5/11/04

Again comes the Spring....again comes the day.
'The Season of Grief', to which I have often referred any significant occurrence during this time.

It's been seven years.

7 years since the pediatrician denied the request for admitting him into the hospital. It was 'only bronchitis and not pneumonia'. She was right. But bronchitis can kill a child who has detrimentally developmental issues, and/or hypotonia....and it did. His weakened little body could not possibly come up with the resources required to clear one's own lungs.
And bronchitis did kill.
Kill.
My son.

After he died, someone told me not to make any Big Decisions within a year....and I didn't.
After he died, someone told me that it would take 3 yrs and 3 days to 'recover' from my grief.
After he died, someone told me that I needed to 'just let go'....
After he died, my life took on
a
new)}+
shape.

This is my history.
This is my life.


This is Ours to share or not.


I don't mean to get all.....
morose
or
overly poignant....

But this day was the day I said

'GoodbyeI'msosorryIletyoudownbylettingyoudie......'

And I am still sorry.
Because if a parent cannot keep their child alive, then what worth do they have??


But I am here.
And I am parent,mother,doctor,paper.

I am everything to them, I am nothing.

I have ashes in my cupboard.

I will survive this, because I choose now...

to LIVE it.



I will not passively let this day pass me by.

I will live it.

I will live every moment of it.

Sighting of A Boy

The family walks past the long window and through the door of the taqueria. The mother leads the way. She is undeniably who I first think she may be; her wild kinky black hair and beautifully pumpkin shaped body have not been altered by the seven years which have passed, and she is easy to recognize.
She is followed by her short, shuffling and grumpy husband, and I lean forward to catch a glimpse of the one I want to see so dearly and at the same time am afraid....and in another short, interrupted breath - he bounces in, buoyant in spite of his father's shadow.
He is tall, considering the stature of his parents.
His hair is like hers, and his smile is hers.
He talks animatedly about black beans or pinto; turns his excitement towards the soda fountain. He is seven.

The mother notices me staring and looks at me suspiciously for a moment before a flicker of recognition.
I wait for her to go first.
"You look familiar...do I know you? I know I know you from something....swim classes? The library? Music class?"
I let her trail off before I decide to answer.
"The NICU. We met in the NICU. Our babies were in together."

She looks at my children, sizing them up...wondering...

So I say, "No. This is my daughter. She was not even two at the time. This is my son, and he is four. It was Elijah who was in the NICU."

"Oh yes, now I remember. How is he doing?"
I shake my head, realizing I got myself into this by staring at her son.
I don't think she wants to hear.

The silence with which she waits indicates she is expecting the rest of the story.

"Well, he died when he was thirteen months old."

We go through the usual dialogue.
"Oh wow. Oh. I am so sorry."
"I know. It's okay. It was terrible. We really miss him. But now it's our family history."
"Oh wow. I am so sorry. I don't know how you....I could never....I don't know what to say...."
"So, your son looks great. Congratulations, he's wonderful."
"Oh wow....the NICU....wow. Oh the NICU...I hadn't thought about it in so long."
"Sorry."

I gather up the scraps of my kids' quesadillas, and herd them out the door. When I turn to wave goodbye, her elbows are propped on the table, her head is in her hands and she is staring glassily into the orange booth in front of her.

"I'm sorry." I toss out, by way of 'goodbye'.




I really was.

May 11th, 2010.

Today is May 11th.
Six years ago today, Elijah died.

When I first started writing about Elijah and losing him, these days scared the hell out of me. The anticipation alone was nearly enough to order a 5150. I stumbled from his birthday (3/31) to his death day 5 weeks later, noticing little along the way but the cruel and continuous passage of time.
I was terrified of what the day might bring. What could be even remotely as awful as that day in reality? Nothing.
But anticipation of more grief is a scary thing when you are already steeped in grief. My coping skills were watered down by grief, and chipped away by an unforgiving and full-of-judgment partner.

I did anticipate this day (dead baby day) to be easier than in past years, but I wasn't sure why I expected that. A few good friends asked me yesterday how I was doing, knowing that this time of year has historically sucked for me.
When I was asked, I realized that I was actually fine, because my anticipation of today was not influenced by the fear of being mocked or berated for whatever came up for me.
In the past, if I cried or was sad or depressed on this day, (vividly remembering unsuccessful CPR attempts and images of Elijah losing his breath), then I was 'choosing to be sad' or even accused of 'being ungrateful and not appreciating my live children'.
I am allowed to grieve freely this year, and I'm not even feeling that overwhelmingly grievous.
I miss my baby, I always will, but I am resigned to it being my history. Not fighting the emotions that came with that loss.
And if I am sad today?
This will also be fine.

