Sarah's Journal

Sarah is not happy at her first post op visit. No more poking and prodding. They have to remove a string from the bottom of her scar. Sarah won’t let them near her. Dr. Newburger looks at me. I’m close to collapse. She wants to speak with me alone. She asks if I am OK. I’m not sure what’s happening. Tony Soprano and the ducks. Dr. Newburger says, “This is common. Triggered by being back in the hospital. The strength that got you through the past few months is gone.” Sarah is given a clean bill of health. Rachel asks Daniel if we can get back to our normal routine. He says, “You bet. “ We head back to New York. Rachel and Sarah fight in the back seat of the car. Rachel’s had enough. Sarah gets more attention. Rachel cries. We love Sarah more then her. Daniel plans a special father daughter day with Rachel. Daniel tells Rachel to get dressed up. Rachel is thrilled. Where are we going? It’s a surprise!!! Right before they leave Sarah starts throwing up. She lies on the floor in agony. Screaming. Her head hurts. Rachel can’t wait to have her special day. She doesn’t know it but they are going to a Broadway show. Sarah doesn’t stop throwing up. She is in terrible pain. She can’t hold liquids down. She’s limp as a noodle. I call the pediatrician. We need to get Sarah to the ER immediately. She’s on diuretic medication and at risk for dehydration. Her electrolytes need to be checked. Needs a chest x-ray. It could be an infection due to surgery. Daniel and Rachel are heading into the theater when Daniel sees my text. Instead of enjoying the show they jump in a cab and come home. I email Dr. Adams. We are heading up to Mt. Sinai ER. Dr. Adams gets in touch with Mt. Sinai Pediatric Cardiac ICU team. Sarah is given a shot of Zofran. She is so sick she barely protests. The Zofran works. She slowly tolerates liquids and miraculously comes to life. They take wonderful care of Sarah. Rachel spends her special day watching 6 hours of Barbie movies in MT. Sinai Emergency Room.

We spend the week recovering in Boston. Daniel’s phone never stops. He goes back to New York for a few days to work. My girlfriend Lindsay comes up with her son Teddy. Sarah (5) adores Teddy (8). Teddy, of course, is mesmerized by Rachel (9). Sarah’s desperate to keep up with the big kids. Run, dance, swim. It’s torture holding her back. She stamps her foot. Cries. STOP treating me like a baby!!! Enormous relief morphs into a touch of PTSD. I flash on the scene in the grocery store in the “The Hurt Locker.” How do you shop for cheerios when you’ve spent the last two years dismantling bombs in Iraq? I am jumpy. Nervous. Stressed. Will Sarah fall and hurt her chest? Did I get the meds right last night? Did I over-dose her? Her scar got wet during yesterday’s bath. She has dark circles under her eyes. Is she eating enough healthy food? I am grateful for simple moments. Cuddling on the bed with my two beautiful girls. Watching cartoons. Ordering Room service. Shopping for Hats on Newbury Street. Being WELL taken care of at the Hotel. Today is Sarah’s first Post Op visit. Dr. Newburger told me it’s normal to feel anxious re-entering the hospital. I have butterflies in my stomach. Tomorrow we go home, back to New York. We are leaving our cocoon. I have butterflies in my stomach. I think back over the last two months. I am struck by the responses we got from people all over the world. Spain, Canada, Peru…. I am struck by the willingness of strangers to share intimate feelings. To share their own stories. To care so much about ours. We received a beautiful letter from a father whose young daughter had open heart surgery too. He will also need valve surgery. He writes, “ You have made it through the two darkest months of your lives. We know the stress. Things will improve in the coming weeks, months and years and the overpowering anxiety will fade… and so too will Sarah’s memories. There will be flashbacks and moments of worry in the future, however rest assured… the worst is behind you! I now have two warrior heroes to inspire me when the time comes for my valve surgery and I can only hope that I am half as brave as Olivia and Sarah!”

Sunday Night…. The hospital was triggering something in me I didn’t have hold of. I was anxious. Tense. Falling apart. Sarah wanted me to spend the night again. I couldn’t. I went back to The Hotel with Rachel. It was the first time Rachel and I were alone in over a week. We ordered room service. Changed into our pajamas. Watched TV. HEAVEN!!!! Sarah woke up Monday morning at 6:00 am. If her echo and x-ray looked good she could go home. She was so excited. She ate oreos for breakfast!!!! The Doctors were amazed. Daniel was amazed. The long stringy leaflets, the abnormal gap, the thrush of blood running backwards…. Gone! The repair was a success! The x-ray looked great! We went downstairs to the clinic so Dr. Newburger could officially release her. We had come full circle. On February 15 Sarah came to Boston Children’s Hospital with a very sick heart. On March 21 she said goodbye to the Doctors who saved her life. I cried. Sarah was discharged at 1:00 PM. It was snowing. Sarah didn’t want an umbrella. She stuck her tongue out to catch the big, wet flakes. Magic!!!!!!

