It was a moment of sheer desperation, back in December 2015, when I logged onto Facebook and joined a group for parents of children with milk and soy allergies. My five-month-old son could not gain weight, and was given the awful diagnosis of “failure to thrive.” He seemed to be allergic to my breastmilk due to the foods I ate. His GI doctor, who was guiding me as I systematically eliminated foods from my diet to help my baby tolerate my breastmilk, suggested that I join Facebook groups for moral support and allergy-friendly recipe ideas. Though I’ve always been skeptical about online communities, I ran out of other options and decided to give it a try.
At first I posted questions and joined conversations about allergy-friendly restaurants and recipe ideas. “What do you eat when you’re craving a dairy/egg/soy-free dessert?” But over time, as I witnessed the helpful and non-judgmental posts and replies showing up on the message board, my posts became raw and direct. “Help! What the hell do I do when my kid is allergic to every formula, and every food through my breastmilk? How on earth do I feed my child?!” I was shown compassion from fellow parents in the group, some providing practical advice, and some with virtual hugs and “me too” camaraderie. We connected with each other over our children’s similar symptoms, and how these allergies affected our lives. We shared concerns over our babies’ sleep disturbances and stomach pain. “My son’s reflux is out of control—he’s in pain constantly, despite medicines, and I do not know what to do.” We encouraged each other through our feelings of inadequacy. The vulnerability displayed by the other parents helped me feel comfortable sharing my own stories and allowed me to develop companionship with the other group members, although I was still somewhat guarded about sharing online. Open letter to parents of a child who is newly diagnosed
When, in February of 2016, my then-seven-month-old son was still losing weight, not tolerating any of the hypoallergenic formula he tried and not tolerating my breastmilk despite me eliminating my diet down to only turkey, quinoa, and kale, I wanted to join another Facebook group, one for children with severe, multi-food allergies. But to join, I had to “friend” a complete stranger to help me get in—something that made me, with my distrust for connecting online, pretty uncomfortable. I justified that I could add this woman, Kristine, as a friend to get into the group, and then “defriend” her immediately.
But once I was added to the group, Kristine responded to my comments and questions, and I began responding to hers. She was (and still is) one of the most creative chefs I ever came across, making full meals for her children out of minimal ingredients like cassava and coconut milk, and she freely shared her secrets and suggestions. I sought her help for making foods for my son to try, such as homemade hemp milk and sunflower seed butter. But we bonded over more than recipes. Our sons, only a couple of months apart in age, both had unexplained and unusual severe allergic reactions to foods. Kristine and I were in the trenches of searching for diagnoses for our sons, and we both understood the oddities, the inconsistencies and the rarities of our sons’ conditions in a way that did not require explanation. Once, I called her, panicked: “Is it normal for my son to spike a fever and turn red all over his body after running around an air-conditioned house for five minutes?” She calmly answered: “No, that is not a typical response,” and helped me brainstorm ways to help my son stabilize from his unusual reaction to exercise. I never have to justify my questions or thoughts to her—she simply gets it because she lives it. Though I have never met her, Kristine has evolved to be one of my most trusted friends, someone who understands my daily challenges in a way that very few people can, and someone who celebrates my successes with deep empathy.
And she wasn’t the only mom I connected with in a real way. I have cultivated friendships with several other parents around the world, building a supportive network of friends who deeply and personally understand our family’s struggles, successes and challenges.
I have even been able to meet some of them face-to-face. Julie, who lives only a few miles away, and whose daughter has similar reactions to food as my son, invited us to her daughter’s first birthday party. My son was 11 months at the time and, up until that point, we had avoided parties because of the risks of exposure to food. But because of her daughter’s allergies, the party was food-free, so it was a safe, fun environment where we could all relax and enjoy. It was such a relief to be able to engage in a “typical” social outing with my son, without feeling nervous, guilty and exhausted.
My attitude about developing friendships through social media has evolved during the last three years of parenting my son. Motherhood can be incredibly isolating, especially when you’re parenting a child with a rare illness. I couldn’t imagine what I would have done without those friendships I made online.
Today, I am active in providing support and friendship to parents who are just starting out in their journeys with their children’s diagnoses. I created my own Facebook group for local parents of children with my son’s condition (we finally got a diagnosis: mast cell activation syndrome), and I have reached out to provide support for parents who are in the early stages of parenting children with complex medical needs. Many parents in similar situations provided advice to me online throughout the years of managing my son’s condition; I feel like it’s my turn to pay it forward. My son’s condition provides daily challenges, and I still frequently find myself on the receiving end of support. Parenting my son often leaves me confined at home without the emotional support I would receive if I could be more freely out in the community with my child. Thanks to my online community, I get the strength I need to overcome the many hurdles our family faces each day.