Writer Girl asked...
I just want to know everything. I'm nosy that way. I really want to know, I guess, if I will ever stop hurting. You seem in such a good place. I want to know how you got there. Am I the only ortho chick who has MAJOR issues with God? I have a hard time believing that
Oy. Writer Girl. You really go for the sucker punch, dontcha?
You also give me way, way too much credit. Firstly, Dovi is six years older than your son. I've had a lot longer than you to come to terms with Dovi.
On Thursday, I had possibly the worst hour and half of my life. I attended the funeral of a 14 month old baby. A baby who never learned how to walk. He was a perfectly normal, healthy 14 month baby last Monday. Thursday, his parents had to bury him. It was the most awful experience I have ever had. And if it was unbearable for me, I cannot even begin to fathom what it was like for his parents.
All I could think about at the funeral was that there must be a plan. There has to be a plan. If there is no plan, there is absolutely no way whatsoever to survive the unimaginable. If there is no plan, how on earth can we live through the experiences that have no explanation?
So there must be a plan, dear Writer Girl.
The only problem is that we have not a clue what that plan is.
Dovi has FD. Dovi suffers, day in and day out from his disease. He wakes up every morning retching (imagine morning sickness every day of your life) and needs medication to be able to function. He struggles every moment of every day to communicate. He cannot eat correctly, walk correctly, talk correctly.
If I let myself, I would lose my mind trying to understand WHY G-d felt it necessary to make Dovi the way that he is.
What good can come from an innocent child suffering? For that matter, what good can come from anyone suffering?
I could spend all day, all my life seeking out answers and explanations.
But the bottom line is that there is neither an answer nor an explanation that you or I can understand.
There is absolutely nothing I can tell you that will suddenly make the clouds of uncertainty part and you will say, "Aha! now I understand. Now I get why 14 month old babies die, and kids have FD, and Sotos, and all types of really awful things. Now I understand why Chai Lifeline has to exist. Why people have to struggle and suffer"
I can't give that to you.
Benjie and I often speak about parents who suffer from what we call "HIS Syndrome". As in "Head In Sand Syndrome". Meaning: If I pretend really, really, really hard that my child is just fine, he will be just fine. I will not acknowledge that my child actually has something wrong with him or her, because as long as I do not acknowledge that problem, my child is "normal".
I suppose to some degree that I suffer from my own strain of HIS Syndrome.
I cannot understand. I cannot fathom. Therefore, I don't even try. I make no attempt to comprehend why on earth G-d decided to give a baby with FD to a couple of 20 year olds who had not even celebrated their first anniversary (as a sidebar, did I ever tell you guys we spent our first anniversary in Evanston Hospital getting Dovi's g-tube put in? My mom brought us Chinese food that we ate in the parent lounge of the NICU and the roses Benjie bought me sat at the nurses' station).
I cannot understand.
It is impossible.
Therefore, I don't. Maybe it's simplistic and I am not truly exploring the depth of my emotions and pain regarding the absolute havoc and suffering that Dovi's FD has wrought upon not only me, but my husband, other children, and family at large.
But I just stick my head in the sand and say "I don't get it. And I cannot get it. So I don't even try".
I guess another way to explain it is this: I get in my car and drive it. I do not understand, nor do I have any desire to understand, how it works. I just know that it does work. I get in, turn it on, and off we go (generally to Jewel to get free groceries but whatever).
But I really have not a clue how that car works. My mechanic does. And when I need it to get fixed, I take it to him, and he fixes it. It might cost me a lot of money, I may be inconvenienced to have it in the shop for a few days. But my mechanic does what he needs to do to get my car drivable again.
So too G-d. I don't understand how G-d makes the decisions that He does. Or how He "chooses" how things should happen. But just like my mechanic knows he needs to replace the belt in my engine to make my car run correctly, G-d knows what He needs to do to make my life, and the world at large, run correctly.
I don't understand why Dovi's illness improves the world. And you cannot tell me that Dovi's illness is some type of atonement for bad things that happen. Nothing makes me more irate than the opinion that a child's suffering atones for other sins in the world.
But what I CAN tell you is that Dovi's illness is somehow in integral part of the world at large.
That Dovi having FD is somehow part of the master plan.
One that I do not understand, never will understand, and make no effort to understand.