The Hardest Question to Answer

Most often I am asked the question: How did Elijah die?

There should be a straightfoward answer, but there isn't. Not because it is hard to talk about - really, ask me anything about Elijah; I don't mind!! - but because it is hard to come up with an answer. It blindsided us at the time and I never really figured it out. (Not for lack of trying, or re-living over and over and over.)

Here is the story of his death. That is 'how' he died; 'how it happened' in literal words. But the story of losing him isn't really the same as 'how he died' (which usually means, 'from what did Elijah die?').

If you are just looking for the quick answer, scroll down past all the emo stuff to the bottom of this post.

I realize that I never really specified the actual 'how', which could also mean 'why', in which case I certainly don't have an acceptable answer. It's when I start thinking about the 'whys' that gets my anger juices flowing.

I do remember, after he died, being in a frame of mind which, when resembling some coherence and not a heap of soggy snot and tears, was the Gwendomama equivalent to benevolence. I was at peace. I was sitting with Mother Theresa.

I didn't need the bad, there was no bad; only good all around us and us taking it all for granted. I was changed; how could I not have been?
I could not change the outcome; it had been pre-determined by the permanence of death and loss. I was determined to make something good out of this. I would wear the rose colored glasses; I had drunk the koolaid and swallowed with it my former angst-ridden self. I swallowed her and peed her out.

So I thought.

In the direct aftermath of Elijah's death, nothing was clear. There was blurry vision obscuring every moment, every action, every sunrise and sunset. It was easy then to maintain being peaceful. I pretty much had two moods: Mood A - Sniveling in bed and refusing to get up for 24 hours, or Mood B - My new 'beauty is all around us and all we have to do is see it' stance. Mood A took alot of energy, and I was usually so wiped out after a bout with Mood A, that Mood B was a welcomed respite. It required so little of me. I think people who knew me before thought I was on high doses of valium (which, in retrospect, may have been a preferable choice).

Eventually and very gradually, barely noticeably, the fog became less thick and my vision became less blurry. And what I saw and heard made me angry. I tried to pretend it didn't - for the only thing that scatters a social gathering faster than a straightforward dead baby conversation is an angry bereaved mother wanting to talk about her dead baby. I smelled the flowers, I smiled graciously behind clenched teeth while I endured the many many emotionless platitudes I was offered, I traced his face in photographs and cried wistfully.

But inside I was undeniably angry. And one day, ((surprise surprise)) the anger began to bubble up and leak out. I snapped at someone who told me my baby was in a better place. I barked at the (other) SIL who said Elijah was watching us from a cloud, waiting to send just the right little angel down to us. For months, people would ask us how we were doing. There was a prescribed answer to this question, I soon found out. If I deviated from the scripted answer (I am ___, DH is ___, Supergirl is ___) by using my dead son's name or having the audacity to mention how much we missed him, I would be met with the universal eyes glazing over, staring past me to the shiny object that would save them from the rest of the conversation.

This too, made me angry. "WHY DO THEY EVEN FUCKING BOTHER TO ASK?" I would go home and cry to dh, who, stewed in his own paralytic thick grief, could only nod blankly back.

Pretty soon, everyone avoided me. I was too angry. What if they said the wrong thing and I lashed out at them? What if? What if the conversation we had about my dead child caused them to think about the possibility of losing their own child and how painful that would feel? It was better to avoid me. Best to avoid the possibility of reaching out and being brought the fuck down.

To this end, the blog and all of its grudges were born. The rose colored glasses were crunched underfoot. And I have written both angrily and wryly about these bumbling fumbling exchanges.

But what I have not written about is the most painful of all of these exchanges and the completely unexpected fallout of losing my son: my family's reaction and my now strained changed relationship with (some of) them.

My mother is so sad that I am angry. She is also very sad that I cannot forgive. I am the first person to admit to being slow to reach for the olive branch, but I also maintain that sometimes, it's better to fuck the forgiveness and shoot it straight to someone who continues to utter stupid and painful comments and shows no sign of letting up soon or ever.

It hurts my mother to see me so angry about this and she is disappointed in me for not being able to forgive or let it go.

WTF?

"Mom," I said, " Maybe instead of constantly telling me to forgive the mouth which spills idiocy, you could possibly hear that what I am saying is that I am repeatedly hurt by this statement and maybe you could stop defending the person who delivers it."

No. It is my 'job' to forgive. To forgive what will never ever stop unless I stop it myself. Which would be 'wrong' in my mother's opinion. Because it would hurt someone else's feelings, as she never intended to hurt me with her words. Not only that, but she would be disappointed in me if I asked my sister-in-law to please stop saying that and why. Because it would mortify my sister-in-law to know that she had hurt my feelings (even though it will continue).

Mmmkay.

What is it that is 'so horrible' that I have not yet written the source of the angst?

This simple statement, which I have heard repeated (by the same person) at every family gathering in the past four years in which someone has the balls to mention Elijah's name:

"I can't help but feel that he was spared."

