“Tell her it’s not that tough — going to my school with food allergies.”
I was on my way out the door to meet up with a new friend whose son will attend Zachary’s school as a kindergartener next year. I had asked him if he had any thoughts he’d like to share about being a student with multiple food allergies at his school. And this was what he said: “Tell her it’s not that tough…”
It’s true — we’ve had a much easier experience with our school than some others have had with theirs. I was able to tell my new friend that the teachers are amazing and willing to learn.
Our art teacher, for instance, offered to create an art supply kit just for Zachary when I realized that they all share a communal supply and, oh, how that freaked me out when I thought about little first-grade hands full of nuts and eggs, dirty from lunch and the playground, handling the paintbrushes that he would use, knowing how much he likes to wipe his nose or eyes with the same hands that also hold those art supplies.
As I sat across the table sipping coffee with my new friend, we went on to compare notes about allergists and we discussed research occurring now and treatments that are on the horizon. She asked about the treatment we’ve pursued with Dr. Li. I gave her an overview of our protocol and why we opted to undergo treatment with Dr. Li now instead of waiting for FDA approval years – possibly decades – from now.
It was nice to talk hospitals – which one handles anaphylaxis care and follow-up better, and which we would prefer to steer clear of if at all possible. We talked labs: the best location for blood draws, our latest results, and hopes for better diagnostics in the near future.
I was reminded again that as isolating as it feels to live in the world of severe allergies, we’re not alone. It’s so easy to focus on the stress and the anxiety we carry as parents of children with life threatening medical conditions. It’s so easy to carry on and keep our heads down, moving from thing to thing. It’s so easy to get upset about the things we can’t control, like our favorite convenience food being taken from us because an allergen is added to the recipe.
When I think about doing life as an “Allergy Mom” I find that the times I feel most encouraged, most like I really can do this – it’s quite often after I’ve connected with someone else in my shoes. Whether I’m giving or receiving advice or insights, there’s something truly empowering in a genuine connection with someone who just gets it. The connection keeps my head up, takes the blinders off, and reminds me that we are all in this together.
It takes very little time to speak, email, or text a word of encouragement to someone. My son came up with one line of encouragement as I headed out the door to meet with a mom facing the huge transition to kindergarten. It doesn’t take much, but it can make a world of difference to someone feeling anxious, discouraged, or overwhelmed … which is often where we parents live when we regularly handle lesser understood chronic conditions like asthma and allergies.
When we take the time to say, “I’ve been there and it stinks,” or “Tell me more,” or “This is what I learned when we went through that,” we create a meaningful connection that helps bring all of us UP. Sharing burdens, experiences, high points, and low points, it all goes together.
So this is what I have to say:
“It’s really not that tough, being the parent of a kid with multiple severe food allergies and asthma. You just have to look upward and outward, and connect with others.”
Look upward. Look outward. Connect. Together we’ll make it.