Take with me a journey, she beckoned. Alas it be one that I did not know. Come along on this journey, she then promised. For all you need to seeI will indeed to you, someday show.

D.L Clarke

Introduction

I can still hear Dwight Yoakam’s song “Fast As You” playing on my radio when I think back and allow myself to take an emotional dive into the depths of some of the most difficult nights I ever experienced as a mother. When I think back and recall that song in my head, I feel instantly horrible and terribly guilty. I can see myself rocking my daughter deep into the night trying to comfort her to no avail, questions flooding my weary mind. After laying down in my bed for what seemed the millionth time that night, listening to that song blaring, and I mean blaring, on my bedside radio, I realized that I was dealing with something I neither understood nor had answers to. I also realized that I had no choice but to find the answers and understand them. All along, I had believed that I was the one in control. As if the choice was there right in front of me and I just had to decide whether I wanted to dig to find answers to the questions, or not. But, as I laid there and continued to turn the knob on my radio higher and higher trying to drown out the sounds of my eleven month old daughter screaming for the fourth night in a row, I knew that I was not in control of anything. Everything seemed to be spiraling into a dizzy abyss of confusion. What was wrong with my daughter? Why did she seem so miserable most of the time? And, what caused her to stop talking or responding to me for hours at a time? Why wouldn’t she sleep? How come she didn’t laugh and play like other children her age? What was making her so angry? Why couldn’t anyone but me hold her? I was out of ideas, strength and sadly, patience. I was completely exhausted and running on empty. All I wanted and needed right then was to know what was wrong with her so I could help her. But, unfortunately, the only comfort I found that night was in that damned country song that just happened to be yelling louder than what she was at the moment. Who knew that that night would come back to haunt me later? Had I known then what was wrong with her, I would never had left her side. I wouldn’t have had a need for that blaring radio. I should have listened to what my heart and nagging stomach was trying to tell me. I should have held her all night, even though it seemed to be providing no apparent comfort. Who knew I would feel so guilty later for doing the best I could for her at the time. Who knew that it would take over a hundred medical professionals and therapist three and a half years to start putting understanding to the questions that as a mother, I could not answer that night. You’ve got to be stronger, do not give in, But, when did the strength weakenAnd the weakness begin? D.L. Clarke Chapter 1 I love thinking back to the warm and beautiful day in July of 1992 at the hospital in Lemoore, California when my second daughter, Aubrey, was born. She was perfect. Her eyes were deep blue and they were accented by the longest lashes I had ever seen on a baby. Her hair was bright strawberry blonde and her skin was perfectly pink. She had all of her fingers and toes, and a little port wine birthmark on her upper lip. We immediately fell in love with her; our little Aubrey. It had been an incredible day filled with anticipation, joy, and thankfulness. I also remember the cold and rainy day in Washington eighteen months later when her pediatrician informed me that I really should ‘for the sake of the family’ put her in a children’s mental institution. I remember listening through a dark cloud of emotion and disbelief as he proceeded to recommend that I accept, right then, that my daughter was different than other children. He explained that I should never expect her to laugh and play like other children, dance or become a little ballerina. He tried to convince me that she would never communicate normally and would be very unsuccessful and frustrating if she were to attend a “normal” school. He did mention, however, that she would eventually succeed in destroying the family. I then heard him calmly continue, explaining that I could not possibly have the skills or knowledge needed in order to raise such a child. He then stated matter-of-factly that even if I attempted to, it would just end up causing great distress both physically and mentally to myself and the rest of the family. I remember the rage I felt and the confusion and disbelief of what I was hearing. I remember seeing the physician’s mouth moving with words I could not comprehend. I remember the feeling of the room spinning and the lights fading in and out as the mono-toned doctor continued to speak in a language I could not understand. I remember feeling Aubrey’s body squirming on my lap as she tried to get down for the hundredth time without success. I had been warned that I needed to ‘control my child’ or she would need to leave. I guessed that that had meant that I would need to leave too, so I let her squirm as I sweated and tried to somewhat ‘control’ her. I wanted to leave, no, more like bolt for the door. Something washed over me and before I realized, it had consumed me. It was like a giant nauseating wave of despair that I seemed to have no control over. Attempts to rationalize the situation didn’t help. My body swayed in the emotional waves it had created and my mind fell idle of thought. Mental numbness then took its turn and I welcomed the sanctity for the moment it gave. I could feel my eyes welling up with tears. It felt as if I were about to dive into a heavy fog laden abyss with no escape. I needed clarity and it appeared that none was going to be available. Sudden, immense depression gripped me tightly, allowing my hands to fall from Aubrey’s little waist. Aubrey then successfully hopped from my lap and proceeded to stomp her way over to the door and pound her fists into it. I had just been told that there was nothing anyone could to help my daughter, and if I wanted to do ‘the right thing’ I should take her to someone that could find a good placement for her. They would know how to help her, possibly. I was apparently being deemed useless by the professionals. Wasn’t I supposed to have all the answers? Wasn’t I meant to be the person that knew her child more than anyone else and know what was best? What had I done wrong? Aubrey did have some good days and I would be encouraged to the point that I would think I had been reading too much into some of the previously displayed oddities. She could play with her toys and seemed interested in television. I would hear her babbling to herself or to her books. There were days that she went without having the steady flow of tantrums and she would even take her naps without fussing. So, what was it then? Why would all of that switch and suddenly the bad days would start again? On the dark days, she seemed completely miserable. She would cry constantly and there were raging tantrums several times that would last for hours. She hated to be held and wouldn’t play with her toys. Even the softest of foods would gag her. When she did eat anything that left her hands sticky, she would scream and look at her hands and cry until I could remedy the offending stickiness. Bath times were a nightmare as she hated having her head touched. No matter how careful I was to avoid her eyes and ears, the second I started to even lightly touch her scalp, she would squirm in the tub and scream as if she was in tremendous pain. The mystery was impenetrable to me at the moment and the doubts bounced around in my head as the doctor droned on. My neighbors had persistently informed me that I was being too protective over Aubrey and I needed to be ‘tougher’ and just let her cry. Was I shielding her too much? But, I had let her cry, to the point that neither Aubrey nor I could handle another sob. Did they really know what it was like to experience their child screaming into the deepest hours of the night, every night? It was within those late night hours that the doubts crashed in and overtook what little confidence I still possessed. Maybe it had been too long since I had had my first daughter, Brittney. Five years was a long stretch between children; perhaps I was just out of practice? Maybe I had just forgotten how to be a mom? Perhaps all I needed was just a little bit more time, a tad more confidence, and maybe slightly more fortitude? Maybe then, things would be okay? My head ached and my entire body felt heavy. I knew I had to help my daughter, but I was becoming more and more aware by the minute that the doctor’s office was not the place I was going to find the answers. So, where were they? I grasped Aubrey’s tiny, little hand and we headed for home.Perhaps I hid the pain, maybe too well, behind a wide smile.But, perhaps I had too little to gainBy sharing all the turmoil. D.L Clarke Chapter 2