“Good Luck.”- ALlergy Awareness Week

My hands were shaking as his words played over and over in my head. “This will save her if she gets in trouble. It should keep her from dying. Good luck.”  I clutched the device in my hands the entire way home- 2 hours- as if clutching it in my hands would somehow keep my baby alive just by the action of holding it. The thought of using it to save her was almost as terrifying as the thought of losing her. Almost.

She was not quite 2 the first time it happened. There are pictures, though 9 years later I still can’t look at them. We were on a dream vacation. A cruise after a week in the happiest place on earth. Our last formal dinner. She stole bites of my food and giggled, ate happily, played with her Papa…slowly she became irritable though, and for her that wasn’t too unusual. She was tired. Then, hives began to show up on her sweet baby cheeks, her chin, and soon her entire body. We left that beautiful dining room and called the on ship doctor. He was out. His nurse barely spoke english. He wasn’t sure what was wrong. For a while things became fuzzy. As we put her in a cold bath and my mom began dumping liquid antihistamines down her throat and I called her pediatrician at $10 a minute from the middle of the ocean. She would be OK. After an hour the hives went down and for the next 2 days we administered more meds every 4 hours. And, we made out first appointment with the allergist.

I will forever be grateful for the man who shed light on WHY my baby got so sick eating pumpkin soup- There were hazelnuts in it, nutmeg and who knows what else… She would- at 2 years old- be diagnosed with anaphylactic (life threatening) food allergies to common foods. And, our life, how I mother, how I shop, how I cook, how I do literally every single thing in my own life would change. Although I am grateful for our first allergist, he lacked a practicality or even bedside manner that a new mom needed.  I remember crying when I got home and telling my mom I was scared to ever feed my baby again because his good luck statements made it feel like feeding her was risking her life. I felt like food for us became the same training you use with teaching kids something is hot. ” Don’t touch, HOT” for us was ” Don’t touch, it could make you sick”. Unfortunately it bred a fear based home life for all of us.

There are so many, many instances I could share on how scary things have been- like the time she ate a muffin and started choking saying her throat was “funny” and couldn’t breathe as we were driving in the car on a back road 30 minutes from any sort of emergency medical teams.  Or, the time I tried to train a babysitter with the epi-pen and it for whatever reason exploded the orange I was using in my hand and left us all TERRIFIED of what would happen if we ever had to inject her without assistance. Or, how about the time my son had a total breakdown at school because he ate a peanut butter treat and thought if he ever touched his big sissy again she would die. Scary, sad and sometimes, very hard.

I have been called helicopter mom and much worse. I have had MONTHS where I couldn’t leave her with anyone because everyone was afraid to feed her. We’ve had 3 counselors now to help us navigate anxiety. And, thankfully now have one who is really making progress. We have a great allergist we love now whose approach to life with allergies has given us glimpses of feeling like we are normal. The anxiety over food has caused enough issues I have worried I have failed completely as a mom. Her anxiety over food in general had her labeled failure to thrive for a while. Lovely thing for a 10 year old.

Here’s the thing. Shes 11. She’s OK. We’ve learned how to deal. There are some things I wish people understood about her. If you’re curious what an allergy mom wishes non-allergy moms knew- read on.

#1- We aren’t being dramatic. We’ve watched food almost kill our children more than once. And, it’s scary. And, it’s our job to protect them.

#2- We didn’t choose this. It isn’t a fad for us. We were allergen aware before it was cool and we will be after. For us it isn’t cool. It’s awful. It’s limiting and frustrating.

#3- Yes, one bite can kill her. Or, in her case 1 drop of sesame oil could trigger a reaction we can’t bring her back from. So, yes, if you eat hummus and I ask you not to touch her or she leaves the room- she isn’t being rude and we aren’t being paranoid.

#4- In every other way she’s a normal kid-  She’s just way more aware of her surroundings than most adults even are.

#5- She likely won’t outgrow them. She’s already outgrown the ones she was going to. And, yes, it’s awesome that your aunt has a cousin whose sister outgrew all her allergies. I wish that was what we had to look forward to. But, it isn’t and you telling us to “have hope” only makes her feel like it’s something she should find a way to change.

#6 – If you don’t want to keep her safe, I don’t have time or energy to convince you. If you do care enough about us to learn what has to be done- and do it, I will love you forever, because it’s rare and this often feels very lonely.

#7- I won’t be ashamed to advocate for food labeling and laws in the U.S. Because quite frankly, it could save her life one day.

#8- I’m worried about her future. She won’t be able to kiss her husband if he’s eaten nuts. And, finding a boy who loves her enough to refrain from her allergens- because he loves her is something I think about. So, raise your own kids to understand that LOVE sometimes means sacrifice.

Ultimately, the one thing I wish people understood is, for all my helicopter parenting, I am just doing my best to keep her safe. To keep my baby alive. And, I appreciate your prayers and your support. When I seem a little crazy over this, I probably am. We are all trying to be the best parents we can, but, I carry the burden of her dying if I miss something and it’s incredibly daunting.

 

 

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