This past Friday night, I was bringing my son Joshua to his friend's birthday party. Other parents arrived and dropped off their children, and then left. I recall those days when I was able to drop off my two older children at a party and leave in order to spend some much-needed alone time, or have a "date night" with my husband. However, my youngest child, Joshua, suffers from a severe food allergy and for me, those days are in the past.
As a parent with a food allergic child, I feel a constant low-grade anxiety about meals. The world is full of culinary land mines, and I try to map a path to navigate around them for my child. I do not write this post looking for pity. Rather, I want to paint a window into my world and my heart. I hold out hope that naysayers who criticize the concerns of an allergic parent might, if given a glimpse into our lives and fears, give us a little more empathy and understanding.
Each day when I send my son out the door, it is with the knowledge that an ordinary food has the potential to end his life. This ordinary food can, in seconds, cover his body in hives, swell his lips to double their size and cause him to vomit and struggle to breathe. Failure to treat food-induced anaphylaxis quickly (i.e. within minutes) with epinephrine increases the risk of death. Imagine your child playing a real life game where bags of a child-specific poison are strategically hidden in places where your child ventures. What do you think your stress level would be for your child and for yourself? Would you "freak out" at the school playground if you see that bag of poison lurking nearby your child, or would you perhaps try to get that poison banned from your child's school where he spends most of his day? Maybe a better question to ask is what wouldn't you do as a parent to keep your child safe?
As a result of our food allergic child being so young, we are the parents who never "drop off" at a birthday party. We cringe whenever the phone rings during the day if the caller ID shown is the school. We sit and watch every sports practice and go on all school trips. A playdate typically means we have our child's friends come to our house. Birthday parties and nights with grandparents require logistical preparation and planning. An itinerary is drawn up in advance, safe restaurants are mapped out, safe food is purchased that resembles the ones we predict will be served and multiple EpiPens are checked and double-checked. We do all this to ensure our son has the most "normal" carefree childhood, with a healthy and necessary dose of fear. It is a tightrope we navigate each and every day.
Despite all of my precautions and stresses, these days are the easy ones. While under our roof, we can take steps to keep him safe. We can advocate for our son at school, teach him a sense of responsibility to read ingredient labels, convey a seriousness of his allergy and make sure he carries an EpiPen and knows how to use it. Once he is no longer under our roof, our ability to protect him is diminished. He may do everything "right." He may exercise a copious amount of caution, and it may not be enough. It's a scary world out there when a crumb of the wrong cookie can be lethal.
Mistakes happen. The stark reality is that there are many food products recalled every week. Foods labeled as safe may actually contain your child's deadly allergen. I also pray that one day my child does not give in to the impulse to have a bite of an appetizing food that may not be safe. Normal teenage years are replete with risk-taking behavior and studies confirm teenagers and young adults with food allergies are at the highest risk of fatal food induced anaphylaxis.
I am constantly shocked at the level of vitriolic commentary I am subjected to regarding my goal to make airline travel safer for those traveling with food allergies. I want to be clear to the naysayers that your child is as precious as mine. However, food choice is never more precious than a child's life. Seeing your child go into anaphylactic shock becomes indelibly carved into your memory. Everyday as a food allergic parent, there is the possibility of reliving this memory with a not-so-positive outcome.
So, the next time you roll your eyes at my hysteria over snack food or you just want to eat your nuts on an airplane, know that I fight this battle not against you and your rights, but as an advocate for my child and others like him because there are no "do-overs" with deadly food allergies. Please show compassion and empathy to children and adults who suffer from food allergies.