Susan, earlier today, with her cousin, who lives near Ann Arbor, Michigan
Preparing to go anywhere -- for any length of time -- when you have a child with food allergies requires very careful planning. There is little spontaneity, ever.
(Susan's purse, which she ALWAYS wears -- thankfully, ever so thankfully...and my purse, too -- JUST to be on the safe side. Susan also has an extra Epi tucked into her soccer backpack...and, of course, there are several at school, too. Oh -- and we even have them in our glove boxes -- always have, ever since our pediatrician told us about a time that an expired, extreme-temperature exposed Epi hanging out in the glove box of his car saved a child's life on a Boy Scout outing he was chaperoning. Can't hurt to have them there, right?)
(Susan's purse, which she ALWAYS wears -- thankfully, ever so thankfully...and my purse, too -- JUST in case. We've also got Benadryl tucked in her soccer backpack...and, of course, at school, too...oh, and in our glove boxes...too.)
Well...that's a little more complicated.
We keep "snack boxes" in our cars. They are filled with healthy, fun, tempting and above all, safe snacks. The outside pocket of Susan's school backpack has assorted safe and non-perishable snacks. Her skating bag (which is with her a great deal of her time outside of school) is also packed full of healthy, fun and safe snacks. I keep a stash of non-perishable items that -- in a food emergency -- could meet the nutritional requirements of a meal (even if it is all pre-packaged, preserved -- and possibly not all that interesting) in my purse. I assess and replenish the stashes regularly.
At this point, we have the out-and-about in-and-around Highland Park and the surrounding communities outings down. Because of the strategies I have developed over the years, I am comfortable walking out the door -- to destinations within our community -- without a second thought. Truly -- we just go. And when I stop to think about it, I am thankful that we have arrived at such a high level of functioning. (There was a time when it wasn't so great, really.) We have a handful of restaurants where we are known and where I have confidence in their ability to prepare food for Susan safely. (There was a time when I was certain we would never eat out again.) I am confident that I can safely feed Susan in our community. And should something disastrous happen, we carry emergency medication -- always.
However, as much as we love our community, there is more to life than our little corner of the world. And while there was definitely a time -- when the severity of Susan's peanut allergy was starting to ever so slowly and unbelievably become clear to us -- that I wanted to wrap Susan in a bubble -- never eating out, never traveling, never leaving the safety of our home, never allowing for the opportunity of risk -- I also knew deep in my heart that I did not want Susan to grow up defined by her food allergies. Even in the darkest moments -- when I wondered how I could possibly keep my stoic little girl safe into adulthood -- I firmly believed that the best possible gift I could give Susan -- as her mother -- was the gift of knowing how to live life fully, and as freely as possible. That belief -- and our goal of teaching Susan all that she needs to know -- from reading food labels to placing an order at a restaurant to being ever-vigilant for the presence of peanut around Susan to advocating for herself to -- (and scariest of all) assessing invisible dangers -- has defined us -- as parents, and, ultimately as a family.
After Susan's anaphylactic reaction on a Southwest Airlines flight -- which resulted in an emergency landing -- and American Airlines' subsequent refusal to transport her (long story there, for another time), we pretty much gave up on the idea of flying anywhere (EVER) again.
Despite what was -- at (most if not nearly all) times -- a paralyzing and breath-stealing fear, I set out to find a way for us to explore the world -- or at least the world accessible to us by van. I could not decide whether we would be likely to have greater success if we stayed with family when we first ventured beyond the confines of our safe little world for the first time -- or if we might do better in a hotel, where we would have total control over the food. Eventually, and because it seemed like the fun of it all might distract the loud, persistent and always anxious voice in my head, we decided to take a weekend trip to the Wisconsin Dells.
We booked a room with a kitchenette and invested in a large cooler on wheels. I packed easy-to-prepare foods, such as macaroni and cheese, oatmeal and my homemade three-bean chili. I packed tons of fruit, pre-cut veggies (that *I* cut in the safety of my own home), milk, eggs, yogurt, string cheese, safe granola bars (ordered through Peanut Free Planet, mostly fresh from Canada)...and some fun things -- microwave popcorn, Hershey's Kisses, and homemade chocolate chip cookies. I also packed paper plates, paper cups, disposable cutlery and my own pots and pans. By the time we left, I had a subset of my kitchen and my pantry carefully packed in the back of our van. We planned to eat in our room, focusing on the fun to be had in the water. In my mind, the trip was NOT about the food; it was about the experience -- the road trip, the water park, being somewhere new, doing something different.
Upon arrival, I set to work in the kitchen, feverishly re-cleaning what was likely already clean (but, who KNEW, and I was NOT going to take the risk!) -- even running the plates, cutlery, glasses and pots and pans (which I had NO intention of using) through the dishwasher. We had a spectacular weekend -- I loved being somewhere new, doing something different...and so did our kids. The anxious and insistent voice in my head broke through with startling clarity, reminding me always of the hidden dangers, but, I was able to push it aside, not willing to let it control us while knowing that the risks Susan faced any time she went out in the world were real.
