I pretended to accept

To Whom It May Concern:

I pretended to accept the situation I was in. But my inner rebellion continues. My common sense, my duty as a mother, all told me not to let the disaster spoil my own life or that of Jeremy's. But common sense and duty doesn't always prevail when the heart is broken. I learned how to act on the surface as much like my usual self as possible by smiling, by talking, by seeming to take an interest in what went on around me. Underneath tho, the rebellion burned, the flames easily fanned by resentment. Resentment for the situation I was in and also resenting my friends and family for not seeming to understand - when it was MY surface acting that kept me from having any real contact with people. The tears were always sooo close to the surface and I couldn't spend the rest of my life crying my eyes out. Some felt the surface was shallow, some felt the real me was going crazy, and yet others were disgusted with the cold, hard shell that made me unreachable. Yet it was necessary to maintain that shell, for it contained a cord of steel that kept me strong enough to continue on with my duties as a mother. It was not possible to share with anyone my inner state. Partly because the hurt and turmoil had no words, and partly because any attempt was easily ignored or explained away with pious platitudes.

Some admired my fortitude, my dedication, but I simply did my duty blindly. I cleaned my house and played with my children. I took care of their physical needs and sometimes managed their emotional needs. I made appointments, decorated my children's spaces, attended Bible studies, provided meals. I remember that time as being at my most organized, but many times I found the scissors in the refrigerator, or I would head down the hall to put the milk away... in the bathroom? I was a near genius at providing a stimulating environment for my handicapped baby and my 2 1/2 year old, who was sometimes restricted by our limitations brought on by Jacob's care. Limitations consisting of doctor appointments, hospital stays, therapy, and the energy/time consuming care of his baby brother. We were happy as long as we were together, and uninterrupted, but the interruptions were guaranteed. My hands did the work, my brain did the organization, and my heart did the loving. I was running on guts and instinct.

My emotions were at war. Or to be more accurate, they were on hold, trying to get out in some expressible way. I was afraid of really going crazy, or of being accused of being crazy. The aftermath of being a psychiatric patient. Physical exhaustion chose to express itself as despair, and as a great mind-consuming, body numbing apathy.

The only time I felt alive and real, were the hours I spent alone rocking each baby. First Jacob, then to bed, then Jeremy.  They would watch the dancing lights and the colored fish from the aquarium in front of us - would make me feel everything would be all right. Alone with Jacob, I could cry freely - with no one to foolishly tell me to stop crying, no one to pity me, no one to judge me or evaluate whether I was "holding up" or not. Eventually, thru the tears, I would have to smile at him and marvel at his simplicity and my love for him. It was such a complete love, pure and unconditional, uncomplicated by expectations. I could cry at his beauty, and cry for the loss of perfection for him, wishing I could somehow take it unto myself and protect him from the future, but then he would look at me, silently and still, and somehow I knew he was happy and wiser beyond me. Content. With each and every smile, something was freed within me and I was beginning to learn to take each moment as it came and not to worry about what I could not change or control. When it was Jeremy's turn, I hid the tears, so he wouldn't worry or be scared, I needed to be strong so he could trust me again, that I was really there for him.  Jeremy brought laughter back into our lives, and his sensitivity was a constant marvel to me, and to others as well.  Everyone noticed how sweet he was to Jacob, and how he loved being a big brother. 

There are no words to express the peace I felt during the time together in front of the aquarium, late at nite, in the rocking chair. During the day, I would look forward to this time, so I could just watch them. Somehow, the stillness of Jacob's paralyzed body stilled my mind from the constant swirl in my mind. But only during the nite. The stillness of his body during the day meant only constant worry.

The sorrow was inescapable. I had given him birth and he was hurt. He was my fault and my responsibility. He became my heart. His presence in my life made me realize I had to be the best I could be, simply to survive, and that would be enough. His simple "BEING" loosened my rebellious spirit, somewhat, as time went on. Enough to quit asking "why?" so constantly, but I would NEVER accept it. I could only hope that my child would never hurt because of his handicaps - physically, emotionally, and socially. I hoped that I would have the wisdom for raising such a child, and help him to grow up strong.

His handicaps shook my religious faith clear down to the very bone.

Just when I began to let it be, to love him without the rebellion and the questions, to know that we would be okay - he died. He died. Dead. Died. I don't understand and I have a feeling I never will. His presence made the struggle worth it, because of his simply serenity. Now I have to continue on with a different kind of struggle, without the reward of having him in my arms at the end of the day. I am forced to accept his death by the mere fact of his gone-ness.

But what does dead mean when he's still so much with me? Are our memories all that wonderful to have - when that's all we can have? The pain is always with me, hidden a little deeper as time marches over me, but it is always there, ready to be tapped. There is nothing to do with it.
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