Sunday, November 3, 2013

The Spirit of Change--365 days and it's a wrap!

 The single most popular statement of observation Food Allergy (FA) parents hear is how hard it is for others to understand our predicament. That's a prickly feeling to hear to be honest. Probably because FA parents live and breath food allergy thoughts around the clock, so it becomes unfathomable to think others haven't given them a single one. It seems absurd that with peanut-free schools and planes, and with growing story-lines about anaphylactic reactions to food in the news, that this is just a completely foreign conversation, or that the mind has never wandered there. A problem for just us FA parents alone to be concerned with? That we need to understand why others don't give it a thought or bother to care, however, it's irrational that we expect that they do care? That as a nation we're more concerned that our children have freedom of food choices than safety of foods and food labeling. Ignoring that the cause of this growing food allergy epidemic is still unknown, and that this could have affected your child as much as it did mine. It could affect your next child, or your grandchild, or neice or nephew. Any and all of which would drastically affect your life by the changes you would HAVE to make if you wanted to be around these family members. Well, it's your moral obligation to humanity to do the bare minimum of at least trying to understand. Instead of being clueless at least be interested to learn. We aren't moving mountains, we're making intentional efforts to keep children safe. It kind of makes the population unwilling to change pretty unbelievable and terribly selfish.

The other day I took my daughter to her dance class and had my one year old in tote. It takes mad skills to keep a close eye on my touch allergic child in dance, and maintain my wild youngest one. I brought my bag of tricks with toys we only see once in a while and snacks. Because we maintain a dairy-free lifestyle I am always trying to find healthy, wholesome snacks. I found these mini serving sized peanut butters and sliced some apples for a sweet treat. It occurred to me when I was getting ready to offer the snack to my youngest that someone could have a peanut allergy. I passed the question around the waiting room and all of the mom's agreed that no one there had this allergy- so I fed this to my daughter. The conversation then came up about someone who has a peanut allergy in their daughter's classroom and how hard it is for her kid to be in class with this allergy. Some other Mom chimed in about how severe peanut allergies are and brought up the recent death in California. The conversation quickly became about the inconvenience of food allergies to others. I realized that, in that moment,  I was witnessing the true feelings of people outside the FA lifestyle. When people who know our situation talk to me they usually know that we live with a severe, anaphylactic milk allergy, and true feelings and intentions are masked with sympathy and right answers. I found it shocking and interesting to see how careless people can be in the raw form. It really reminded me why I pass trust around so sparingly.

This isn't a terminal long-term illness. This can be terminal in a matter of minutes, OR our kids can can live a long, beautiful, and full life. There is hope for our kids. All of which depends on who they get stuck to be around and if they learn to communicate their needs well, and identify the invisible and seen suspects of milk and other allergens. I revealed our situation to the other Mom's and explained my daughter's milk allergy as comparable to a peanut allergy in severity, because it is, and because people tend to understand that better about peanuts and not milk. A question and answer period followed then an awkward silence. It's frustrating because people want to understand just enough to appease the conversation, but not enough to put away the bag of Goldfish. Children with life threatening food allergies have to learn to communicate and advocate their needs well--well enough to demand others stop things that could be life threatening to them. As their parents, we have to lead by example to empower them to take control of their allergy, not apologize for the inconvenience of it to others. Sometimes being vague and silent is way easier, but that's where the trickle effect of this food allergy becomes a direct part of FA parents lives. We don't just manage and plan things, we're in the background talking, teaching, and advocating and being ridiculed in other ways (like when I demanded that Mom lose the Goldfish, and it wasn't received well.)  I've learned that my daughter is a precious gift that was placed in my arms. Arms that are connected to the same person that is head strong and determined and very vocal. We're all connected for reasons. God didn't give her to a shy and timid mother. He gave her to me and I have a lot to say for her well-being.

As FA parents we spend the majority of our time planning and organizing safe, wholesome, educational fun for our kids. Keeping our kids safe AND exposing them to the world around them so they can find their way, and learn how to interact with others safely. They need to find where they fit in because they DO! Part of parenting is teaching perspectives and I won't let this allergy be a crutch she  leans on, instead, I want her to realize how to be stronger because of it. Someday she will face all of this scrutiny for herself and she really will have to be stronger because of it. She has to know more and think more thoroughly than the average 4-year-old,  and will maintain this responsibility throughout her life. We spend a great deal of time explaining ourselves and our choices repeatedly-- even at strangers requests as if we're some sort of side show. We do this anyway with a sense of hope that maybe we are getting through to people. The more people who know the sensitive needs of our children, the more our kids are blanketed in safety. Or so we can hope.

