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I struggle with how do we mark Sylvie’s birthday and other anniversaries. I read somewhere that as a society, we celebrate when a ship comes home, not when it sinks (except perhaps when the sinking of ships started world wars). Anyway, Sylvie should be turning five today, May 12, and we should be celebrating with her here on this earth. Toasting to her potential reached thus far. Potential reached at 3.5 years old. We feel totally robbed and that Sylvie was robbed of reaching her potential, too. I used to keep a red journal in the car and when Sylvie was a baby, I’d write her letters with the intention of presenting it to her when she was older. I’ve long since misplaced the journal but on the eve of Sylvie’s fifth birthday, I decided to write her a birthday letter.

Dear Sylvie,
Today is your fifth birthday and like any other day, your dad and I are so proud to be your mommy and daddy. We talk about you all the time, look at pictures of you a million times a day and reminisce (fancy for "talk about things that happened a long time ago") about all the places we went to and things we did. And sweetie-- sometimes you gave us a very hard time! But we love you so tremendously just the same. Even when you would tell people that you don’t like them, we are proud because you are truthful and we don't like everyone all the time either.

We wish you were here for us to celebrate this special day and I personally wish that I could be making “Sylvie’s Fifth Birthday Greatest Hits” to share with your friends. I’m sure you would love Sleigh Bells, Peter Bjorn, Lady Gaga and Enrique Iglesias. I have a feeling you would also like the Black Eyed Peas in which we’d have to have our first grown up talk about “good music” versus “bad music.” Your auntie Jodie would have given you something from Miley Cyrus. Auntie Polina—something fabulous and fancy that you’d wear for a week straight. Tita Cindy—something custom made from Etsy. Megan would have given you a new bag of marbles because I keep telling her that I don’t know where yours are. Grandma’s and Grandpa’s—your first American Girl doll(s). Jette & Nevada would have made you something and Samantha would have picked something out herself.

But you’re not here. And it’s your birthday. I can only imagine what you are wearing. Polina’s turquoise dress which you wore for a week straight in LBI. Samantha’s polka dot dress or one of the three matching dresses you both wore constantly. Or the pink plaid silk dress from Hanna Andersen which I had been saving for a very special occasion. Not your funeral.

Daddy would have ordered a special cake from Ciao For Now plus mini cupcakes although Cindy brought over Baked By Melissa ones for New Year’s and I know you’d like them better, especially the tie-dyed ones.

Spencer and Ryan hear about you all day long. I know you visit them because sometimes they get this joyful look in their eyes as if there is someone else in the room making them smile and I know you are there. They would have given you the new Disney princess movie on DVD, “Tangled.”

In 3.5 years, you gave your daddy and me the ability to be silly, to act compassionate, to name all the Disney Princesses, Barbie, too! To sing badly out loud all day long, to cry in public places and be okay with it, to put our family before anyone or anything else and to love like never before and never since.

Make a wish and blow out your candles.

Strides For Sylvie 2011?

It’s the time of year for Strides For Sylvie and I’ve been tardy posting any information about what our plans are. My apologies.

Strides For Sylvie has raised nearly $50,000 for the Tomorrows Children’s Fund at HUMC via the Ridgewood Run over the past two years, a special concert and the various raffle prizes. This does not count the hundreds of friends, family and co-workers who have donated monies to TCF in honor and memory of Sylvie.

This year we are letting team Strides For Sylvie loose all over the globe. We've received worldwide heartfelt condolences and outreach from friends, family, former co-workers, total strangers and scores of people whose lives Sylvie enriched. So whether you live in Ridgewood, New Jersey and are running the Ridgewood Run or Katmandu, we would love if the next time you ran, walked, potato-sacked, or three legged hopped across a finish line, that you ran it for Sylvie and helped raise funds for the Tomorrows Children's Fund. Sun salutation yogathons at your favorite yoga studio are also welcomed!

To enable you to do this we have created a home site on Crowdrise.com to make it perfectly simple for you to raise money and takes the pain in the buttness out of filling out fundraising forms, shaking down your donors and collecting checks. It’s so easy that yes, even our mom’s can do it! Please register your event today!

Our friend Simon is riding from Boston to Vermont in memory of Sylvie; Our friend Leena is running the Brooklyn half-marathon, too. They’re awesome people whose families and children are some of our closest friends (Sylvie’s too) so please support them!

Here are links:
http://www.crowdrise.com/stridesforsylvie/fundraiser/princesssylvie

Simon’s:
http://www.crowdrise.com/SimonOddy

Leena’s:
http://www.crowdrise.com/brooklynhalfmarathon/fundraiser/LeenaBansal

Old Post New Tricks

I wrote this obviously nearly six weeks ago and never posted. I have a lot of backlog stuff that I want to post so I thought I’d start here. We’re entering the precarious danger zone that would be Sylvie’s fifth birthday, on May 12th.

