Photo by Rebecca Gould Photography

Tuesday, August 12, 2014

Letting Go (Ever So Slightly)

I always know when Susan does not want a play date, a visit or a party to come to an end, because she asks for a sleepover.  Sleepovers, in food-allergy-land, are a very difficult proposition, and while we have hosted many, she has only slept over at a very few places.

The Saturday night of the FARE conference, Susan and Lydia asked if Susan could sleep over in Lydia's hotel room.  I don't know if they had asked Lydia's mother, who might well have agreed, but I was pretty sure Susan needed a real rest.  And after the struggle she had to tolerate the 45 mg dose earlier that evening, I was not prepared to leave her with anyone.  So, I said "no" (as gently and kindly as I could)...because I could feel the power of the new connections...

And I made an honest promise to Susan and Lydia that we would find a time for Susan to sleep over with Lydia in the very near future...knowing in my heart of hearts that as honest as the promise was, it would be harder than I might like to keep that promise. (Honestly, at the time, I could not IMAGINE how I would keep the promise, knowing only that I would...somehow.)

The subject of a sleepover came up again as we were saying our goodbyes to Lydia, her parents and Cecilia after the second day of the FARE conference.  I started working on the idea of a sleepover on the way home from the FARE conference...turning various options over in my mind -- discarding, revisiting, reconsidering...until I finally realized that there were very few people I would let Susan spend the night with (especially at this point) AND that a sleepover somewhere else was EXACTLY what she needed. 

Once I had those two facts determined in my mind...and since I was clear that Lydia's family was on the short list of places I would allow Susan to go for a sleep over, I decided I needed to just pick a time.  Any time.  (I reminded myself that sometimes in life, it seems like there will be no good time...and in those circumstances, one needs to just pick a time.)  The way things have been going, there was no guarantee that any particular time I picked would necessarily be better than any other time I might pick. 

Once I had decided to decide, it was actually pretty easy -- I realized that if I allowed Susan to sleep over at Lydia's house the following Friday night, my husband and I could go together to pick our twins up from camp in Bemidji -- and as I thought about it, I was clear in my mind that while it would be especially good for Susan, it was also something that would be good for my younger daughter and son and for me and my husband.

After numerous text messages, several lengthy phone conversations and countless e-mails, we had a plan in place -- Susan would sleep over at Lydia's house the Friday night after the FARE conference.  We would drop her off in Oconomowoc, Wisconsin on our way to Bemidji, Minnesota on Friday afternoon and we would return to pick her up on our way home late Saturday.  We would have Susan's younger brother and sister in in tow.  It was a HUGE ask, and even now, after, I marvel at Lydia's family's willingness to take it on (and as much as I primarily communicated with Lydia's mother, it WAS a family commitment to help keep Susan safe).  

There were a few caveats as this plan unfolded.  I wanted to see how Susan tolerated her Xolair injections on Tuesday and I wanted to see how the home dosing went as the week progressed.  Susan got excited.  We made a trip to the Dollar Tree for glow necklaces and freezer pops.  (Hostess gifts safe for all!)   She started packing.  I was cautiously optimistic that it would all work out, but, I cautioned her against becoming TOO excited...

I wanted SO badly for her to be able to go...

The week passed.  She tolerated the 30 mg home doses of peanut without (significant) issue.  She continued to be more tired than usual and she had times where she was swollen or puffy in the face.  Things were not perfect, but, they were pretty good -- "maybe even stable," I found myself thinking.  I helped her pack.

I wrote a set of instructions for Lydia's mother and father that ran 1 and 1/2 pages.  I called it Susan's Peanuts.  In doing so, I realized just how much this clinical trial is pushing us to shift our paradigm for Susan's food allergy management, as reactions that would normally mandate administration of an Epi-pen are first watched, carefully assessing symptom progression.  More often than not -- far, far more often than not, we allow symptoms to play out in the hope that they will resolve without intervention.  I cannot count the number of times I have stood by, watching the hives grow and multiply, watching her become more flush, helplessly holding her hair back and rubbing her back while she vomits -- Benadryl and Epi-Pen at the ready...but, not to be used.  

And while I understand the thinking behind this new protocol (paradigm shift -- a concept I struggled to understand in my college sociology class and for which this term seems to fit better than any other real-life example I can think of), I am also always acutely aware that in the end, the final decision rests with me.  I am absolutely certain that if I were to administer the Epi-Pen when I felt it was necessary, the staff at the clinical trial would support me 100%, and for that I am grateful....and ever-aware of the ways this clinical trial has pushed us all.

As I proof-read my instructions, I was thankful for the time I spent talking through things with Lydia's mother...and knew with certainty that if Susan were a different kind of child, allowing her to go off with another family would be even more difficult than it already was.  For while Susan has historically downplayed her symptoms, I AM confident that she honestly reports what she is experiencing to the best of her ability.

That said...
How do you instruct someone in subtleties you are only just starting to understand yourself?

Some times, you just have to trust the universe...

I can't write the captions for the awesome photos, because I wasn't there, but they did convince me (beyond the shadow of a doubt -- and DESPITE what happened while Susan was there, that letting go -- ever so slightly -- was just what she needed).

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