Saturday Night May 28, 2004

5/28/2004 9:42:52 PM

The baby has been sick all week, with some wheezing, followed by increased irritability, more neurologic symptoms, and what seems like an increase in seizure activity. More Benadryl added to her Reglan cocktail hasn’t seemed to help. The same arm and neck movements that 2 weeks ago seemed like a baby trying to navigate her environment have been reduced to a collection of purposeless, even painful, choreiform movements associated with further white matter disease. Of course, nothing has really changed. It’s just that, once again, medical science has robbed me of the capacity to view my daughter’s existence as anything but pathology.

Within minutes of the nurse leaving this morning, I found myself again unable to soothe my dying child. As each wave of seizures comes, I’m greeted with a humbling reminder of how little I can do to stop the process that is ravaging her brain. I now feel her whole body jerk in my arms, like she’s being shocked by some sadistic force, each jerk sending her into another round of unconsolable tears. I wonder if she can see me. Am I any comfort to her at all? Her crying reinforces my deep seated fear that I am entirely powerless to help my daughter. Her mother comes in to relieve me. Rachaeli settles down. I’m both hurt and relieved.

At synagogue, Yoni and Shui behave beautifully. They leave for groups, and I am seated alone until J.A. [a dear friend and neighbor] arrives. J.A. turns and asks how we’re doing, how the baby’s week went. I suddenly start crying, something I’ve done frighteningly little of since returning from the Tay-Sachs conference in April. I apologize for reacting like this and try to regroup. The Rabbi starts his talk and I pack my things and leave. I’m too emotional to listen. I find an empty classroom and start to cry. It’s a good cry, even tinged with some anger. There’s an emotion I really haven’t made much room for so far. I spend 30 minutes crying before I regroup and pick up the kids. I feel good that I gave myself this time.

At home, Ari sits with me on the couch after lunch, as his brothers play outside, his sister sleeping upstairs. Nicole is reading at the table.

“Why is ‘Chaeli going someplace for a long time, Abba” he asks.

I immediately feel like I know exactly what he’s asking. I ask him to explain his question, anyway.

“Why is she going someplace for a long time?” he asks again, somewhat more impatiently.

“Going someplace…you mean, like to Shamayim [Heaven]?” I ask him.

“Yeah, Abba. To Shamayim. Why is she going?”

“Because she is sick inside her body,” I try to explain.

“When will she go away?” he then asks.

“I don’t know, Ari. I guess when God decides that He wants her back, He will take her up to Shamayim to be with Him.”

“How will she get there – to Shamayim?” he asks.

“God will take her there Himself,” I say.

“But God doesn’t have any hands, silly Abba,” Ari says.

I do my best to explain how it works, though I realize midway through my explanation that I have many questions of my own about the whole process.

“You know when ‘Chaeli is in Shamayim, she will be able to walk, and talk, and run, and play tag,” I explain to him.

“I want to play tag with ‘Chaeli,” he says.

“You will one day. When you are very old and you die and you go to Shamayim, you will see ‘Chaeli again and she will be so happy to see you and play tag with you.”

“How old, Abba? Like when I’m 4?”

“No, Ari,” I explain. “When you are very old you will go to Shamayim and you will see Chaeli again.” And as I explain this to him, I am overwhelmed with the awareness of how incredibly confusing all of this must be to a 3 year old. Why does he go to Shamayim when he’s very, very old, but his sister goes when she’s still a very little girl? Again, more questions I can’t answer for myself, much less for my 3 year old.

After lunch, I settle down to read some passages from Lisa Aiken’s book, Why Me, God? about the “Jewish response” to suffering. The passage about Rabbi Meir and his wife Bruria comforts me. Upon finding their 2 sons dead, she asks her husband what to do about some gems a man entrusted her to hold a number of years ago. “He now wants them back”, she explains, and asks if she’s obligated to return them, even though she’s grown quite attached to them after taking care of them for years. “Of course you must return what’s not yours if the owner is asking for them back,” Rabbi Meir explains. She then shows him the bodies of their 2 sons and reminds him of his words minutes earlier.

I read that Rav Nachman also lost several children to Typhus. Ms. Aiken quotes a Tefila [prayer] he wrote, asking for the capacity to better understand Hashem’s [God’s] plans. I think I connect with these sentiments.

It seems that we all come to accept the reality of our losses; our comfort and healing comes through being able to make some sense of these events. I’m still stuck on why she has to seem to be suffering though. I can much more readily accept my suffering than hers.

At Synagogue tonight, I’m standing near R.B., who, at 21 or so, puts her head on her father’s shoulder and says, “I love you, daddy”. I want to cry again. More things I’ll miss out on ever hearing from my daughter.

It’s late and Shabbos draws to a close. It’s been a heavy one. I’m not sure who opened the window, but I feel it’s time to close it some. We’ll see if my children let me.