Battles against terminal illness, anxiety, and life!

The Void

All of us have experienced what I like to call “The Void.” It is when we say something and all we hear is silence in return. It is as if the words were said in a vacuum. Behind them they leave an empty space. Words that once took up special residence in our hearts, mind, body, and sometimes soul seem to then head into the nothingness, stripped of honor, and their significance ignored. Yet while we all experience this, it often feels as if we all stand around pretending that this isn’t happening. You know, as if by admitting that we feel lonely and sometimes unimportant that we will no longer be permitted to sit at the cool kids’ table. I say this not to point fingers or to say that this happens to one group of people more so than others. On the contrary, the point is to bring us all together.

Each and every single one of us is a complex being that comes with history. Not a soul on Earth knows or completely understands the contents or weight of the baggage we carry with us. Yet we often make the assumption that our voices will not just be heard but understood. When we throw something out there, we do so with the hopes that the troops will rally and magically they will make everything all better. In short, we look to the outside world to help heal our wounds. This isn’t wrong. We all want to feel like we belong, that we are cared about, supported, and loved. Mostly though, I believe we all seek to be understood. Yet the vulnerability that it takes to be understood is rather scary. You have to put yourself out there and that my friends is rather scary. Nobody wants to be seen as different.

Different isn’t just something our family has become, but it is something interwoven into our beings. The day B was diagnosed our family was forever changed. Every day since then has changed and shaped us into who we are now. We are learning to not just accept our differences but to own them. “Mommy, I don’t want to be different anymore!” B exclaims to me while snuggling one evening. Carefully crafting my response, I remind him that we are all different. Some of us just wear our differences a little differently. I wanted B to know that his words didn’t fall on deaf ears. The emotions and meaning behind his fears and concerns didn’t echo into The Void. “You have to learn to accept yourself just as you are,” we remind him. To share his fears with me allowed himself to be vulnerable but from that vulnerability comes strength.

As a parent of a special needs child, I often hear parents shout from the rooftops how stressed, overwhelmed, fearful, discouraged, angry, lonely, frustrated, and scared they are. Their words often land in The Void. Posts linger on Facebook with folks hitting the “Like” button in an effort to show support but not really knowing how. This leaves that parent feeling those previously mentioned emotions even more strongly. In effect they become amplified, emotions rise to the surface, and then things get just plain ugly. The Void seems to echo those emotions back to you in ten fold. There is no blame to be placed here. Rather there should be some education and vulnerability shown. First of all, we hear you. You have a life that is busy, chaotic, stressful, and your emotional bank is often overdrawn as well. So, we with those special needs kids need to remember to extend the same courtesy of supporting you when you yell out into The Void. We need to be there for you. We do not wish to judge you, compare your struggles to ours, or diminish what you are feeling. That’s the give. Then, when we send out our own SOS, please remember to send that same love back. How? Just how you wonder?

“I’m sorry this is happening. I am available to help in x, y, or z way.”  “I am available to listen any time.” Make sure you mean that. Send them a pizza. Send a random note in the mail, phone call, or text of support. Ask if they want to go out for coffee. Do something! Anything! Just don’t let the words fall into The Void. Being super duper different is tough stuff. The looks, the stares, the birthday parties you don’t get invited to, the friends your child(ren) don’t have, the lack of understanding, the frustration of not being able to do what a “typical” family can, and the list goes on and on. What we as a special needs community need to find is some common ground with you. So, talk to your children about differences and that they are ok. Teach them to reach out to other children. Explain to them what bullying looks like. Role play ways of stopping bullying of other children. Train them to not be a bully themselves and hold them accountable to that. Make your children rise up to be better people. Show them how to be inclusive. At any given point you or your child could become a member of a minority group. An accident could leave you with mental, physical, or health issues. The child you have raised and love to pieces could become a member of the LGBTQ community. They could become bullied for having glasses, being dyslexic, or any other host of issues that could cause them to be classified as “other.” So remember that none of us get out of this alive, so we better stick together!

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