Two years ago our oldest daughter was diagnosed with a peanut allergy. With her annual appointment only one week away, it has caused me to reflect on the impact that her diagnosis has had on our family.
My original reaction to the news was to be scared, anxious, paranoid and overwhelmed. I can remember returning from her allergy appointment, sitting at our kitchen table and silently crying while I watched her eat the macaroni and cheese that she had been safely eating since she was a toddler. I was panicky, and I was scared. Scared that a snack, a bowl of ice cream, or her favorite frosted cupcake could kill her.
I did not trust that anyone could take care of our daughter. I did not trust extended family members, I did not trust teachers at school, and I did not trust other parents or friends to be diligent enough to take care of her.
It is hard to explain the effects of a food allergy to a three-year old. No, we can’t get ice cream at the Farm; no, you can’t eat the birthday cake at your friend’s party. Watching my three-year old daughter learn how her allergy would impact her life, made me feel bad. I felt pity and sadness for the limited experiences that she would have.
I felt angry. Why her? Why us? Why me?
Over the past two years we have made adjustments in our life, we have modified our routine to incorporate safety precautions for our daughter. Throughout my two years of living with a child with food allergies my perspective on the situation has dramatically changed.
I refuse to live in fear. Is it scary to have a child with a life threatening food allergy? You’re damn right it is! However, I aim to find balance in the situation. I am constantly aware of my daughter’s allergy and I have an emergency plan in place. I force myself to step back and look at the bigger picture. There are millions of children living with food allergies and very few food allergy deaths occur each year. I find comfort in the statistics. My daughter has a much higher chance of being injured in a car accident than by her food allergy. I don’t want my daughter to live in fear and I will not live in fear.
Other people DO understand the severity of my daughter’s allergy and they are capable of keeping her safe. My family is fortunate enough to have extended family members who are diligent and thoughtful enough to care for my daughter. I know that when I show up at my Niece’s first birthday I do not have to pack a separate lunch for my daughter, I know that my Sister-in-Law wouldn’t dream of hosting a birthday party that my daughter could not be a part of…cupcakes and all! I am confident that when I show up at my Mom’s on Thanksgiving the entire meal will be peanut free. Some days it feels like we lost the genetic, allergy lottery, but we sure as hell won the awesome friend one! I have friends in my life who feel comfortable hosting my daughter at their homes, they have watched the Auvi-Q video, they have read my ranting emails, they order nut free cakes and cupcakes for THEIR children’s birthday parties, so MY daughter can be included. My daughter has friends who know about her allergy, who talk about it, and who search out ways to keep her safe.
Do not feel pity for my daughter. She does not allow her allergy to limit her experiences. On vacation she will go out to dinner, sit at the table, eat her food out of to-go travel cups, and watch her sister eat ice cream. But you can guarantee that before we ever set foot in the restaurant she had negotiated two peanut free chocolate bars and a trolley ride for herself to make up for her willingness to accept her allergy. She does not think of herself as different, she is not afraid to do the same things as her friends. She is her own advocate, she has fun, and she enjoys every new experience that comes her way!
I have stopped feeling angry. Children and parents alike are faced with hardships on a daily basis. There are children suffering and living with horrible and painful medical conditions. I will only allow food allergies to be an inconvenience. I will manage them, they will not manage us.
If you are a parent of a child with a food allergy, regardless if your child has been newly diagnosed, or if you have been living with it for years, I hope that my words and my changing perspective will offer you some relief. Be vigilant, have a safety plan, inform your child, allow your child be their own advocate, but whatever you do, do not let it define who your child is.