Photo by Rebecca Gould Photography

Tuesday, February 18, 2014

In Susan's Head

Many people have wondered about Susan's bravery in the face of peanut (and then her Epi-Pen) last week.  And in all honesty, even though she is my daughter and I live with her, I, too, have found myself turning her calm over and over in my mind -- in wonderment and in awe. 

Yesterday, with nearly a week between Susan and the food challenges which ultimately lead to her self-administration of her Epi-Pen late that night, I decided to try to better understand what was going on inside her head during the food challenges. 

I do not generally believe in wearing my professional "social work" hat with my children (or spouse, for that matter!), but, occasionally, I find myself with a strong need to put that hat on.  Before doing so, I gave Susan fair warning, saying, "A lot of people have wondered how you could be so brave last week.  Can we talk about it?" 

She was nonchalant -- the expression on her face reminding me much of the expression on her face as she ate that chocolate pudding last week -- knowing it MIGHT contain peanut protein.  "Sure...but, I wasn't really being brave." 


Not brave?!?  We know several grown adults living with food allergies who have openly admitted to Susan in the last week that they would not be brave enough to do what she did...a true litmus test for me of her bravery, as those adults know what it is like to live with life threatening food allergies...and have all experienced anaphylaxis first hand. 

"Tell me more..."

"Well, as I was eating the pudding, I knew that either something would happen -- or it wouldn't.  I knew there were two nurses and a doctor there in case something happened, and I trusted you and them to take care of me." 

I marveled at the incredible trust this 11-year old girl placed in all of us.
And I took a moment to be thankful that this child, who could be fear-filled and anxiety-ridden, is not.

"Still, it must have been at least a little scary eating something we have spent so many years avoiding."

With the calm clarity of an old soul:  "Well, maybe a little, but, I really didn't think about it that much.  If there is ever going to be a treatment or a cure for food allergies, someone has to do this stuff.  And if I am lucky, the trial will help me -- other people, too."

"Yes, I so hope this trial helps you -- and that it moves research toward a cure forward.  How were you feeling when you realized you were going to need the Epi-Pen?"

"Well, I was wishing I wouldn't have to have it, but, I also knew I wanted to know I could do it for myself.  I'm so glad I did it with you -- and next time it won't take me two tries."

As is the case with every truly brave person I know, Susan does not see herself as brave -- she is filled with resolve and certainty and is just doing what needs to be done.


  1. Found your blog through MOCHA. Thank you for sharing Susan's and your story. You are one brave mama! My sons have a peanut and a peanut-tree nut allergy and I can only imagine the fear you experienced during the first food challenge. Can't wait to hear more of your clinical trial journey. Thank you to Susan for making a difference for kids everywhere living with life threatening food allergies.

  2. Hi Caryn. Thank you for creating this blog to document your daughter's journey through OIT. I wish I had made a blog as well. On the bright side, I created a fb group called "Peanut Anaphylaxis Cure" that is dedicated to OIT-- and we now have 2000 members! We are sharing the link to your blog in our groups. We also have Private Practice OIT and OIT Trials. Please feel free to join! We would love to share this adventure with you.