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I have always been nocturnal. I am sure I was born that way. Early mornings have been a life time struggle for me and as time wears on it just gets worse and worse.

These days I am often greeted with nausea like you can’t imagine and painful cramps in my stomach. After I work through those, I just feel incredibly weak and tired.

No, I am not pregnant. Just sick. Someday, I’ll tell ya about it.

Getting Ethan ready and on the bus on time along with the typical morning chaos is about more than I can cope with. He takes so long to wake up and requires a bath and getting dressed, strapping in him in his wheel chair, and getting him out the door. It seems easy, but it is not.

He is getting bigger and heavier and taller and harder to manage. His fingernails grow at a fierce rate and I swear no mater what I do, I can’t keep them trimmed. Bathing is tough too. I realize I am complaining, again. Just ignore that part of my whiney post. (The Bozark suggested to me earlier today to call the Waaaaambulence…)

We have talked and talked, the Bozark and I about doing something to stunt his growth and doing something medically to him to keep him from getting much bigger. It is one of the most controversial things out there. I would love to have input on what everyone thinks.

There are so many questions. What if’s and how comes. But what it most adds up too is this. Ethan is never going to be capable of making his own choices and decisions. Ethan will never be able to communicate his dreams or his desires, we don’t even know if he has the capability of having them. He is an amazing kid and has done so much more than we ever though he would. Yet… what if.

What if someday we actually learn something about the brain? What if there is some amazing piece of medical technology that comes out that can fix brain damage? What if they can replace the optic nerve, and figure out a way for a brain to get oxygen to it, where before it did not.

What if we think he can’t, but someday he can.

Then where will we be?

When does what is easiest for us, infringe on his rights? What about his personal rights?

But, what if…he is like he is now, forever. What will he look like and how will he physically feel, if he is rolling around on my floor at the age of 45, sucking on a bottle, wearing a diaper. What about his back, will it ache? Ethan already has muscle cramps that cause him to scream out in terror. What will he be like then?

As I stumble around, through the day my thoughts are consumed with all of these questions.

I sure do wish I had some answers.

I’ve been hearing this song, at various places, and it has caused me to pause and reflect.

I do remember falling in love with the Bozark. I remember the first time, we uttered the phrase to each other. I was older, and had lived a little, and I thought I knew all there was to know about love, romance and relationships.

The first big argument we had when I was all upset and mad, he showed me, what love was really about. Forgiveness. And, I thought I loved him then.

Through the years, and trials, hardships, laughter, adventures, and goodships, those experiences showed me a deeper understanding of love, and something grew with in me and once again, I thought, so this is it, this is what “love” is.

Carrying his child and feeling that maternal bond with him yet again gave me a deeper look into existence, and the cultivation of respect and a renewed responsibility to our relationship was formed. I looked across the operating table at him, he stood there never wavering, held my hand, and our journey on another road began. I didn’t think, our relationship could grow any more close or the bond any stronger, and I thought, I loved him then.

The days and weeks passed and our new journey changed our lives forever. Yet, across the room I watch him, holding his son, our amazing gift, as he laughs and talks with him, and I think, wow. The feelings from yesteryear, can’t compare to how I feel now.

I keep thinking, I have reached the end. That life’s experiences have allowed me to grow to a certain expectancy and yet the more we travel, the wider the capability for affection and love grows. The deeper, comprehension often takes me by surprise and I am amazed. Life’s pathways, the sweeping canyons and vistas have provided me with a stunning connection that still mystifies me.

It never occurred to me, as I started out on life’s adventure that there was more than what I already thought I felt. I’ve learned that love can be unconditional, it can be work, it can be hard… but, it is so worth it.

And, I thought I loved him then…