Quattro

Chanukah. Thanksgiving. Michael’s Birthday. Four years without Sylvie. Four years. Sylvie has not been with us for longer than she was with us. Dead longer than alive. Spencer and Ryan are 3. They will be 3.5 in April. They will have lived as long as Sylvie in April. Maybe then I’ll really exhale. I run through these kind of stats all day long. I think about Sylvie literally every second, like a buzzing in my ear. Traffic lights are the worst. There I have the opportunity to focus on really bad things. Then the light turns green and I snap out of it because I want to be present and “normal” for my family. All of our children are so different than Sylvie although Ellery looks identical to her. I try to compartmentalize my grief and anger because I am so grateful for Michael, Ryan, Spencer and Ellery. And their joys are my joys. I realize that Sylvie’s passing activated a duty in me which is to protect Michael from his own grief. I’m fascinated by Spencer and Ryan on a daily basis because their minds work so differently than Sylvie. I mean, they work different from anyone else’s, but my area of expertise of the four and under set is pretty narrowly based upon Sylvie. All of the kids have been sick for the past 3 weeks. I’ve spent countless hours at the pediatrician’s, at urgent care and the pharmacy. It has literally sucked up every single spare moment. When Michael was driving past The Doctor Is In last Saturday, I asked him to pop in with Spencer. He couldn’t. He can’t. He never will be able to. For Michael, it’s activates his PTSD. It’s a drag. He thinks I’m unsympathetic. I feel badly. I want to be more sympathetic but I’m too pissed off with spending all this time and energy and free time on taking the kids to get checked out. When we took Sylvie to the emergency room on 11/27/09, we had a really foreboding feeling. When Suzi Shelton’s “Ten Thousand Kisses” played in the car, we shut it off because it freaked us out and we drove in silence. I do NOT get that feeling when I take the boys or Ellery to the doctor. I think Michael does, however. The boys love tearing up our guest room. Big bed. Lots of books. Boxes filled with cool things like Sylvie’s jewelry, ballerinas, stickers. I found on the floor last week my folded index card containing the list of everything we packed up for Sylvie’s journey. In life and death, it’s not so much that Sylvie was a princess, she’s was like an Egyptian QUEEN. I was kind of shocked to find it, as if it was speaking to me in the same way that “Here Comes the Sun,” “Over the Rainbow,” “Fly Me To the Moon,” and “You Are My Sunshine” play more in random stores, b-side satellite radio stations and on television. I took a cue from my sister-in-law who once told my niece that she can see Sylvie when she closes her eyes. So Ryan tells us practically daily that Sylvie is in Heaven and then he covers his eyes with his tiny hands and says he can see her. I think he and Spencer imagine they are playing this great game of Hide and Seek with a very mysterious person. Their sister. Who they will never know. I imagine them growing up and telling their friends about their sister who died that they never met. And that their parents are a little crazy because of it. Ellery’s too young to factor into this with the exception that really and truly, she looks identical to Sylvie. When Sylvie passed away, a business associate and friend sent me a copy of The Little Prince with a note that it helped his wife during times of stress. I keep the card in the book as my bookmark and have spent countless hours reading and rereading it. Besides the allegories to loss, I really love the emphasis of engaging your child from their perspective. I never spoke to him again because I never returned to work for fear of having to talk about Sylvie all the time but I really owe him a call because he has no idea how impactful his kind gesture was. I don’t have an anecdote to wrap this up today because really, the fact I got to sneak in some time to write this is a miracle unto itself. Let’s just say that my Black Friday is worse than yours and in the spirit of Sylvie, I hope you buy lots of sparkly things.

