Photo by Rebecca Gould Photography

Saturday, April 4, 2015

One Year Later

Easter weekend was bittersweet.

We spent Easter with my brother-in-law Carl, and his wife, Kaybee.  I wrote about her last year.  While it took Auntie Kaybee a few years, she now totally and completely "gets" Susan's food allergies, and delights in being able to walk Susan through the kitchen and tell her that absolutely everything is safe for her.

Kaybee takes equal pride in walking me through her pantry, where even this year -- now that Susan is eating 8 1/2 Peanut M & M's a day -- she had bagged and then moved absolutely every nut-containing and questionable item to the very top shelf of her pantry -- out of sight, out of mind, out of reach.  (I even spied a bag of Peanut M & M's up there...)


Let me say it again.

I feel blessed and fortunate that Susan has an auntie who "gets" her food allergies, who goes beyond out of her way to ensure Susan's safety.  

I know Susan feels the same way because she absolutely adores her Auntie Kaybee.

(They made Funny Fruit Bunny together!)

While Easter Day was bittersweet (for me), we had fun all weekend long, really.  Kaybee and I left her oldest, James, in charge of my three (!!!) on Friday and they had a blast together.  At 18, my nephew is one of the kindest, most patient teenagers I know -- indulging while gently corralling my children every step of the way.

James took my kids to Oh My Lolli! -- a locally owned and run candy shop that hand-makes "lollirocks" and lollipops.  I don't think I can fully explain how pleased Kaybee was to discover a candy store safe for Susan in her hometown.  I have spoken with the owner, Keith, several times, and I am beyond impressed by his understanding of food allergies -- which is rivaled only by his genuine care for each and every one of his customers (he expedited a package of mini lollis to us while Susan was recovering from her surgery last month -- they were the perfect dessert to serve during the "Flat Party" we threw for her...only I had the idea late in the planning process).  No trip to visit Uncle Carl and Auntie Kaybee is complete without a trip to Oh My Lolli!  My kids love the free samples, watching the candy-craft process -- and, of course, we never leave empty handed!  (Susan's new favorite is Saturday Morning Cereal, which tastes JUST like Cap'n Crunch -- a cereal she has never had the pleasure of eating, due to cross-contamination concerns...)

My nephew then took my crew to Great Harvest Bread Company -- where a friend of his was working.  Apparently they give away free samples of their breads, and James was pleased to be able to ask for four slices of their pizza bread [a no-go for all three of my children -- because it contains pepperoni (and we are vegetarians), and for Susan because of cross-contamination risks].  When we met up with them for lunch, they were laughing as they recounted the tale of their trip to Great Harvest Bread Company and the abandoned samples.  My children laughingly explained that James, who had forgotten that they are all vegetarians, requested four slices of the Pizza Bread -- containing pepperoni.  Susan immediately recognized the risk of cross-contamination and opted out (GO SUSAN!).  Susan's siblings, who are ten, immediately spied the meat in their slices, and although they weren't sure what it was, they were pretty sure they shouldn't eat it (well done, vegetarian kids!).

James took good care of my younger children and then requested samples of the very same Cinnamon Swirl bread that was present last Easter at Kaybee's house (notably not present this year).  They enjoyed their samples immensely, and Susan smiled when I pointed out to her that she would likely be able to try such a sample "next year."  I believed it, and did not think much about it until later in the weekend.

It wasn't until we found ourselves at the buffet at Carl and Kaybee's club that the reality of this Easter hit me.  Last year, Susan and I were confident that this year would be different.  

And while it is in some ways...
In so many ways, it is not.

This year, we are still worried about potential cross-contamination of peanut in anything Susan eats.  (The buffet still presented immeasurable risk...)

This year, we are still worried about the risk of an accidental exposure to peanut (after all, if a peanut-heavy half of a Snickers Bar -- when her medically prescribed dose was half of a Snickers Bar -- was "too much," what else might be too much?)

This year, Susan is still just as restricted as she was at this time last year...and while I do believe I see a future with fewer restrictions, less risk...and greater freedom, I see it through a different lens than I did at this time last year.  I know the battle Susan has waged to be able to tolerate peanut.  When I reflect on the road she has traveled, with us by her side, tears well up, unbidden.  For -- if a year ago I had had even an inkling of what the coming year held, I sincerely doubt I would have been able to believe it, let alone imagine living it.  I had no idea at that time how important Susan's optimism and steady certainty would be.

A year ago, Susan was still (only, just) in the "build-up" phase of the clinical trial, receiving bi-monthly injections (of Xolair, we hoped...although I now feel relatively confident that was not the case...).  We were starting to think about her rapid desensitization to peanut, which was on May 21, 2014.  We were confident that Susan's future would be better.

The "me" from a year ago saw "better" in much more black-and-white terms than the one-year-wiser me sees the term "better."  When I reflect on the past year, and on the blog post I wrote as my husband drove us home from Michigan last year, I cannot help but linger over the conclusion.

While I understand that we have what is likely to be a difficult (at least at times) and surely stressful journey in front of is Susan's optimism and steady certainty in the face of what could be paralyzingly frightening that steadies me. 

While I understand that this journey is likely to change our entire family in ways we cannot yet even begin to is Susan's optimism and steady certainty in the face of what could be paralyzingly frightening that steadies me.

While I understand that there are no guarantees in life -- I read the sixteen-page study document and fully understand the magnitude of the is Susan's optimism and steady certainty in the face of what could be paralyzingly frightening that steadies me.  Always.

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