Mother of three....

Today, my invisible child would have turned 7.
He would have. If he wasn't dead, that is.



For 406 days he shared himself, full of grace, with mortals.

For 406 days, I was his mother.


Some days, it's easier to breathe than others. Some days I don't have to remind myself to draw another breath in, before exhaling everything I have, deflated like an empty shell.

Quiet Observation

"Mama, how old would Elijah be next month if he was still alive?"

"Seven."

"Would he be in a wheelchair?"

"I don't know honey. Probably."

"Would he go to my school? I bet he would."
(note: although there are children of different ability at her school, none of them uses a wheelchair)

"I really don't know, Supergirl."

"Would other people make fun of him? I wouldn't let them, you know. They probably wouldn't at my school, anyway."

This went on for a short while, the asking and self-answering of questions.
I thought about how sweet it was, this dreaming that I had done for years causing me nothing but pain, and here she was....just wondering, just dreaming...no pain attached to her speculation at all. No judgment, just wondering.
I noticed that I shared the wondering with her. No pain. Just wondering for a moment.
How far we have come.

Thursday, August 13th: The day my mountain caught on fire...Again.

The Fire.

What can I say? I had hit my very personal emotional wall the night before. Not wanting to be his neighbor; with him insisting on being my neighbor. The person who 'didn't do anything wrong', even though I have clear memory of that person choking me twice. One person can only take so much, right?
I crumpled into a ball of someone who has had to take too much; I tripped over an upended basket of toys I had just cleaned up, then I threw a toy at a basket. Hard. Bubbles noticed and cried, "No Mommy!", I gathered him into my arms and cried. Parenting Fail.

Bubbles likes closure. We have gone through the following process nearly every day for a week now:

Mama, say sorry for throwing my toy.
Bubbles, I am sorry for throwing your toy. I was feeling very sad and it was wrong.
It's okay Mama, it's not your fault.
(Really, it is, but thanks, sweet thing.)
The end.
(Repeat.)

We read some books (Supergirl was on a sleepover), snuggled and fell asleep early that night. I dreamed of helicopters.

5:30 am, Thursday August 13th: Voluntary evacuation phone call.
WHAT??? Apparently there had been a fire raging nearby for nearly 12 hours. I cursed my broken wifi router for its crappy timing.

10:30 am: Mandatory evacuation phone call.

11:00 am: Giggling inappropriately at the act of packing my baby's ashes in a box, for the second time in 14 months, to rescue them from a fire.
After packing 'The Important Stuff', I hit a wall of 50% indecisiveness, 50% ennui. I had no idea what, nor desire to pack anything more.

12:00 noon: I lock the children inside because the smoke is getting bad. Also, they have taken to shoving random things into the car such as individual crayons and tubes of yogurt.

1:30 pm: First visit from the Sheriff. "Sign this or leave," they said.
"We're just looking for the cat..."

2:45 pm: Second visit from the Sheriff. "Sign this or leave," they said.
"We're just looking for the cat..."
"Sign this or leave," they repeated. I nod.


2:55 pm: Telling my eight year old to say goodbye to her house and most of her belongings.
Leaving our ten year old siamese cat, Ocean, behind - because she ran off, presumably afraid of the sudden influx of air traffic.
3:00pm: "Say goodbye to the house," I said.
"Goodbye, house," they both called.
"Say goodbye to Ocean," I choked out.
"Goodbye, Ocean Kitty!" they both shouted, loud enough for any ornery cat with a shred of sense to hear.

We drove off into the smoke, our car crammed full of chickens and ashes and papers and small plastic objects which my children somehow found meaningful and had shoved into the remaining crevices.

5:00 pm: Moving around slowly, the chickens delivered to a chicken foster home (procured by dear veterinarian friends), unsure which move to make next. I knew I had to pick up the recently discharged laptop, so 'stopped by' to visit the friend who lived a block away from there, as she had been one of the nine people who had called me while packing.
Heidi's house had burned down 18 months ago, unrelated to either fire, but she and her (documentary filmmaker) husband lost everything in 1/2 of their house/office; every archive and each and every layer of thought from which it was collected and compiled.
Her response was that of a seasoned friend and refugee.
Her first comment was, "You know you are welcome to stay here, okay? You know that, right? Whatever you need."
Her first question asked was, "I am going to the store. What kind of alcohol can I bring you?"

We stopped by on Thursday and left four days later. Their kindness, our similarly aged and ironically compatible children, their intuitively perfected assistance...their patience with our inherently early vs. late scheduled kids....all added up to the best spontaneous vacation evacuation possible.


