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.
Oh.
My.
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."
Beautifully written. I have a 6th grade PN/TN ana daughter. We understand all too well. HUGS... I wish they could eat together. :-)
ReplyDeleteAs a fellow mother of a daughter with a severe peanut allergy, I feel for you and shed a tear of sadness because I know exactly how you feel. My daughter has experienced this very thing. *hugs* to you and your daughter and thank you for sharing your very heartfelt story!
ReplyDeleteThis is one of the most beautifully written pieces on how difficult and painful it is in raising a child with a food allergy. I have tears streaming down my face. Thank you, thank you for putting your emotions into words. I hope others who read this who don't get what we go through will get a glimpse of what it's like for both child and parent.
ReplyDeleteI can't thank you enough for sharing your experience's, and Susan's, on this blog. I have (and will continue to) inhale each word.
ReplyDeleteWe've only been challenged with food allergies for about two years. It has only been in the last 6 months that the little guy has finally started to realize that he's different. Partly due to my attempt at educating him and partly because he's becoming more aware. Aware of the things he cannot eat because they might make him sick. And I die a little inside every time he recognizes the differences.
Your story is encouragement and hope. Hope that everything can be okay, even with the challenges. Hope that he will grow into an amazing person, like Susan is, despite the differences. Hope that next year might change everything and our children may not have to face these challenges forever.
Thank you both for everything you're doing.