I've Been Waiting

(sorry there's a glitch and I can't get this to read in paragraph form) I haven’t posted my past few 'posts' which have been many in since last May. They came across angry. Very angry. Only I’m not an angry person and no matter how often I reread and tried to write in a non-furious tone, I had writers’ block. I wanted to elaborate exactly what Michael and I feel over losing our daughter, losing (and gaining) friends, growing our family and just carrying on. I posted it and removed it a half-dozen times. Last fall, I wrote a letter that was read aloud at the Kula For Karma annual gala which honored Dr. Michael Harris, Sylvie’s oncologist and one of the most incredible persons we have and will ever know. It's also an organization I identify with because my own yoga practice really grounded me and blossomed-- in yoga speak that would be "opening to grace" and "organic energy"-- right before Sylvie became ill and during her treatment when I'd sneak off into the Family Locker Room and unroll my yoga mat. We were supposed to attend the affair and I bought a sexy light blue low cut backless velvet dress to wear, in all my pregnant glory although I was not going to personally read the letter because I will not permit myself to be in situations that make me cry and feel badly about myself. My therapist calls that good judgement. Plus, it was joyous event and really, who wants to see a crying pregnant woman up at the podium? The October date was postponed after Hurricane Sandy and wouldn't you know it, the new date was November 29 which marks three year date of losing Sylvie (and Michael’s birthday of course). The Universe was saying, “Audra, Michael, you should not attend.” Truth be told, we had also already booked a trip to Mexico. And naturally, both of the boys came down with horrible colds Thanksgiving (nothing like a good old walk down memory lane of Sylvie's run of the mill cold three years prior) so we had to bump our trip anyway. March 5, 2013: The moment Ellery was being delivered, I turned my head to Michael and said, “We’ve waited a lifetime for this!” I was overcome with a pure joy in my heart greater than you can ever imagine. It literally drowned out sound. It was like the vast universe opened and presented us with a baby girl. I had spent three months deliberating over my Baby Quattro Playlist that in hindsight, I’m not exactly which song was playing. I vividly remember Patty Griffin’s “Oh Heavenly Day” playing when Spencer & Ryan were delivered. In the early hours and during my panic attack when it was just me, the anesthesiologist and delivery room nurse hanging out in the c-section surgery/delivery room I thought to myself, “Self, ‘Long December’ by Counting Crows and ‘Heart of Gold’ by Neil Young may be incredible songs but they are not making me feel calm right now!” While deliberating over the time taken for the spinal block to take effect, time taken for Dr. Dicker and Michael to talk about Momofuku’s fried chicken and Pete Luger’s steak, time taken for Dr. Dicker to reassure me that he had stuck me with a sharp object to which I didn’t scream unto which he said, “LET’S HAVE A BABY!” I have since concluded that when Ellery and I met for the very first time, either “Landslide” by Fleetwood Mac or “I’ve Been Waiting” by Matthew Sweet was playing. BABY QUATTRO PLAYLIST La Cienega Just Smiled/ Ryan Adams Fade Into You/ Mazzy Star A Long December/ Counting Crows Tiny Dancer/ Ben Folds Heart of Gold/ Neil Young The Long Way Around/ Dixie Chicks She Goes On/ Crowded House Landslide/ Fleetwood Mac I’ve Been Waiting/ Matthew Sweet Under The Milky Way/ Kill Hannah This Woman’s Work/ Kate Bush You Are My Sunshine/ Elizabeth Mitchell Born Into a Light/ Ryan Adams & the Cardinals Soul Meets Body/ Death Cab For Cutie Viva la Vida/ Coldplay She Don’t Care About Time/ The Byrds Heavenly Day/ Patty Griffin Life is Beautiful/ Ryan Adams & the Cardinals Lullaby/ Shawn Mullins Every night we sing "Trouble," the Inara George version of her dad/Little Feat's song. I don't know why I love it SO much. And the Dixie Chicks "Lullaby" which I also love except it's five minutes long. I got an iPhone in January. I often take photographs of Sylvie’s headstone when I visit the cemetery. I made sure the nice guys at the AT&T store could transfer and save my images from my Blackberry. Unfortunately all the ‘notes’ were forever lost. I couldn’t explain to them why I was apoplectic over this. My Sylvie alphabet. The list of things we selected for Sylvie to take with her, our own Cleopatra. I'm glad I take those pictures because we had planted a little tree next to Sylvie's headstone which many of our friends and Sylvie's friends had decorated with "Sylvie" things. The cemetery clearly received a complaint so we had to remove