One week later: Listening to my three year old tell the story over and over, to anyone who will listen.
"The fire not burned the house! The smoke make mama sick! The cat gone, but she okay! The fire not burn my house!"

We're going home today, to face the endless cleaning of ash and restocking of walls and shelves. I will ponder each item....should I return it to where it was, or should I just pack it up, for we all feel like leaving this place.

We are whole, but we are scarred. We have all had enough.

Please, Don't Insult Me; I Didn't Ask to Be Here in This Place.

I have heard a few of Xdude's friends and/or former friends express their surprise over the fact that he could be violent or confrontational.

I have heard things such as, 'Xdude was Zen and so how could he have done this?' I have heard that he would never be confrontational.

As Xdude has been charged with and convicted of domestic violence, I find this an interesting and challenging question to hear months later. I expected to hear it at the beginning; I had the very same thoughts myself, as I tried to make sense out of what had happened and how we had gotten there and how, though things were degrading from bad to worse, I could never have seen it ending that way. I could have never, in a million years, expected that he would take me down to the floor and choke me, simply because he did not like and disagreed with what I was saying or doing. Simply because, that time, I would not listen to him anymore.

I do know that none of these people has any clue about what he is capable, largely because I have protected him and our family by not saying anything for years.
There was abuse before. And surprise, it was usually the result of some geyser of refusal of confrontation.
Was it visible? My family knew, as did his, that he had chased me around the house with a two month old baby in my arms, demanding that I hand her over because I was going to fly back east to....see my family.
He was embarrassed and wanted to make it up to me. Eventually, I went back.
Was it visible? Being hounded, berated and goaded for (surprise, surprise, Mr. 'I don't actually want to get a vasectomy -I lied') becoming pregnant with his child; weeks of him shadowing me and demanding abortion and justice, and hoping that I would 'see the light'. There was the attempt to get me to see it; the shoulder shaking didn't produce the epiphany he was seeking. The miscarriage, however, did the trick. I didn't have bruises, and he was so very sorry.
I stayed.

Think about it; there is confrontation in everyone's lives, every day. The refusal to accept that at any level is not a trait of any well adjusted adult. There will certainly be some end result to the dynamic of refusing confrontation (ie, disagreement) in one's life. Add to that, the input of a partner to consider. And children. Dead and alive.

The mere act of disagreeing with this person is, historically, taken as a personal assault; he is instantly victimized and/or disregards the offending opinion.

For two years I have known that I wish to not be under the control of this person who disregards my very existence in his presence. For more than two years I have known that I could not save him from his abyss of depression and self-loathing. I could not free him from his guilt, nor unscrew him from the spiral he had dug.
For two years I have understood that there was no respect and we were teetering on the edge of the abyss - there was certainly growing potential for abuse. I never could have understood the path from passive-aggression to direct attack and violence that was about to occur, but there were many times I was afraid for myself and many more times I was afraid for what he might do to himself.
For two years I did not leave, despite my desperation to do so, because I believed him when he said he would kill himself if I did.
I had children to protect from more grief. I had children to support. I still do.

Each time I asked to leave but didn't, I cemented for him that I do not have a say in my future. I take full responsibility for feeding into his sense of absolute control.

For those who know and refer to Xdude as 'Zen', I ask them to recall how much time they have spent with 'Zen Man' over the past 2-3 years. Let's even go back to when Elijah died - the past five years? For me, living with 'Zen Man' at that time was realistically, Xdude hiding behind the veil of accusatory Buddhism so that he could mock me: "You are grieving our son because you choose to grieve. You choose your sadness."

You all know about the statistics of dead baby families, right? They are pretty grim.
If anything, that dead baby glue held us together for longer than it should have. We tried hard to not fall into that pit.


But I speak to an entire community who crops up when domestic violence occurs.
Please don't delude yourselves into thinking that this could not have happened, because it did. And the punishment is what some might consider severe. For a reason.
The biggest mistake I made, was that this was the first time I reported it.

So if you think that it would not be possible for Xdude, (or your hiking buddy, or your old college friend, or your friend's brother, or 'fill in the blank') to become confrontational and violent, I say that you are incapable of believing that things and people change and bad stuff happens all the time.
I wish it had not happened, believe me.
It happened.
I wish it had not ended this way, but peacefully, as I requested for no fewer than 24 months.



But it is what it is; it is not what you remember.

New Post at Hopeful Parents

I wrote this.

Over here.

It's not about dead baby cake, I promise.
Just about dead baby birthdays.

Happy Birthday Tiny Boy

Elijah Brooklyn
3-31-03 - 5-11-04

We miss you so much.

Dead Baby Cake

So, I have to write this. I am also going to remind a certain someone that she is not being made fun of here, rather, has given me some comedic relief material in a dry period.