Despite the success of our weekend, I was not enthusiastic about the idea of another trip. Traveling anywhere that requires an overnight suddenly dramatically ups the risks -- and the need for really, really good planning. By the time we got home from our outing to the Wisconsin Dells, I was exhausted. While it was fun, it wasn't particularly restful or relaxing for me.
Next Step -- Family Visit?!?
(As an aside -- I could put on my social worker hat and write a book on extended family, food allergies, and the complex ways in which food allergies impact those relationships. For now, I will just say that we are fortunate, in that while I do not believe all of our family members fully understand the severity of Susan's food allergies...and that many of them are afraid to feed her, we have never had anyone attempt to feed her something unsafe...and I'll take THOSE issues over overly confident, under-informed relatives ANY day.)
Enter my sister-in-law, Kaybee. Susan fondly calls her Auntie Kaybee. While I am pretty sure there was a time when Kaybee did not really understand the severity of Susan's food allergies (and honestly -- who could blame her -- I don't think we did, either, initially), she is quite possibly the best hostess I know. During that very difficult time in my life -- when I knew what I wanted for Susan but could not quite figure out how to make it a reality -- Kaybee invited us to a family gathering. This provided an opportunity for our children to hang with their older cousins -- a special treat -- and ever so tempting. Kaybee immediately made it clear that it was important to her that "everything" be safe for Susan to eat. Wow. I remember getting teary just at the idea that she would try to do that -- while at the same time worrying that despite Kaybee's best efforts, she would make a mistake and there would be some uncomfortable issue -- or worse. Even so, I was overwhelmed by her compassion for Susan and by her desire to make her house a safe haven. After talking about it -- A LOT -- we decided to go. And as we drive home from a family Easter gathering at Auntie Kaybee's house, I am ever so thankful we went all those years ago.
In anticipation of our visit, Kaybee and I e-mailed back and forth and talked many, many times about ingredients. I gave her brand names and she hunted them down. When Kaybee couldn't find something, I offered to bring it (over the years, we have gotten to the point that I no longer pack ANY food for Susan when we go to visit -- and Kaybee's house is the only destination in the United States I can say that about...). Kaybee mostly got it right during those early visits -- and when she nearly made a mistake (once she had planned to use cross-contaminated chocolate chips), she simply altered the recipe and left out the chocolate chips. Over the years, she has developed a binder of "safe" recipes. She knows Susan's likes and dislikes and I can see that she is pleased to be able to tell Susan "everything here is safe for you." I delight in hearing her say it, too -- and in watching Susan (who really could be a foodie if not for obvious issues) try new things with confidence. In making her house a safe haven, Auntie Kaybee has given Susan an incredible gift, and I am thankful for her care and efforts every time we are there -- and when I listen to Susan talk with anticipation upcoming visits...wondering in advance about what Auntie Kaybee might prepare...
This weekend, as we sat around the table Saturday night, Auntie Kaybee asked for an update on the clinical trial. We talked about what it is like to not know whether or not Susan is receiving the drug being studied (Xolair)...and then we talked about the ways a successful outcome might change Susan's life -- and I was reminded again of the ways in which -- despite our best efforts -- Susan's food allergies have defined her life. Susan hasn't seen a movie in a movie theater in more years than I can count. It only takes one anaphylactic reaction in the scary dark darkness of a movie theater (seat wiped down, then covered -- all of our own snacks) to pretty much cure one of ever wanting to see a movie in a theater again...
This morning, at breakfast -- which is a more casual affair (and where there are sometimes questionable items) -- there was some bread from a local bakery. I could not tell if it was safe, and, after looking at the label, Susan decided to forgo the bread. It was the right choice, and even though it tugs at my heart when Susan has to make a decision NOT to eat something, I revel in knowing that -- at least now -- at eleven years of age, on the cusp of the treachery of teenagerhood and food allergies -- I can rely on Susan to make the right, safe choice. As I put the loaf of bread down, Susan's eyes met mine. Almost in unison, we said "Next Year."
If the outcome of Susan's involvement in the clinical trial is even a fraction of the success it might be, next year we will not need to read labels in an effort to try to determine whether or not there is risk of cross-contamination with peanut. Next year, Susan will not have to forgo something that *might* be unsafe because she simply cannot take the risk.
Susan might have seen a movie in a theater.
We might have traveled somewhere by plane.
While I understand that we have what is likely to be a difficult (at least at times) and surely stressful journey in front of us...it 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 imagine...it 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 risks...it is Susan's optimism and steady certainty in the face of what could be paralyzingly frightening that steadies me. Always.
It just might be...incredible.