it. Michael went ballistic. The letter upset me more than the act of removing the tree. Technically we own the real estate but who knew cemeteries have rules like condo boards!? I am NOT sorry some other family has the misfortune of burying their loved one adjacent to a CHILD. That is the harsh reality of life. Children die, too. Having another baby, a baby girl, is is as close to full circle as Michael and my life can ever be. Sylvie, Spencer, Ryan & Ellery. I feel fortunate that we were young enough to have three amazing children after enduring the disastrous tragedy of losing Sylvie. It makes us better and worse parents at the same time. Michael and I are yin and yang. I balance his craziness whenever he freaks out over Spencer and Ryan being sick, falling, or getting a mosquito bite which means that I’m the one that calls Dr. Rosen at 11 pm usually on a holiday and in turn, Michael comforts me when he sees me crying for no reason. A month before my due date, our prized Lucky dog was diagnosed with the most rare and fatal cancer a dog could get. What are the chances… same chemo drugs as little girls... I told our vet and also the veterinary oncologist that Lucky MUST be waiting at home for me, tail wagging, when I brought a baby girl home from the hospital on March 9th. Lucky has literally grieved with us, this I know to be true. You, me, Lucky-- our souls all come from the same place. You and me-- we're lucky that we're human beings. Lucky, well, she's just a dog but the same inside. I just read the Yoga Sutras so forgive my yogi speak! Dr. Al-Saroff, the oncologist, cried. But Lucky rallied! She defied the odds and despite a 25% success rate and a success rate that never exceeds beyond 100 days, Lucky is at my feet right now. And when she’s not at my feet, she’s guarding Ellery. Two days after Lucky was diagnosed and out of nowhere, which sounds strange when you’re talking about a twenty year old cat, OJ became ill and had to be put to sleep. OJ and Lucky have shared so many of our life experiences that it’s hard to imagine not having them here. Funny story, kind of: I told my mom that we had OJ cremated. She wondered what my niece, one of OJ’s BIGGEST fans, would think. She suggested telling her that OJ’s ashes are with Sylvie and I was like, “NO WAY! What if Megan goes to school and says, ‘My aunt and uncle burned their cat!’ “ Reluctantly, she agreed. My due date was the day before my 41st birthday and if I had the time to count the exact number of days pregnant, I would swear the Fates were trying for me to have a baby on my birthday. Just like they decided Sylvie should leave us on Michael’s. For the first day or so, Ellery looked exactly like Spencer. She’s since settled in to looking EXACTLY like Sylvie. I mean, EXACTLY. You can call me crazy and I would not disagree but I can’t help but think that Ellery is a very special present from Sylvie and the Universe. When I look down at her little head nestled against my chest, I can't help but think that she is a bandage covering a hole in my heart. Spencer & Ryan know they have a big sister. They carry her framed pictures around the house. I have a mental block that has prevented me from displaying any other photographs other than hers. I keep telling myself that once Spencer & Ryan are 2.8 years old, the same age as Sylvie when she ‘became’ sick, all of a sudden I’ll be able to move forward a little. I have a neat stack of birthday newspapers, hospital bracelets, baby announcements, and holiday cards for all of our children ready to go into scrapbooks. I even found the red leather journal which I wrote letters to Sylvie when she was a baby. I had left it in Blue Car for years and it since moved to my night table only I never opened it. Michael has notebooks like that all over the house. Sometimes I peek inside. I only recently read that he liked listening to Sylvie and I talk at bedtime, from outside the room, about the days’ warm fuzzies and dim gloomies. I plan on incorporating that into Spencer & Ryan’s bedtime when they stop beating the crap out of each other before crashing into one another’s bed before falling asleep. I was ordering window treatments for Ellery’s bedroom in Vermont and the designer had to reassure me that when she was older, she’ll love them, since I don’t know what it’s like to have a non-toddler daughter. I had to reassure myself that Ellery would be a young woman with these freakin’ window treatments and that we’ll have the joy of watching her (and Spencer & Ryan) grow up. Not all children get cancer, get better and then die before their fourth birthdays. It makes me nervous just typing that because I know what it’s like to defy the odds. Ellery’s middle name is Mae. As in the month Sylvie was born. May 12 to be exact. Mother’s Day.

