Walk a Mile in My Shoes or… Not?
It has been said many times, “No one understands what severe food allergies are like until they experience it themselves.” But, I think it’s more accurate to say that those who don’t understand is because they don’t want to experience it or ever care to. That may seem harsh or mean but if someone cared enough to understand the painful reality of someone else’s path then they would try.
When my daughter was diagnosed with life threatening food allergies I was prepared to do what was necessary to keep her healthy and safe. What I wasn’t prepared for was the amount of negativity, judgment and asses out there that would, for whatever reason, had to fling their nasty word poo at us like angry entitled monkeys.
That visual? Freaking priceless.
Thankfully, but unfortunately I suppose, I grew up with tough skin and learned at a young age how to deal with people who just like to be mean and feel entitled. It wasn’t something I expected to use to defend my infant, toddler and now ten year old daughter.
I’ve had minor food allergies and eczema since I was a kid and watched my brother, cousins and relatives deal with similar my entire life. At that time, I thought that defined what food allergies were because that was the extend of my experience. No one had life threatening food allergies in my family and I hadn’t heard of an EpiPen until my daughter was a month old. No one I knew could possibly die from anaphylaxis shock if they ate the wrong food… everyone just got uncomfortable when they ate something they shouldn’t have and benadryl fixed it.
So, I get the not understanding something when you don’t experience it first hand. But, is that a valid reason or just an empty excuse to just not care? And regardless of the not knowing or not understanding… why are some people so vile? Why can’t they just be cool or leave it be?
These are not the shoes you expected but you learn to walk in the just the same…
When your life goes from having a vague understanding of something to living the truth of it, everything changes and you don’t usually have time to try to adjust. I wish my daughter did not have the hurdles she constantly faces but it has become a source of strength, resources, humor (we have to laugh about it) and inspiration…
It also became a source of WTF moments and frustrations when it comes to other people and their opinions.
Changing our diet and lifestyle so that it was safe for her seemed like a logical step. Certain foods can kill her so keep those foods away. Simple for us, however, a source of annoyance, judgment and anger for others.
Some of you may be wondering why my daughter’s food allergies are a source of negativity for anyone? Well, I’m still trying to figure that out and I probably won’t ever understand it completely.
I spent many years being angry and resentful towards others who were so wrapped up in their own selfish worlds that they could not have sympathy or compassion for a girl who could die from their death cupcakes. I just accept it now. Okay, I accept it, shake my head and want to shake them but I won’t waste my time on them. No one will listen to what I have to say if they aren’t even willing to hear something other than their own voice.
I won’t just take it from them and I won’t stop advocating for my kids. I have just reached a point where I accept that some people just do not get it or do not want to. This holds true with most topics for people on opposing points of views but to prevent me from getting ranty I will just stay on point with the food allergy thing.
Did you really just say that?!
I have heard ridiculous accusations since becoming a mother of a kid who has life threatening food allergies. I never pretend to be coy in these matters and I’m sure I could handle things better. If someone has the nerve to press my mama bear buttons when it comes to my children or the people I love there is little room to backtrack. On the other hand I do have a deep, yet annoying, understanding that some people just don’t get it and I try to educate rather than berate.
I’ve mentioned on twitter and facebook some of the insanity that people have said and was shocked at how many of my ninjas were shocked at anyone saying these things. It’s become such a sad expected response that when it’s not an issue I’m pleasantly surprised.
So, I decided to make a little list. I’m not going to go into details on who said it or what I said… just some internal monologue for kicks. Yes, these things have been said to me or about us and many of which were said more than once.
People are so rad.
“There is no such thing as food allergies” – Yes, no such thing. There also isn’t a clue in your pea-head.
“No one can die from food allergies” – Absolutely, tell that to the grieving parents, widows and siblings who have lost someone to anaphylaxis shock.
“What did you do when you were pregnant to make her like this” – All I can say to this is that the visuals inside my head were like a scene from Matrix, Game of Thrones and Dragonball Z combined.
“You just need to toughen her up with the food she is allergic to and give her more of it” – Nothing says ‘toughening up’ like angioedema, urticaria and anaphylaxis. People who claim this toughening up nonsense never know what those three words mean and that always proves my point.
“She is making it up for attention” - … What is wrong with people?
“How do you deal with it?” – This one isn’t so bad depending on the situation but I felt it should be mentioned. How do you deal with a child who doesn’t want to go to sleep? A picky eater? A cold? A sudden change of plans? A restaurant not serving your favorite meal anymore? You just do and some handle it better than others. I don’t handle everything the best that I could but I try damn hard to.
