As we settled into a booth with our lattes, she took out her phone and showed me a picture of her 19-year-old son, Michael*, who has been paralyzed from the neck down since his traumatic birth. He is tube-fed and communicates via a straw-like device hooked up to a computer, similar to the set-up used by scientist Steven Hawking.
Lisa talked about the construction needed to accommodate Michael’s wheelchair at home and shared the life-threatening aspects of his condition. Michael is more susceptible to choking and infections, which are further complicated by the fact that he cannot speak.
Intellectually, Michael is extremely bright and has done quite well in his first year of college. But socially, he feels invisible. Lisa said people are uncomfortable around him, so they don’t invite him to parties or events. Then Lisa turned to me and said, “So tell me about your kids.” I was speechless.
I’d become accustomed to sharing the details of my son’s multiple food allergies, but suddenly it felt almost inappropriate to talk about his comparatively insignificant challenges. Sure there is a lot to do behind the scenes and yes, we have our scary moments, but next to Michael, my son’s life sounded so normal.
After a long chat, Lisa and I headed to the parking lot to go our separate ways. I watched her climb into a large, wheelchair-accessible van as I easily settled into my sedan. On the passenger seat next to me, I spotted my son’s medicine pack peeking out of my purse. His medicine and a few snacks are all that I need to carry to get him safely through a regular day.
It’s never a contest, but let’s be honest, we do compare. For the first 10 years of my son’s life, I envied “typical” families who seemed to have it so much easier. Yet, driving home from that coffee shop, it dawned on me that perhaps I should look at families like Lisa’s and recognize that, sometimes, I’m the one who has it easier.
The more I thought about our life, the more I started to realize that even some of the challenging aspects of living with food allergies have a positive side. Here are a few of the benefits I now see.
Thanks to a diet filled with homemade meals and snacks rather than convenience foods, my son eats so much better than most of his peers. And although it’s no small feat at times, I feel lucky that as long as he avoids his allergens, he’s a healthy kid.
Food allergies are relatively invisible, and that can make it tough to educate others. But if given the choice, wouldn’t my son prefer to have a hidden health condition that he can disclose as needed?
Almost all of the playdates and sleepovers take place in our home. As hostess at the “hangout house,” I feel safer not only with the food my son is eating, but also knowing where he is. I know who his friends are and that they understand his needs. Another positive: I can’t help but smile as they gather the morning after a slumber party to enjoy bowls of gluten-free cereal with rice milk.
Advocating for my son has caused some relationships to deteriorate, but has strengthened others. Tracy was my good friend for years before I had my son and became a better friend after, even though she has no ties to the allergy world. She was the first person I called when my son outgrew his milk allergy. We cried together. Not everyone would understand the monumental significance, but Tracy did.
Early on, my heart would break every time my son was excluded. But as he grew, he would brush it off with a positive attitude. “It’s no big deal, mom,” I’ve heard many times. His ability to handle social situations and advocate for himself has carried over into other aspects of his life and today he shows maturity beyond his years.
For better or for worse, food allergies form only one piece of the puzzle in my son’s life, and that is something for which I am truly grateful.
*Names changed for privacy.
Allergic Living contributor Gina Clowes is a certified master life coach, who specializes in the needs of parents of children with food allergies. She is the founder of AllergyMoms.com, an online support group serving thousands of families and professional members worldwide.