What Sarah Said

Here’s my feel good reading list from the past year:
Growing Up in Heaven
Broken Open
When Bad Things Happen To Good People
A Broken Heart Still Beats
When The Bough Breaks
Conversations Between God and Man

Ok, let’s also include The Girl With The Dragon Tattoo and The Girl Who Played With Fire., about half a dozen food magazines and Us Weekly.

In the past nearly two years, Michael and I have attended a support group but I am thinking of checking it out (disclosure- I think Michael wants to go because he leaves the letter from Tomorrows Children's Institute which we receive monthly, out in the open) for several reasons, including that I want to know how other parents go on living in their community or perhaps they don’t, my informal poll of sorts. We always said that if Sylvie told us that she didn’t want to leave Mountain House (aka Vermont), we’d gladly obey. Perhaps this is her way of telling us. We think about it constantly so in the meantime, we are spending as much time possible up there until we gain some more clarity. Sometimes I think our friends and family are annoyed by our spending so much time up there but really, where would you rather spend the summer or holidays? Traffic jams on Rt. 17 vs. Rt. 100? Exactly!

For those of you who know me well, you’ll know that I’m a very private person and in return, I am insanely respectful of others’ privacy. But… I do constantly wonder what’s going on in Michael’s head because sometimes he looks just so sad. I asked him how often he goes to the cemetery and he said, “A lot-- maybe too much. Several times a week?“ That’s a lot. I had no idea. I go often too. We go separately. So a few weeks ago when I was cleaning up the basement, I found his black Moleskine notebook and read one page-- He’s mad. Furious. Sad. Despondent. He is driven crazy on the train listening to people talk about bullshit. Hence he drives mostly now. He also knows I would like to have another baby and yes, hopefully a little girl. He wants to name her Sarah, provided that we have a girl as it would not make a good boys name, after the Death Cab For Cutie song, “What Sarah Said” which if you don’t know the song, it’s about finding true love by sitting at the bedside of your dying one great love. It completely breaks my heart to know he feels so broken or that he doesn’t want to share his feelings with me sometimes for fear of upsetting me. In sickness and in health. Hearing that song makes me sob because I can so vividly remember every single moment of November 28th into the early hours of November 29th kind of like how the song describes:

The ER. General Pediatrics. Corner Suite. Fucking isolated corner suite where time stood still and Michael watched Sylvie stop breathing, and because , well I still cannot write it down here. Then to pediatric ICU where as I wrote before Sylvie passed away, sick kids get better and other sick children never go home. I never dreamed we’d be one of those families. We didn’t understand what was going on because the doctors were working so hard to save Sylvie’s life so we thought that it was actually a possibility. Dr. Mark Siegal from Pediatric Critical Care was hopeful. When Dr. Harris, Dr. Rosen and the rabbi arrived we were still hopeful but I guess this was the moment of truth. I remember telling the rabbi that November 29th was Michael’s 40th birthday. He told me that whether Sylvie passed away on the 28th or 29th, Michael’s birthday would forever be filled with the same misery and sadness. I love him for his honesty among other things. Dr. Rosen was wearing his puffy ski jacket. He was celebrating his wife’s birthday, I think. Dr. Harris buried his face in his hands. I had been in the midst of ovulation induction which kind of like IVF but during the evening, I began hemorrhaging blood and the nurses had to run up to the maternity floor to get me some pads while I sat on a stretcher outside of the surgical area where they were trying to further determine what exactly was going on inside our beloved child’s teeny body. She had opened her eyes when they put the oxygen mask on her shortly after 6 that evening. She looked Michael in the eyes when he said to her that “everything was going to be okay.” She nodded at him. She closed her eyes. And never opened them again. His mom hovered in the corner. Hours later, when we held Sylvie in our arms, wrapped in the rainbow blanket she loved so much and wearing the princess dress Jette had given her for her birthday, her physical weight has been implanted in my mind forever.

You have no goddamn idea what it’s like. I hope you never ever do. I've learned to hate the phrase "We are given what we can handle" which carried through me Sylvie's illness but now renders me apoplectic. So when I have a faraway look in my eyes, I am usually thinking how trivial everything is. And yes, I do truly appreciate every moment that I am with Spencer & Ryan and that I've been part of their "firsts." And in as much as I am searching for meaning and the desire to be meaningful, I can't say that I miss working one bit. That might change but for now, unless it has "meaning," it doesn't interest me much. I started crying during yoga this morning because I had a flashback as to when “they” were going to take Sylvie away and I was worried that she was going to be alone and scared in, um, the hospital morgue. I’ve never ever said aloud or typed that word. And hopefully you will never ever have that thought or fear either. I thought, what if she wakes up and we’re not there. She’ll be scared. The rabbi, Dr. Harris and Dr. Rosen tried to give us some reassurance or sanity at that moment. Randy, the PICU nurse, was kind of a friend. He was friends with my friend Ann’s then-nanny from nursing school. So it sat a little better with me that he was there. I have to imagine when he went home the next morning to his wife and newborn baby that perhaps he shed a tear or had a drink or two.

