I am sitting at my computer this morning wondering how I should introduce my son, Kody. Do I start off defining him by his disability? Or open up with a cute anecdote or a story about one of his many challenges? Should I begin this dialogue discussing my own trials with Kody and how our family deals with his disability? I feel confident that at some point all of these perspectives will be addressed as my story grows in this blog. There are so many facets to having a child with special needs. It is life consuming. Everything you do or plan is pretty much filtered through this situation first. For instance, a simple task like going to church becomes an issue of strategy. What moods are we dealing with this morning? How disruptive are we going to be? Where can we sit that will give us room to wiggle and whisper the inevitable “Shhhhhhhh’s” while trying not to disturb other church goers? Are we on our way to a tantrum? Do I really want to take the electronics away as a discipline in this situation because then no one is going to get to hear the sermon?! What kind of chaotic mess am I going to look like as I try to manage his behaviors? These are just a few of the persistent questions I ask myself just for the two hours we are attending service.
I anticipate stress on some level everywhere and in everything we do. It is hectic and hard. The pressure never subsides completely; you never really relax. As a matter of fact, I just got off of the phone with him. His teacher contacted me and told me that he is having a rough morning. I use a few different strategies to address situations like this. I asked him what was wrong and he presented his case. I offered a different perspective to no avail (typical response) … he was determined that the world was against him at this point. So, we move on to the nitty gritty and discuss consequences for the choices he is making. I walk him through what will happen if he continues to make these negative choices (giving him control and accountability) which means he loses his electronic privileges, television time, will have to write sentences, and could end up with extra chores depending on how far he takes his behavior. With my gut clinched, I hang up emotionally and mentally exhausted. Even as I write this I am wondering if I got through to him and hoping that he has chosen to turn his day around.
This is how we live each day. Moment by moment, inch by inch, and mile by loving mile. He is a beautiful mess and so is his mother. Bless his heart, he did not get to choose his parents and do not get me wrong, I would not trade this child for anything. Yes, life is tough most of the time and there is a lot of stress that goes with the territory, BUT there is also joy, love, pride, and satisfaction. He has given me such purpose and continues to sharpen me (I need a lot of sharpening) and shape my character (and others lucky enough to know him) as God uses him for such a beautiful cause. I have never regretted having a child with a disability. It is what it is.
So, I want to help people understand the heart of a parent that has a child with a disability. It may sound like I am complaining when you read about our experiences but that could not be further from the truth. I share our journey with you because I want you to understand us and love us where we are at. Do not be offended if we turn down invitations at the last minute or if we do not stay long at social gatherings. We pick and choose our battles. Please do not judge us for not being socially appropriate or when we show up mismatched and with bed head. It is going to happen more often than I want it to but that is our life. Most of the time we are just happy we made it to our destination in the first place. Do not take it personally if I leave a conversation abruptly or if I look distracted when we are talking. Excuse my frantic facial gestures and over exaggerated expressions as I walk in the door. I am trying to have a sense of humor about my life and laughing at my situation is the spoon full of sugar that helps me deal with it. It is not that we need your sympathy. We need your compassion, your assistance, your acceptance, your understanding, and your Christ centered love. To those of you that do just that … thank you.
As he passed by, he saw a man blind from birth. And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.”