March 2011

Michael lit two birthday candles on March 13 which were submerged in the thick icing of German Chocolate and Red Velvet cupcakes. I consciously wished for something I knew would never come true—that sounds and is so helpless and pathetic, I know. I can tell you the wish because it’s not going to make it any less likely to come true—For Sylvie to physically be with us on my birthday.

Holidays are totally meaningless to me. I don’t want presents. I feel totally ungrateful because no material object stacks up to what I really want and can’t have. So I’d rather disappear around any holiday. It’s going to be very difficult to celebrate holidays with the twins, something I’ll have to really try hard to work around my own emotions since obviously, we are going to have festive celebratory events in our life again even though mentally, I am just not there.

I love Michael and Michael loves me. Intensely and infinitely. Together we love Spencer and Ryan. But each of our love for Sylvie is far greater which is a weird thing to comprehend. I can’t wrap my head around it. Seriously, think about it for a moment. We love Sylvie independently of each other and that love is stronger than any other love either of us have for any human being. We don’t talk about it because we love one another so much and naturally our new little guys, too. And it’s just weird and sad. I realize, or I should point out that our therapist reminded us, that when anyone has another child, they may question how to share their love and often feel a little guilty about it.

Of course Spencer and Ryan will grow up knowing all about their sister. I tell everyone about her. It’s only a matter of time before people think I’m insane and talk about it behind my back. I’ll be the old beggar lady mistaken for being drunk in synagogue who is praying to God when I’m actually having a conversation with my deceased little girl.

Randomly, several of my friends who were home sick this winter, watched an episode of Oprah featuring the Coble family who lost all three of their children in an awful accident. The family then made a pact to not commit suicide or do anything to put their own lives at risk (and thus join their kids in ‘heaven’) and then conceived triplets via IVF. Anyway, my friends independent of one another asked me if Michael and I ever had those kinds of feelings. And I have to say that I’m very committed to my time here on earth with my amazing family although don’t think for a second that when I’m on an airplane (those who really know me know that I have an absurd fear of flying that makes me very unpleasant to sit next to on a plane), I frequently consider that if the plane crashed and I died, well, I know a very special little girl who will hopefully be waiting there for me. When Ryan + Spencer were born, I had to fill out several post partum depression questionnaires at the hospital and I wanted to write in: MY DAUGHTER DIED SO IT IS NORMAL AND I AM ALLOWED TO BE SAD, TOO. I AM NOT DEPRESSED.

Michael woke me one night to ask me how I felt about faith. And could I ever have faith again. I told him that in my sleep-deprived state, I needed to think about it because I have faith in knowing Sylvie’s spirit is with me but do I have faith in a higher power? Um, I can’t answer that.

When we were at our friends’ son’s third birthday party a few weeks ago and one of Sylvie’s former classmates whizzed past me only to stop short, look up at me and say, “I MISS SYLVIE. SHE WAS HERE FOR TOO SHORT A TIME.”
Or that Sunday, my niece Megan said to me, “SYLVIE’S NOT HERE BUT SHE CAN STILL TALK.”
To both little girls, I told them that I agreed. I’m not sure if or what the right answer is but I believe in the survival of the human spirit.

Two Years

Anniversaries. Yesterday marked two years since Sylvie had been admitted to the Emergency Room at HUMC with a ‘tummy ache’ and our lives have and will never be the same. I feel like every month is some anniversary related to Sylvie’s illness, treatment, surgery, highs and lows and then very lows. It’s like I’m reliving the moment again and again with the same intensity as last year and the year before.

Michael and I constantly talk about how vivid it still is in our minds. It’s haunting. We’re permanently devastated. Sad. Mad. Heartbroken. Depressed. WE HAVE A RIGHT TO FEEL THIS WAY. In December, I drove past a local restaurant and saw through the plate-glass window a particular member of the medical community, whom I had not seen since the night Sylvie died, laughing and cajoling. I circled back several times in my car and on foot. I even walked up to the window and stuck my face close enough to see my breath on the glass and considered going inside to see if I looked familiar or to yell at this person HOW DARE YOU ENJOY YOURSELF. Okay, I also wanted to drive straight through the fucking window and kill this person. I texted Michael. I can’t even say what he would have done although he had a First Amendment right to do so. WE ARE ALLOWED TO FEEL THIS WAY. AND THIS PERSON IS NOT ALLOWED TO HAVE FUN. NOT ONE DROP OF JOY. Don't get me wrong, there are at least two dozen folks who comprised Sylvie's medical team that I would run up to and hug if I ran into. This was not one of them.