May Day

Dear Mr. Hughes: This letter is to inform you that after reviewing your daughter’s account we have determined that you overpaid the account by $270.00. Please see the attached check… Sincerely, Valley Home Care. Received today, May 11, 2012. I know. Sylvie’s birthday is tomorrow, May 12. She should be turning six. She is not turning six. She will never turn six. We will never know what it’s like for Sylvie to be six and do the things that six year old girls do. We initially turned down invitations but my parents implored us to do something—anything—so we not be on total lock down although my initial gut instinct is that I do not want to be reminded of our loss by seeing Sylvie’s friends. I love them today, tomorrow, every other day. I say that with gusto however last year, two of my friends came over before school with their children who had made cards and brought sparkly pinwheels which was so endearing and sweet and of course I cried right in front of them. I was very glad they came even though I was trying to shut out the world. In addition, I try not to cry in front of my friends’ kids. When I was playing with Samantha on Monday afternoon, I had a hard time not saying to her, “Sam, it’s Sylvie’s birthday on Saturday.” I kept looking at her and I think Sam noticed I was a little tongue-tied. And when Ryan was having a hissy fit and throwing a toy at Bella yesterday, I looked at Samantha and said, “You know, I remember when you and Sylvie would fight like that,” and she looked at me very seriously and replied, “I remember that too. I remember.” Naturally, the Jewish cemetery is closed on Saturday which is troublesome but we’re not going to effect any change, so we went on Thursday and today and did whatever rituals people like us, who have lost children, do on that special day. One day when Spencer and Ryan are older, we’ll bring them but the one time I brought Spencer and he ran around like a crazy person, I can only imagine what it would be like to LOSE your child, let alone TWO at the cemetery--No thank you! In addition to planting flowers and cleaning up some of the debris, I brought some special treats. I think sophisticated Sylvie would definitely have moved on from sugar-free cheesecake and cupcakes to French macarons so there I was armed with a 4-pack of cupcakes from Crumbs and three berry macarons from Sook. My fingers gripping my bounty crushed one and imagined Sylvie yelling at me, “YOU… YOU… YOU RUINED IT!” She would definitely have said that to me. I suppose that tomorrow we could go to Paramus Park and ride the Merry Go Round with Spencer & Ryan although we’d look like a family of psychopaths crying and the mean lady who sells the green single-ride tokens rubs me the wrong way. She never ever smiles. If I went every day for a month which I am proud to say, I haven’t done, but if I did, I don’t think she’d acknowledge that I was a regular customer. Fortunately Spencer and Ryan have no idea what the Disney Store is. May we not have to enter it for years to come. I don’t have a new Sylvie slide show because well, I don’t have any new pictures of my child who is no longer here. I’m sure I have around a thousand photographs that have never seen the light of day and I may try to dig up some birthday images. I am constantly reminded of Sylvie when I hear a new song or old song that’s new for the moment. I guess I could make a mix and if I was tech savvy, upload it to iTunes. I made, with my yoga teacher, a great mix that we played in celebration of my 40th birthday that included Ryan Adams “La Cienega Just Smiled,” Elizabeth Mitchell’s “You Are My Sunshine,” Dan Zanes “Smile, Smile, Smile,” Nada Surf “Always Love,” Blind Melon “No Rain,” Mazzy Star “Fade Into You” among others. There were too many Patty Griffin songs for me to narrow it down to one although “Up to the Mountain- MLK Song” and “Oh Heavenly Day” come to mind. So if you’re looking for a new playlist, there it is. And yes, let’s not forget that Sunday is Mother’s Day. My friend Stacie said that you can never take away that I am mother to a very extraordinary little girl, in addition to Spencer & Ryan. There’s the spiritual side of me that: 1). Believes in the survival of the human spirit (trust me when I say that I have personal proof), 2). Sends intentions out to the universe and 3). Give thanks to my own spiritual guides on a near daily basis. Michael is not such a fan of those things because he thinks they give false hope or justify our loss. I think it has nothing to do with hope but empirical evidence that there is some other guiding force out there that if you are open to it, will send you messages. This has nothing to do with religion. I’m not sure where religion fits into all this actually. Perhaps over the next 40 years, I’ll figure that part out. That being said, Michael and I wholeheartedly agree that it was not Sylvie’s time to depart and that modern medicine or the common decency practiced in modern medicine was not practiced on November 28, 2009. The court of public opinion would tend to agree with us which is very different from, say, the State of New Jersey, so balancing science versus spirit is very challenging to me. In my yoga class Tuesday, the teacher asked us to say aloud yet silently an intention. I always dedicate my practice to Sylvie and I always have an intention. Mine was, “I will not rush today.” I already know what today’s will be. “This is as good as it gets.” Sylvie is my pseudo-imaginary friend. I am a forty year-old woman with an imaginary friend who is her deceased little girl. You can’t make that up. In Spencer & Ryan’s music class, there is a little boy with a compromised immune system disease. His mom has no idea that we have gone to fundraisers for her toddler. That Michael is in the bone marrow/ stem cell database because of her son. She has no idea that the face of the mom with the crazy twins sitting across the room is literally the face of her living nightmare. A visitor to their Facebook page and blog. Two weeks ago in class, my first real encounter, I admit, I tried to look away because I was obsessively staring at them alternating with wanting to cry. But then Spencer began running in one of his flailing out of control feet-don’t-fail spirals … right into their laps. She looked horrified. I WAS horrified. They left class to wipe every trace of Spencer germs off of them and trust me, I KNOW what that means! I tried to switch class the following day. Fast forward, he wasn’t there this week. Instead he had a central line inserted, began chemo and is having a partial stem cell transplant because they haven’t found a perfect match and he may otherwise die. So on Sylvie’s birthday, please send your intentions out to the universe, eat a macaron, light a candle for her and also for Ezra.

