Photo by Rebecca Gould Photography

Sunday, June 29, 2014

In Other Peoples' Heads

You know that phenomenon where complete strangers inexplicably feel comfortable touching a pregnant woman's belly?  Some ask, some don't.  Either way -- it is a complete and utter violation. 

We experienced this phenomenon recently after my 9-year-old twins shaved their heads as shavees in a St. Baldrick's fundraiser at their school.  My son's and daughter's freshly shaven heads -- especially Meg's -- were like magnets.  Sure, some people asked:  "Can I touch your head?"  Others did not, simply shrugging apologetically while reaching out to feel their nearly-bald heads -- explaining (apologetically) that they just could not help themselves.

And while I haven't talked about it at all until today, I have been experiencing that phenomenon in regard to the clinical trial.  Of course, the people I have experienced this phenomenon with are NOT complete strangers.  They are (mostly, in a very generalized sort of way) people we know peripherally in our community, friends' of friends, even a distant relative (or two). 

The first time it happened was right after the food challenge that Susan underwent to be admitted into the clinical trial.  It was a very difficult day (One Day, Two Food Challenges), and the severity and atypical nature of Susan's peanut allergy was underscored by a series of delayed and ever-worsening anaphylactic reactions the night of the food challenge (Beyond Brave).

Someone actually called me (bigger, bolder than similar interactions that happen by chance when I encounter someone in the community) to voice her concern over our decision to allow Susan to participate in the clinical trial. 
I was stunned. 

I listened, and, as much as I wish I could say I responded from under my social worker hat, I'm pretty sure I did not.  Honestly, when I sat down to write this, I tried to recall what I said, but, between the emotional nature of my reaction at the time, the passage of time and all that has happened since, I simply do not remember what I said.  I DO know that I tried to both defend and explain (perhaps all wrapped up in one breath)...and then, with a flash of insight, I realized that there was nothing I could say or do that would help this person understand.  So I politely thanked her for calling and wished her well.  What more could I do?

I wanted to yell at her, to MAKE her listen to me...
I wanted her to think (even for just a minute) about all of the ways Susan's life is different (I initially wrote less, but, I so badly do not want that to be the case that I immediately deleted it)...

I wanted her to just try to imagine what it is to be the parent of a child with food allergies -- to live in fear of an accidental (or worse!) exposure or live in fear of the very things most children look forward to -- ice cream, birthday cakes, Halloween.

And yet, with a clarity I do not usually have (at least not in moments like those), before I even wandered down that path, I realized there would be no point.  This person would never understand...

This woman is a mother.
I wish I could say I have not given this phone call a backward glance, but that would be untrue.
It rattles around in the back of my mind.
How could a mother -- any mother -- not be able to understand that I just want to try to keep my daughter safe?

Since that day, there have been those who have casually wondered aloud -- to me or to others I know -- about the sense in this clinical trial, those who have questioned our decision to allow Susan to decide whether or not to continue (to push forward)...there have been some e-mails, and even a text message.  And then there are those few individuals who are certain they know better (best?)...and want to tell me just what it is they think we should do.

If I put my social worker hat on, and look at this phenomenon -- examine it from all sides -- it is fascinating, really.

But as a mother, as the parent of one of the bravest, most determined young women I know, it angers me that anyone would presume to know what is best for Susan.  (For how can anyone know what is best for her if this is something my husband and I still grapple with?) 

The anger is not one of those big, flashy, red-yellow-orange hot is more a slow, simmering anger.  Days go by without me really attending to it...and then someone visits that spot -- wonders why we are subjecting Susan to this...wonders why we haven't demanded something more from the doctors...(and I think -- what, exactly, should we demand?)  The doctors are incredible -- they see Susan as a person, have advocated for her, and are always, always available to us.  The doctors don't have the answers any more than we do -- but maybe, just maybe, if we stick with this -- if we do the hard thing -- some day maybe there WILL be answers.

I do not expect these people to understand -- for none of them (that I know of) have walked even a minute in my shoes, let alone two moons.

I do not expect these people to understand.
(How COULD they?)
But I do not want these people to judge, to decide they know better without being fully informed...without having LIVED this very difficult, ever-vigilant life.

I am sure there are people in my circle -- and not just my friends -- who really don't get this whole clinical trial.  
I am sure there are those who are puzzled by our decision to participate, to stay in the clinical trial, to move forward -- perhaps some of them are even fairly certain that if Susan were their child, they would not pursue this course.  That's fair, of course.  But, this group is comprised of those who have chosen to stand along side us, supporting us as we try to find our way forward (through, perhaps is a better word) this difficult and uncertain time.  And I am thankful for each and every one of those supporters -- silent and not-so-silent alike.

There is a lesson for us all in this, of course...

(And I am reminded, as I often am, of all that we have gained from and through Susan's participation in the clinical trial...)

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