I was having a 'chat' with my innernet friend and one of the things I love about this particular innernet friend, is her dark humor and ability to climb into my brain from across the country. This time of year is, plainly, DARK for me. To cope with this season, I have often resorted to what some might call inappropriate humor.

So, I happen to mention to innernet friend (IFriend) that someone had suggested that I celebrate Elijah's birthday by making a cake and having a little birthday party.
Did that suggestion make me mad?, that someone had wanted to know.
No, I said, certainly not mad! I had definitely heard of people doing that....it just wasn't.....for me.
Of course I couldn't get it out of my head, and morbidly kept imagining just how that would take shape, this birthday party for my dead child. I suppressed some inappropriate giggles from some friends who I know are challenged by my annual bout with morbid humor....but of course I can't be kept down. I am a VIRGO.

So, I had to share with IFriend.

me: so, the idea was that i would have a party for him make a cake, get the children involved, have a birthday party.!!!!!

IFriend: WHAT! MAD?

me: oh no i am not mad

IFriend: a CAKE?

me: i have heard some people do that
IFriend: I would freak out making a cake

me: just NOT FOR ME

can you imagine?

IFriend: no, I honestly can't

me: MAKING A FUCKING CAKE

IFriend: it's macabre - I mean, you know, not that there's anything WRONG with it, but...not something I would do
me: there's the issue of putting the baby inside the cake, or just what to write on it...

i mean...okay....happy 6th birthday elijah....no that's not right....happy 1st birthday AGAIN elijah....no still not right.....ummmm....happy birthday in heaven my little angel?

IFriend: pukes - personally I would just fall the fuck apart making the thing and hate the whole process

me: has to maintain sense of humor right now

IFriend: yeah
me: a cake. yeah, i mean a lasagna maybe...but a CAKE? heh

IFriend: like "we're HAPPY our kid is dead"

me: i KNOW

IFriend: "see look, a CAKE"

me: HAPPPY DEAD BABY CAKE!!!

IFriend: keels over... lord

me: that isn't right either - you see the problem.

IFriend: yes - I mean, what to WRITE on it alone is a blog entry...

me: oooo - and we could SING TO HIS ASHES OF COURSE!

IFriend: put a party hat on the urn

me: that would rock, but....who blows out the candles?

IFriend: just take it outside and wait for the wind to blow the candle out...and be like "look kids, your brother made a wish!"

kids are gullible, they'd totally buy it

me: HAR! they TOTALLY WOULD!

End of Conversation Advice:

IFriend: I think doing some kind of non-deadbaby-activity would be much better than making it a Deadbaby Day...too tempting to wallow that way.


Indeed. Thank you, IFriend. You know who you are.

There is nothing poetic about dead baby anniversaries

Pissed.

You would think that I would just get it by now, not have any expectation, and reduce potential for being pissed.
But no, here we still are for some reason, and I'm pissed.

I ask for nothing, or so very little. Yet I am wrung out.

For just a few days out of the year, just a few predictable days, I only wish (not even ask) that he could think of someone but himself. To have the kindness to set aside some resources and time to weather the storm with me. To not pretend to maintain his well honed water treading yet try and drown me should I come swimming by.

There is so much wrong, not the least being that the glue that adheres us to one another is made of a dead baby. A dead baby who won't have another birthday on March 31st.

But instead of my wish, what I get is illusion, oppression, and a person who walks into a room to rip a childrens rainbow off the wall just because it is there.

I swim alone, because I can't risk drowning. And I close my eyes, because I can't watch.






I know this is incredibly depressing. Maybe after reading this you will forgive me for the Happy Dead Baby Cake post which is in my head and surely to worm its way out.

Five Years Later; Nothing Poignant in Repetition

[Cross-posted here.]

Today marks the first day of the fifth year of grief season*. I would call it 'grief month', but when your kid dies just five weeks after their (only) birthday, all of those important anniversaries like birthday and deathday run together, and calling it 'grief season' seems a bit more accurate.

I realized it was coming last week - it is a thought then it becomes a distant flickering light and then with a pop and crackle it explodes in front of me.
I am a veteran now.

Part of the pain this year is in the number. Well, there is truthfully always pain in the numbers; the numbers represent what never was, what never will be. Each birthday becomes the number of years he has been gone plus one, the age he was when he left us. Each birthday is a reminder of the age he will always be; a widening gap and stark contrast to the age he should be.

Five years.

