As you know from many of my previous posts, my little guy lives with life threatening food allergies. I’ve gone back and forth for months (long before this blog even launched) over whether or not I would share our story here. I cringe, cry, and grow nauseous reading some of the stories of families’ experiences with food allergies because I have lived those very moments. I have watched my child break out in hives and scratch his skin raw. I have ridden in the back of an ambulance clutching my terrified 15-month-old, praying for answers. I have knelt in front of my wailing, vomiting, wheezing 22-month-old, epipen in hand, tears in eyes, whispering words of comfort I’m not sure I even believed (was it really going to be ok?) before hitting him in the thigh with the life-saving drug. I have watched him cough or scratch an itch or make a sudden movement during meal time and I have panicked over and over and over again thinking it was an allergic reaction to…anything. And I am constantly, CONSTANTLY consumed with fear at the thought of losing my child with each and every interaction he has with food. That, more than anything, I want you to hear. If you ever perceive a parent of a child with food allergies to be acting irrationally, being overprotective, or just downright bossy, I beg of you, put yourself in her shoes and grant her some grace. If being “that mom” saves my child’s life, you better believe I’m gonna be the loudest version of “that mom” I can be. Because there was a time when I wasn’t ready to be “that mom.” There was a time I was afraid to be “that mom.” And I still, at times, struggle with being the best advocate for Buddy…but I’m getting better at it every day.
With the story of the Giorgi Family’s loss making national news, I knew the time was right to start the discussion here on Gaining Mommymentum. Without these stories being shared, we cannot expect awareness; let alone acceptance, or assistance. And we need all of these. We desperately need all of these.
I’m not going to share a personal story about the times we have faced severe reactions to food allergens. Not today at least. Our “stories” are still too fresh for them to really be “stories” yet…and my heart just isn’t ready.
So, my friends, let us begin with awareness. These are just three of the many things that I want you to know about day to day living with food allergies…there are so many more but I think these three will start off our discussion well as they all deal with interactions with food in places outside our own “safe havens.”
1. Public places are scary for our family. There is food everywhere and food is potentially public enemy #1 in our eyes. I know food is unavoidable and I know I cannot wipe down every surface Buddy could possibly touch before he touches it. I do not wipe down the playground, or the play area at the mall or Chick Fil A, though I have watched children being allowed to run around in these areas with peanut butter snack crackers and, yes, I have even witnessed a preschooler walking around a playground eating loose pistachios from her coat pocket. Unfortunately, both of these instances occured before I had enough courage to approach their parents/caretakers to discuss this. We left the mall play area when I spotted the peanut butter crackers. We moved to a different area of the playground when we saw the little girl with pistachios.
I understand that our kids need snacks. I understand the benefit of keeping our kids’ bellies from being empty. I do. Buddy still needs snacks too even though he has food allergies. But I know that even the snacks I choose that are safe for Buddy are not safe for all children. I ask you to join me in having your children sit with you away from play equipment to eat their snack. Whatever it may be. And I ask you to join me in wiping your child’s hands with hand wipes both before and AFTER they eat to help remove food proteins. (Side note: Antibacterial hand gels kill germs but they do not remove food proteins–and food proteins are what cause allergic reactions–scrubbing with soap and water or using hand wipes to thoroughly wipe their hands has been proven most effective.) Please join me in keeping food away from play areas.
2. It is stressful and difficult to take kids out to eat. It is even more stressful and difficult to take a child with food allergies out to eat. For us, it involves calling the restaurant ahead of time, hopefully during off-peak hours so we can (hopefully) have the full attention of the manager we are speaking to, discussing menu options, prep space, cross-contamination risks…are there even any options on the menu that are safe for our child? Some restaurants are willing to go above and beyond to help us find something that will work. Others have told us they cannot serve us or cannot guarantee a safe meal. I appreciate their honesty, but that answer always depresses me. We are slowly building a list of restaurants that we are comfortable with and that we know have safe options for Buddy to eat but it is still stressful. We deal with all kinds of stares and looks as we break out the wipes and scrub the high chair, scrub the table, scrub ourselves…then we bring out a stick down placemat (if I remembered to pack one…if I forgot, there’s another thing for me to stress about…) I’m not embarassed about it anymore. I’m just doing what I need to do for my kiddo. Eating out as a family has lost its appeal, but I am fighting to get it back. It’s one of those “normal” family activities that I desperately want for my child. It just carries an extra (scary) challenge with it.
3. Birthday parties are SUPER stressful. So are holiday gatherings. Basically any gathering where there are lots of people & food. Bring on the cortisol. There is so much food and so many people walking around with food and so. many. kids. with food on their hands touching everything. And have you ever tried to tell a 2-year-old they can’t have a piece of cake? (Though I have learned to bring my own cupcake along with me for Buddy.) I feel terribly about all the birthday parties and gatherings we have backed out on in the past 9 months but most days I just can’t handle the stress of it. As buddy gets older and understands more about his allergies and we become more comfortable, we are trying more and more of these types of gatherings. If you do spot us at a birthday party or other large gathering where there is food, please don’t be alarmed if/when we make a mad dash for the door with quick goodbyes or show up late to avoid the meal or leave early to avoid the cake or just stop by to say hi and drop off a present. It’s a work in progress. Please DO know that we really, really want to celebrate with you. And please DO know that we will call or email you ahead of time with 101 questions about the food being served at the party. 🙂 Just ask Mandy.
Friends with food allergies: What else do you want everyone to know?
Friends without food allergies: What else do you want to know?
Let’s keep this conversation going. It’s an important one.