Saturday, July 12, 2008

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.


"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).


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.


Boss of Seattle said...

Oh My Dear One, It will never be the same for you or any of us who love you and your family. You were and still are a magnificent mother. Elijah was so blessed. You were so blessed. We will ALL miss him forever.

JenK said...

Oh honey, any sane person would be angry. And any sane person would understand that a Mom who's been through what you've been through is going to react with anger at stupid, inane, cliched responses.

What better place could there be than with you and his family? None. He wasn't spared. He was cheated, same as you.

You're 100 percent right to distance yourself from anyone that tells you different.

H said...

Oh Gwendomama, big hugs to you. I started reading your blog shortly after my 13 month old was born and it really has made me love my little guy more. Each time you post on Elijah my heart goes out to you. It also makes me go hug and kiss my baby. I cannot imagine what you have gone through. I am so sorry you have had to experience such pain but I am so happy you had time with your sweet baby.

Thank you for such a lovely post.

Denise said...

can i just say that I want to bitch slap your sil? Somepeople are so fucking stupid. I will say that Elijah is the most beautiful baby that I have ever seen. Oh and you my friend.... Inspire me every day. Love you!

jenijen said...

Reading this really, REALLY pissed me off. I hate it when people need so badly for everything in life to make sense that they explain away the most tragic and awful things by saying it was for the best. No. It wasn't for the best. It's undeniably fucked up. I'm so sorry that you've got family members dishing shit like that out. They should be the ones watching your back and carrying you.

love you

Shannon and Carey said...

heartbreaking post.
Elijah makes me smile.
Grudges are ok. I hold them too.
-Shannon in Austin

Snickollet said...

Thank you for your comments at my blog. You weren't too forward at all.

I've only read this post of yours so far, and I just want to say that I'm so sorry. Elijah was beautiful. I can't believe that your SIL could barely stand to hold him--I wanted to reach through my computer screen and scoop him up myself.

Thinking of you.

Elizabeth said...

Spared?? "really never should have lived"?? I am so angry reading those words, I can't even imagine how you feel. Your son should have received the correct care and NO ONE should have ever been uncomfortable around him. ooh, that makes me mad.

You go ahead and rage all you need to, honey. sending big hugs.

Linda said...

Man, oh man. I'm not a violent person but I really want to beat the living tar out of your brother and sister in law. Some people are just ignorant idiots.
That picture of Elijah is just beautiful. What a gorgeous little boy. You were cheated..

Headless Mom said...

I saved this post to read when I had the time and emotions around me to do it justice.

You are blessed to have 3 beautiful children, and cheated to now only have two where 3 should be. They are lucky beyond words to have you as a Mama.

My heart cries for your loss- all of them. Your beautiful boy and for the supportive family that you should have in the wake of this tragedy.

I can't fathom that my words would mean a hill of beans in this situation because I know without a doubt that there are no 'words' for what you have gone through, but I would like for you to know that your story has deeply touched me and I will pray for your family.

Tricia said...

I've been thinking about your family on and off all day.

and the things people say in an attempt to comfort and soothe and mask and move on. different ways of dealing with grief. the loss of knowing the right thing to say- wanting to say and do the right thing- wanting to ask really, how is it? wanting to help, but afraid to touch the raw spot- worried about moving on, moving past. others, being in denial, platitudes, pushing past the pain. having different agendas.

Honesty, just being honest.

Saying that doesn't help me. I'm not ready for that, please keep it to yourself. I'm glad that the thought helps you feel better, but it makes me want to scream. Go away. I want to be mad and sad and grieve and THAT IS FUCKING OKAY!

Not that you were asking. Weird what comes out sometimes.

The other me said...

Sometimes, rage is what keeps us breathing, I held onto my rage (over a totally different reason) for 17 years, only when I was sure I wouldn't actually die from the grief could I let it go, like spewing a huge black ball of rage that felt as though it may actually kill me after all.
People, when faced with a situation they cannot possibly imagine dealing with, become bumbling idiots, it's the truth.
I had so many people tell me how lucky my children were because when they were snatched and horrifically abused by some pedophilic monster,taking them FOUR YEARS before they even smiled properly again, they weren't killed. What luck! I would incredibly LUCKY we all are. Bumbling idiots.
A year later, one kind hearted idiot asked me if I had been abused myself as a child because, well Why on earth wasn't I over it yet?
I held onto that rage and I nursed it because Dear God if it didn't stop me crumbling and just giving up. To me it was a positive feeling, that hatred.
When we grieve, for whatever reason, we have t do whatever keeps us up and breathing to get through another day.
My mum would tell me over and over that she couldn't bear to hear what had happened, so could I keep it to myself. My Bishop at church said I should probably keep it quite in case people got fed up with hearing such negativity.
Idiots from the home on out. Hold onto whatever keeps you sane right now. Elijah is your baby, it is your heart that has been torn open and left gaping.
I have been reading your blog for a while and am not sureif I have ever commented before, because of course I have no idea what to say, I am a bumbling idiot.
He was beautiful, truly perfect in every way. My heart breaks for you.