Three Years.

Three years ago.
“Hi I’m doctor Michael Harris and I’m the head of pediatric oncology.”
I wanted to say, “Hi nice to meet you. You’re tall and have kind eyes and surely you are in the wrong room. I feel sorry for whomever you really meant to introduce yourself to.”

But I was alone because Michael was returning from calling the store and there was no cell reception in the room. Instead he was looking at my face while the backs of the oncology team were talking to me. Then as he got close he could read their nametags and see the word ONCOLOGY.

First bad news… the tumors on Sylvie’s liver lobes that filled up her entire abdomen. Second bad news… shadows on both lungs and additional CT scan to immediately follow. I don’t want to rehash things I’ve written about already but for the first 48 hours or until they got the alpha fetoprotein test and tissue biopsy back, they wouldn’t confirm it was cancer although so there was a part of me that really thought they would return and say it was all a mistake. 72 hours later we had our team meeting where we discussed treatment for stage IV (metastatic) hepatoblastoma, chemo, chemo side effects, surgery and the potential liver transplant which Michael and I decided we were not going to tell anyone about. Oh yeah, and dancing at Sylvie’s wedding.

Three.
Years.
Ago.

Sometimes I torture myself by making myself reenact tragic moments like this. I do it because I don’t ever want to forget them. Maybe you’ve heard about or personally experienced posttraumatic amnesia. Not me. Not Michael. I can tell you everything. Doctors’ Red Sox ID card lanyards, the lovely volunteer we called the Bead Lady telling me about her lifelong dream to open a sex toy retail store and hoping Sylvie was not listening so I wouldn’t have to explain, the glare of the lights in the “treatment room” in the middle of the night while they reinserted Sylvie’s NG tube by threading it through her nose, down the back of her throat and into her stomach while she kicked and screamed immediately followed by her shaking down the nurses for a big ticket Disney princess scrolling art thingy that I had already bought her for her birthday and it was waiting for her wrapped at home. I think I would need two-carat diamond studs if someone were to jar me from a deep sleep and do that to me. I remember ninety nine percent of the folks who paid their respects. And lots of bagels. I’ve eaten MAYBE five bagels in the past two years. We are on a bagel moratorium. We try not to ‘break fast’ after Yom Kippur with anyone because the sight of a pile of bagels does not make us happy. And I admit, I also had gestational diabetes during my pregnancy so I now know just how many carbs and just how bad bagels are for you.