My Blackberry died in December sometime between the first and second big snow. I had been a shithead and had not backed it up for nearly two years. I knew it was that long simply because when I got a new one and synched it to my old data, Sylvie’s oncology team were in my address book. Otherwise I lost everything else. I was most distraught because I lost all my photos and had a ritual of photographing Sylvie’s headstone every time I visited the cemetery. Speaking of which, you cannot possibly imagine what it’s like for us to go to there.

The seasons. The flowers. The sparkly rocks. The mini boxwoods which we deliberated over and Michael planted himself in the fall while I sat next to him pregnant and crying. The cloisonné Nutcracker ornament, not quite kosher at a Jewish cemetery but what the heck. I was so touched when my friend Ann told me that she and her husband visited Sylvie during the holidays and left a candy cane. I thought about them bringing us dinner to PICU when Sylvie had her port inserted and liver biopsy. And the dozens of other times they visited. Including our last time in PICU on November 29, 2009.

If I’m taking Spencer & Ryan for a check up, the shortest distance from my house to the Whole Child Center passes the cemetery. Unless I’m going to be late, I intentionally drive out of my way for obvious reasons. Oh... there's Lord & Taylor, coming up on the right is Eisele's Nursery where we buy our vegetable starters in the spring and over there is the cemetery where our daughter is buried... Michael and I don’t coordinate our visits there because we are usually taking turns with the twins and in some odd way, like to have our moments there in private. But I can tell if he’s been there and vice versa by the footprints left in the snow.

When I’m nursing Spencer, he looks just like Sylvie. And when “Ten Thousand Kisses” by Suzi Shelton comes on my iPod while I’m playing with him and his brother, I have to advance to the next song because it brings me back to the exact moment when we sat at the red light at Glen and Maple en route to the emergency room the morning of November 28, 2009. Ryan has the same frenetic energy as Sylvie. Michael loves rocking them in Sylvie’s glider chair because it reminds him of Sylvie. He looks over at the bookshelf wondering if they will like the same books, minus the princess ones.

Don’t get me wrong, I don’t walk around crying all day long although I break down at the most random times in the most random places, like in Physical Therapy yesterday when Blind Melon “No Rain” came on….
“You know I’ve got to keep my cheeks dry today…so stay with me and we’ll have it made…” which used to send Sylvie and me dancing around the kitchen doing our crazy mommy/daughter hippie dance.

I am in love with Spencer and Ryan and it sure took a hell of a lot to bring them into this world. They don’t realize yet what an important role they have in our family as our sons, little brothers to Sylvie and conduit so to speak. But it doesn’t replace Sylvie or our sadness. Hopefully they’ll be better sleepers and we’ll be better parents when it comes to them being better sleepers. There are no guarantees in life, as we have learned.

It was kind or ironic that Ryan was up all last night constipated. I couldn’t help but think of Sylvie’s tummy ache and that at least she was able to tell us that her tummy hurt. I was absolutely confident he was just blocked up but don’t think that I didn’t consider Sylvie’s tummy ache from two years ago.

Spencer and Ryan will grow up knowing they have a big sister, and heaven forbid the person who says they’re “lucky” their big sister is an angel. I will deck them whether they’re 30 or 90 years old. That much I can guarantee.

A broken heart still beats

The broken heart still beats.
One year. 365 days. Without Sylvie. No fights about wearing costumes to bed. Or to preschool. No homemade ice pops in Hello Kitty molds. No princesses, My Little Pony or Barbie. No Laurie Berkner, Dan Zanes, Suzi Shelton, “I Love a Rainy Night” or Max and Ruby episodes on Michael’s iPhone. No birthday candles. No Chanukah candles. In July. No Sylvie kisses or embraces. No falling asleep with Sylvie literally clinging to our faces.

The past year has been surreal. Unreal. But real. There are many tragedies that can happen to you which you can undo, grow up or out of or just plain fix. Unfortunatley, losing your child is not one of them.

Hundreds of well-meaning strangers asking us the inevitable, “Do you have kids” or others ignoring us at parties thinking we can’t contribute to conversations pertaining to parenting. Unavoidable. Well, easily avoidable—sometimes we just cancel our plans and stay home! When Michael and I are together and “the question” is not far off, I usually step forward and jump to with a, “Our daughter passed away, she would have been four” just so that Michael doesn’t have to do it. When I became pregnant, ten times more people asked. Some even acted offended, like I ruined their day when they innocently asked me if we had other kids.