gwendomama said...

every time i write about elijah, i put people at risk. i risk making many people uncomfortable. that's the beauty of the click.
which is why i appreciate each and every single person who can take their own risk to be bumbling idiots (i do it to, frequently - i received no immunity from that with my deadbaby status). the mere fact that you can even attempt words after i have expressed such bitterness warms my heart and impresses me.

and i also have to say - my SIL REALLY IS a nice person and REALLY DIDN'T mean anything by it.
the issue has become more of the gag order for me. i don't like to play that way.

Kristen said...

I'm sorry people cannot let you grieve the way you need to and to share the way you need to. I can relate on a smaller scale after multiple miscarriages and agree, they are morons. There isn't much I can say after reading the previous comments, they are the words I want to say. Elijah was beautiful and I'm so sorry there wasn't the time nor coordination of efforts there for him. Your SIL is a dumbass, but your brother, I want to kick. Seriously.

Shamelessly Sassy said...

He was so beautiful.

Jenine said...

There really isn't anything I can say that hasn't already been said already. You were cheated. Elijah was cheated. He was beautiful and he looked so happy in that picture.

Your family though is another matter. I know you said that your SIL is a really nice person. I'm sure she is. However, nice people still can say the most stupid of things when they're trying to be nice. She and your brother. Sure, you know they meant well and obviously what they said probably didn't come out as intented, but that is not YOUR fault. And from what I gather, your brother may have made the one stupid comment, but your SIL keeps repeating hers at family events? And your mother defends the SIL for saying such stupid things and says that YOU are the one that should forgive and forget? See - THAT is truly messed up. Why should you be okay and condone the rubbish spewing out of peoples' mouths? And by letting it slide, you would be giving the unspoken go-ahead that that sort of thing is acceptable. Have you approached this SIL and told her that what she says is not okay with you? Has your mother? Has your brother?

Perhaps telling her once and for all that although you appreciate her being one of the only people courageous enough to bring up Elijah, and although you appreciate her well-meant words, what she says - and you can quote her here if she says the same blasted thing over and over - is not okay with you. Perhaps she just doesn't get it. Anyhow, if she's called on it, it's likely that she won't say it again.

I still feel that your mother should feel ashamed that she will defend your SIL's stupid and unthoughtful words over your feelings. That's just wrong in so many ways.

Kelley said...

Babe, took me 4 goes to read this. I kept getting so weepy and so angry I had to go away...

I have had the opposite. About Boo. Apparently the child that shouldn't have lived, would have been a blessing if the apnea as a baby took him, how disabled those that died before him would have been, how much better all our lives would be without him... so I understand. Fuck how I understand.

Your boy was beautiful. He should still be here. I am angry for you. And people like your SIL have never felt real pain or loss so have no idea how to deal with it. Lets hope for her childrens sake that nothing terrible happens in their lives.

Hugs babe. You are wonderful.

Debbie said...

Well, feck me. You are so right to be angry. This is YOURS to decide what feelings you want to attach to it, and you are right that people just don't know until they've been there. Elijah is a beautiful baby boy. I would have liked to have met him.

Nina said...

I just started reading your blog and I feel intrusive commenting when I haven't been here for the whole journey, but I just had to say the Elijah. He was beautiful. And you have every right to be angry. Your SIL and your brother and your mother...are so WRONG. I really don't understand how people can be so unbelievably self-absorbed.

I'm so so sorry. I don't know what else to say. Except that he was adorable and I wish things could have been different. For you and for him.

Amy said...

I am so sorry to hear your dear beautiful son died.. Just found you and have been reading..

I have worked with individuals with disabilities for many years now (30) and have great compassion for them. I am so sorry your son's life ended as it did. And I hope in time you and those dear to him are able to move on and be happy.

What happened was very tragic.. No one should have to live through similar.

tbtine said...

I came to your blog for recreational reasons and stayed because I recognized a kindred spirit.

While I have yet to lose a child (at 32 weeks with my first/only now), I have lost, and grief is a tough enough thing to go through with the loss of an adult. I am constantly questioning how I will deal with something like your loss. I hope I am as honest.

The "he/she's in a better place/spared/better off" comments keep coming to me regardless of who I lose, and I refuse to believe that people can be excused for such callous behavior--especially people who are usually, like you said of your SIL, so "nice". I just find it that much more difficult to forgive the "nice" people who "mean well", because they're exactly the ones who should know f-in' better.

