Thursday December 4th, 2003

12/4/2003 9:41:18 AM

Today my life changed forever. I’m sure this can be said of other days, as well, though I may not have recognized it at the time.

As I continued seeing patients, I waited for the call. All day we had anxiously awaited the Ophthalmology consult, hoping Rachaeli’s eye exam would be entirely normal. Rachaeli had been in the hospital now for over a week. We still didn’t know what was causing the aspirations that led to recurrent bouts of pneumonia. The geneticist that saw her yesterday seemed concerned about a metabolic disorder. He asked about any family history of Tay-Sachs. I took comfort in the knowledge that I tested negative for Tay-Sachs years earlier, although my sister was, in fact, a carrier. While we feared the worst diagnoses imaginable, we still hoped for the best. A clean eye exam would strongly suggest that our baby did not have a metabolic storage disease; perhaps we could rule out all inborn errors of metabolism. Even that phrase is strange -- inborn “errors” -- as if God was careless or sloppy.

At 3 P.M., I was sitting in my office, counseling an adolescent female about appreciating the incredible power she has to choose her own destiny; that she truly had the capacity to “choose life”, so to speak, or, by default, choose to go on living a largely vacuous existence. When LaTisha [my receptionist] buzzed me, she insisted that the session was over. She told me I needed to call my wife. Nicole’s voice was eerily calm and emotionless. She asked if I wanted to know now or when I arrived at the hospital. The Ophthalmologist saw a bright cherry-red spot in the back of my daughter’s eyes. I immediately understood. The process of neurologic degeneration had begun. Our worst diagnosis was confirmed. I knew, with certainty, that my life just changed forever.

As I sit here writing this note, only 8 hours have passed since the phone call. Yet this feels like the longest day ever. I have cried for much of the past 8 hours. I spent the rest of the afternoon at the hospital, after which I returned home to pretend to be normal in front of my kids as I corrected their homework.

At 7 P.M., I drove to the home of a woman whose son died at age 5. I had never spoken with this woman before, yet suddenly we were members of the same miserable club. I showed up on her doorstep unannounced. I asked if I could come in; I explained that my daughter was dying. I asked her to tell me about her son. She did. And for a brief moment, I was comforted. I needed to dilute my pain. I felt strangely better knowing she understood what I felt at that second. It was with an amazing sense of urgency that I sought this parent out. Before I spoke with anyone else, I needed to speak with someone who has been through this before me. I’m glad God made sure she was home.

At 9 P.M, M.K. [a dear friend and mentor] called. He gave meaning to this day. I asked him if God was taking away anything that I NEED. He explained that we all have a job on Earth. When we are done, we are free to go. Rachaeli’s job is almost done. We may never know exactly what it was, but, suffice it to say, it’s almost complete. When she is no longer needed here, she can (and will) go. When she leaves, I will not be losing anything I need, because she has already done her job. I know he is right. He tells me he loves me. I need to hear that.

It’s 11:30 PM now, and I’ve been back to the hospital. The baby looks just beautiful and sweet. Nicole is calm and appears together. I want someone to cry with me, but I can’t bring her down. I miss my baby. I pretend this is a dream. It isn’t. It’s just the day that changed my life forever.