders at her school. Her father, Paul, and I have marveled throughout the year (and, truth be told, at many other points along the way), at her composure -- at her comfort in her own skin. This quality has served her well as she has lived with severe food allergies for all of her memorable life. She has *ALWAYS* navigated the fact that she is "different" with what is at least apparent outward composure.
As her mother, I have watched Susan carefully for a chink in the armor over the years. While we have worked hard to ensure that she is "different" and restricted as rarely as possible, we all know she is. We don't talk about the ways she is different -- the places she does not go, things she cannot eat, trips never taken -- because what would be the point? And, while I had never seen a chink before today, I have always known that that does not mean she does not feel the pain of being different -- at least at times.
As a student with a life-threatening medical concern, Susan is eligible for what is called a 504 Plan. I could break out my legalese, but...what this basically means is that Susan is legally entitled to a plan to protect her (theoretically at least) in the best possible way while she is at school. Susan has attended school in the same district since she was three years old. (Yes, she attended a district preschool.) She is at a new school this year, and with the new school came...change.
Instead of being in a lunchroom where peanuts and tree nuts were discouraged and students who brought such foods sat at a restricted table, Susan is now in a lunchroom with "peanut and tree nut free tables." For the unindoctrinated, this might not sound like a big deal, but, it is. Until this year, Susan was more the same than different in her lunchroom. She sat with her class every day. Those students who had peanut butter in their lunches were the ones who were different -- they sat at a special table and were closely supervised to be sure they cleaned their hands and faces carefully when they were finished. This is a highly controversial topic, and I have no interest in even trying to navigate the many minefields in this blog. I do want to say that being "just like" the rest of her classmates was a tremendous gift -- and one for which I was (and always will be) tremendously thankful.
This year, while there are, theoretically, at least, enough tables for each child in that lunchroom requiring such a table (the number is FOUR) to have one, it seems that we all (all, as in -- even the parents!) know that there are actually six tables -- two of the students have rather large groups of friends (read: are popular)...so, while two of the four children require two tables, the other two each (only) require one. While there are no nametags on the tables, in the unwritten rules of the social world, everyone knows "whose table is whose." Susan has one table. She and her friends have never filled it, and, at one point, it was proposed that the extra space at Susan's table be allotted for one of the students whose friends could not all fit at one table. The way I hear it, both groups of students were appalled by that suggestion. Cross-contamination and all, you know?
As we battled the change, it was repeatedly explained to us that -- at this juncture in Susan's life -- it is important (crucial, in fact) that she learn to become responsible for her food allergies. I do not have words for the furor that fills me at the suggestion that the policies of her school will in some way teach Susan to be responsible for her food allergies. She is responsible EVERY SINGLE MINUTE of EVERY SINGLE DAY in ways that those who do not have first-hand food allergy experience are unlikely to ever fully understand. Susan carries her Epi-Pens, does not ever eat anything that she has not vetted with us or another (trusted) adult, only eats at a handful of restaurants, has only slept over at a very few friends' houses...and the list goes on and on. And on. She has self-administered her own Epi-Pen and we need her to learn to become responsible for her food allergies?
While there are countless lessons in life yet for her to learn, responsibility for her food allergies is not one of them -- of that I am certain.
And yet, here we are -- in middle school -- theoretically, at least, with Susan "learning" how to be responsible for her food allergies.
Relationships change constantly -- especially in middle school. Even now, looking back on my own experiences, with wisdom earned over my years since then, much of middle school is murky. I don't really understand how I made sense of it all at the time, and I can only imagine what it must be like to navigate the complexities of the relationships Susan faces in today's world with the added burden of severe food allergies.
So...with that in mind...
While I try ever so hard to make it sound casual (and for sure have my *invisible* social worker hat on) pretty much the first thing I ask about every day when I pick Susan up at school is lunch. Of course, I disguise the bottom-line, most-pressing question in a variety of different ways, but the translation -- gobbledygook aside -- is always: How was lunch? (Read: WHO did you sit with? And...please...PLEASE assure me that you were not ALONE...and that that you never, not for one fraction of a split second feared you would end up sitting alone.) OF COURSE, the rational me knows that Susan has at least one friend who would not allow that to happen (I hope!), but, somehow, that rational me gets lost between our house and the time Susan gets in the car...).
Recently, I have heard something vague between the lines of Susan's answers about lunch. What I hear is a shadow of a thought, if that. There has been a shifting of "alliances" at what had become "Susan's" lunchroom table. Whereas there had been a group of about ten girls sitting there regularly, the group is now smaller. More like four or five girls...if that. Susan was initially pretty vague about who had gone where, but, over the last week, I have started to hear more. Two of the girls have gone to sit with another group. Susan is intrigued. This intrigue is heightened by a tiny bit of first-hand knowledge. You see, once, the group all went to Susan's table. "Mom, they all seem so NICE. I don't have class with any of them, and they came from other schools (read: lunch is my opportunity)."
Today, when I asked about lunch, I sensed something. A sadness...or...maybe not even that -- maybe more a pensiveness...just a shadow of a something. We were, as we usually are, driving from school to a skating rink. Today, we were going to our "home" rink, so, the ride was short. I knew I had to get to work -- so, without seeming interested at all, I pressed for details EVER so casually. Was her new good friend at lunch today? Yes. What about the long-time friend? Yes. Others -- I asked by name, but, honestly, it doesn't matter at all who they are. Some were there and others were...not. It is SO NOT THEIR responsibility to ensure that Susan does not sit alone. While it breaks my heart that Susan is restricted in where she sits, and that she must rely on others to come to her, it might break my heart more to learn that one of her friends felt she "had" to sit with Susan.
Some of those who were "missing" (most assuredly my word) were at the table with the "new" group of girls. Susan reflected that it had been "so much fun" the day they all ate at her table. When I wondered aloud about what was keeping them from coming back, Susan explained ever so easily, lightly with an underlying tightness I am sure I was not meant to hear...(she knew -- and the pain of her knowledge made me teary) -- "one of them brings peanut butter, Mom." Oh.
It seems that a peanut butter sandwich stands between Susan and this group of girls she wishes to know better. Silence enveloped us as I drove. I had ideas -- interventions. (In that sad and still silence, I visualized Susan calling the girl, explaining her desire to know her better -- asking that she bring a "safe" lunch so they could all sit together. I wondered about how it would be received if I, as Susan's mother, reached out to the other mother -- "My daughter wants to get to know your daughter.") In the end, I pulled over, and, looking in the rear view mirror, caught the glimmer of tears in Susan's eyes. Almost in unison, we said "Next Year."