Photo by Rebecca Gould Photography

Monday, June 23, 2014

Finding Common Ground

Ever since Susan spoke at the FARE (Food Allergy, Research & Education) Luncheon (In Susan's Voice), she has been talking about attending the 2014 FARE National Food Allergy Conference, which was last weekend (June 20th, 21st and 22nd). 

Then Susan met Lydia, a 14-year old girl from Wisconsin whose allergy profile is very similar to Susan's.  Before they ever met, Lydia was already planning to attend the FARE conference...and knowing that Susan would get to hang out with Lydia and Lydia's friend Cecilia made Susan that much more interested in attending.  I investigated a bit and learned that the "Teen Tract" of the conference was open to those aged 11 and older.  A friend who heard Susan speak at the FARE Luncheon opined that Susan was sufficiently mature and encouraged me to let her attend.

Susan was clear that she wanted to attend.  I, on the other hand, was torn -- especially as the conference drew closer.  Susan had a very difficult week the week preceding the conference, with multiple delayed reactions and vomiting episodes.  She was exhausted.  While I could see the value in connecting with others living with food allergies, I could also see the value in a low-key weekend spent hanging out at home, reading, relaxing, napping.

And, if I am totally, completely honest, I might have been just a bit maxed in my role as the parent of a child with food allergies.  I was not certain that a weekend immersed in food allergies was at all what I needed. 

And yet, I did not want my reluctance to attend to deter Susan.
So, I never said a word about my not wanting to go...and I didn't mention at all my feeling that a low-key weekend at home might be more exactly just what she needed.

I did, however, repeatedly ask if she was sure she wanted to attend.
And I showed her the schedule on-line -- asking her to look at it to be sure the sessions interested her.  (I was thinking she might decide it sounded more like "school" if she looked at the sessions, and then might decide not to go.  Of course, she likes school...)

I understood just how serious Susan was about attending the conference when I saw that she was expanding the title of each session so that she could read the detailed descriptions of each session.  And when I say each, I don't mean just the Teen Tract sessions -- I mean all of the sessions.  She even ever-so-carefully (but very pointedly) suggested several specific sessions she thought I might want to attend.

I had some trouble registering on-line [I am sure it was a combination of the very late date and the fact that I was trying to register as a (new) FARE member].  And then I got an e-mail informing me that walk-in registration the day of the event was available.  I used this series of events to decree that we would play the conference by ear.  I told Susan we would see how she felt on Saturday morning and make a decision about the conference at that point, all the while assuring her that if she felt up to going, we would attend.

I would be dishonest if I did not admit that I was (at least) half hoping that Susan would decide not to attend come Saturday morning.  While I wanted all that promised to be good for her, I also wanted a break from food allergies myself -- and there was no way to have both.  And, given all that she has been through, I was NOT going to deny her...anything.

We set an alarm Friday night -- early, as the conference started at 8:00 am and Susan wanted to shower and blow dry her hair before we went.  As I watched Susan look at the weather forecast and pick out her clothing for the next day, I was pretty sure we would be attending.  As a pretty serious athlete, she rarely puts much thought or energy into her appearance.  We both went to bed early. 

Sure enough, Susan popped out of bed when her alarm went off.  While I asked her again if she felt well enough to attend the conference, I could tell that she had already definitely decided we were going.  I resigned myself...willing to admit (to anyone but her!) that it would not have been my choice of a way to spend that particular Saturday...

I prepared Susan's peanut dose to take with us -- chocolate whey protein, 45 mg of peanut and our bullet blender.  We could not quite reach agreement about when she would take the dose.  Susan did not want to take her peanut dose at the conference, but, there was a part of her that wanted to stay through the teen reception, which I thought would probably go until about 9:00 pm.  Reminding myself that she was not herself for any number of reasons (and probably a combination of reasons), I let it go.  I wasn't worried that Susan would resist taking the dose -- and I saw her behavior as a way to control a situation that had begun to feel very much out of control (at least to me).  I figured we would revisit the issue of the peanut dose over lunch at a Chipotle we had already identified.

Susan was anxious to find her friends when we arrived at the FARE conference, and fortunately, the on-site registration process was quick and easy.  I accompanied Susan to the room in which the first teen session was being held and peeked in to be sure she was in the right place.  I was kindly but firmly rebuked -- no parents or adults were allowed in any of the teen sessions. 

I resisted my urge to pull one of the volunteers from the room -- to explain that Susan was in a clinical trial, that she had not been tolerating her peanut doses well -- in short, to ask that someone keep an extra eye on Susan.  I wanted to -- so, so badly.  But, at the same time, I knew that what Susan needed, more than anything, was to be normal in this peer group of others living with food allergies. 

I backed out quickly.
I connected with Lydia's mother, who assured me that Lydia and Cecilia would keep an eye on Susan.

I settled in to my session (a full floor away from Susan).
I texted Susan, reminding her which session I was in...and reiterating our plan to meet during my break.
A better "student" than I, Susan did not reply.

As the day passed, I became increasingly glad we were there.  The conference was great on so many levels -- while I could NEVER have articulated it before going, it was (actually) exactly what I needed.  I learned new things in every session I attended, and found the speakers to be knowledgeable, compelling and compassionate.

There was also plenty of time to connect with old friends and to meet new reconnect and to connect with parents of children living with food allergies.  I overheard people talking about my blog and was (as I always am when I look at how many people have viewed a certain post) moved to hear that the story of our journey is helpful and inspiring.  One enthusiastic parent described Susan's bravery to me with total admiration -- and we shared a laugh when I admitted that Susan is my daughter and saying, "Yes, I admire her commitment and determination every day." 

