Photo by Rebecca Gould Photography

Wednesday, April 29, 2015

Doing "Nothing" (or Being There when Susan Self-Administers Epinephrine)

I suspect most parents would agree with of the hardest things about parenting is knowing how and where and when to let your child...go...
  [knowing there is risk of disappointment, upset, heartbreak -- even...failure]
    (knowing you could -- if your child was willing -- educate, teach...even maybe prevent some of that hurt...)

For me, figuring out how and where and when to let go of Susan is complicated by the very fact of her severe food allergies. 
I have often said that if it were just about what Susan put in her mouth, it would be easier, but, given her history of anaphylactic reactions to airborne and contact exposures to peanut, there simply isn't room to risk a "failure." 
  (The heartbreak would be mine, my husband's, our other children's -- the risks go beyond life lessons learned.)

The very thought makes it hard for me to breathe.
  For while mistakes are made -- often enough -- in life...I cannot allow a mistake to be made with my child's life.

[Until recently, Susan had never even self-administered epinephrine...and historically, her reactions have been...FAST.  Really.  Really, really, reallyreally fast.  No hives.  No skin changes.  No vomiting.  Her reactions, historically, have been of the Do-Not-Pass-Go variety -- leading directly to respiratory distress...coughing, choking, wheezing, struggling to suck air in as her throat swelled shut.  No time for error...for failure...for...a...learning curve.]

And so, we have held Susan close -- hosting countless sleepovers and play dates at our house, eating at only a very select handful of restaurants that do not have any form of peanut on the menu...making our own snow cones, ice cream and donuts...
Coaching her soccer team, managing her soccer team...
Volunteering to supervise her ice time...driving the bulk of the "carpools" anywhere and everywhere...
   ...the list goes on, and on...and the hours spent simply being present to provide a level of supervision that most parents would never...could never...dream of...add up...until they are impossible to calculate.

We sought (and then fought for) a comprehensive food-allergy policy in our school district...losing countless friends along the way...a loss that still saddens me, although I recognize now that I am rich in the friends I gained during that difficult time...and in those we have added during our food allergy journey.

We selected extracurricular activities and camps after careful, thorough, painstaking assessment...steering Susan away from any that seemed unable to meet her needs...driving her to a tiny camp in Canada run by a Canadian couple on a lot they own...the entire space peanut and tree nut free...because they are traveling the same food-allergy road we are...

Until recently, Susan had not seen a movie in a theater...
   and for years, we have driven instead of flying...putting hundreds...thousands upon thousands of miles on our van.

The clinical trial has pushed me to think long and hard and often...about where and when and how I will let Susan go...

For now that Susan is eating peanut...things should be different, right?
Now that it is -- at least theoretically -- about what Susan puts in her mouth, it should be different...

While I have always worried about Susan's safety, I have come to accept that I worry more now that she is eating peanut regularly than I once did.
Incredible (and wrong?).
   But true.
  (I believe that some day, I will worry less.  I hope.  I'm just not sure when that day will be.)

There is a growing part of me that thinks I will always worry (like any parent, just...maybe more?)...although maybe my worry will be about Susan's peanut dose...instead of about Susan's peanut avoidance?
  [For, while it is years away...I do find myself wondering...what will it be like if (when?) Susan goes off to college?  (And I hope beyond hope that what she is doing now will free her to...go without consideration of her food allergies.  Will I wait with baited breath at the time of Susan's dose every day?  I have to hope not...for that makes me wonder what, if anything, will we have gained?  So many questions without real answers.]

We have certainly gained an appreciation for epinephrine over the last year...
  and...far more experience administering it than I ever expected.

The stark reality is that while we were aware that Susan's enrollment in the clinical trial put her at increased risk for anaphylaxis (that very fact is spelled out clearly in the consents, so as to leave no room for confusion), there is a gaping chasm between awareness and knowledge and the moment that anaphylaxis begins.
  Time slows as the medical emergency begins.

I have written about not ever hesitating to administer epinephrine, and yet every second drags, elongated, as the reality of the danger Susan is in sets in.

There are too many stories about children and teens whose epinephrine was administered too late...
  (with devastating, heart-breaking, newsworthy consequences)

With the importance of early administration of epinephrine clear in my mind, I have allowed -- encouraged, even -- Susan to self-administer her epinephrine...

