Photo by Rebecca Gould Photography

Saturday, May 14, 2016

Emergency Landing

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.

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…

(Yep, that's sweat -- we really, really ran for it!)

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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