My family's situation is a constant struggle with the invisible in our environments to the point where sometimes the things that are visible become a target to rest all blame on. Anywhere we find ignorance or evasiveness regarding food allergies, and we instantly become assertive and educationally proactive. It isn't always received well because somewhere in the minds of perception people draw a fine line between compassion and personal gain. When we perceive people being evasive or unwilling to change anything that could make our daughter get to experience the little things others take for granted, it literally can change my whole outlook toward them in an instant. This can make us feel defensive of our precious cargo. Here's some perspective: We have a 4-year-old who experiences the world with her skin constantly being wiped clean from life. Her own outlook is already quite different from a typical child. Precautions are always being taken and so she views her environments based on places that have made her have allergic reactions vs. the extra steps it takes to do the same things other kids do like wearing her "allergy" leggings (when she clearly doesn't want to). She relies on the simple, natural settings like the beach or picnics in a field (where she can feel carefree) for fun, instead of public kid-friendly entertainment. All of which is deduced in her mind as making her different.

Why is she different? I'm asked this question at least a couple of times a week by her. I try to be consistent with my answers. I want her to feel special in a unique sort of way, emphasizing how her differences bring people together with intentional love and compassion. Why are any of us different and all of us different. Why are we all circling each other with all of our differences, and in what relation are they to our spiritual purpose? Finding your way through the daily life of living with a life threatening food allergy can lead you into despair and isolation, or you can let it strengthen your faith and your family. It's, in many ways, very similar to our faith in God. Everyday we're reminded of our mortality. Some people wait until their death bed to accept God into their heart and look to Him for guidance. We think of it daily, even often daily. There are so many things that are present everywhere ( like milk proteins) that are very much there, but we can't see them. We have to use the minds God gave us and believe with our given wisdom that they're there. Sometimes, we have to have a little faith in others that they will participate in keeping our little girl safe. She is a child of God after all and it's hard to imagine other's not viewing her needs in that way. While this may seem a bit deep, it's a revolving thought for me as a FA parent and no deeper than the microscopic milk protein detective that I am 24/7.

I place a very high value on emotions and feelings because these are what cause our actions and prompt change. Why do some people have more challenges or obstacles to overcome? It has to be about the emotional journey these events put your spirit through and the help you provide to the growth of other spirits. All of which to provide growth and purpose and to leave this world better than we came into it. Clearly her allergy is her greatest obstacle, and her differences give her a great platform to express and teach others things like compassion. She has such a big purpose! That kind of reasoning provides comfort and peace to me for some reason. I'm not trying to change anybody from doing what they would normally do. I'm just trying to teach them how their behavior affects so much more than just themselves so that they can, in good conscience, make informed choices.

People can modify behavior when being around us, or give us a heads up when something is not safe and we need to leave or not come near. This communication has its own interpersonal dynamics. Some people can't see the message because they get caught up in the nitty gritty details and want to argue everything. Some people don't like being the receiver of the message because they only like to be the sender. This creates a lot of awkward moments, weird relationships, elephants in the room, etc. It changes and shapes every relationship in your life and this is the trickle effect of food allergies. It's essentially the Food Allergy parent effect. What we end up with is authenticity and compassion from others, or nothing at all. There is no room for gray area anywhere. Every relationship in our lives is tugged at and reevaluated constantly. Some people shine through and others become a safety hazard. It isn't about judgement of character, it's about making safe, sound decisions for our children's well-being-- and that trumps every other relationship dynamic. This is where I say that we take this allergy on as a family. That if one can't go we all don't go because in our world peace of mind comes at a cost. It's rewarding and powerful being a FA parent because it cements your family with faith and trust in one another. It's amazing what love can do. It gives you the determination to fight for what is right. It gives you peace to fall asleep at night. It gives you confidence to speak up and make sure you're heard.

My 365 days have come to an end. I've been an open book and shared the struggles and the emotional triumphs of being a FA mom. I may have come off harsh at times, but it's been authentic and real. If you know me at all by now you'll know that's just the way I am. I've met so many other parents and had so much feedback and for that I am so thankful. I wanted to run this blog for a year to watch our own growth and looking back I am astounded with myself and my own growth. This blog has been like a diary and I have charted the mental progression of one parent living under the enormous stress placed on FA parents. Moving forward I'll do that on my own, but I have started a new lifestyle blog called Dairy-Free Darlings. This blog will continue the practical applications of living dairy-free. This blog will focus on dairy-free fun, recipes, and relevant dairy-free topics and insights. Please continue the journey with me there.

Thank-you all for being open to hearing the voice in my head. I speak for someone who can't do it for herself yet.
~Mama Lisa

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