I went to the cemetery as I often do. (Michael usually goes on his way home from work). I measured out Sylvie’s height amongst the mini boxwoods that Michael planted because a). He likes plants and shared his passion with Sylvie and b). Perpetual care costs nearly $5,000 every fucking year. Add that up. No really, add that up. I thought about the silk taffeta dress she’s wearing that I was saving for the spring. Her favorite pink cardigan with the flower buttons that she’s wearing in pictures with Megan. Hello Kitty socks, of course. And the black party shoes that look like Chanel flats. I think about all the times I traced the outline of her perfect little eyebrows, bridge of her perfect daddy’s nose, cheekbones. Ryan looks exactly like her so I do that to him, too. I say outloud that she has perfect Chicklet teeth. Then I explain what Chicklets are although Sylvie never had chewing gum. Then I sob. I read “Rabbit’s Winter Walk” which is one of her favorite books. I have two copies. Ryan is going to love it and Spencer will undoubtedly steal it halfway through. I talk about Spencer and Ryan. I sprinkle sparkly beads over the mulch hoping that half will get tilled underneath and the rest will be taken by birds that will make their nests sparkly. Then there will be a Ridgewood Patch article about the sparkly birds’ nests in Bergen County and I’ll silently giggle. I make a mental note to bring a garbage bag next time because I need to clean up the place a little. Sometimes it gets a little Jim Morrison-like. It’s not a shrine. My three and a half year-old daughter is buried there.

Small Wonders

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?..

Spencer + Ryan Turn One

As Sylvie loved birthdays, anyone's birthday, any reason to light candles and have cake + cupcake, I thought it would be a good time to post as Spencer + Ryan turned ONE last week. I have in my closet, my retro locker basket filled with Sylvie's first birthday cards, birthday candle, 'recipe cards' that I made featuring healthy muffins that ideally, kids should love although Sylvie hated them. I ordered cakes from Ciao For Now in the East Village since they made all of Sylvie's birthday cakes. Michael can't even walk past their store front for fear of talking to Amy and Kevin who own it. To tell you the truth, I am not sure if they know Sylvie passed away. All I know is that I ordered the cakes and asked them to deliver them to Commodities so that Michael would not have to have any interaction. For better or worse, I nursed Sylvie exclusively for 25 months. Therefore, she pretty much hated all solid food for the first year except for guacamole, hummus and soba noodles. Needless to say, she was not advanced enough to eat chocolate ganache birthday cake. Spencer and Ryan on the other hand, nursed for 6 long months, eat ANYTHING. We also picked up 75 Baked By Melissa cupcakes just because, and just because Sylvie would have LOVED them, especially the tie dye versions. Spencer and Ryan ate three each! For Sylvie's first birthday, we had a crazy party at Michael's friend's insanely fabulous bachelor pad loft yet we were not intent on topping that for Spencer + Ryan. We opted for more low key although we were intent on opening up a bottle of vintage 1993 Dom Perignon that we were saving for an occasion such as this-- to celebrate that we had survived our first year as parents to twins. It's challenging for us to compartmentalize the celebration of Spencer + Ryan's birthday in a separate box from our near two-year loss of Sylvie which is as intense an emotion for us today as two years ago. Tita Cindy gave the little guys a magnificent custom print of the lyrics to the song that played at the moment they were born, "Oh Heavenly Day" by Patty Griffin and in addition to their names and birth dates listed at the bottom, there is a little butterfly on the top right.

Anyway, this blog is not about Spencer + Ryan.