There is fear in that number - a fear it is so far away - it makes Elijah farther away too. There is fear in saying that number aloud. Fear in the anticipation of how it will be received. Fear that you will expect too much from me, fear that you will quietly judge me: the mother who still grieves her child so deeply. Five years later.
Five years later and still so much is ragged and torn since he left. Five years later and the wound returns to be examined and the edges painfully lifted. Peeking into the same swirling abyss, searching each year for some previously unrevealed meaning. Something to make sense out of it. Still searching.


How does one make sense out of death? How does one ever make sense out of connecting the following thoughts: Oh shit that bronchodilator treatment didn't work...Oh that sound he is making isn't good....We need to get him to the ER, call the pediatrician....OH MY GOD HE IS NOT BREATHING.

Sure, I got rid of the living room rug upon which I administered CPR to my son for forty minutes.
That helped a little.
But even with the rug gone, the ghosts are still there. Not his ghosts so much as the ghosts of that evening, the ghosts of our absolute worst fears being realized, and the ghosts of failure.

Baby's breath is so intoxicating, so very unique, that a flower was named after it.

His last breath hangs in my home like the ghost it is, not the elixir it was.





*Grief Season: the period of time lasting from the weeks leading up to March 31st (Elijah's birthday) through but not limited to May 11th (Elijah's last breath), always including Mother's Day.

In Like A Sneaky, Cave-Dwelling Lion

I just realized that February is almost over, and greeted that thought with a cold chill and deep dread.

And then I responded to that thought with, 'Come ON get over your bad-ass moping self already. You can't have an annual springtime depression. If you can see it coming, you can avoid it.'
And then: This is not a head-on collision anymore.
And then: Deja vu.

Seriously. Let's look at the track record here.

The short story is:

Elijah would have been six years old on March 31st, 2009.
But he won't.

So if you are looking for another train wreck raw experience, hopefully evolved....then perhaps you have come to the right place this month - hang on!
If you are one of my thirty one fourteen faithful (OR RANDOM) readers who has given up on me because I cannot seem to:

• post regularly
• post anything of content
• post about life
• post about reality
• post enough about death
• stop posting about death
• do any of that shit right

...well then, welcome! Welcome back wholeheartedly, because all of those things are true, which makes you all right. Instead of me.

And this next month is sure to be a lovely walk through the blacks and browns of my poo-filled emotions. And the lovely lilacs and blues and vanillas which are Elijah.


Hang on.

Got My Head In His Cloud Again

I recently found a huge file of photos of Elijah. I had either forgotten about them or convinced myself that they didn't exist....who knows.
I can hardly describe what finding these has felt like....a gift...a peace....a stirring....a mindfuck...another unwanted but polite visit from Grief....

A mother.
I was his mother too....wispy shadows swirling...his life flickered by....his scent hangs on my shoulders.....my head in his cloud.



The gifts are in the flickers; each one gifts me a memory....we had some fun with that baby:







Missing him doesn't quite cut it on these days.

Me vs. Grief: Version 4.6

In Elijah's lifetime, there were a finite number of pictures taken of him.
There were quite a few pictures, but he lived for thirteen months and eleven days.
So there are thirteen months and eleven days worth of pictures. Considering not many pictures were taken of him at the end, when he was sick. It never occurred to us that it could or would be the end.

There was also video taken of him. This was before we had a digital video camera, so we have some tapes.
I have never, ever watched any of that footage. Not one second.
I have thought about it, I think I will do it, I think I am ready.
Then I conveniently forget.
Until the next time.

Right after Elijah died, I was incapable of even looking at his pictures. The day that he died, I came home to pictures of him all around my house - pictures of him alive. Pictures that taunted and mocked me, reminding me only of the fact that he was - gone.
A photo of his shining blue eyes reminded me that they were closed and unshining. A picture of his chubby smile reminded me of giving him mouth-to-mouth CPR for 45 minutes. A picture of his platinum hair reminded me of cutting a lock to drop into an envelope (which, to this day, remains 'lost') just hours after he took his last breath.
A picture of his life reminded me only of his death; of his expressions in death, of the panic, of the failure to revive him, of the fact that it was all over. Forever.

And then, as I would reach to turn the picture face-down, I would sob with guilt. What kind of mother looks at her child's smile and is reminded only of his death? What kind of mother could cradle him in astonishment as he took his last breath, cradle him just hours later while the shock overcame her that he was just an empty shell, and then, just a few hours later, be unable to look at his face?
Grief of this magnitude is difficult to navigate, it is suffocating - it is breathing in thick mud, it is impossible for the beholder to comprehend, and it is overwhelming (think catatonic) to feel. It is pretty much like a head-on collision with a large truck that doesn't kill you.
Sadness that runs so deep, it carries its own albatross of grief.

It has been four years and six months since Elijah died. That itself, seems unimaginable.
Not once have I been courageous enough to view any of that video. I know it exists.