Sylvie’s not here in person and it’s just not right, not fair to her or us or you. We feel her presence often sometimes masked in bizarre coincidences and other things which we keep private because it is just that—private-- or you’d think we’re just plain crazy.

Our family and friends continue to be incredibly supportive. Like when we ask them who exactly is going to be at a potluck dinner because there are a few people who make us incredibly uncomfortable or perhaps we just don’t feel like being around more than eight, ten or fifteen people that night. And I’m sure sometimes our eyes glaze over when we see their kids. Maybe we even roll our eyes unknowingly when they complain about their kids or make bullshit excuses to avoid spending time with their children.

Michael and I go to the cemetery often. We were there yesterday together, usually we go separately. I’ve talked to Sylvie about how much I love her (more than I have ever or will ever love anything in the world is how I usually put it) and then about her baby brothers. They don’t really look like one another yet they each resemble her in remarkable ways. I think Sylvie might actually have liked them, contrary to what I initially believed. Michael planted a princess holly bush and a teeny tree yesterday and I brought a cloisonné Nutcracker ballerina ornament. Hopefully the Jewish cemetery police will not discover it.
Today is Michael’s birthday. Our weekend and our morning has been filled with mixed greetings. I’m glad our friends and family are acknowledging the day. I really liked that our friend Rohit referred to Sylvie as “our princess,” because she was so special to so many of us. It’s also important to me for Michael to have some semblance of a birthday. Especially since we are going to revisit this annually.

I went to sleep last night with a very heavy heart. I have been so extremely tired that I look forward for my head to hit the pillow when I can say my nightly prayers and conversation to Sylvie shortly before falling into the deepest sleep imaginable. So deep the baby nurse and Michael often can’t wake me up!

Today was also filled with a trip to the surgeon for me. One day when the twins are old enough to understand, like when they are twenty, I’ll explain to them just how difficult it was for us to make them. Then finally I might not be horrified by photographs of my huge pregnant twin belly in which I can point out the hernia that I endured for the sake of procreation! Then I’ll tell them that I was terrified the doctor might tell me that, in order to appease my vanity and fix the hernia, I couldn’t have more children which would just break my heart because in as much as I know I cannot recreate Sylvie, the notion of trying to create another little girl in her image is something I truly must do in order to go on. Not the case, the doctor explained to me the process to fix it now and also should I have another baby. I used to be scared of all things related to anesthesia but after the past twenty four months, I say bring it on. Bring on the IVs, operating rooms, monitors. Michael on the other hand, breaks out in a nervous sweat whenever he sees medical apparatus. Sylvie still braved far worse than any of us should ever have to go through and it never slips my mind.

Just like I made for Samantha, Sylvie’s best friend forever, I am making a photo album for my niece with all the great photographs of her and Sylvie. In some, they look like old friends sharing a private moment whether they were complimenting each other on their Snow White and Dorothy costumes, fighting over marbles, sharing pumpkins, getting naked in the kiddie pool despite our protests or maybe just sharing a secret.

I am going to go back to the cemetery today although I feel connected to Sylvie more at home than there. There I will think about finality. I will think about what a cruel fucking world this is. I’ll question how one year ago Sylvie opened her eyes to look at Michael one last time and nodded at him as if she understood or had a conscious choice in the matter. I’ll think about all the doctors & nurses who knew Sylvie who stood there crying, too. Our friends and parents nearby. Her pink princess dress with matching panties—a birthday gift from Jette—and rainbow blanket we brought from home to the ER that day. Then I’ll think about the pink plaid taffeta dress from Hanna Andersson I was saving for Passover & Easter with Sylvie’s favorite pink cardigan and black “Chanel” party shoes that she’s wearing now.

And tonight, if Spencer & Ryan actually cooperate, perhaps we will try to go out and celebrate Michael’s birthday. I know that before he can even make a birthday wish, Sylvie will already have blown the candle out.

Forgot to Post

(I meant to post this the day before the twins were born…)

October 10, 2010
Tomorrow’s the big day, when Sylvie’s twin brothers say “Hello World.” I’m expecting a lot of tears. Everyone is. We have a football team of doctors, nurses, midwives ready to help us in the O.R. many of whom at our very special request. Knowing what an emotional day it will be for us, I talked to my doctors and the folks at the hospital several times to go over our comfort level, our discomfort level and everything in between.

