After we received the news that our daughter would be leaving this hospital to go to UCLA Medical Center in a few hours, they moved me to a room out of the maternity ward and into the regular part of the hospital. I was off in this empty corner of the hospital. I wanted to think this gesture was for my benefit, but I also wondered if they just didn't want me around other new mothers because of what had occurred. Like I was separate now, different from other mothers who had given birth to "normal" babies.
People came and went during the day; friends, family, of course everyone was concerned. We told the story over and over again. What we knew of course, which wasn't much really. All the doctors knew was that her esophagus hadn't developed. She couldn't eat. Nobody said it; but the implications were clear, if she couldn't eat, she would die. Not rocket science, for sure.
Do the doctors really think she has Down Syndrome? Of course that was the burning question of the day.
We answered that we didn't know, the chromosome tests would be done at UCLA.
But let's be real; we knew. In our hearts we knew, from the moment she was born.
The only thing I wanted was to be with her. I still had not held her. I kept asking them, I want to go down in the NICU. Why are they making me stay up here? I felt a sense of urgency, a panic, a need to act. And I felt like I was being put in chains, and couldn't move. I had a sick baby, and I couldn't do anything but sit in bed.
They kept saying they were getting her ready to transport her. Could I hold her, I asked. No, she was too seriously ill to be handled by anyone but the doctors.
At last Tony, Jared, and myself were allowed into the NICU to see her. The three of us sat in front of the incubator. At last I would get a look at my child.
She was light skinned. And blond. Me, with nearly black hair, having a blond child. She was of course very tiny. She didn't necessarily look ill. To me, she looked perfect. It seems impossible she had what they say she had. I wanted to scream "you're wrong, this baby is fine." She looked fine. She looked like an angel to me.
I remember there was a light around her. Not a light being generated by medical science, but a light. It surrounded her, like a blanket. I don't think Tony saw it, or Jared. But I did. I couldn't explain it, but it was there. Some people might say it was God watching over her. Others would say it was just my imagination. But it was there.
If I had to say what it was, I would say it was a life force, an energy emanating from her. While her body was sick, she was filled with life. She had enough life in her to survive this. And even as she lay there fighting for that life, she had it in her to pull through.
But it was still heartbreaking to me. Like your bones being crushed; a pressure on your body. Like you were unable to breath, or move, or do anything. A helplessness.
So I just sat there and cried. Useless tears that could do nothing.
They took me back to the room. And we waited. We signed tons and tons of papers. I couldn't even tell you what we signed.
At last the helicopter was there. The helicopter team rolled her into the room. She was packed up and ready to go. I would look at her through glass and tubes and monitors once again.
"We'll take good care of her," a paramedic/nurse on the helicopter team tried to assure me.
I tried to smile. "I'm sure you will," I rendered my meager reply. There was nothing else to say.
Tony was going in the helicopter. He kissed me goodbye, and said he would call me.
They left, and Jared and Scott and I watched as the helicopter lifted itself from its pad, flying off into the desert, heading for Los Angeles.
After Scott and Jared left, I was alone. I felt this paralyzing emptiness. I called Tony's mother in Minnesota. I called my parents in Nevada. I tried to keep talking. It was the only thing I could do.
All the while, the nurses were coming in and out. Checking me for this. Checking me for that. They annoyed me. I didn't give a shit about myself. I didn't matter. I was fine. My esophagus worked. All my parts worked just fine. But my daughter's didn't. I didn't care about anything else.
But a certain nurse was unrelenting.
She would come in and press on my abdomen. "You haven't urinated. You must urinate," she kept saying.
"I don't have to go," I kept telling her.
"Then we put catheter in you," she articulated through her Asian accent.
Catheters are a dirty word to me. My mother had one put in after my birth 39 years ago, and it was done incorrectly, giving her a lifetime of agonizing problems.
I had just about enough of being out of control. I couldn't control what was happening to my daughter. Now I couldn't even be left alone to control my own bladder.
"You know, " I said, "No offense. But you're not putting anything in my body I don't want there. You can take your catheter and stick it up your ass."
She just stood there, looking at me. I wasn't finished.
"And you know what else," I said. "You can go call the doctor right now to come in and sign the papers to release me. I don't need to be here. I'm needed at UCLA with my husband and daughter. Get me the fuck out of here!!
She still stood there, like she didn't get it. "When you urinate," she said. "You must do it in the measuring cup, because you must go at least a few inches."
Was this woman kidding me? They were going to measure to see if I peed enough?"
I tried to maintain some semblance of calm. "Please, go, now, and get my discharge papers."
She left at last. I started to dial Scott's number. He could come back and get me out of here. Then it occurred to me. If I left, how would Tony know where I was? I had no clue where he was at UCLA, which is a huge place. He had enough problems right now without worrying about me going postal. Fine, I figured. I'll just stay and wait.
All of a sudden, I had the urge. I went in the bathroom, sat down, and peed. In the toilet bowl, not in her measuring cup.
For just a second, I smiled.
My one small victory for the day. The world hadn't gone completely topsy. I was still able to fight back.
And I would get even better at it then I realized at that very insignificant time and place. I would be fighting for this child, who had more fight in her than anyone I've ever known.
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