I imagine what it might be like - to watch him wave his hands around again, to see him reach for his favorite toys, to watch his bright eyes dart between us and the fairies, and oh! to hear him coo and sing...
...but not be able to reach for him, kiss him, hold him...

I don't know. If I cannot write those memories without tearing up, perhaps I am not ready to see him.
I wish I could say I was strong.

But you can see, that really, I am not.

Sunday Link Love: When Children Die (Dammit!) Everyone Loses

I know that many of you who read this blog have experienced great loss.

I know that some of you have been touched by or appreciative of advice or personal suggestions I have offered in the wake of someone's death.

I know that many of you know more than I do, and can help my friend right now.

Her daughter's friend and schoolmate died yesterday.

Please stop by and offer some words.

A Very Unexpected Gift

Today, as if the universe sensed I needed something, I received a gift.
I received an email from a woman named Kara. She said that she had been lurking for a while, and that her son was born still, one year ago next Monday. I wanted to reach through the words for a person and hug her when I read that. I wanted to find a way to find her and give her something, not sure what, to help her get through next week.
But she went on to tell me that she had had a dream she needed to share with me.
A dream about Elijah.
People often voice their concerns over the potentially negative effects of posting pictures of our children on our websites. Today I can share with you a beautiful and unforeseen result of having posted the pictures of Elijah: He was recognized in another person's dream as being Elijah. And while she had only pictures of a small baby in her mind, she dreamed about my son, who was recognizable to her as a radiant, laughing toddler.
Some believe that all dreams are prepared for us by our own subconsciousness. I am not one of them.

Kara prefaced her email with a kind disclaimer: she had not gotten too far into my archives and was not aware of my beliefs or background. I found this to be respectful, but in the end, irrelevant. My beliefs are not relevant to her dream; I have no reason to believe anything other than the dream, and thank her for sharing it with me.

"I just recently found your blog, probably a couple of months ago, and I have only been able to go back and read so much of it in my spare time, so I am not 100% versed in your beliefs, background, etc. But I felt the need to reach out to you because I had a dream about your Elijah. I don't know what it meant, and I don't know why because I hadn't checked your blog for a few days, and what I had most recently been reading about were your other children, and not specifically about Elijah. But, I wanted to share with you so you know that he is in many people's lives and touching people's hearts all over, even though his time with you was too short.

I can't remember how the dream started, but all of the sudden, Elijah was there, in front of me. He didn't look too small for his age, he didn't look like he had any trouble growing or thriving, and he was very healthy, and he had been running around playing. He looked about 2-3 years old: chubby, rosy cheeks, big beautiful curls in his hair, his eyes sparkling with joy and laughter. He looked so happy and amused and just wonderful; almost like he was about to start laughing hysterically. He was wearing khaki corduroy overalls, and a blue and green long-sleeved shirt...not sure why I recall that detail...

I don't know if he came to me so that I could tell you about how he is. Or, I often wonder if he came to me to show me that where he is now there is nothing but healthy, happy children. Because my son was so sick prior to his birth, I wonder how he is now, and maybe Elijah was trying to assuage my fears. I can't be sure. But whatever the reason, I want you to know that I saw him, and he was just beautiful and healthy. And whatever the message, I am grateful he stopped by because he made me smile and he gave me hope."

I have read this very slowly, three times.
I continue to read it slowly.
I asked her if his shirt was striped. It was. So I knew it was Elijah.

Each time I read it, I experience something I never could have without this gift: The vision of Elijah as a healthy, robust, active, growing, and alive child.
The gift of knowing that his life continues to touch others is immeasurable.

Thank you, Kara.

When Children Die: More Questions

Lori, who writes here in memory of her daughter, and here about moving forward, asked me the following question, and it is certainly something that I also deal with frequently. Definitely deserving of its own post:

I was attending a planning session for a fundraiser to benefit the
Children's Cancer Association last night and of course told them about my
daughter. This inevitably led to tears (not mine surprisingly) and
multiple "I'm so sorry's" and lots of awkwardness. Have you found a good
response to "I'm sorry"? Cause thank you is not cutting it for me.
It's like they expect me to say more and I just don't know what to say.

This is what I call: An Awkward Moment. But these Awkward Moments happen all the time. Nearly everyone has the same reaction upon hearing about a child's death: shock, sadness, disbelief. But after a year or so, it becomes difficult to hear every time. Not so difficult that we will ignore that s/he existed when you ask us how many children we have, but difficult in the tedious and somewhat depressing sense. And then we thank you for your sympathy, which is appropriate, but then the sadness and head-shaking in disbelief go on for another moment and we feel almost as if we need to comfort you and tell you it's okay.