After Sylvie passed away, I took a children's book writing class because I had several ideas churning in my head and wanted to learn about picture book writing, formatting and marketing. Unless you're Fancy Nancy or Knuffle Bunny, let's just say a barrista at Starbucks probably eeks out a better living (and medical insurance!). I was pregnant with Spencer + Ryan when the class began so walking in the slush to the train and then traipsing around Manhattan once a week was exhausting although it gave me a chance see my friends Beka, Kerri and Liana on a regular basis. They didn't mind that I cried in public either. And I quickly wrote "BFF" which is a story about two best friends whose relationship transcends time and space. Because I am a terrible procrastinator, I gave myself a deadline of Sylvie's best friend Samantha's fifth birthday, that March, to complete it. I live in FEAR of the day Samantha tells me that she can't remember what Sylvie looks like so I wanted to actually share the story here in the hope that it possesses some magic and that Samantha always remembers. A friend of mine had offered to get it illustrated by a very famous illustrator and perhaps one day that will be the case. I have a bunch of friends who are amazing graphic designers and illustrators in their own right, but illustrating a book about your friend's dead daughter as opposed to an album package design or band logo is not something I am prepared to do! A classmate in my writing class suggested it had religious over tones but when I told her it was a TRUE story and that, believe you me, I have some serious issues with God or the idea of God and therefore went out of my away to avoid specific references, she backed down. I think she was just looking for a fight about religion. I can fight all day about the survival of the human spirit and the role of women in organized religion but didn't think that our children's book writing class was the place for that. For now, please use your imagination as this is how a 32-page picture book looks in outline form and feel free to read this to the little people in your life.

Since I usually write in rapid-fire, I do have another post on a different subject altogether. Stay tuned.

B.F.F (Best Friends Forever)
Best Friends Forever
By Audra Hughes
(Copyright 2010)

(page 1, acknowledgements)
(pages 2-3 title page)

(p. 4)
Samantha and Sylvie were best friends.

Samantha taught Sylvie about fairies, mermaids and princesses from exotic places. And sharing.

(p. 5)
Sylvie taught Samantha a lot about friendship too even though she was not nearly as good about sharing.

(p. 6-7)
(Illustration to include among other things, Samantha hiding angel wings and a book beneath a couch cushion)

They did best friend things like dressing up in costumes, going to the park, having movie nights and sleepovers. They occasionally fought over silly things.

Sometimes, Samantha would trick Sylvie by hiding some of her favorite things under the couch cushion. Best friends can be funny that way, too.

(p. 8)
One day at school, Sylvie got a bad tummy ache. Worse than when she ate too much pizza and ice cream. She felt very sick.

(p. 9)
Sylvie’s mommy and daddy took her to the pediatrician and then to a big hospital that looked like a fancy hotel. Everyone was very nice and gave Sylvie special presents. She was too tired to play, talk or walk.

A bunch of doctors in white coats told her mommy and daddy that Sylvie was very sick. She would have to stay in the hospital for a long time but would get better and someday, the doctors and nurses would dance at her wedding.

(p. 10)
So Samantha packed up her favorite toys and brought them to the hospital where the two little girls sat in the enormous adjustable bed and watched movies on the giant television about fairies, mermaids and princesses from exotic places. Sylvie wanted to be a mermaid. Samantha wanted to be a princess. Best friends like different things.

(p. 11)
Sylvie’s medicine was making her tummy better, but it had a funny way of making her feel sleepy, sick and sometimes grumpy. During the day, clowns, dogs and volunteers would visit and try to cheer her up. Sylvie acquired many new dolls, toys and pink things that she shared with Samantha who visited often.

Best friends can be best friends anywhere.

(p. 12-13)
One day Samantha brought Sylvie a postcard of a snowy mountain from a recent trip.

(illustration of postcard with the following message: “VERMONT IS HEAVEN!”)

Sylvie had a mountain house, too. One winter, they went together and made snow angels in the (meadow) backyard.

(p. 14)
(illustration to show girls in bed eating a smorgasboard of food like fettucini alfredo, chicken noodle soup, mashed potatoes, etc.)

