While many of you may be able to relate to my story of parenting a child with a life-threatening food allergy, for many others it will seem so very remote.
As the parent of a daughter who lives with an anaphylactic allergy to dairy and beef, a condition whereby the smallest trace of these allergens can lead to her being unable to breathe and could result in the unthinkable, we are faced with a dilemma. How do we go about protecting our child’s world while maintaining a balanced disposition and not becoming the subject of yet another rolling of the eyes due to being seemingly neurotic and “over the top”?
How do we relay to others that while their children see a birthday party as an exciting event to look forward to, our child instantly (at the age of 10) wonders whether she will be able to attend and, if so, whether we will show up early enough before the food comes out, so that she doesn’t run the risk of contamination. (Of course we always do, because, little does she know, we are counting the minutes to ensure she is not put in danger due to my lateness.)
How do we relay to others that every time our child steps out of the house we know we can’t ever ignore a phone call, just in case it’s someone telling us our child has been rushed to the hospital? Yes, this has happened. We have had to watch our child being wheeled into the ER five times in her short ten years, each time thanking G‑d that the EpiPen worked and she is still with us.
While others in the grocery store throw goods into their wagon without a care in the world, there we are, wishing we had a magnifying glass, standing there squinting to make sure we didn’t miss any ingredient that could potentially kill our child.
There is not a single social event, from play dates, to afterschool activities, to school itself, family weddings, and summer camps that we don’t either meet or speak to the responsible parties, going over medical protocols should our child come in contact with her allergens.
Every night when we close our eyes and every morning when we awake, we pray that this will be a good day. We wonder whether in the event our daughter did show signs of a reaction, those around her would know what to do, knowing that there is a small window after which an EpiPen may no longer work. We have no choice, even though at times it goes against our very nature, but to be that harassing parent who has to ask time and time again from our daughter’s peers and our own: Is the food safe? Did you wash your hands? All we ask in return is honesty. And for that we will only thank you.
You see, a child that lives with a life-threatening allergy lives with a sense of embarrassment, a sense of shame, a feeling of being alone. Their shame comes from feeling different, separated, and scared.
Society generally doesn’t truly understand the consequences of not being aware and alert at all times and how devastating the consequences can be. Although our children have a voice, they don’t know how to use it to express to their teachers, friends, and even families the impact their awareness can have on them. If they did, it might go something like this:
Please don’t bring a dairy snack into my house. I know you may really want it—but I want to live!
Please wash your hands before touching me. I know it’s annoying—but I want to live!
Please don’t kiss me without washing your mouth, though I know it’s what most kids do—but I want to live!
Please let me know before I get all dressed up for a party if there will be dairy—because I want to live!
Please let me know if a school event will be safe for me—because I want to live!
Please don’t ever stick your hand into my snack, even if it seems such a natural thing to do—because I want to live!
And please, please learn how to use an EpiPen—because I and so many other little boys and girls want to live!
We are so truly blessed to have the most amazing, supportive, compassionate circle of friends who have done everything and gone to the greatest lengths to both understand and accommodate my daughter’s allergies as much as they can. And for that we are eternally grateful.
These same very close friends and family saw and felt the need to make a change and had the foresight to understand and feel for something that desperately needed attention. And so FAAB—Food Allergy Awareness Buddies—was born.
Please come and join us on Thursday, February 20, at the Levi Yitzchak Library at 564 Central Avenue, 11:00 a.m.–7:00 p.m., where FAAB will be hosting an Allergy Awareness Day. Medical professionals will be on hand throughout the day to instruct you on recognizing those first crucial signs and to demonstrate the administration of an EpiPen.
Come and learn how to save a life! v