(Why) I Am Not Mad

I am not mad.
I am not angry.
I am not upset...
     (although I know a lot of people who think I should be...)

I do not blame anyone who cared for Carl on Monday and Tuesday for any of what transpired during what we believe was an anaphylactic reaction to a bite or sting.

I am not mad, angry, or upset with any of them because I believe each and every person involved in Carl's care did what they thought they should be doing at the time.

I am not mad, angry, or upset with any of them because I believe each and every person truly cared for Carl as they would have cared for their own child.

I am not mad, angry, or upset with any of them because I remember full well the times when I did not administer epinephrine to Susan and I should have.


I remember the first time.
We were on an airplane.
Susan was wheezing, coughing, gasping for breath.
Clearly -- one major symptom.

I remember the first time.
We were new to anaphylaxis.
I thought it was impossible...
  for Susan to have an anaphylactic reaction without eating something.
There was so much we did not know.

I remember the first time.
A medical doctor -- surely more informed than I
   advised against administering epinephrine, cautioning me on how dangerous it could be.
   (she could not have been more wrong)

I remember the first time.
There was so much we did not know.
We got lucky that day.
Soso lucky.


I remember the second time.
We were in a movie theater.
Susan was wheezing, coughing, gasping for breath.
   I later discovered that she had a dusting of hives on her chest.
Clearly -- one major symptom..and one minor symptom.

I remember the second time.
We were still new to anaphylaxis.
I still thought it was impossible...
  for Susan to have an anaphylactic reaction without eating something.
There was so much we did not know.

I remember the second time.
I was afraid to administer epinephrine.
I was afraid...of the epinephrine.
I was afraid to give it if Susan did not really, truly need it.
   I was afraid...to label what was happening anaphylaxis...
   I was afraid to call it an emergency.
I was afraid...of...so many things.
I wasn't thinking about what should have been my biggest fear that day.

I remember the second time.
There was so much we did not know.
We got lucky that day.
Soso lucky.


With more than ten years of managing Susan's food allergies, and a bit of a crash course in anaphylaxis during the clinical trial, I now believe learning to recognize and manage anaphylaxis is, for most, a skill that develops over time.  It comes with experience, and matures with the understanding that epinephrine works best before someone is in significant distress.  It comes with a matured understanding of the risks of anaphylaxis -- with the understanding that what one can see is only a small part of the picture...one cannot see lungs filling with fluid, a throat that is swelling shut, a slowing heart rate, dropping blood pressure...all of which render the body increasingly less able to do its job.


And I venture to say that some...if not many...if not actually most...parents of children with life-threatening food allergies would admit -- even if only in the deepest recess of their mind, the place they rarely go -- that there once was a time when...(now, on the safety of the other-side-of-the-reaction) -- they themselves should have administered epinephrine, but did not...


I am not mad, angry, or upset with any of the individuals who cared for Carl because once, as hard as it is for me to believe now, there was a time when I might have made a similar series of decisions.  

My original blog post was a call to action, a call for greater awareness -- a call for education on the signs and symptoms of anaphylaxis and a call for more uniform availability of epinephrine in emergencies.  Please, let this be the same.