Anonymous said...

I LOVE that picture of Elijah... those are the most kissable cheeks ever and those eyes would make any human with a beating heart swoon.


Rachel in Boulder Creek

Eliza said...

Gwendomama--I found you through a zillion links and have read about your Elijah with great interest and sadness; what a beautiful boy! I just wanted to throw in my two cents and urge you not to beat yourself up, because I have a child with atypical facial features and many similar symptoms (now almost three) and stumbled upon MPS in my consultations with Dr. Google and was CONVINCED that that was what my child was our geneticist. But we had the urine test done and IT WAS NEGATIVE! What does this mean to you? Well, not a damned thing since we're talking about a different kid entirely, except that MAYBE Elijah did not have MPS either (I can, and gladly will, if you come and leave me a comment expressing interest--because I don't publicize my e-mail but do moderate comments--show you pictures of my baby that are in some ways very similar to MPS children) and would not have benefited from this enzyme-replacement therapy. I could absolutely be talking out of my arse here, but one thing I've learned from nearly three years of armchair Human Genetics is that a lot of things look like a lot of other things, but aren't those things. It's horribly frustrating when you want answers, and I debated even leaving you this comment, but I hate the idea of you out there thinking that MAYBE if you had done X he would still be here (because I can totally reach out from over here with the magic of my words and snatch your crystal ball, YES! And tomorrow I will do ALL OF THE LAUNDRY!). I know what it is to care for a child with Elijah's sort of issues, and for what it's worth I think you did a fantastic job. There are a lot of similarities in Elijah's story and that of my youngest, and in your family's and mine, and like you I wonder, INCESSANTLY...but I just wanted to mention that MAYBE you DID do everything possible. I play The Blame Game with myself and agonize over little moments and seemingly minor decisions and kick my own arse CONSTANTLY with it, and my little one is still asleep just down the hall, so the idea that you are doing the same thing but with such exponentially HIGHER stakes (in retrospect, of course, but STILL--I do that thing where you turn the uncontrollable into the controllable and take the blame in order to keep it from being uncontrollable ALL THE TIME; the clinical term for this eludes me) hit a sore spot in me. It's frustrating how we know JUST ENOUGH to tell what KIND of problem a child might have, but not enough to pin a name on it and concoct a treatment. I was just spouting off to a friend about my youngest's epicanthal fold measurements and she said "that sounds like stereotyping!" and I said "no, there are eyeball slide-rule thingies that they use to MEASURE them, to the millimeter, and ranges that constitute a norm!" and she was amazed and then I said "but since no one has come up with a better explanation I still say I would be THRILLED to be the neurotic mother of a funny-looking kid, and furthermore I would posit that my child is simply so VERY good-looking that it defies medical science!" And we agreed that that would be a very good answer indeed, in our fantasy-musings. I can't tell you the "why" of what happened to Elijah, but I would absolutely defend the theory that he, too, was not "atypical" or even "MPS-affected" but rather too good-looking for comprehension. And the rest is a mystery to me, too. I'm so very sorry for your loss and will admit that the parallels between Elijah and my youngest chill me on a certain level. If you ever feel like answering some nosy medical questions please let me know--our geneticist is stumped and has actually URGED me to come to her with anything I might come across online at this point. But mostly I'm just really saddened to "meet" your handsome little fellow and hear of your losing him all in one day.

terri c said...

I trundled over here from Eliza's blog. God, Elijah was beautiful. I am so, so, sorry he died, and from such a mishmash of things that should not have happened. Forgiveness? Eh, that's an overused word. It sounds as if, when your mother uses it in this instance, she means, "Suck it up and keep quiet." Not fair. And "getting over it?" Another massively overused term. I can only imagine how much you must miss your beautiful son.

Sarah Lindahl said...

Holy shit. I was "next-blogging"
and found your blog and bookmarked it because I liked your post about flying with your kids. (Airlines = assholes, totally true). I was looking through your site and came across these posts about Elijah.

My heart is broken reading about your heartbreak. I am stunned (but not surprised) by the incompetence of the doctors. A hospital almost killed my son who was five at the time and had a broken leg. They insisted on an IV for "fluids" and fucked up his electrolytes almost to the point of permanent heart and kidney damage. Thankfully he had a seizure and the stupid incompetent fools finally saw that I was not just a crazed mother when I kept saying all night long SOMETHING ISN'T RIGHT! It's eight years later and I still want to go in and spray the place with bullets.

Elijah was a stunningly beautiful baby and I am so very sorry for your loss.


p.s. your SIL is a moron.