When people especially other parents say, “I don’t know how you do it,” “I could never handle it (insert your child’s issue here),” or “I can’t imagine dealing with all that,” it stings. It is not a compliment. It is exceedingly frustrating. I just want (or wanted to) snarl “well I guess you’d have to call CPS to pick up your kids.” Parents of children with challenging needs whether they are medical, emotional, temperament, behavioral or anything else have no choice. There is no alternative. They have to step up and be parents to their children, challenges and all, and I choose to believe they strive to be the parents those children deserve. So if you see another parent and you want them to know you notice how hard their situation is – think before you speak. Think what would *I* want to hear if I was in the midst of life challenges with my child. Offer them grace—keep it simple, on point, and hopefully elegant.
Both of my sons have FPIES – Food Protein Induced Enterocolitis Syndrome. FPIES is a rare digestive allergy that little is known about. Reactions can be mild to severe – vomiting and what we call booty drama with blood in it is typical but shock is always a possibility. Every food can cause a reaction and there is no test. Every. Food. Every food has to be trialed individually. Every. Food. Every single ingredient. Inactive ingredients in medications meant to treat symptoms can cause reactions. My sons also both reacted to traces of foods in my breastmilk, though not all FPIES children do.
My four and half year has twelve foods he can safely eat and over 60 foods that have caused reactions and every food he has never been exposed to is a potential reaction trigger – what we call a fail. My children cannot eat at restaurants except perhaps for ordering a banana or other safe fruit uncut (cross contact is a big concern) and it is difficult for me to get safe foods because of all the things I cannot ingest without making them sick. FPIES also causes many secondary issues including vitamin and mineral deficiencies, failure to thrive, and developmental delays requiring multiple therapies.
Back to my point, after hearing those incredibly irritating words from friends or people I thought were friends more times than I can count I had an epiphany. They noticed how hard our reality was and wanted to say something but had no words. They wanted to say, “I see you working so hard to keep your sons safe.” They wanted to say, “Wow you really have to read food labels so diligently!” They may have even wanted to say, “the realities of your daily life suck!” Or “that sounds exhausting!”
So now I smile and say, “yes, it is really hard but we are handling it the only way we know how.” I choose to assume their intentions were good but that they fell short for me. I assume they want to say something kind or compassionate but that their words didn’t come. They noticed my challenge and felt compelled to speak. People want to say more, to be more, they want to show empathy, but empathy is hard. Empathy does not come naturally to most people. Empathy for people in challenging situations requires one to step out of their comfort zone and imagine that situation they may think unimaginable.
I also try to offer concrete ways to be helpful to us including washing their children’s hands and faces after eating/before interacting with my children.
For lack of a better term, I offer them grace. Grace is defined as simple elegance or refinement of movement. I think this can be applied to the spoken word. I respond with grace by speaking simply, pointedly and hopefully with elegance—or at least not rolling eyes.
Murphy Benet is the mother of two boys, four and a half and one and a half, who both have FPIES. She is in the process of getting her family started in the adventure of homeschooling using the Montessori method. She and her husband live in Melbourne, Florida – just miles from the beach that she doesn’t get to visit nearly often enough.
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