On Friday, Michael and I met at the cemetery to plant some hot pink mums and bring a pumpkin painted with a glittery Hello Kitty. I planned to read “The Polar Bear and The Rainbow,” one of Sylvie’s favorite books. We first found it on the book cart at the Reuten Clinic which became our immediate destination after checking in. I’m sure I’ve blogged about it before. It had one of those ‘Sponsored by a holiday donation from XXXX at Barnes & Noble,” labels so if you are ever wondering what happens to the books you purchase during the holidays with the intent of donating, please know it’s a very good thing to do. Anyway, one day the book was missing. This was a problem of big proportions. Perhaps we left it up in PedOnc. Perhaps we returned it to the pediatric library but it was nowhere to be found. They didn’t have it at Bookends or at Barnes & Noble, so I ordered it from Amazon. And wouldn’t you know it, those cheapskate publishers did a second edition printing with far less glitter on each page. So we “made lemonade” and Sylvie put some of her favorite stickers on each page of the book. I admit, I hadn’t opened it for a while so I was touched to see her personal contribution to the book. I was, however, too choked up to read it aloud so I read it to myself while Michael sat next to me. He said that the name “Benjamin” was on his baby name list because that’s the name of the polar bear in the story.

I have had many conversations with Sylvie about her becoming a big sister and our having twin boys. I’ve thanked her for sharing her bedroom and apologized for painting it blue. Pity the poor person who tells us that our babies are “special” for having a big sister who is an angel. I will lose my proverbial shit. I cannot wrap my head around it. How on earth do we go on loving the same way we did before, not being terrified at every bump, fever, cough, sniffle and tummy ache? I realize that many parents, when they have subsequent kids feel guilty about sharing their love but essentially, your heart just continues to grow and grow. This is different though. We have no closure. No answers. And no Sylvie. I’m so defensive when someone who doesn’t know about our family asks me if our daughter had been ill. I am quick to say that she had cancer but that she was CURED.

I think the fall will forever be pretty miserable in our longing for Sylvie. I recalled at the cemetery that it’s almost Halloween and that last year, Sylvie wore her new Cinderella costume to school and held Miss Amanda’s hand as they led the parade. I have a movie of it. A movie that our au pair Caroline shot while Michael and I hid because Sylvie would not have wanted to proceed had she seen us in the crowd. One of Sylvie’s friends was also dressed like Cinderella so it was cute seeing the two of them in their sparkly blue dresses. I have boxes of Halloween decorations—Sylvie hated them because they were scary but they were pretty cool. I acquiesced last year and bought sparkly fall decorations instead because she liked them better. We also went to Florida in November to celebrate Sylvie’s recovery and had the most glorious time. We’ve since brought some of the shells we collected on our trip to decorate her headstone. I don’t wish losing a child on anyone but really, the business and rituals one must do at a cemetery would make your head spin. When I bought the Hello Kitty pumpkin, I considered saying something to the cashier at the garden center but really, what is there to say?

My dad asked me again last week, as if we haven’t had the conversation a LOT, if we would be having a bris ceremony for the boys (NO WAY). Even my obstetrician has asked me repeatedly and mirrored the rabbi’s sentiment of it being an “important” one time only Jewish life event of an eight day old baby boy, let alone two. I can’t help but understand where they are coming from and I have the utmost respect for all of them. But really, there is no way that any of them can look me in the face and not read my mind—I have found very little solace in faith. Pardon my language, but I could give a flying fuck about a bris.
So tomorrow is a very big day. I have a playlist ready to go. A couple of the songs remind me of Sylvie. They might even be bummer songs but they make me feel better. When Sylvie was born, I had intended the Simon & Garfunkel song “The Only Living Boy in New York” to be playing but let’s just say that nothing went according to plan! Here’s what’s on the list tomorrow in no particular order.

Bitter Sweet Symphony The Verve
Come Home Angel Dan Wilson
I've Been Waiting Matthew Sweet
Fall On Me R.E.M.
100 Years Five For Fighting
The Only Living Boy in New York Simon & Garfunkel
Little Wonders Rob Thomas
The New Year Death Cab For Cutie
Lights Are Changing Mary Lou Lord
Soul Meets Body Death Cab for Cutie
The Long Way Around Dixie Chicks
Champagne Supernova Oasis
The Drugs Don't Work The Verve
La Cienega Just Smiled Ryan Adams
Easy Silence Dixie Chicks
Tiny Dancer Ben Folds
A Long December Counting Crows
Fade Into You Mazzy Star
Crazy About You Whiskeytown
Feeling Good Robinella & The CC String Band
Jacksonville Skyline Whiskeytown
Home Edward Sharpe & The Magnetic Zeros
Ooh Child Beth Orton
She Don't Care About Time The Byrds
Heavenly Day Patty Griffin
This Will Be My Year Semisonic