Photo by Rebecca Gould Photography

Wednesday, April 23, 2014

Sixth Grade Lunch

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), 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."

Sunday, April 20, 2014

Next Year

Susan, earlier today, with her cousin, who lives near Ann Arbor, Michigan

Preparing to go anywhere -- for any length of time -- when you have a child with food allergies requires very careful planning.  There is little spontaneity, ever.

(Susan's purse, which she ALWAYS wears -- thankfully, ever so thankfully...and my purse, too -- JUST to be on the safe side.  Susan also has an extra Epi tucked into her soccer backpack...and, of course, there are several at school, too.  Oh -- and we even have them in our glove boxes -- always have, ever since our pediatrician told us about a time that an expired, extreme-temperature exposed Epi hanging out in the glove box of his car saved a child's life on a Boy Scout outing he was chaperoning.  Can't hurt to have them there, right?)

(Susan's purse, which she ALWAYS wears -- thankfully, ever so thankfully...and my purse, too -- JUST in case.  We've also got Benadryl tucked in her soccer backpack...and, of course, at school, too...oh, and in our glove boxes...too.)

Well...that's a little more complicated.
We keep "snack boxes" in our cars.  They are filled with healthy, fun, tempting and above all, safe snacks.  The outside pocket of Susan's school backpack has assorted safe and non-perishable snacks.  Her skating bag (which is with her a great deal of her time outside of school) is also packed full of healthy, fun and safe snacks.  I keep a stash of non-perishable items that -- in a food emergency -- could meet the nutritional requirements of a meal (even if it is all pre-packaged, preserved -- and possibly not all that interesting) in my purse.  I assess and replenish the stashes regularly.

At this point, we have the out-and-about in-and-around Highland Park and the surrounding communities outings down.  Because of the strategies I have developed over the years, I am comfortable walking out the door -- to destinations within our community -- without a second thought.  Truly -- we just go.  And when I stop to think about it, I am thankful that we have arrived at such a high level of functioning.  (There was a time when it wasn't so great, really.)  We have a handful of restaurants where we are known and where I have confidence in their ability to prepare food for Susan safely.  (There was a time when I was certain we would never eat out again.)  I am confident that I can safely feed Susan in our community.  And should something disastrous happen, we carry emergency medication -- always.

However, as much as we love our community, there is more to life than our little corner of the world.  And while there was definitely a time -- when the severity of Susan's peanut allergy was starting to ever so slowly and unbelievably become clear to us -- that I wanted to wrap Susan in a bubble -- never eating out, never traveling, never leaving the safety of our home, never allowing for the opportunity of risk -- I also knew deep in my heart that I did not want Susan to grow up defined by her food allergies.  Even in the darkest moments -- when I wondered how I could possibly keep my stoic little girl safe into adulthood -- I firmly believed that the best possible gift I could give Susan -- as her mother -- was the gift of knowing how to live life fully, and as freely as possible.  That belief -- and our goal of teaching Susan all that she needs to know -- from reading food labels to placing an order at a restaurant to being ever-vigilant for the presence of peanut around Susan to advocating for herself to -- (and scariest of all) assessing invisible dangers -- has defined us -- as parents, and, ultimately as a family. 

After Susan's anaphylactic reaction on a Southwest Airlines flight -- which resulted in an emergency landing -- and American Airlines' subsequent refusal to transport her (long story there, for another time), we pretty much gave up on the idea of flying anywhere (EVER) again.

Despite what was -- at (most if not nearly all) times -- a paralyzing and breath-stealing fear, I set out to find a way for us to explore the world -- or at least the world accessible to us by van. I could not decide whether we would be likely to have greater success if we stayed with family when we first ventured beyond the confines of our safe little world for the first time -- or if we might do better in a hotel, where we would have total control over the food.  Eventually, and because it seemed like the fun of it all might distract the loud, persistent and always anxious voice in my head, we decided to take a weekend trip to the Wisconsin Dells. 

We booked a room with a kitchenette and invested in a large cooler on wheels.  I packed easy-to-prepare foods, such as macaroni and cheese, oatmeal and my homemade three-bean chili.  I packed tons of fruit, pre-cut veggies (that *I* cut in the safety of my own home), milk, eggs, yogurt, string cheese, safe granola bars (ordered through Peanut Free Planet, mostly fresh from Canada)...and some fun things -- microwave popcorn, Hershey's Kisses, and homemade chocolate chip cookies.  I also packed paper plates, paper cups, disposable cutlery and my own pots and pans.  By the time we left, I had a subset of my kitchen and my pantry carefully packed in the back of our van.  We planned to eat in our room, focusing on the fun to be had in the water.  In my mind, the trip was NOT about the food; it was about the experience -- the road trip, the water park, being somewhere new, doing something different.

Upon arrival, I set to work in the kitchen, feverishly re-cleaning what was likely already clean (but, who KNEW, and I was NOT going to take the risk!) -- even running the plates, cutlery, glasses and pots and pans (which I had NO intention of using) through the dishwasher.  We had a spectacular weekend -- I loved being somewhere new, doing something different...and so did our kids.  The anxious and insistent voice in my head broke through with startling clarity, reminding me always of the hidden dangers, but, I was able to push it aside, not willing to let it control us while knowing that the risks Susan faced any time she went out in the world were real.

