Photo by Rebecca Gould Photography

Friday, August 15, 2014


I have a sixth sense.
I don't mean this in a psychic sort of is just something that kicks in for me as a mom.
A friend of mine calls it a "momsense."

Last year, when four of my just nine-year-old son's (permanent) teeth were shattered during a soccer game, I KNEW the minute he hit the ground that something was not right.  And the moment I heard his keening wail, it was confirmed.

I don't think I am unique in this "sense" I developed after my children were born.
I suspect most -- if not all -- parents reading this will know exactly what I am talking about.

So, when my cell phone rang shortly after 9:00 pm on Friday night (about 5 hours after we dropped Susan off at Lydia's house)...and even though we were in the middle of nowhere and I had such poor cell reception that my phone did not register the number (even though ALL of Lydia's family's numbers were pre-programmed into my phone), I just knew -- sensed -- that Lydia's mom would be on the other end. 

And of course, I was right.

As I was answering my phone, I calculated how much time had elapsed since Susan's peanut dose...more than 9 hours...

When I picked up my phone, in a jumble of words Lydia's mother rushed to explain that Susan was "fine," but...and in that moment I felt trapped -- too far away to be of any good...and I wondered why in the world I had ever agreed to (devised? supported?) such a plan...Susan had vomited (suddenly, as with all of her delayed reactions) while playing on the Slip-N-Slide.

I have no words for how I felt when I heard that.
I realized in a moment that it was about way more than whether or not I trusted this family, these other people who were not me, to care for Susan.  It was about the fact that I wanted it to be me. 

I didn't want Susan feeling unwell with someone else.
I didn't want someone having to deal with Susan's vomit (even thought I knew full well Lydia's mother was NOT vomit-adverse, like me...).
As her mom, I wanted to be there with her.

As Lydia's mom and I talked, it quickly became clear that she really did have everything under control.

Dr. R., who was the on-call physician from the clinical trial was on the other line (Lydia's mother had had it out with the phone company when mid-week their home phone line went out.  She wanted to ensure she had two functioning lines just in case something like this happened.  I must say -- I appreciated her diligence, but I thought it would be unnecessary). 

I talked to Susan while Lydia's mother talked to Dr. R.
Then I talked to Lydia's mother while Dr. R. talked to Susan.

As much as I felt as though I was intolerably far away (as I squirmed in the car), wishing for a different scenario, I also started to feel like things really were fine. 

Susan had an episode of vomiting.
It was over, done.
She was snuggled up in a blanket on a comfortable chair.
She was in good hands and even though she had not felt well, she was clearly still happy to be with Lydia's family.

I realized in a flash that this was exactly why making the plan for Susan to visit Lydia's family had been so important. 

At least for now, Susan was going to have periods of time where she did not feel well.
But she wanted to be a normal kid -- just like everyone else. 

We have spent much of Susan's lifetime working to shift boundaries and to negotiate accommodations that allow her to be more similar to her peers.  We have taken on the school district, our community, our friends and even our family to ensure that Susan can navigate life as safely and with as few restrictions as possible.  We have lost friends along our journey...and seen our community divided over peanut butter.

And I realized, as we drove North through the darkness, away from Susan, away from Lydia's house, that helpless as I felt, this was still exactly what Susan needed. 

My husband and I sat quietly in the dark as he drove.

Breaking the silence, I reminded him that there are more lessons from this clinical trial than we could possibly have imagined...

...and that while many years ago our advocacy for Susan narrowed our community, the clinical trial has -- surprisingly -- widened our circle.

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