Post by Admin on Sept 6, 2016 22:30:59 GMT
Doubt if this would work as written but the idea is valid. Still compiling work into one place so I don't have to hunt for it later.
This morning I’m pondering the concept of ‘battles’. We all have them. At times, I feel like life is positively attacking me and I’m fighting an actual war.
Each day starts a new assault. Most of the time, I find this challenging. It energizes me to pit my skills, and assets, and strengths against whatever difficulty ‘life’ throws at me.
But once in awhile, my defenses fail and I start to sink. I hate these episodes. They wear me down and sap my will to fight. Sometimes, I think its blood sugar. As a diabetic, I test my sugar often and I suspect a direct relation between sugar ‘highs’ and ‘lows’ to mood swings. But whether that’s true or not, it doesn’t change the fact that life is a battle. And somehow, I need to learn how to fight back on a daily basis.
This leads me to think about focus and consistency. When I’m on top of things, feeling good, I fight life’s battle with strength of will that I know can’t fail. On days that I’m feeling tired, I wonder why I fight at all.
But the battles I face on a daily basis aren’t just my own. I’m looking at a battle that I intend to win. I have to.
My son, Josh, has cerebral palsy. Because of this disability, he can’t walk or talk. But locked inside a body that doesn’t do his bidding is a wonderful, bright, intelligent soul. He’s kind and full of humor.
Over the last thirty-one years we’ve tried different kinds of communication devices. All of them failed. For Christmas, he wanted an iPad. His cousin, Nita, showed him how hers worked and he got so excited. The iPad has communication apps. And a touch screen. Surely, Josh could activate the touch screen.
We’ve had the iPad about a month now. What pleases me is Josh’s determination. He is showing focus. And commitment. I can learn a lot from his work ethics. He is laboring under far greater handicaps than I am. His battles are so much bigger than the ones I face.
The iPad is not going to be the answer I hoped for. We need more. And I’ve decided that this year, I will go to war for my son. I’m going to win this battle. Somehow, somewhere, we will find a solution.
I’m going to make phone calls, get him evaluated for seating and communication. Again. He’s older now. He’s motivated. I can’t fight this war on my own. I need to surround myself with ‘experts’.
If I can’t find the answer that will help him, I’m prepared to invent, construct, adapt, or do whatever I have to in order to give my son a voice. I don’t want to leave this world without ever having ‘heard’ my son speak. I don’t want him to rely on me to be his ‘voice’. I want him to have his own. He deserves it.
That brings me back to battles. And life. And what it takes to win. It took me thirty years to figure out what I wanted to do when I ‘grew up.’ You would think being a mother, a full-time caregiver, and a wife, would keep me busy enough. But it’s not enough to live just for others. I need to live for me, too.
And I decided I wanted to be a writer. No, change that to: Have to be a writer. And the battle is fierce. I go weeks so highly motivated nothing could stop me. Then I crash, and wonder why I even bother. Then the muse starts to whisper to me. The whisper, when I ignore him, becomes a nagging voice that never shuts up until I go to the paper and put the words down.
The muse (in my head, I call him Victor. I don’t know why he comes across as male, but he does) is my caregiver. He pushes me, demands that I use my ‘voice’; shames me into looking at my son, who literally cannot express himself. How can I slack off, refuse to speak, when my son would give the world to be able to?
How little I appreciate the gift of communication if I refuse to follow through with the stories, characters, and plots that come to mind.
This is our year. For me and my son. We are going to win the communication battle. We both want to express ourselves. I didn’t realize, until I got to the end of this blog, how similar Josh’s needs and my own are. I didn’t ‘get’ the connection until I saw the words on paper. It shakes me to my core to realize I’ve been mute all this time, searching for the right ‘device’ to give me speech.
This is our year. For several weeks now, I’ve been telling Josh what I was going to do. The phone calls I was going to make. The ‘battle’ we are going to win. The Helen Reddy song, “I Am Woman, Hear me Roar” was playing in my head but I paraphrased the words and told Josh I was going after a way for him to communicate with every ounce of my being. I just didn’t realize those words were for both of us.