When I tell people my son died, the usual (and completely appropriate) response is extreme apology, offered within hushed tones.
"Oh I am so sorry. How AWFUL for you and your family."
This is kind, this is meaningful. But guess what? My little girl is right next to me listening to HOW AWFUL IT IS FOR US. And I gesture to her and smile.
Then I address the person who is offering the condolences.
"Yes, it is every parent's worst nightmare come true. But it is also just our family history. It happened. Her brother's name was Elijah, and she remembers him."
Almost always, this evokes some happy memory or delivery of information about Elijah-the-living, that my daughter (now age 7) feels compelled to share.

If my daughter is not around, I pretty much say thank you and remind people that we like to remember him. It makes us feel better.

For us, I guess part of it is the de-sensitization process; the Coping With The Reality, tragic or not.

If the words 'my dead son' continue to evoke ONLY tragedy, then my daughter has far too much to lose.

When Children Die: What to Do. Or Say. Or Not.

A friend called today with a few questions. Her friends in Seattle lost their six month old baby yesterday. Suddenly. Inexplicably. While she was at her first day of daycare. The baby wasn't eating, wasn't feeling well....when mama arrived she saw the paramedics....it was too late. Their baby died.

My friend wanted to know...should she go? And....could she help, how could she help, should her children come too, what should she say, should she say much, and why was this causing some strange emotional clog for her, my friend?

We talked for a while on the phone; when we hung up I felt my own emotional upheaval - so sad for this family, so angry at the sudden loss of this baby girl, but gratified that I could offer any helpful words.

There is no manual for what to say, and one extremely good reason for this is that no manual would ever work for every family, every encounter.

But because I have a big mouth and am a self-appointed public service educator, I am going to go ahead and tell you what was helpful or memorable for us in the immediate aftermath of Elijah's death:

• If you can visit them or attend the memorial service, do. If you can offer your presence, it will be appreciated. Even if you cannot offer any words at all, just be there. Just that is enough, because we (the parents) know that there are no words.
• If you can offer words, do express your sympathy, your disbelief, your extreme sadness. There are no effective words of consolation to offer -none. When a child dies, everyone loses.
• If appropriate, do say 'this is so fucked up' to the parent(s). It is probably what they are thinking anyway, and may feel comforted that you can say it aloud with them.
• Do allow room for anger. Sadness is to be expected, and sometimes the anger is a delayed reaction, but for many it is immediately interspersed with the extreme agony, and sometimes is a hard emotion to justify or accept. I felt very ripped-off and angry, but I also felt like it was a 'wrong' emotion to be experiencing at the time.
• If there are other living children, do bring them gifts. Any small new shiny object that captured my daughter's attention and distracted her from noticing how incredibly sad and checked-out I was at the time, was greatly appreciated and remembered. The day Elijah died, a friend came over with a new doll for Supergirl. One observer thought it a bit morbid; bringing a baby doll over to a girl who had lost her baby brother. They were wrong. It came with clothes and accessories and kept her interested for blessed minutes, maybe hours...I really can't remember. Another friend overnighted a package to me which contained a doll and some small games for Supergirl (which I still have and remember their source) and books about loss and grieving for me. I still have never read one of the books, but the thought and desperate desire to help that went into that package was palpable and memorable.
• Do bring food if you live nearby, and/or organize a community food drop-off and/or freezer for the family. Something I will never forget as long as I live, was one of my dearest friends driving up our mountain only hours after Elijah died. Hours after we had retrieved our daughter from her house, leaving there with one carseat empty. She came bearing at least three grocery bags full of pre-made salads and ready-to-eat gourmet grocery food. She sobbed as she stocked our refrigerator, "I'm Jewish. We feed people. I don't know what else to do." We would never have eaten anything until our family showed up if it had not been for her. Seriously.
• Do go to the funeral home with the parents if they want you to (especially for family members and closest friends). You may think it is a private meeting meant for just the parents, but they have no idea what they are doing and could probably use someone nearby to hold them up or offer them a valium when the funeral director asks them: "Cremation or burial?" Also helpful if someone can just write that damn check for them. Our cremation bill was not at all on the high monetary end, but having to see that check to the crematorium come back in my bank statement was agonal.
• Do delegate responsibility to others you see who wish to help and appear to need direction. The last thing you want to ask of the parents is any sort of coordination efforts at all.
• Do not bring a child who is near the same age of the child who died unless you are specifically asked to by the parents. Really. Especially with babies, and I am not kidding At All.
• Do smack politely intercept the person who may try to violate the above suggestion. Offer to hold their child for them so that they may offer their sympathies and then leave.
• Do not repeat useless and meaningless platitudes just because you have heard them in previous similar circumstances. Unless you are unfortunately accustomed to frequenting the funerals of children, you have never been in similar circumstances. Examples: S/he is in a better place; (God) never gives you more than you can handle, etc...
• On another note here, because this is a whole separate post (that I believe I have written in several segments already), but if the child who died was a child with special needs and not dying a horribly painful death, then I cannot stress enough, DO NOT EVER suggest that the death was a blessing for the child or family in any way. EVER. These are the most insulting words ever: they imply that the child who is lost was loved less than your own (or their own) 'typically developing' children. Do not even hint at or suggest that there is relief of a burden lifted. EVER.
• Do not ask the parents if they are going to 'have another baby'.
• Do not tell the parents 'what you think they should do' regarding having another baby, waiting to have another baby, or not having another baby. Actually, don't even utter the words 'another' or 'baby' and you are probably safe.
• If you are close with this person, do call them after the memorials or funerals are over; after their friends and family have left, after the initial aftermath. There is much loneliness ahead, regardless of the number of people around them. And the reason I said, 'if you are close' is because I mean you need to call her/him every day or every 48 hours. And for months. You should not demand a conversation, just leave yourself open for one and let your friend know you are there. This 'small' act by a friend very possibly saved my life more than once.
• Do not tell the parents that you 'really should get together more', or that you 'want to help' if you: can not, will not, are too hurt and afraid yourself to be of support, or just live too far away for it to be feasible. It's really okay if you are unable. Like I said, when a child dies, everyone loses. And everyone feels lost. But disingenuous offers are just that. Disingenuous.
• Do not tell the parents that they are 'stronger than you are' or that 'you would not be able to get through this'. While the good intention behind these words is obvious, they fall into an open gaping wound and come across to someone in a very sensitive place, sounding more like, 'I cannot believe you have not killed yourself yet. You must not love your child as much as I love mine. For I would not be able to go on.' Also, the 'stronger'? Bullshit. Nobody wants to have to be that strong. Cry your fucking hearts out. A kid died. Let your legs buckle with the blow of it. 'Strong' is for fan belts, triathletes, and the airplanes which carry me up in the sky.