  I have sat beside her, holding her, rubbing her back, encouraging her...wrapping my hand around her hand to prod forward and to assist if needed...but never once taking that EpiPen from her to administer it myself.
  In the painful seconds it has (always) taken her to gather herself -- to still her body, to get her body "really calm and relaxed" even though her "body is NOT wanting to do that" -- I have reminded myself over and over again --
I need
To be able
   to do this...

In the back of my mind, as I have sat with Susan -- doing nothing (and it feels very much like I am doing nothing even though I know some might argue I am not doing nothing -- but I am very much aware that I am doing nothing to stop the anaphylaxis threatening to take Susan's life) -- I have always known that if I felt Susan was hesitating too long, I would step in and do it for her...
But who am I to know what is too long? least once...probably, I waited too long.
  We were fortunate, in that the epinephrine worked...
  We did not have devastating consequences.

Always, every single time I have been with Susan -- listening to her wheeze, hearing her increasing difficulty breathing...looking at her red, swollen, puffy and teary face...sitting there...doing nothing -- I have reminded myself of how
absolutely crucial it is that Susan know how to self-administer her epinephrine. 

If Susan has to 6, or 7...or even 10...I have to believe that is better for me to sit with her doing nothing while she counts...and allow her to self-administer her epinephrine with the hope that every single time she self-administers her epinephrine her confidence, her certainty, her...resolve...increases.

At least that's what I tell myself as I sit by her...
  (while also telling myself I will never wait too long -- knowing full well that no parent ever intends to wait too long).

The sitting by and watching -- doing nothing -- [for as much as I want to say supporting, holding, rubbing...the truth is that I am watching, hoping...trying to hold myself steady and not take an important learning (practicing) moment away from Susan] is terrible.
I wonder about what kind of parent I am...

It is agonizing to sit there -- knowing Susan's throat is swelling, that her body is in overdrive -- fighting peanut, fighting itself.
It is agonizing to hold myself still (doing nothing) -- helplessly standing by...hoping beyond hope that by doing nothing, I am, in fact, doing something incredible.  (Of course, I could take over...but I know as I sit there that to take over would be taking something important away...)

And so...I have held myself steady on four separate occasions -- waiting, watching...doing nothing while Susan self-administered her epinephrine.

After reading Susan's blog entry about her thoughts on self-administering her epinephrine, my dear friend who was with Susan the day she had an anaphylactic reaction after eating her 1/2 of a Snickers Bar texted me, "Great blog...And I think you should write a blog on what it is like to be you in those moments."  (You asked for it, Susan Millner -- here it is.)

And then she added, "Susan hesitating before she epi'd scared the crap out of me.  I didn't want to have to take over (for her sake) in the worst way.  And so then I counted for her (and now I feel badly for not letting her do it her way).  But I think I knew in that moment that her life (the life of someone else's child) was in my hands and so I did what I thought I had to do."

I responded that I was so glad that she was the one with Susan, and added that Susan and I had talked that morning about how there is a "learning curve (my daughter's term).  I am grateful my friend Susan was with my Susan that day.  I am grateful she held back while also urging Susan on.  It is impossible to describe how terrifying it is to sit there and watch (doing nothing to really, truly change anything) -- knowing your child's life is in danger...and knowing you hold the medication that just might save her life.

As hard as it has been to sit there...doing nothing multiple times...
I am thankful beyond measure that Susan has had multiple opportunities to self-administer her epinephrine. 
I am thankful beyond measure that I -- or an adult she trusts (and sometimes even a doctor) -- has been with her each and every time.
So far.
But some day...we won't. 
  (Not if Susan gets to live the free life she dreams of.)

And so, as hard as it is to sit there, doing nothing...
   (and yes, I know it isn't really nothing that I am doing...but, that's how it feels)
I believe trusting Susan -- allowing Susan to self-administer her epinephrine -- is one of the greatest gifts I can give her.

And so, if there is a next time (and if I am really honest with myself, I think there probably will be), I will sit with Susan.
I will hold her or rub her back...
I will encourage her if she needs...but I will also hold myself back...doing nothing...
   (allowing Susan to self-administer her epinephrine)...
   while I do what I already know will feel like...nothing...(letting her...go...trusting her to find her way).

1 comment:

  1. Your strength is amazing and every entry brings me to tears. Thank you for sharing your struggles and know that your courage gives strength to others. This food allergy stuff is hard on us mamas!!