When Sylvie hadn’t eaten in so long that she forgot how to, Samantha showed her. They had Italian ices for dessert. Sylvie’s wanted the cherry red, Samantha purplely grape. Best friends like different things.

(p. 15)
(Illustration of Samantha teaching Sylvie how to dance like a ballerina princess)

When Sylvie was feeling a little better she went home and Samantha came over after school. Sylvie was wobbly from being in bed all day and Samantha showed her how to dance again. They were still best friends.

(p. 16)
Sylvie got better than better. She got perfect. Just like her friendship with Samantha.

(p. 17)
They went out for pizza and ice cream, their favorites! Sylvie got vanilla, Samantha chocolate. Best friends like different things.

(p. 18-19)
(Illustration of the girls at a concert. Should also include that Samantha has barrettes in her long hair, Sylvie is wearing a similar headband in her VERY short hair and they are wearing matching outfits and backstage passes)

Sylvie and Samantha went to a concert together. They made sparkly posters for the band. After, they went for cupcakes. Sylvie ate red velvet and Samantha had chocolate. Best friends like different things.

(p. 20-21)
They also went to a butterfly exhibit at a museum where they saw thousands of butterflies that landed on their noses, eyelashes and fingertips. Sylvie liked the Tiger Swallowtail and Samantha liked the Blue Pansy butterflies. Best friends really do like different things.

(p. 22-23)
One day, Sylvie wasn’t feeling well again and returned to the hospital. The doctors and nurses ran lots of tests while Sylvie slept in the big girl bed. Only this time, she never came home. Samantha was very sad and missed her best friend.

(p. 24)
Samantha's mom told her Sylvie was in Heaven. Samantha asked if that was Vermont? No, it's farther. Samantha's dad told Samantha Sylvie was like a caterpillar that turned into a butterfly. This made Samantha feel slightly better.


(p. 25)
Her mom then told Samantha they could see Sylvie in pictures, movies and in their minds. “What does that mean?” Asked Samantha.
“Close your eyes and imagine you and Sylvie somewhere,” Samantha’s mom continued.
“I can see Sylvie!” Samantha exclaimed. “Sometimes she’s here with me, too. She tickled my feet in the car on the way home from school yesterday,” Samantha told her. She also thought Sylvie made the snow that blanketed their neighborhood and covered her swing set.

They were still best friends.

(p. 26-27)

Samantha’s mom suggested they make a memory box filled with their favorite treasures.

(Illustration of cross-section of house featuring vignettes depicting Samantha gathering objects from different rooms in her house that reminded her of Sylvie. Suggestions… gathering pictures of her and Sylvie playing dress up, jumping in waves, blowing out candles and acting silly…Searching for stickers of fairies, mermaids and princesses from exotic places. On the top shelf of a bookshelf, removing a snow globe depicting a scene from The Nutcracker ballet… From her jewelry box, removing a necklace with a rocketship charm that reminded her of their favorite song from the concert. In the bathroom, plucking her electric princess toothbrush, sparkly lipstick and glitter nail polish. In the pantry, snatching a jar of rainbow sprinkles and from the playroom, tubes of glitter glue. In the living room, she grabbing a CD featuring some of their favorite songs labeled “Sylvie’s birthday mix.”)

From beneath the couch cushion, Samantha pulled out a pair of sparkly angel wings and a favorite book that she had once hidden from Sylvie. She put on the wings and packed the book into the box. It was nearly complete.

(p. 28-29)
Lastly, she gripped her favorite purple pen with a miniature princess on the end and a piece of grape-smelling stationary. She wrote:

Dear Sylvie,
We were very little girls when we first met. I am lucky to have an angel for a best friend. I miss you.

Best Friends Forever,
Samantha

(Samantha putting all these things in a shoebox)

Samantha and her mom put the box on her bookshelf where she could look at it all the time.

(page 30-31)
(Illustration: Samantha runs outside and makes a snow angel next to the swing set that when blanketed in snow, resembles a castle)

All day and night it snowed.

“Thank you Sylvie!” she yelled as loud as she could.

(page 32)
The next morning, there were two snow angels. Best friends can be best friends anywhere!