Walking the Tightrope, Making a Difference Step by Step

Managing Food AllergiesI’m going to be honest with you. Not that I haven’t been in my past posts, but I’m going to share some feelings that I haven’t shared before. 

I know that our best writing happens when we write about what makes us feel uncomfortable, what really gets us thinking, what reveals our insecurities, what we second-guess sharing. This is the “good” stuff. This is when our real writing journey begins.

So I’m going to tell you something that I haven’t said before: 

Walking the Tightrope

It’s true. A tightrope over what? So many things. But it’s a tightrope. Sure, some days it’s a high wire. It’s a slack wire. It’s a sky walk. There are so many turns it could take. Other days it turns into a balance beam. On amazing days, it feels like I’m gliding across a dance floor. On miraculous days, it feels like we’re on a trampoline.

But on many days, it’s like walking a tightrope: step by step, putting one foot in front of the other, sometimes stopping to regain balance and composure, taking deep breaths, making sure all safety nets and safety plans are at the ready, and then continuing forward.

There is only one path that ensures safety and I will do my damnedest to walk it and not fall off.

I won’t lie. It is hard. Some days are harder than others. Some days require more focus. Some days I feel more unsteady, less sure. Some days I certainly am carrying more baggage. But there is no room for error. We must delicately and carefully balance ourselves perfectly on the line, our safe place.

To hold ourselves up here, food allergy parents and caregivers do so many things:

  • clean and wipe potentially contaminated surfaces,
  • research safe places,
  • learn to cook safely and read ingredient labels,
  • watch for cross-contamination,
  • work with our allergists and other specialists,
  • communicate our safety needs,
  • balance the need for inclusion with being safe,
  • address and educate those who don’t get it,
  • work to foster food allergy awareness in ourselves and others,
  • continue to educate ourselves and our community,
  • always make sure we have our epinephrine with us, and
  • pray it’s enough.

It can be stressful. As my son gets older, I’m getting good at hiding my fears and anxieties. But it doesn’t mean they aren’t there. It doesn’t mean they disappear.

It’s fine. I’m not wishing them away. Well, that’s a lie. Of course I am. I pray everyday my son will outgrow his allergies and my daughter won’t develop more. Just the other day, he asked, “Mom, can I ask you a question?” (He asks this several times an hour, but this time his question was heavy.)

“So mom, why hasn’t the doctor fixed my allergies yet?” my son asked. “He will, right?”

It’s a simple question with a very complicated answer. It’s been on my mind too with the soar in food allergies and other auto-immune diseases. Kids really know how to keep it simple and cut to the chase.

Of course, he and I have talked about food allergies and how they may not go away. But in that moment, his ever-turning, sweet little mind just wondered. I do too. Doctors fix things, right. Why can’t we fix this?

It has been five years since I stepped onto this tightrope with my family. It has been 41 years if you count the time my own body has been reacting to allergens and I didn’t know it.

Acknowledging Our Feelings

Other days are not as hard. On those days, it’s more like walking on a balance beam. I know I’ve covered all my bases. I feel more secure. On those days, the old mind and body feel used to it. It does get easier in some ways as we educate ourselves and know the ropes.

Too, on those days I feel such support and love from this food allergy community, my family and friends that it all feels doable and safe. I know I’m not alone. We’re getting through. We’re making progress!

I also know  that every time one of us advocates for change, it helps everyone. 

It’s good I’m on the tightrope, being careful, staying safe. I know I can handle it. But I thought I might share my feelings about it today.

I do strongly believe in being positive, playing the hand we’re dealt, appreciating what we have, spreading awareness, educating, moving forward, making strides, paving the way, and always supporting one another. This food allergy community is hands-down the most amazing and supportive group of people and friends I’ve ever known. They not only care, but they share and provide a wealth of resources. I’m constantly learning!

But it’s always good to keep in touch with our true feelings. Acknowledge them. Let them out. Let them breathe!

Today in this moment of true reflection, mindfulness, honesty and sharing, I want to share what I’m feeling. I’ve met so many people online and in person who are just starting out on their journey of managing food allergies. They’re scared, confused, unsure, anxious and in need of our support.

So I thought I would reach out and let them know they certainly aren’t alone.

I’ve met quite a few speed bumps along the way, but knowing I’m keeping my son safe and doing the best for him does make it easier. (For new food allergy parents, see the post with my five tips for being your child’s best advocate.)

Knowing strides are being made on a larger scale helps too. The President’s recent signing of what I think of as the epinephrine access law is a good first step, but more needs to be done.

Until then, in our own little way from our own little corner of the world, my family and I are working to increase food allergy awareness, education, inclusion, outreach and understanding every single day.

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How are you feeling on your journey of managing food allergies or other health concerns? Share with us. It may help someone (like me) feel they aren’t alone!

Vector illustration by Pavel L/www.shutterstock.com.

2 Responses to “Walking the Tightrope, Making a Difference Step by Step”
  1. Desiree DeNourie

    Hi Alison,

    I appreciate your willingness to openly share your emotions. Sometimes that’s difficult, especially to “strangers” in cyber world. I agree with you though. Talking about thoughts, and feelings will allow us to grow, and help each other. Chances are there are many more people who feel the same way. My son too has recently begun to ask when he will outgrow his allergies. I always go the route of telling him what I truly believe, which is: his body is smarter than everyone else’s because it knows something is not good for him, and he’ll live to be a healthy 100+ year old. He really loves hearing that, and it gives him back some confidence. I have written posts on my site about how his food allergies have actually helped make the rest of my family healthier. This journey has been a difficult, and scary roller coaster, but I am very happy to have gained the support of an online community.

    • Alison Johansen

      I love what you tell your son when he asks about outgrowing his allergies–that his body is smarter than everyone else’s because it knows something isn’t good for him. What a great answer, mama! Thank you so much for sharing too! It is a challenging journey, isn’t it. But I too am so very grateful for food allergy friends like you. Thank you for reaching out!