• Do ask me if you have any questions...or helpful hints of your own.

Edited to add reader suggestions:

• Do be willing to undress the person who is grieving if she passes out drunk, and/or put her children to bed for her. Thank you, Squid. Very important and realistic information.
• Do consider carefully before you send flower arrangements or live plants, as Julia mentions: One thing I would add is that many bereaved parents I know had a hard time with the flowers that people sent to them-- they felt like the flowers needed tending to, like letting them die was another (small, but somehow significant) loss. So it might be good to try to figure out how the parents might feel about that before sending. Two people sent us edible arrangements-- these are cut and decorated fruit baskets arranged to look sort of like flowers. You'd think it would be morbid to eat those under the circumstances, but it wasn't. It was strangely satisfying to pluck things off and consume them. - Indeed. Thank you, Julia.
• Do not, in the months following, frequently place your baby on the bereaved mother's lap, saying 'Here! You need a baby fix!' Unless the mom grabs for your baby, no she doesn't. And you're making her feel very awkward about hating your baby on her lap.
• Do ask everyone you know if they have any friends or family with a vacation home they could offer to the family. Chances are, the family will want to escape for a while after the memorial. Cheers to Lori for reminding me how incredibly important that one was/is.
• Do show up and clean the floors, tub, or do laundry. Thanks, Tricia.
• Do not clean everything of the child who died. Do not clean anything or put it away unless the parents ask you to. (I did. I asked others to put his things away for awhile.) You do not want to remove every last trace of this child's scent from their lives. Thank you, Bree.

When Children Die; (insert appropriate phrase here) (i know, there isn't one)

Please excuse the delay in the long-overdue 'HERE are all the super-great things about Blogher, no really - stop looking at that other thing now' post. It will come tomorrow. ((hopeful))

I love all of you for visiting and your comments are making my day. And thank you for that.

But forgive my absence and pensive/broodiness..
Listen Up:
Of all the panels I attended at Blogher '08, the one most touching and near and dear to my heart was the one about 'blogging about our children with special needs'.
[Thank you, Squid]
Each woman/mother on the panel was a model of intellect, sensitivity, insight, and strength.
One of these mothers is Vicki Forman, whose son, Evan, died two days ago, in a sudden and devastating loss.

I wish for her family that nobody has the audacity to ever, ever imply that his death was 'for the best' or that he or his family was 'spared' in any way.
Because I will mess them up.
Seriously.

Please send them some love.


And for now, speak softly.
And hug your babies close to you.
Very close.