The school year is about to begin, and I feel my anxiety rise a little more every few hours. My daughter is starting kindergarten at an excellent school, with a gold-standard teacher, who is kind and devoted beyond measure. I know the faculty, administration, and staff personally, and they’ve known me for a long time. Still, the looming “first day of school” has been terrifying me for years. I can assure you this is not merely a case of pre-kindergarten jitters, my daughter has a life threatening peanut allergy.
She can die from eating, touching or breathing microscopic peanut particles.
Sure, I’ve been preparing for the start of school by shopping for the standard supplies, lunch tote and the safest stainless steel water canteen, but I’m also gathering medication, compiling an allergy action plan, and meeting with school officials. The school we are attending has never had a student with life-threatening food allergies before, so we are preparing and designing protocol that is new to everyone. The endless hours I spend researching will hopefully help to create an environment that is safe for my daughter and minimally disruptive for the student population. I have been gathering my strength for the inevitable backlash that comes with change, while trying my best to remain positive, balanced, open and firm.
I always had a feeling that she was allergic to peanuts. I waited until she was 18 months old, and we were near a hospital before I tested it out. Sure enough, immediately her face puffed up and was covered in hives, and her eyes swelled shut. Her pediatrician gave me some Epi shots and told me to take them everywhere. Since then she has had some horrifying allergic reactions, one where we sped home from a party to meet the ambulance, while she went completely limp and unresponsive. I’ll never forget looking at my husband and saying, “She’s going to die”.
Over the past 3 years we have seen specialists and put her through painful testing. It is clear at this point that she will not outgrow this allergy and she is learning to live her life within its restrictions. The type of anaphylaxis that she has experienced has been a drop in blood pressure and becoming unconscious. This is a rare and serious reaction because it means that her heart is slowing and will just stop if she isn’t treated. It was difficult for us to determine the signs the first few times it happened, because it simply looked like she was tired and wanted to nap. We watched it progress to the point of her eyes rolling back into her head and she was unable to speak or move. Luckily, Benadryl is usually effective at quickly stopping the reaction, though the last time it was not, and we had to administer the Epi, and make another trip to E.R.
She has had reactions from:
- Eating peanut butter cereal
- A cupcake from a trusted friend who forgot they added peanut butter
- Breathing peanut dust from an open candy wrapper
- Touching an iPhone, owned by a friend who ate peanut butter earlier in the day
- A few mystery reactions, from “invisible” peanut residue
Trust me when I say, I never wanted to be “that parent” who hovered and read every label, but I have to be to keep my daughter alive until she can do it for herself. I evaluate everything, scan what people are eating, look for peanut butter smears on clothes, check the ground for discarded peanut shells and uneaten crusts of sandwiches, guide her away from the bulk bins and peanut grinders in grocery stores, scrutinize menus, avoid entire ethnic cuisines, miss baseball games, make special arrangements with airlines, and the list goes on and is added to constantly. We have family conversations in the car, at the table and wherever we go, so that she can be prepared. I have her practice ordering food and asking about ingredients. We talk about how it feels to be “peanut sick”.
She is getting it, but she is only 5 years old, that is why starting kindergarten is such a big deal. School will be a safe place where she can learn to be on her own, have her autonomy, yet still be protected. As she grows, she will take more responsibly for her health, a little at a time. I seriously considered homeschooling her because of this disability, but living in a “bubble” will not help her to grow into a responsible and self-reliant adult (never mind that she has a legal right to an education). Accidental poisonings will happen, and sometimes I won’t be there, and she will still be OK <deep breath>.
As difficult as it is, I am sending my daughter out on her own, into the public school system. It is my hope that other students and parents can understand the seriousness of her peanut allergy, and be compassionate, helpful and supportive. Someday she won’t need the help she does now, but that is still a long way off. Life threatening peanut allergies are unfortunately becoming a way of life for many of us, we will probably all have family members, friends, roommates and coworkers that we will need to be considerate of, so now is a good time to start being sensitive and accepting. We’re all in this together, right?