Despite the success of our weekend, I was not enthusiastic about the idea of another trip.  Traveling anywhere that requires an overnight suddenly dramatically ups the risks -- and the need for really, really good planning.  By the time we got home from our outing to the Wisconsin Dells, I was exhausted.  While it was fun, it wasn't particularly restful or relaxing for me.

Next Step -- Family Visit?!?

(As an aside -- I could put on my social worker hat and write a book on extended family, food allergies, and the complex ways in which food allergies impact those relationships.  For now, I will just say that we are fortunate, in that while I do not believe all of our family members fully understand the severity of Susan's food allergies...and that many of them are afraid to feed her, we have never had anyone attempt to feed her something unsafe...and I'll take THOSE issues over overly confident, under-informed relatives ANY day.)

Enter my sister-in-law, Kaybee.  Susan fondly calls her Auntie Kaybee.  While I am pretty sure there was a time when Kaybee did not really understand the severity of Susan's food allergies (and honestly -- who could blame her -- I don't think we did, either, initially), she is quite possibly the best hostess I know.  During that very difficult time in my life -- when I knew what I wanted for Susan but could not quite figure out how to make it a reality -- Kaybee invited us to a family gathering.  This provided an opportunity for our children to hang with their older cousins -- a special treat -- and ever so tempting.  Kaybee immediately made it clear that it was important to her that "everything" be safe for Susan to eat.  Wow.  I remember getting teary just at the idea that she would try to do that -- while at the same time worrying that despite Kaybee's best efforts, she would make a mistake and there would be some uncomfortable issue -- or worse.  Even so, I was overwhelmed by her compassion for Susan and by her desire to make her house a safe haven.  After talking about it -- A LOT -- we decided to go.  And as we drive home from a family Easter gathering at Auntie Kaybee's house, I am ever so thankful we went all those years ago.

In anticipation of our visit, Kaybee and I e-mailed back and forth and talked many, many times about ingredients.  I gave her brand names and she hunted them down.  When Kaybee couldn't find something, I offered to bring it (over the years, we have gotten to the point that I no longer pack ANY food for Susan when we go to visit -- and Kaybee's house is the only destination in the United States I can say that about...).  Kaybee mostly got it right during those early visits -- and when she nearly made a mistake (once she had planned to use cross-contaminated chocolate chips), she simply altered the recipe and left out the chocolate chips.  Over the years, she has developed a binder of "safe" recipes.  She knows Susan's likes and dislikes and I can see that she is pleased to be able to tell Susan "everything here is safe for you."  I delight in hearing her say it, too -- and in watching Susan (who really could be a foodie if not for obvious issues) try new things with confidence.  In making her house a safe haven, Auntie Kaybee has given Susan an incredible gift, and I am thankful for her care and efforts every time we are there -- and when I listen to Susan talk with anticipation upcoming visits...wondering in advance about what Auntie Kaybee might prepare...

This weekend, as we sat around the table Saturday night, Auntie Kaybee asked for an update on the clinical trial.  We talked about what it is like to not know whether or not Susan is receiving the drug being studied (Xolair)...and then we talked about the ways a successful outcome might change Susan's life -- and I was reminded again of the ways in which -- despite our best efforts -- Susan's food allergies have defined her life.  Susan hasn't seen a movie in a movie theater in more years than I can count.  It only takes one anaphylactic reaction in the scary dark darkness of a movie theater (seat wiped down, then covered -- all of our own snacks) to pretty much cure one of ever wanting to see a movie in a theater again...

This morning, at breakfast -- which is a more casual affair (and where there are sometimes questionable items) -- there was some bread from a local bakery.  I could not tell if it was safe, and, after looking at the label, Susan decided to forgo the bread.  It was the right choice, and even though it tugs at my heart when Susan has to make a decision NOT to eat something, I revel in knowing that -- at least now -- at eleven years of age, on the cusp of the treachery of teenagerhood and food allergies -- I can rely on Susan to make the right, safe choice.  As I put the loaf of bread down, Susan's eyes met mine.  Almost in unison, we said "Next Year." 

Next Year. 
If the outcome of Susan's involvement in the clinical trial is even a fraction of the success it might be, next year we will not need to read labels in an effort to try to determine whether or not there is risk of cross-contamination with peanut.  Next year, Susan will not have to forgo something that *might* be unsafe because she simply cannot take the risk.

Next Year.
Susan might have seen a movie in a theater.

Next Year.
We might have traveled somewhere by plane.

While I understand that we have what is likely to be a difficult (at least at times) and surely stressful journey in front of is Susan's optimism and steady certainty in the face of what could be paralyzingly frightening that steadies me. 

While I understand that this journey is likely to change our entire family in ways we cannot yet even begin to is Susan's optimism and steady certainty in the face of what could be paralyzingly frightening that steadies me. 

While I understand that there are no guarantees in life -- I read the sixteen-page study document and fully understand the magnitude of the is Susan's optimism and steady certainty in the face of what could be paralyzingly frightening that steadies me.  Always.

Next Year.

It just might be...incredible.