When Susan was
almost four, she had an anaphylactic reaction on-board a Southwest Airlines
flight. We had done everything “right.”
We had booked
the first flight of the day.
We had informed
them of her peanut allergy.
We had
pre-boarded and wiped her seat and surrounding area down.
We had covered
her seat with a Plane Sheet (sadly, I think the company has gone out of
business -- but think ultra soft mattress pad for an airplane seat)
We brought our
own snacks.
And yet, still…
Within minutes
of boarding, her eyes were red, watery…and her face started to turn an alarming
shade of red. I gave Susan Benadryl
(standard protocol at the time), and told myself that she would be fine.
After all, she hadn’t eaten anything.
And yet. as we
gathered speed, hurtling toward departure, Susan suddenly began to have
difficulty breathing.
I pressed the
flight attendant call button.
We were
informed, over the plane’s PA system that we needed to turn the call button off
before the aircraft lifted off.
I remember
hearing Susan gag and choke on her own saliva while frantically pressing the
flight attendant call button with one hand and digging for her EpiPen with the
other.
I remember the
flight attendant coming to our row, peering down at me, at Susan…
I remember the
flight attendant calling for a doctor.
I remember the
doctor on board instructing us NOT to use the EpiPen, cautioning us that since
Susan had never had epinephrine before, the risk of administering it was too
great.
I remember
listening to the doctor, torn between wanting to do as the doctor said and
thinking -- feeling -- believing that I should try to administer the EpiPen
with my shaking hands.
I remember
Susan’s younger siblings crying, her father trying to quiet them.
I remember how
hard it was to think with all the
noise…
…the inhumane sounds coming from Susan
…my twins, who were nearly hysterical
…the noise as they prepared to make an
emergency landing…
…the noise of the passengers -- wanting to
know what was happening, why we were landing before we were ever even really
properly in the air
…the doctor, telling me to give Benadryl, to
watch, to wait…
…the stewardess telling me that there would be several ambulances waiting for us
…the noise in my head, as I tried to figure
out what to do.
I know now that
we were on the precipice of a crisis.
I know now to be
thankful for every minute we have with Susan.
I know now how
close we were to a very different ending.
While I
suspected Susan was allergic to peanuts long before she was formally diagnosed
(that’s a story for another time), that day will forever in my mind mark the
beginning of our journey for a freer, more normal life for Susan. It was that day that my husband and I
realized we were dealing with something unfortunately rare -- anaphylaxis
without consumption.
While I know
there are doctors and scientists and researchers who do not believe one can
have an anaphylactic reaction without consuming a food, as Susan’s mother, I have
lived something different. I have come
to believe that it is virtually impossible to tease apart an airborne reaction
from a contact reaction, for it only takes a trace amount of an allergen to
enter a mucus membrane…and while I know Susan did not eat peanut on that
flight, I also know she had an anaphylactic reaction to something, and I will
always believe it was to a trace amount of peanut that somehow found its way
into her body.
I remember
feeling powerless, helpless, hopeless when I realize that my enemy -- Susan’s
enemy -- was invisible. As Susan’s
mother, I was finding it hard enough to feed her safely -- our food allergy
labeling laws are such that manufacturers are not required to label for
potential for cross contact with allergens from one product to another. While I could read the ingredients on the
back of a package, the packaging simply did not provide enough detail. I was calling manufacturers and grilling them
about their plants, their production policies, trying to determine what foods
were and were not safe for Susan.
And now…now I had to worry about
something invisible?
I remember,
after Susan was stable, sitting in the quiet that often follows chaos and
wondering about the power of this invisible enemy. I remember marveling at the fact that
something I could not see had the power to kill my daughter.
I remember thinking Susan could never go
to the grocery store with me again.
I remember thinking we would never eat
out again.
I remember wondering how I would be able
to send her to school…I envisioned tiny peanut bombs all over playground
equipment and doorknobs and desks…
I remember the feeling of panic that
settled in over me, like a heavy blanket…I remember wondering how I would ever
find my way…
I remember desolately wondering what
Susan’s life would be like…only vaguely understanding the financial and social
impact of food allergies.
While I suspected Susan was allergic to peanuts long before she was formally diagnosed (that’s a story for another time), that day will forever in my mind mark the beginning of our journey for a freer, more normal life for Susan.
And incredibly,
we are getting there.
We have two years of oral immunotherapy for peanut behind us. Susan now eats 10 peanuts every morning and has a "peanuty snack" every afternoon. While her journey has NOT been easy, it HAS afforded a degree of safety and changed Susan's life dramatically.
We have two years of oral immunotherapy for peanut behind us. Susan now eats 10 peanuts every morning and has a "peanuty snack" every afternoon. While her journey has NOT been easy, it HAS afforded a degree of safety and changed Susan's life dramatically.
As I sit here writing
this, I am on a Southwest flight with Susan.
We are flying to Orlando, where she will speak at Food Allergy Research & Education’s national conference tomorrow.
I was sitting
with Susan as she completed the on-line speaker application in January. When she reached the section in the
application that required her to upload her CV, she paused, asking “Mom, what’s
a CV?” I explained. We discussed.
I proposed she leave it blank and move on. She had a different idea. She created an untitled word document with
nothing more than the link to How to Stay Alive and uploaded it into her
application. Problem solved. Even so, I never dreamed Susan would be
selected as a speaker, for it seemed based on the application that they were
looking for speakers with expertise different than Susan’s. I am so thankful that they saw the value in
Susan’s hard-earned expertise.
We are on the
last flight of the day (and, in fact, sprinted for it). We did not inform the airline of her allergy,
nor did we ask them to refrain from passing peanuts. I did not wipe down her seat, nor did I cover
it…and…while I am nervous, I am also just ever so slightly…pleased…thankful…incredulous…
Susan’s journey
has been about so much more than just eating
peanut. While I once hated peanut and
the way it restricted our lives, the way it hung ominously over any future I
tried to envision for Susan, I have come to appreciate the role peanut has
played in Susan’s life. Susan’s food
allergies have not defined her, but they have shaped her, matured her, stretched
her…made her who she is today.
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