“It’s not fair to XYZ to have to go without these things because of her” – Apply this to me, siblings, my family, her classmates… It is said or implied many ways and often. Sometimes it’s much more pointed and accusatory while others it’s honestly innocent or purposely passive aggressive. When it comes down to it, I feel, the priority goes to the person who could lose their LIFE over a decision where others could just be inconvenienced. If it wasn’t my kid who was teetering on that death line the answer would still be the same. Life is always more important than inconvenience.
“Why would you want to have more children who could end up like her?” – I’ve never gotten over this one and probably never will. I hope all my children and the children in our lives “end up like her”. She is kind, strong, funny, social, outgoing, polite and a bit insane (in a good way). Sure, she can be lazy, argumentative, bold and tries to go against me at times… because she is a ten year old going on diva. My daughter isn’t “the allergy kid” or “the one with the autoimmune disease” and never “the sick kid”… she is just my kid. I love her endlessly and unconditionally and when she damages my calm I want to rip my hair out just the same. Yes, it had and has crossed my mind many times what the roll of the dice could be if I had another and I just look at my son who has mild food allergies, mild asthma and mild insanity. He is insane because of his personality not because of an illness. I could have another who could be in his shoes, hers, neither or worse. Regardless, does that mean I shouldn’t raise amazing people or expand my family because there might be a health hurdle or two? If so then how come these same people with that judgmental tone aren’t evaluating their genetic lines and choosing not to breed because of a possible genetic issue? If I birthed another child who had the same, or worse, health hurdles as my ten year old princess of doom, then, we would simply be more prepared. If I knew everything I did then, that I know now, I would have saved myself a lot of sleepless night, tears and gray hairs.
“Don’t you miss (insert food allergen here)” – I would miss her more.
“Isn’t it hard that she isn’t a normal kid?” – If you look at her grades, the mess she tries to hide in her closet, her collection of knick knacks and the music she insists on torturing me with then yes, she is exactly like every other kid. If you look at her health records, diet, supplements and medication then no… I guess not. When she was an infant everyone thought it would be too hard to travel with her. We have been to or through half the states in the US. It was assumed she would not be able to go to school, participate in activities or have a ‘normal’ social life… well, she goes to school (not without hurdles), she is involved in whatever activities she wants (yes, I have to manage, lead or be active in the most of the time) and she has more awesome friends than we are able to juggle on her social calendar. She is a normal kid with some extra stuff thrown in.
Damn them all! Or Damn the Man and Save the Empire!
I could talk to every judgmental, opinionated or downright malicious person who has ever uttered a word of judgment on my daughter or I and explain, in detail, with doctor’s records and proof of everything we go through… but it wouldn’t make a difference. Yes, it’s draining and it sucks to have to deal with so much of it. It hurts, it damages and it causes massive problems. I can’t change the fact that those people will always be there. Some may stop their negativity but there will always be more.
All I can do, and all I can teach her to do, is accept that there are people who will support, understand and accept her and there are those that won’t. We can’t change those that won’t because they don’t want to be anything other than righteous and set in their ways… and that is fine. Let them be. No matter how much proof, struggles or inspiring moments someone won’t see the truth of it if they don’t want to. We can’t waste our time on people who, in the end, won’t reciprocate positives in our lives and only weigh us down. We have to accept them and move forward.
There are exceptions to the rules, of course, and my blog has been a seed for that growth. I’ve had countless emails and messages from those that have been changed or inspired because of what we share and those are moments I absolutely relish.
And on the other hand I have had my fair share of flaming, anger, drama and weirdness. Eh, I prefer to delete those and look at the awesomeness… and yes, sometimes laugh at it. Okay, I laugh at the ridiculousness a lot and make fun of it with my friends. It’s how I deal with things… and it makes me laugh.
I would rather be laughing than fighting pointless battles in a pissing contest of who is right and who is a jackass. I also want my kids to learn to let those things go and be happy no matter what. I will come in and lay a can of whoop ass on the table if I need to in order to protect my kids… but the small battles? It’s just not worth the energy spent. They can either choose to accept and be a positive part of things or kick rocks.
If you find yourself dealing with similar situations, and not just with food allergies, with anything. Just remember, your life is your choice and no one can control that. They can try, but in the end, how you deal with every situation and how you resolve them are up to you. There is a lot of negativity, judgment and jerks in the world and nothing will change that. Just sidestep it, don’t get sucked in. Let it roll off your shoulders the best you can and keep moving forward to find your happiness because it won’t be defined by someone else’s bitterness or judgments.
Even I lose sight of that sometimes and get weighed down by it. Then, I need a reality check and a kick in the ass and remember that life truly is too short to be miserable. I’d rather be laughing, making the most of it and getting through it.
About Leila DontSpeakWhinese
Leila, aka The Ninja, is the advocate for all things not whining. Parenting is fun when everyone stops b*tching! She is the Mom of a big blended family of four awesome kids. They ninja kick through life together. Oh and she is a total jackass.