After a hard day in "Allergy Land" I caught myself thinking millions of thoughts and wondering if anyone had any idea what it was like to be in this position. Obviously you can't know what it's like unless you are given a glimpse, so here goes. Here are five things this allergy mama wishes you knew:
1. I may seem obsessive and overprotective
I realize I may come across like this to others but honestly I'm okay with that. If me reminding you of something over and over again means one less reaction for Brayden, then it was worth it. The older Brayden gets the more I pray that I am able to balance my job of keeping him safe and also teaching him how to handle and take charge of his allergies on his own. But as long as he's two feet tall with only the ability to jibber jabber all day, then I will continue to be my child's advocate and speak for him, hover, remind, question, and remind some more in order to keep him safe. Sorry (not sorry) if you don't like that.
2. My child is perfectly normal in every other way
I am determined to not allow food allergies to define who Brayden is. At only 14 months old this kid is smart, super adorable, stubborn, hilarious, determined, loving, cuddly and so much more. He loves books, his favorite word as of late is "WOW!" and he can dance like you wouldn't believe (I'm talking some good hip action). He just so happens to also be allergic to dairy, eggs, peanuts and tree nuts. He is a kid with food allergies, he's not a food allergy kid.
3. I mourn food
This one is kind of silly, I get that but I truly do mourn the food Brayden can't eat. I feel sad that he can't go to a Mexican restaurant and have chips and queso, a cheese enchilada or buttered tortillas. It breaks my heart that we won't be going on family ice cream runs on warm summer nights. It bums me out that we won't have pizza night and order from Papa John's or Dominos. And I ache a little inside at the thought that he won't know what it's like to go to the donut shop in his pjs on a Saturday morning with dad. I know it's just food but food is such a huge part of our society. In happy times, you celebrate with food. In sad times, you share a meal with friends. In all the other times in life, you enjoy food with loved ones. Going out to eat as a family won't be a fun, relaxing outing and that makes me hurt.
4. Food allergies are not minor
Just because your son's best friend's cousin was "allergic" to dairy and never had anything happen except an upset stomach, doesn't mean all food allergy reactions are like that. Brayden has an epi-pen. It has to be assumed that people who have epi-pens have severe allergies that could send them into an unconscious state which would require emergency treatment and medical personnel if they ever came in contact with one of their allergens. I am so thankful that we have yet to experience anaphylaxis. The worst that Brayden has had to deal with so far is his tiny body covered in hives, itchy bleeding skin and puffy red eyes. It's not pretty and I'm sure it's uncomfortable but so far he hasn't had a super severe reaction. He also has never had even a bite of egg or peanut butter. But the fact that he has never experienced anaphylaxis doesn't mean that the possibility isn't there. In fact, according to his numbers on his food allergy tests, he is a prime candidate for anaphylaxis. He is off the charts for dairy and peanuts (they only test up to a certain number and he was above the number they stop testing) and his numbers for egg and tree nuts are so high that they are considered severe as well. I've had people tell me, "Oh, just one bite won't hurt" but actually yes, one bite could hurt him. You would be surprised by the hives that form after receiving a kiss from mommy after she had just eaten cereal with milk (yes, this actually happened). In fact, the first reaction that caused us to get him checked for food allergies came from just one tiny bite (really, just one noodle) of mac and cheese. Food allergies are very serious. Please don't downplay the struggles my son faces, it could cost him his life.
5. I am thankful for supportive, compassionate people
I can't even begin to describe the feelings that come when someone else tries to relate to our struggle with Brayden's food allergies. When someone finds a recipe that fits our bill and shares it with me, I'm thankful. When someone asks how Brayden is doing after a reaction, I notice and I'm thankful for your concern. When we celebrate small victories like finding a new restaurant that Brayden can eat the food from, a new recipe that was a success, or one more day that he was kept safe, I appreciate all of you who celebrate right along with us. Brayden has wonderful teachers at school who make sure to keep him safe. I am very thankful for that. This journey is lonely sometimes. It's lonely when no one really "gets it" and when you don't have many people to relate to and bounce things back and forth with, but the people out there who try to understand, try to help, and try to encourage mean so much. All of this to say, I also notice the not so kind, not so supportive, not so compassionate people who make me feel like my child is a burden. And you, my friend(s), are on my naughty list. It's one thing for someone to get under your skin but when someone is tacky about your child, that's a whole different ballgame, Amen?
Being a mom to a child with food allergies has made me see other parent's struggles with their children in a whole new light. No one knows what another mom or dad is facing with their child. As parents we are all struggling with something relating to our kids and that something is a big deal to whoever it is affecting. I have learned so much about just showing grace and compassion to what others may be going through. Even if I don't understand it, I can be supportive. I know a lot of people don't understand all of the details involving food allergies and that's okay. I don't expect you to. But showing compassion and support in our struggle is heartwarming, Being aware and careful when you are around my child, is extremely comforting. While food allergies are scary and they are challenging, they don't have to be a death sentence. Food allergies are manageable and with help from others we can keep Brayden (and all of the other children with food allergies) safe and happy. There are so many people with major heartaches, hardships and struggles in life. I am often reminded how blessed we are to have a healthy, happy little boy who is developing like any other toddler his age. Now that's something to be thankful for.
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