If that sounds benign to you, then you have never lost a child. Or maybe you're just a bit slow (not that there's anything wrong with that).
Think about it. Elijah wasn't dying of a degenerative disease. He did not have a fatal brain tumor. He was not in pain; he was conversely, quite blissful. If he was 'spared', then what life was he 'spared'? That of being constantly loved on and entertained by his adoring mother, father, and sister?

There is no truth to that statement, there is no real thought behind that statement.

It is a platitude and a stupid one at that. And I am sick of hearing it.

Not too long ago, a reader sent me a comment about an article in the SF Chronicle about children with an enzyme deficiency whose story reminded her of Elijah. She wondered if she was 'too intrusive'. She was not intrusive at all. In fact, I think she may have been spot on.
So much, that it became Too Big to write about for a while.

These children looked mind-blowingly similar to Elijah, while we (and doctors claimed they) had never seen a child who looked like him before. The enzyme deficiency was a real possibility.

check out the adorable baby on the right...

...who looks so much like my adorable guy:

We were supposed to go to a specialist at UCSF to take Elijah for testing for metabolic disorders. We had been through hell with another nearby world-reknowned hospital; Ivory Tower and Useless Childrens Hospital. And we had not only gotten nowhere, but we had actually met up with some severely deficient physicians who, although they themselves could not diagnose Elijah, refused to refer him out to any other specialists. It took until Elijah was eleven months old to even get an appointment with an endocrinologist.
But at each and every appointment at IT/UCH, and without fail, the next 'specialist' we saw would react the same way.

• Shock. (OH MY! He is HOW old? He is SO VERY SMALL!!) (duh)(maybe we should see a doctor for that...)

• Concern. (Family history intake - again, though it is at their disposal on the computer nine inches from their elbow.)

• Tests. Run Some. (This is not an arguable suggestion for doctors, but each and every time, the doctors would ask us what tests had been run already -again, see above re: computer- and then order more tests to run...and then? NOT TELL US what tests would be sent to the lab, so that when we went to the next 'specialist' we could: Repeat the entire process over again.)

It got to be tiresome. So our kind (yes, part of me can still say she was kind, even if another part of me knows she made a stupid mistake at the cost of our child's life) pediatrician recognized the lack of cohesion or guidance for what it was instead of her alma mater, and decided to refer us out to some endocrinology Experts. She had arranged for a coordinator who would work with us at each visit, and handle Elijah's records and walk us through each department as necessary, in efforts to avoid the redundant idiocy and condescension of the previous fabulous hospital.
We were supposed to start taking Elijah to UCSF Medical Center in May of 2004.
He never made it to the first appointment.

When I saw these children at UCSF receiving enzyme replacement therapy, I cried pitifully. That should have been my child. My child should have had the time and the opportunity to receive not only a diagnosis but also treatment.

I felt cheated all over again. I started to feel depressive just thinking about it. What I didn't anticipate was, when I shared this article with family members, I would be 'called out' by my own mother as 'difficult, angry, and unforgiving'. I certainly never thought that sharing the article with my family would warrant the 'I can't help but think that he was spared' response yet again.
I thought wrong.

Again, I ask you. SPARED WHAT?


The only answer I can justify in my mind, is that the only real person who was spared, was my sister-in-law. The sister-in-law with her own four healthy children and a baby obsession, yet who could hardly bring herself to hold Elijah when he visited her home. I have concluded that her sentiment of being 'spared' is more about her than it is about my son's actual life. Because if it was based in reality and about my child's existence, then she couldn't be more wrong.

But yes, it's a bit of a downer to have your own mother defend and protect someone's intentions over her own daughter's raw feelings.

This has been going on for years. I am getting worn down by the loss of not only my son, but family members as well. My brother (married to afore-mentioned sil) is another post entirely. We used to be close. Very close. But he's now a smattering of libertarian, and when he told me that Elijah really 'should never have lived' because of our lack of health insurance coverage....well...that changed our relationship rather permanently. (tmi? tuf.)

There was so much more to lose than what was obvious upon his death. Behind the scenes, you could say. But I am done with that. The lenses of the rose-colored glasses were smashed years ago. This is me.
This is my reality.

Death is not pretty. When your worst nightmare comes true, it's hard to pretend that you are living your dream.

So, how did Elijah die?

Okay, I am going to try to answer this one. Because, like I said...Not clear. Even to us.

• There was the growth hormone he was on which appeared to debilitate his metabolism. That was right before he died.


• There was the bronchitis he got from the visit to the pediatrician's filthy waiting room when we went to discuss the growth hormone.


• There was the tracheomalacia.


• There was the fact that we lived 30 minutes from a hospital and he should have been admitted with bronchitis.


• There was the pediatrician who didn't put it all together.


• There were those last moments of recognition. He looked at me desperately and I could not give him air or save him.
  I know, I was there.
  

Officially? I don't know. I don't even know what his death certificate says. Oddly, the ashes did not come with one.

I think it says 'heart failure'.


But it was mainly bronchitis+tracheomalacia+bad call doctor.


So there. Now that's answered.