Cheated

Today I feel crappy. I would love to write about Bubbles' progress and the work we have been doing with him. I really would. And also about my Big News that makes me feel just a little bit special.

But that will have to wait.
Because today I am having one of those 'it's not fair' days. And feeling ripped-off. And feeling damn angry at the pediatrician. Because, lets face it, she is the easiest one to blame. And truthfully, she does deserve some of it.
While we were agonizing over the decision to pursue a lawsuit or not, one of my friends (who happens to be an attorney) pointed out that I, myself, had expressed fear that Elijah would not live a long life.
It's true.
From the beginning, I hated it when nurses in the NICU called him an angel, an name that came out easily when they saw his true halo of platinum curls, his cherubic face, his startlingly mellow disposition. "He's such an angel!"
I would frown. No, not an angel. A real boy. Like Pinocchio.
Not an angel. My baby. My son. My boy.
Flesh and blood, see?
Not an angel.

I remember that Christmas with him so well (there was just that one). He was thrilled by all of the lights of the holiday; eyes twinkling, always gazing at the lights and singing to the fairies that danced around them.
I took him to the church (in which I had grown up) midnight service on Christmas Eve. It makes my mom so happy, and I love my mom, so yes - I go to church then. Plus, I love the music.
Elijah loved every bit of it; the smells of incense, the sounds of the pipe organ and choir, the gazing at the beautifully painted cathedral ceiling. When my mother and I sang the carols, he sang along. But when the entire congregation sang Silent Night, a capella, I was holding him in my hands, with his feet against my heart, facing me. His face just shone in the candlelight, his hair was indeed a halo, his eyes glittered with the knowing of a thousand bodhisattvas, and 'sleep in heavenly peace...' came out as a bit of a choked sniffle for me; I blinked once and the tears just started flowing. I looked over at my mother. She was also singing to Elijah, and she was also crying. I wondered how many Christmases we would have together. I knew in my heart there would not be many, if any, more. But who wants to listen to their heart say stupid shit like that?
Maybe a year later, I asked my mom if she remembered that, and asked her what she was thinking. I knew the answer.


Every specialist we saw at the Ivory Tower hospital would marvel over how different! and special! and tiny! and adorable! our little mystery boy was. They took every opportunity to point out his anomalies and how they just didn't add up to any syndrome for which they had a name. They talked at length about his delays and deficits; it got to be quite tiresome, so I would go in there saying, "I know what he is supposed to be doing, let's talk about what he is doing."
There were never any answers. (I realized later, that this was due largely in part to the fact that the doctors at Ivory Tower never actually communicate with each other or actually take any sort of academic interest in your child, even if they are a head-scratching mystery. Their approach is more along the lines of: 'If I can't diagnose it, then there is no need to discuss this further. I want diagnoses! Not the inability to give one!')
But to every single specialist, I would ask the same question.
"I understand that you don't have any diagnosis for my son, but do you have any reason to believe that Elijah will die at a young age?"
The answer was invariably the same.
"No, we have no reason to believe this."
Even when I told the Dr. Asshat neurologist that I was concerned about his lable of microcephaly, and wouldn't that alone be a reason to believe he would die at a young age, he dismissed it with,
"No, we have no reason to believe this."
Of course, almost all real information about microcephaly will tell you that the life expectancy for a person with this diagnosis is significantly shortened.
Also, two other doctors who saw Elijah after this dx (a geneticist, and an infant development specialist) disagreed with and recinded that lable, as his head was in proportion to his body. There was some space between his brain and skull that apparently should not have been there, but everything about him was proportional - for a two or three month old baby rather than an eight month old baby.

I kept asking. I asked his pediatrician about ten times while he was alive, and again after he died. She always said that there was no indication.
I begged her to share with me, after he died, if there was no indication, was there perhaps an intuition? I was desperate for her to say yes. It would have helped to explain the lack of interest by all those specialists, though it also would have made me wonder at the lack of urgency in getting him into each one of those specialty clinics (lost cause?). She said no.
Once, at an appointment with a geneticist, she asked me why I asked that question about his life expectancy. I actually teared up when I told her that I was afraid that he would die young. Her response?
"Maybe we should take another look at him in a year. Let's set up an appointment for next September."
Seriously. Every word, true.

In spite of all my fears, I never, ever thought that it would be only 13 months and 11 days.
So, when I was in turmoil over the lawsuit decision, and my friend reminded me that, if I chose to pursue this, I would be required to defend his (quality of) life in general, as he was a 'special needs' child, and that I had spoken about my fearful intuition openly, I responded thusly:

If your four year old daughter is diagnosed with terminal brain cancer,
and you had no idea how much longer she had to live, and on the way home from
the grocery store, your car is struck by a person who made a poor decision
and is driving drunk, and your daughter is killed, then is her life not worth
fighting for? Is your anger unfounded? Should you not feel like you
have been cheated out of time and handed the biggest rip-off in the history of
motherhood?

I feel cheated today.