I was absolutely entranced during the session on current research and studies.
I was encouraged by much of what I heard...while simultaneously discouraged by the very clear fact that pretty much everything in the works is a treatment.  Not a cure.
[We are light-years, it seems, from a cure.  But, for kids like Susan, with the most severe allergies, even treatments have the potential of being life changing.  In the hardest, bleakest moments of this, I remind myself of this fact.]

Even with the constant presence of the sobering facts and realities of food allergies, I was refreshed, restored and rejuvenated.  I could not believe I nearly missed this incredible opportunity.

Furthering my really good feeling about the conference was the fact that I could see Susan being rejuvenated as the day wore on.  She was connected to others just like her.  

My quiet, stoic girl told her peer group about her experiences in the clinical trial.  She talked about her first food challenge, and told them what it was like to eat a food we have avoided for all of life as she knows it.  She talked about how scary her delayed reactions are, and shared with the group what it was like to self-administer her Epi-Pen (she even told them about pulling it out right away and having to self-administer a second time).  While she has friends with food allergies, she has not had anyone just like her to process this experience with, for those friends haven't ever asked her about the clinical trial.

She needed that, so, so badly.
Where has my social worker hat been?

Cecilia, Lydia, Susan and Kaylen

Little did I know (until later) that Susan also wrote about her experience in the clinical trial.

I was deeply saddened when I came across this:  "right now the clinical trial is really hard, I "throw up" nothing and then my stomach feels sore because I tried to "throw up" nothing.  I don't enjoy the experience at all, but, it might get better when I get the injections."  (Susan gave me permission to include a picture of her writing because "it's all true, Mom.")

As I was standing in the common area of the conference (during a session from which I played hooky so I could continue talking with a mother I had met), Susan, Lydia, Cecilia and another girl flitted lightly by me, casually informing me that they were going to attend an art therapy session.  (The Teen Tract was covering food allergies in college and the four girls had decided to opt out.)  The four girls looked like they had known each other forever. 

Susan never looked back.
(And even though I wanted her to, I did not will her to.)
I smiled.

The woman I was talking with captured my thoughts exactly when she said, "that is why I came."

If I could not let go (just a little bit) at a food allergy conference, where would I ever be able to let go?

As the day wore on Susan and I visited the vendors, collecting raffle tickets and certificates for samples.  We shared a casual lunch...and, over lunch, Susan told me that she absolutely positively wanted to stay for the teen reception.  We agreed that she would take her peanut dose at 5:00 pm, when there was a natural break.  I liked the way she looked, the way she sounded, the connections she was making. 

We collected samples, finding two new products Susan loves.  Skeeter's Nut Free Chocolate Chip Minis (which she currently eats with every peanut dose -- a "perk" of sorts...) and Pascha Organic Dark Chocolate.  We were both beyond impressed when she took the large bar out of the box -- check out the awesome wrapper on this bar of chocolate!  (In case you have trouble reading it, it says it is Peanut Free, Tree Nut Free, Gluten Free, Wheat Free, Dairy Free, Soy Free, Egg Free & Sesame Free.  WOW!)  She is a HUGE fan of the one pictured, with Goldenberries.

And then, it was time for Susan's dose.  I bought milk in the cafe and then commandeered the only outlet available.  

We had quite a few curious onlookers, and I explained that the frothy chocolate concoction held her peanut dose.  People paused, smiled, cheered her on.  

And then, unexpectedly (for Susan tolerated the 45 mg dose without issue on Friday), she developed several hives on her lips.  And she got teary.  And white, and shaky, and she felt nauseous.  

She had a desperate, panicky look on her face -- I couldn't tell how much of it was because of how she was feeling and how much of it was driven by her incredibly strong desire NOT to vomit in public.  To this day, I believe Susan willed herself not to.

We sat.
I talked to her.
I didn't know what to say, so I encouraged her to relax, to think about something relaxing.
And then, slowly, she was better.
She was still incredibly pale, but, she started asserting her wishes.

She did not want to leave.
She had a celebrity meeting to attend with pro football player Adrian Peterson.
She wanted to attend the reception.

We bumped into Lydia and her parents and they (risking Susan's contamination of their room) invited us to hang out in their hotel room.  I am quite certain Lydia's mother knew Susan was struggling to hold it together by the look on Susan's face. 

Susan, Lydia and Cecilia snuggled up, watching a movie.

As I sat in their hotel room, a ferocious storm raged outside.
I watched Susan carefully, marveling at her fortitude, her determination, her will.

And as the minutes passed, she began to feel better.
We got passed the two-hour observation period without issue.

Lydia's mother offered Susan the Enjoy Life t-shirt she received after touring the Enjoy Life facility the day before the FARE conference began.  She made Susan's night!

We went down for the reception.

I wish I could say I allowed her to walk into that "teen only" space freely, but I couldn't quite do it. 

As soon as Susan was in the room, I knew I had to do something.  I found a volunteer in the hallway and began explaining.  I didn't get far before he held up a hand, saying "hold on."  He disappeared into the teen room, then came to the door and motioned me in.  Hoping Susan would not be upset, I crept in.  I explained her situation to another volunteer, who had me point Susan out to her.  I have never been as grateful for anyone as I was at that moment, as the volunteer assured me that she would keep a close eye on Susan. 

Susan and her friends had a great time at the reception.  Celebrity photo opportunities, great music, caricatures, a green screen, glow sticks and an assortment of allergy-friendly beverages made the night a smashing success.

Susan, Cecilia, pro football player Adrian Peterson (who lives with food allergies he developed as an adult), Kaylen and Lydia

So tired she could hardly think straight (really!), Susan did inform me clearly that she wanted to return to the conference on Sunday.  And so, without hesitation, we did.  It was just what we both needed.

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