We are ready to be heard. This is our year. Hear us Roar.
This morning I’m pondering the concept of ‘battles’. We all have them. At times, I feel like life is positively attacking me and I’m fighting an actual war.
Each day starts a new assault. Most of the time, I find this challenging. It energizes me to pit my skills, and assets, and strengths against whatever difficulty ‘life’ throws at me.
But once in awhile, my defenses fail and I start to sink. I hate these episodes. They wear me down and sap my will to fight. Sometimes, I think its blood sugar. As a diabetic, I test my sugar often and I suspect a direct relation between sugar ‘highs’ and ‘lows’ to mood swings. But whether that’s true or not, it doesn’t change the fact that life is a battle. And somehow, I need to learn how to fight back on a daily basis.
This leads me to think about focus and consistency. When I’m on top of things, feeling good, I fight life’s battle with strength of will that I know can’t fail. On days that I’m feeling tired, I wonder why I fight at all.
But the battles I face on a daily basis aren’t just my own. I’m looking at a battle that I intend to win. I have to.
My son, Josh, has cerebral palsy. Because of this disability, he can’t walk or talk. But locked inside a body that doesn’t do his bidding is a wonderful, bright, intelligent soul. He’s kind and full of humor.
Over the last thirty-one years we’ve tried different kinds of communication devices. All of them failed. For Christmas, he wanted an iPad. His cousin, Nita, showed him how hers worked and he got so excited. The iPad has communication apps. And a touch screen. Surely, Josh could activate the touch screen.
We’ve had the iPad about a month now. What pleases me is Josh’s determination. He is showing focus. And commitment. I can learn a lot from his work ethics. He is laboring under far greater handicaps than I am. His battles are so much bigger than the ones I face.
The iPad is not going to be the answer I hoped for. We need more. And I’ve decided that this year, I will go to war for my son. I’m going to win this battle. Somehow, somewhere, we will find a solution.
I’m going to make phone calls, get him evaluated for seating and communication. Again. He’s older now. He’s motivated. I can’t fight this war on my own. I need to surround myself with ‘experts’.
If I can’t find the answer that will help him, I’m prepared to invent, construct, adapt, or do whatever I have to in order to give my son a voice. I don’t want to leave this world without ever having ‘heard’ my son speak. I don’t want him to rely on me to be his ‘voice’. I want him to have his own. He deserves it.
That brings me back to battles. And life. And what it takes to win. It took me thirty years to figure out what I wanted to do when I ‘grew up.’ You would think being a mother, a full-time caregiver, and a wife, would keep me busy enough. But it’s not enough to live just for others. I need to live for me, too.
And I decided I wanted to be a writer. No, change that to: Have to be a writer. And the battle is fierce. I go weeks so highly motivated nothing could stop me. Then I crash, and wonder why I even bother. Then the muse starts to whisper to me. The whisper, when I ignore him, becomes a nagging voice that never shuts up until I go to the paper and put the words down.
The muse (in my head, I call him Victor. I don’t know why he comes across as male, but he does) is my caregiver. He pushes me, demands that I use my ‘voice’; shames me into looking at my son, who literally cannot express himself. How can I slack off, refuse to speak, when my son would give the world to be able to?
How little I appreciate the gift of communication if I refuse to follow through with the stories, characters, and plots that come to mind.
This is our year. For me and my son. We are going to win the communication battle. We both want to express ourselves. I didn’t realize, until I got to the end of this blog, how similar Josh’s needs and my own are. I didn’t ‘get’ the connection until I saw the words on paper. It shakes me to my core to realize I’ve been mute all this time, searching for the right ‘device’ to give me speech.
This is our year. For several weeks now, I’ve been telling Josh what I was going to do. The phone calls I was going to make. The ‘battle’ we are going to win. The Helen Reddy song, “I Am Woman, Hear me Roar” was playing in my head but I paraphrased the words and told Josh I was going after a way for him to communicate with every ounce of my being. I just didn’t realize those words were for both of us.
We are ready to be heard. This is our year. Hear us Roar.