Friday, April 04, 2008

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.

20 comments:

Denise said...

You were cheated!
You got the biggest ass shaft ever!
I can't pretend to know what you are going through G. All I can do is be here for you. Hugs.
Oh and i gave a shout out to you on my blog. It's not about ball sacks this time lol. But about baking.

gwendomama said...

you, my dear, are a dear.
i know everyone wants to hug me, and i am starting to feel the big fat internet hug. it's not something i expected when i started blobbing about this. i felt alone and i felt that not only was there nobody saying what i had to say, but nobody wanted to hear it.
feeling less alone is the tremendous bonus of writing this.
beyond the cathartic moments, of course.

mamadaisy said...

absolutely the biggest cheat immaginable.

LOTS of hugs for you.

Tricia said...

What strikes me here...? Your "daughter" was not diagnosed with terminal brain cancer- in fact, quite the opposite- at least from what I have read here.

Would he have had a "normal" (whatever the fuck that is) life? Probably not.

Would he have been loved, cherished, adored... a pain in the ass, a lot of work, and some days omg, please take me away? YES!


He was taken from you. You were soooo cheated. Elijah's death was a mistake.

Is it one that the pediatrician will remember for the rest of her life? I'm betting, yes. Would a lawsuit help her remember this fact?? I bet not.

Would it bring Elijah back?

Sadly, regrettably, terribly...no.



Would it make you feel better?

Anonymous said...

You were cheated. END OF STORY. I am not sure if a lawsuit would do enough to take away that fact, or in any way ameliorate it. I never knew him, nor really any of you, but since I have been reading your blog in some small way he lives for me and maybe that is some consolation. Maybe him being alive to another person can make it one millionth of half a percent better. You do a fantastic thing with this blog. And for what it is worth a friend of mine did sue for her son's medical malpractice and it was horrific and basically unbearable.

Lin said...

Wish I were closer to hug you close. xoxoxo

Anonymous said...

Do you go to therapy? You seem (rightfully so) obesessed.

gwendomama said...

dear 6:56 anonymous:
maryland, is it?

obsessed? when i talk about my live children nobody ever says i am obsessed. but you know what? it is easier to hear about them.
to read about a dead child is much more difficult. it takes dedication and a strong stomach. don't worry, not everyone has that.

i did go to therapy. i saw a therapist friend for about 8 months for grief counseling.
then, she DIED suddenly.

now i just write obsessively about my dead child and make you read it.

gwendomama said...

tricia

you are right - he was not diagnosed with any fatal illness. i used that analogy because i felt i had to defend myself with words that my friend could understand.

he would have been loved, oh yes. he was so very loved.

winning would have made me feel a teensy bit better. maybe.
losing would have been devastating.

it is moot now.

Boss of Seattle said...

My Favorite Friend Anon (*the one who seems to think G is obsessed*), What are you talking about? Obsessed? wouldn't it be a LOT wierder if G was 'over it'? Now that is weird. Thinking of, pining for, missing your dead child is normal. For LIFE. If one of my precious children were to die before me, I would miss him for the REST OF MY LIFE! And by the way, in the age of Oprah and Dr. Phil, who doesn't go to therapy? What a stupid question. Shit like this comment hurts my friend and I request that ALL of you who have judgemental snippets to add to her process, write it and delete before sending. This is a much more compassionate approach to another's deep pain. Thank You.

Boss of Seattle said...

And, I have to add what ISN'T theraputic about how G is dealing with her greif (Gwendomama blog)? it seems like a viable and cheaper option than endless professional intervention.

Tricia said...

HEAR, HEAR BOS!!

Anon-

While your comment may have come from an innocent and innocuous view point. Reading it here seems confrontational and insensitive.

Have you read previous posts?

Have you attempted to see the world through the writers eyes?

I don't know G in real life.
I'm sure I have made comments that appear to be rude and confrontational- here and on other places- but I leave my name. I am open to discussion, argument, a further chance to explain.

Ultimately, for me, this is the difference between journaling and blogging. You know?

Tricia said...

and can I also add that while I understand defending the quality of life of Elijah would have been a necessary evil, that it's terrible, awful and unnecessary.

My very good friend had to do just that when her schizophrenic, suicidal brother attempted suicide while on suicide watch in a mental hospital. (They won- he's still in a living coma- brain dead, but still breathing on his own.)

Jen said...

I just don't understand your friend's logic. Lots of parents have fears that their children may die at a young age-- I love your analogy at the end. I don't think that you a) have to defend his quality of life (how barbaric!) nor b) have to worry about the fact that you expressed that fear of his dying young.

He did not die young because of his condition, which was undiagnosed. He died for other reasons INCLUDING medical neglect!

I think that it is bullshit (the reasons I have heard so far for you not to pursue a lawsuit).

If you want to do it, I'll support you.

Boss of Seattle said...

I think the point that the friend was making (who is an attorney and quite a smarty pants as well) was that the opposing counsel will stop at nothing to win their case, and does G actually WANT to and is she ABLE to withstand that sort of questioning coming into her sphere of rememberance of her life with her child. Not that she (atty friend) actually thought that it is appropriate to have to defend his quality of life, just that G would be forced to. Excuse the following please, that would be fucking terrible and the rat bastard insurance attorneys are the bottom of the trough and I don't know if I could withstand that either.

Anonymous said...

Anon from Rockville, MD here, again... I actually meant no harm at all. Elijah looks alot like my son. My heart hurts for everyone in your family, I couldn't imagine the pain you feel. Seeing pics posted of Elijah make me go hug my little one and give him lots of love. I didn't have time to post what I wanted to and just really wanted to know if you were in therapy, not implying at all you needed it or that there was anything wrong with your blog. Your blog is like a journal and it would probably make a great book and help lots of people. I apologize for sounding rude, didn't mean to.

Carrie aka Alli's mom from LissAngels said...

G~
((HUGS))
I had a similar experience with a geneticist re: Alli, every question I asked her regarding Alli's "quality of life" her answer was "I don't know"... GGGRRR
We're allowed to be angry and feel cheated! I, personally, am thankful that you can put your feelings into words via your blog. It is my "therapy" knowing that I am not alone!!

gwendomama said...

Dear Rockville,
I do appreciate you coming back. Did you know that you can just put your name in the ID section? google/blogger makes it very easy to comment anon with a name.
it is more...friendly.

I understand that 'posting on the fly' comment, but you know what? I dont think there is any good way to take that 'obsessed' comment. I mean, sure you give me 'permission' to be obsessed (rightfully so), but seriously, if you wrote your own blog, it would probably be focused quite a bit on your son.
Just because I talk at length about the 13 mos I had with my son (oh, did I talk about his 1st birthday AGAIN? so sorry - he only had one birthday, you see) does not mean I am obsessed.
If I was stalking his former pediatrician, then maybe obsessed. But to insinuate that someone who shares their dead child's life is obsessed, simply becausee you cannot stomach the ending of that story?
THAT is wrong.

Kelly said...

You were cheated and it rips out my heart and just reduces me to tears. I'm just so sorry, sweetie. I wish there was something more profound I could say. I'm just so sorry.
Peace, hugs, and love!

Sophie said...

Hi Gwen,

I just stopped by after seeing your post talked about on Glow. I wanted to read more about Elijah and find out what happened to your beautiful boy. I did not expect to be able to identify with you on so many things. My baby girl died at just under six months, three months ago. She was very ill and we were dicked around by the medical staff here in Melbourne too. I am so sorry for your loss.
I just wanted to let you know I was reading your blog. (I always feel a bit weird reading blogs and not letting people know).
Regards,
Sophie