Tuesday January 13, 2004

1/13/2004 9:41:49 AM

Tuesdays are my day at home. It’s a special treat to be able to spend time with my baby. I hate thinking that my Tuesdays with Rachaeli are now numbered.

I love that she still smiles and laughs. God, it’s incredible how beautiful she is when she smiles. I melt. It’s like an angel visiting you for 3 seconds. I’m so afraid when the smiles will go away. I know that before too long I will see her starting to slowly drift away. As her vision dims and her brain fills with fatty deposits, there will be less and less of my baby here with me. The thought of that terrifies me. Every smile is a welcome reassurance that we are not there yet. I’m so afraid of the day when the smiles are gone.

The baby loves her brothers. They make her smile the moment she sees them. Nicole is right when she says that they will never once be mad at her. They will never once yell at her. She will never challenge them, anger them, or be hurtful to them. When she leaves, they will feel pure sadness; pure sadness. Nicole says she will always be a baby. It’s true. She will never sit up; she will never walk; she will probably never say Abba again (God, I miss that sound.) But I love my baby. My forever baby. She’s my old soul. She is as pure a Neshama [soul] as you can find. Yoni [my 8 year old] reminds me that she will never commit a single sin. Never speak one angry word; never hurt another’s feelings; never break a single rule. He is wise. She is pure goodness.

I guess I like to delude myself when I am not ready for the candid unadulterated truth. After our diagnosis, I painted a picture in my mind that my child will live until 5. Tay-Sachs kids die at age 5, I told myself. I suppose I really knew that that was usually an upper limit, but I continued to envision 4 more years with my baby. This past Friday night, consistent with my sad new custom, I read from my stack of Tay-Sachs educational materials. This time, I opened the directory of Tay-Sachs families, a demographic list including the birth and death dates of each child with the illness. I start calculating lifespans of each. 3 years. 2 ½ years. Some even just 1 year old. I lost it. I need more time. I want my 5 years…But do I? Do I really? On some level I feel like part of me wants this over. I want to skip ahead to the misery of the aftermath of my baby’s death rather than sitting and waiting for the inevitable misery to arrive. How messed up is that? As I think this through further, I think that what I really want is to be ready. I guess I envisioned being “ready” in 4 years. I’m not ready now.

I dreamt 2 nights ago another of my famous vivid dreams. This time I had left the airport and was driving home. It seemed like I was leaving LaGuardia. Though I knew the way home well, somehow I found myself going in the totally wrong direction, along a highway called “Route 2”. I was torn between just continuing to drive, hoping I’ll find my way, versus eating the time I have wasted, turning around, returning to the airport, and starting over. While I felt like I could probably still eventually find my way home from where I was, I ultimately decided to return the place where I started, the airport, then making my way home on the route I knew. I would pay better attention this time. As I drove back towards the airport, I was clearly speeding, hurrying so as not to waste any further time. Suddenly I find myself driving through a rather frightening neighborhood, when all of a sudden a scary man appears in the periphery, throwing a rock or a hard ball straight at my windshield. I was going too fast and was too unprepared to swerve to avoid the projectile. I remember it hitting my windshield with an incredibly loud bang. I awoke.

With little analysis, I quickly realized how easy it was for me to find myself completely lost, desperately trying to find my way back home, where I knew I belonged. Though I knew the route well, I somehow ended up on the alternate “Route 2”. I did quickly realize my error and decided not to rationalize that I could still find my way back through the wrong path (or lifestyle); I knew I needed to return to what is right and go the way I know best, even if it takes longer. This dream reflected my incredible subconscious fear that when Rachaeli dies, I will not be ready. I will be on my way to getting myself situated and back where I need to be (spiritually, emotionally, priorities, etc.), and I will literally be blindsided by her death. This truly terrifies me. M.M. [a therapist and friend] says I want (and perhaps need) to control as much as possible; to be as ready and prepared as I can be. This illness is one thing I can’t begin to control. The dream reminds me of every movie where the protagonist finally sees the way out of his painful situation, and gets so close to escaping with the romanticized success he has envisioned. Then, in the very last scene of the film, he is robbed of his chance to achieve it. All the rooting and cheering suddenly ends with tragedy. I fear deeply that this is my fate.