Photo by Rebecca Gould Photography

Wednesday, September 3, 2014

Susan's Assent

Susan turned 12 on August 21st.

On her last visit to the Clinical Research Unit (CRU) as an 11-year-old, the clinical trial coordinator told us that Susan would need to sign an "assent" during her next visit.  She explained that "assents" are required for all children aged 12 and older who are participating in a clinical trial.  She further explained that the assent form would be similar to the consent Susan and I reviewed during her intake visit.  

Susan and I talked a bit about the assent on the way home.

To ME, it seemed like a huge deal...but, even as I tried to talk about it with Susan, I could tell that to her, it just was not all that big of a deal.

I let it go.
(I was thinking I would revisit the discussion at another time, but it never came up easily...)

And so, when Susan had her appointment in the CRU shortly after she turned 12, we had not had any further discussion.

To me, the idea that Susan would sign what is essentially a consent for her continued participation in the clinical trial was HUGE.  I knew her signature would be the first of what I hope to be countless future formal signatures on her part -- college applications (is that required any more?), first real bank account, job applications, maybe a car loan...sometime even -- in the distant future -- maybe even a marriage license, a mortgage application?

For Susan, in this seventh grade year when so many of her friends and classmates are coming of age -- celebrating their Bar Mitzvahs and Bat Mitzvahs, Susan is experiencing her own coming of age...with an opportunity to make significant decisions in the management and treatment of her food allergies.

So...when the clinical trial presented the paperwork to Susan for review (shorter than my copy by a few pages, but still lengthy), I felt that something momentous was happening...and I wanted Susan to feel that way, too.  

Focused (as she is in almost all that she does), Susan began reading.  After a while, she looked up -- "Mom, we already went over all of this."

"Yes, but now YOU are signing -- agreeing to participate.  This is your chance to review the clinical trial protocol, to ask questions..."  

Susan nodded, looking carefully, steadily at me.  "I already know what to expect.  And I don't have any questions."

In the back of my mind, a tiny part of me (not the part of me that knows Susan well...not the part of me that has witnessed her calm, quiet determination throughout...) wondered if Susan would take the moment in which she was asked to sign her assent to...not.

Of course, when I think back to those quiet moments in the room in the CRU, I do not believe that thought ever crossed Susan's mind.

Susan's certainty holds me steady.

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