Photo by Rebecca Gould Photography

Wednesday, September 17, 2014

In My Head

I cried Monday night.

As I lay on the trundle bed in Susan's room, listening to her breath, watching her toss and turn, I felt tears pricking the backs of my eyes.  I blinked them back...and then blinked them back again when they returned. 

I am stoic.
I don't cry often...and I wasn't ready to cry.
I didn't want to cry.

I wanted to marvel in the miracle of the clinical trial -- for Susan, for us, for so many children living with food allergies...

I wanted to marvel at the result of my daughter's strength, fortitude and certainty that moving forward -- staying in the clinical trial even when it was more difficult than we could possibly imagine...

I wanted to give thanks -- to those who have fought for funding for research in the treatment of food allergies, to those who have funded this research, to those brilliant minds who have begun to tease apart a better understanding of food allergies...

I wanted to give thanks to the many brave families who have gone before us...

And I wanted to pause, for a moment, and think of those whose time came too soon -- those who never had a chance at this kind of treatment...those children and families whose stories always bring tears to my eyes...and whose stories helped me remember the importance of what Susan was doing even when it was so very hard.

I blinked the tears back again, rubbed my eyes...and then, I was overwhelmed as the tears began to fall unbidden.

I cried silently, in the dark.

My tears were a mixture of relief, gratitude and -- uncertainty.

I was -- and am -- thrilled that Susan did so well during the rapid desensitization to peanut.  On Monday alone she ate more peanut (460.5 mg -- that's nearly two peanuts) without issue than I ever dared dream she might.  Incredible.  Unbelievable.  Unreal.

On Tuesday, she did it again.

I am thrilled.
The possibilities unfurl in my mind if I am not careful...I think movies in theaters, dining out without concern -- Indian, Chinese, baked goods -- a flight (to Greece!?)...traveling without hauling along part of my kitchen...
The possibilities are endless.
The paradigm shift will be enormous.
(I suspect -- no, I am certain -- it will take time.)

But, I am by equal measure scared. 

As a friend who is a therapist pointed out (while wearing her hat!), I have spent 10 years developing neurologic pathways that say "peanut is scary."  She reminded me that those pathways will not, cannot change overnight. 

But still.

I am sure that to some, what I am about to write will sound...crazy...insane -- maybe even ungrateful?  It is not that I am ungrateful, it is that my world has been...rocked.

I remember well how I felt when I first learned that Susan was allergic to peanuts -- I was scared -- terrified -- I did not know what was safe and what was not. 

My pediatrician ordered:        "NEVER be without 2 Epi-Pens and Benadryl."
My pediatrician said:              "NEVER hesitate to use your Epi-Pen."       
My pediatrician advised:        "Find an allergist you trust and love."
My pediatrician reassured:     "You are smart, educated -- you can do this." 
My pediatrician cautioned:     "NO new foods."

I left my pediatrician's office scared, but armed with a plan.  I felt I COULD do it.  That was 10 years ago, and looking back, I now know how little I knew -- and how much I had to learn.  I am so glad that I did not know how little I actually knew at the time.  I am not sure I could have carried on had I understood the seriousness of Susan's food allergies, the vigilance and magnitude of change required to keep Susan safe...the way Susan's diagnosis with food allergies would change our lives.

(It was better that I came to a gradual understanding -- although I could have done without a few of our adventures along the way -- like our emergency landing and the anaphylactic reaction she had in the undercover dark of a movie theater while sitting next to me...).

My pediatrician's advice was sound, and I followed it.  But when Susan had an anaphylactic reaction to a part of a macadamia nut (she had BEEN eating macadamia nuts) a few days later (that I eventually learned was processed on equipment that processed peanuts), my world felt rocked. 

I feared food. 
The very act of feeding my daughter took on a whole new meaning -- and I felt it was fraught with danger.

Now, I am thankful beyond words for the very clear direction from the clinical trial.  The consents we signed state clearly that Susan is not to try any new foods at all for the duration of the clinical trial.  Not that I would be tempted at this point, but I appreciate how very, very clear it is.

While we have come incredibly far, we have also, in some ways, taken a step least in as much as I am now living in a more fearful world...Susan is eating peanut.  My daughter is eating something that could kill her -- and while this something that could kill her should also afford her some level of protection, it scares me.  Just how much protection?  And is it enough?

1 comment:

  1. Beautiful! We'll written piece about your peanut journey. Emergency landing? Are you referring to an airplane