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May 8, 2013

Different is Perfect. {A post about removing the voice of negativity.}

The past few weeks have been filled with some situations that are difficult for me to understand, and even more difficult conversations. While I won't go into great detail in this post, I want to describe a little bit of the happenings recently. Personally, I know that if we keep our troubles inside, they fester and become even bigger issues. I also know that by sharing our experiences, we share knowledge and education.

I try to be open-minded in all the facets of my life. By nature, I expect others to do the same. But that isn't always the case. If you have food allergies or are the parent of a child with food allergies, I'm sure you may have experienced some push-back from people who just don't understand your situation. Even though managing a life-threatening food allergy has been my life for almost four years, I have been blessed to encounter very open-minded, caring people. (I even wrote a post about this not long ago...)

Although I felt as though I had provided a vast array of resources and information, the past few weeks have shown me that even when we think it is "enough," it is never really enough.

One day last week, I noticed something that may have been there for months or longer. Something most people probably wouldn't think to look at. I surely didn't think about it, I just happened to stumble upon it. And when I did, I reacted. Maybe it was warranted, maybe it wasn't. I brought it to the attention of the necessary people and tried (in my own way) to explain why it wasn't okay. I tried to provide more education and resources. I tried to open the lines of communication as best I could, in spite of my state of frustration. I tried to change the way I relay information and remember that not everyone has the same level of experience with this. I can't honestly say that I didn't come across as being demanding. (I probably did, although it wasn't my intention.)

As a parent, it is our job, our calling, to advocate for our children. Whether they have specific challenges in their lives (physical, mental, emotional) or not, or even just food allergies. You see, I believe with every fiber of my being that my son is EXACTLY the person God intended. He is my miracle. My reason for living. He is what my heart beats for every day. And his allergy is a part of him.

When I tell people he has a food allergy, they ask all kinds of questions, from "Will he outgrow it?" to "What does he even eat?" Then there are the comments, "Wow, you should just put him in a bubble!" Or this week's favorite, "You could just home school him."  I understand... I really do. If you don't live with it, day in and day out, I can't and don't expect you to know all the ins and outs.

But do you know how hard it is to not take offense to those questions and comments at times? It is HARD. Not everyone will read into this comment the same connotations I did. Not everyone will take offense to it, or even understand why I did.

I responded by stating (as calmly as I could), "He deserves the same level of education as each and every other child, regardless of what he is allergic to. It would be absolutely no different than if he were in a wheelchair, or had a learning disability. "

His allergy, while it is a hidden disability, is manageable. Our situation could be much more challenging than it is. Thankfully, there are laws in place to protect people from the discrimination that would otherwise run rampant.

I've spent hours upon hours this week contemplating whether my reaction to this comment was justified or not. I've spent countless minutes standing in the doorway of my son's bedroom, watching him sleep, just wondering....

During one of those moments, I finally had a moment of clarity. I will not give the negativity the voice it wants. I will not dwell on the frustration. I will move on and focus on the positive.

First, this post is my apology... to anyone in my life whom I have ever offended with my comments, my lack of understanding, my lack of sincerity. Sometimes we don't realize how much we hurt other people with our words, our looks and our judgments...even when it may be completely unintentional. Until someone hurts us. I am truly sorry.

Second, this is a suggestion... if you know someone who may be struggling with an issue, someone who may be managing a disability, advocating for their family, or just trying to make it through this whirlwind we call life, THINK. Think about what you say and how they may perceive it. Be supportive, be helpful, be thoughtful. Maybe they are just a second away from bursting into tears from the pressure of it all. As a mom, what I want most is support.

I don't know if my son will outgrow his allergies or not. Frankly, it doesn't really matter. It's an intangible thing that I won't know how to handle unless/until it happens. His diet is diverse and healthy and great. More so than it would be otherwise. I would love to see a day when no one has to "manage" food allergies. But until then, this is our life. This is my son. Allergies and all. He is absolutely perfect, just the way he is. 

For now, I will advocate for my son as if his life depends on it. Because it does. I will teach him to advocate for himself. I will do everything in my power to teach him to be strong, supportive, kind, helpful, understanding, open-minded, and careful with his words.

When he is old enough to understand that he is "different" than other kids, I will teach him that EVERYONE is different and it is normal. When he feels singled out or excluded, I will teach him to stand proud of who he is and use this platform for good. To share his thoughts and feelings and his life with others, so that they may also learn that it is okay to be different. And different is perfect.

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