We’ve lost a bunch of friends and either strengthened other relationships or made awesome new friends along the way. I supposed now that we don’t have a daughter in class with many of our former friends’ kids perhaps it limits our interaction although some of our newer "closest" friends have kids a decade older than ours. The guys just can’t emote so they totally ignore Michael. From daily texts about baseball and football to static silence. Michael and I talk about this more because it drives me crazy although he is no longer bothered by it. I should be happy because I get to go to more Yankees and Jets games now that he's been iced by a few former pals. Michael drives to work most days unless his pals John or Simon will take the train with him and shield him. They are so compassionate that I am thrilled he has their comraderie. And Andy of course who like his brother from another mother. I’m at the point where I take these confrontations head on. Someone says, “Hey Audra, you must be busy, I haven’t seen you,” I just put it right back on them. It kind of dictates our social lives, shopping patterns, etc. Michael hides at work when he sees a few folks coming in (on the closed circuit cameras). Then again, we’ve lived here for nearly four years so it’s kind of like entering your senior year of high school. I suppose friends shake out regardless of, say, your child dying. Many of our earlier friendships and new ones are stronger than ever. I do feel weird telling new folks I meet that our daughter passed away because it obviously changes the tone of the greeting. Hey, nice dog, cute boys…. SILENCE.

The past year with baby twins, we need a different kind of help altogether. And our friends & families from near and afar were always here to pitch in, hold babies all night long, grant one of us leave for... baseball playoffs, yoga, a night out here and there. Even our friends who don't even have kids! For this I am grateful.

Someone hugged me at Michael's mom's wedding last weekend and said to me, "You are VERY lucky, Audra." And I looked at her dumfounded. I said, we are both lucky and unlucky. I was a little puzzled. It came from left field. Don't tell me that I'm lucky.

On a separate note, I realize that different things make different people happy and that MIchael and I might have a criterion-to-be-happy list that is very different from most. What I mean, is that I don't discount someone else's happiness just because they haven't walked barefoot over hot coals. For example, I'm jealous that my mom can find happiness in going to every Chico's in a 40 mile radius because they carry different merchandise. That makes her HAPPY. Some days, mine takes a little more work. Other days, all it takes is a lovebite from Spencer on my back fat, a blue bird sky or an insane bumper sticker in the Whole Foods Parking lot to make me giggle. Surely we have happy moments, especially thanks to Spencer & Ryan. Sad moments regarding the Yankees and the Wisconsin Badgers not reaching their potential this season!

I told Michael the other day that I think most of our friends and family think that because Sylvie had been sick, we had been a little prepared for this? Or that perhaps they think she became suddenly sick and passed away because that’s what I tell people. But there was chaos. Utter chaos. And finger pointing. And more chaos.. And where’s the doctor whose name I have never typed here but I google his name every now and then. He pat Michael on the back as if he had our backs. As if we had a relationship with him. Fucking asshole. Don’t get sick on a holiday. Michael watched Sylvie close her eyes forever. And that is very hard for us to bear for the rest of lives. I guess it’s PTSD. I may practice a lot of yoga, try to incorporate it into my daily life and am even told that I am a very positive person (which I don’t really see) however it doesn’t lessen the pain or anger I feel. And I think I’ve really expanded my knowledge base about the survival of the human spirit which I wholeheartedly believe in but it doesn’t justify one bit that Sylvie is not here this year dressing like a character from The Wizard of Oz like the rest of us. When I watched Michael's mom walk down the aisle this past weekend and the adorable gaggle of flower girls (grandchildren), I looked at Michael who was just as teary as me because Sylvie should have been there, too.

We went pumpkin picking on Sunday with my brother, sister-in-law, and kids. Megan and Sylvie were pals. My brother told me that Megan was very concerned the day before that if Sylvie doesn’t age in Heaven, will Sylvie recognize her and want to play with her when she gets there as an old person. Something like that. Megan turns 5 next month. That’s heavy. I remember when Sylvie and Megan went pumpkin picking. Sylvie was at the height of her not sharing phase. We thought she might throw a pumpkin at Megan. However the sight of them sharing pumpkins and having a grand old time was precious. I remember it vividly, right down to what they were wearing. Perhaps because I have a zillion pictures from that day.

When I see Halloween decorations of headstones that I used to think were cute, now I think, “Fuck man, I’ve got my own little headstone that scares the shit out of me and my husband twelve months a year, not just Halloween.” Only ours is surrounded by mums, a Hello Kitty painted pumpkin, shells from afar and pinwheels.

What Sarah Said
And it came to me then that every plan is a tiny prayer to father time
As I stared at my shoes in the ICU that reeked of piss and 409
And I rationed my breaths as I said to myself that I'd already taken too much today
As each descending peak on the LCD took you a little farther away from me
Away from me
Amongst the vending machines and year-old magazines in a place where we only say goodbye
It stung like a violent wind that our memories depend on a faulty camera in our minds
But I knew that you were a truth I would rather lose than to have never lain beside at all
And I looked around at all the eyes on the ground as the TV entertained itself
'Cause there's no comfort in the waiting room
Just nervous pacers bracing for bad news
And then the nurse comes round and everyone will lift their heads
But I'm thinking of what Sarah said that "Love is watching someone die"
So who's going to watch you die?..