Friday, October 4, 2013

Perpetuating circumstances...

Seeking out the responsible culprits causing allergic reactions is an all encompassing role as a FA parent.  When your child is touch allergic in addition to ingestion and airborne exposures the speculations are greater. I cannot count how many times my little one has had an allergic reaction to something unknown to us, leaving us to retrace every movement we've made.  Could something be on the neighbors ball that we just played together with? Could it be something in the rubber on the balloon? Maybe something on the outside of a plastic grocery bag that a grocery clerk transferred proteins to after touching others people's milk items first? Did someone wear their shoes in our home and leave residual milk proteins somewhere? Where is this invisible milk protein lingering so we can clean it or avoid it?! It's a perpetual feeling that you didn't think of "everything" and you let your child down. We really do think of things on a microscopic level, and that's what makes us "different" from non-food allergen families. We may seem a little crazy (or neurotic), but when you really think and put it into perspective, it's amazing that we have a seemingly "normal" life. And it has taken an immeasurable amount of effort to do so. This is just us doing the very best we can with the circumstances we've been given to live with.  For the most part our battle is with the invisible, so when things are blatantly visible and avoidable it's an obvious slap in the face to our judgement of being around it. We try not to take too much offense, but it's pretty offensive especially when it comes from people who "know" better.

When you live in this cyclic state of fear and scary allergic reactions, the first logical thing to do is avoid all of the obvious gray areas that put your little one at a heightened risk. Other's people homes, public shared spaces, and, eventually, the people who don't respect the situation enough to be accommodating to our child's needs. The people who "forget", or don't think her condition is serious enough to make the extra effort. When people put their wants above our child's needs, it literally just changes everything instantly, regardless of history of our relationship with them. Anybody close to you who can't get it AND support you just becomes toxic to you, because hearing everyone else's justification's for their dangerous behaviors around your child just don't matter when the bottom line is that your child could've died. It works both ways. We've definitely noticed some people just eliminate the problem of making the effort by eliminating us from the equation, and honestly I can respect that more than compromising the health of our daughter. I've said it time and time before that relationships are HARD as a food allergy parent. It's the constant Little Battles over things like "did they seriously just eat pizza then come to our home"?, Expectations of what a basic effort and understanding is, and Trust that people will be honest about what they are exposing our daughter to. All of this for the mercy of an innocent little human who asked for none of it, and relies on us to provide her with safety. Everything then revolves around how well the adults can proactively manage the responsibilities, or be written off as a dangerous risk. It really isn't about blame it's about building trust for us and for our girl, and that requires taking an unbiased look at other's efforts and actions. Blame is what happens when you put trust in others and get let down, or sick because of it in our situation.

Blame is a cop-out because it doesn't change the outcome. Our daughter still get's "sick" --according to her. The blame game is a deflection of responsibility--looking for someone else to pass the buck to. This game can continue to repeat itself over and over if we let it. The thing is that at some point everybody needs to own up and learn from it, and FA parents need to set the expectations and follow through with them, even when it means we (the parent's) feel left out or let down as well. We need everybody to take ownership of their own parts in contributing to shared environments. The truth is that I don't care if you caused the reaction as much as I care that you will take some responsibility and not make that same mistake again. Own up, pitch in, and understand that you can make a difference that could literally save a life! Somehow FA parents assume all of the responsibility and the rest of the people stand on the sidelines questioning every reaction, deflecting blame, and being overall unsupportive. At the end of everyday it's all about the perspective of my four year old and when she feels left out and scrutinized it just isn't cool.

As FA parents, we need to set the precedence of expectations and recourse measures. I have my daughter involved in some extra curricular activities that empower her and accentuate her natural talents, and I have made my reasonable expectations very clear. All of the children need to wash their hands before classes. Outrageous right? The amount of questions and bantering back and forth about why this is needed-- you would have thought that I wanted all of the kids to shave their heads! I mean really what's the concern? Your child is cleaner and mine is safer period get over it! Making me and my daughter feel weird over it and needing to disclaimer it with her food allergy and the added life threatening dialogue in front of all of the parents and children simply isn't needed. It's ignorant quite honestly and a complete character assassination to the best version of each person who succumbs to the thoughtlessness. Ignorance and rudeness bread ignorance and rudeness. Bully's raise bully's. Even though my daughter has been a victim of all of the above she is innately kind. She is forgiving and honest because she is learning that because of her differences she brings people together with intention and goodness, and we are grateful for that. My wish is that people will start to take responsibility for the little pieces that they can involving food allergies,  and every other way we can show kindness and compassion to others in a supportive environment.


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