Sarah\'s class sends her an AMAZING VIDEO!!! Sarah says My class misses me!!! We watch it 100 hundred times. Here is the link: http://www.youtube.com/watch?v=kWJ-zDUoKHg

Sarah proudly shows her scar to Cyrus! He says, \"Cool!\" Within seconds they\'re on the floor playing. The room looks like a bomb hit it. Rachel arrives. She\'s so excited to see her sister. She shows Sarah the cards her class made her. Rachel confesses she cried herself to sleep every night while we were away. Ten minutes later Rachel is bored. Wants to go back to the hotel. Daniel takes Rachel to a special dinner at The Four Seasons. I spend the night with Sarah. We sleep together in the bed. It\'s nice.

10:00 am I just woke up! Could have slept two solid days. Had to force myself out of bed. Daniel stayed with Sarah again last night! All those years of working the graveyard shift at The Pierre Hotel, putting himself through law school, gave him super human stamina. Sarah\'s being stubborn again. Refusing to take her medicine... Rachel is on her way up with Aunt DeeAnn. Sarah\'s boyfriend Cyrus- on his way up as well. Sarah is concerned about her bandages - doesn\'t want Cyrus to see her this way. Yesterday she asked what happened to her. Why are there bandages on her chest and stomach. She listened carefully and thoughtfully. She understood. We are sooo lucky to have a private room! Daniel and I are in awe over the care at Boston Children\'s Hospital. Best place on earth - if you have to be sick.

2:15 PM Sarah is mad as hell - but doing GREAT!!! She wants to go home! New York??? She says NO - HOME - THE FOUR SEASONS. She\'s eating bacon, drinking ginger ale, and sucking on life saver mints. What a difference a day makes!

5:00 pm Dr. Del Nido instructs the nurses to remove the main draining tube – the tube that prevents liquid from swelling around Sarah’s heart. It extends through the muscle into her chest cavity. Removing it causes enormous pain. The nurse tries to give her Tylenol. Sarah clamps her mouth shut. Doesn’t want medicine. Wants the nurse to go away. Her voice is hoarse from the ventilator. She screams. Mommy why did you bring me here? Why did you bring me here to hurt me? Everyone keeps hurting me. It doesn’t matter how many times we explain it. Doesn’t matter how often we reassure her. It doesn’t matter. It doesn’t matter. The “miracle” – to Sarah – was a violation. 8:00 pm Sarah’s heart is very enlarged. It’s been working overtime her entire life. It no longer needs to pump that hard. Dr. Del Nido did an excellent repair. The muscle doesn’t know that yet. It wants to do what it always did. Medication is the only way to slow the pump down. The valve needs to heal. The sutures must take hold. Blood pressure medication must be taken orally. Sarah clamps her mouth shut and hides under her blanket. Daniel and I talk to her. Softly. We make promises. Explain. Give her choices. Some control. It doesn’t matter. It doesn’t matter. The “miracle” – to Sarah – was a violation. We hold her down and force the syringe into her mouth. We have no choice. She screams, “Why did you bring me here? Everyone keeps hurting me.” 10:00 pm Daniel and I stare at Sarah. She sleeps peacefully. The swelling is gone. She looks incredibly beautiful. 10:15 pm Daniel walks me out of ICU. He offered to do the night shift again. I am extremely grateful.

2:15 pm After a rough night, Daniel slept about two hours - Sarah is OFF the ventilator. Awake and talking. It\'s important for her to move so her lungs stay healthy. Everything hurts but the pain in her chest is especially excruciating. She asks a lot of questions. Wants to know what they\'re doing and why? She\'s feisty. Dr. Newburger calls her a \"wild woman.\" She\'s pumped full of diuretics so her next big job is to pee on the toilet. 2:30 pm I\'m watching her sleep peacefully in a chair. The swelling in her face is going down. She looks like an angel.

8:42 am Daniel just texted me from the Hospital. They are waking Sarah up. I\'m desperate to get there. I took an ambien and half a xanax last night. OMG - I can barely move.

12:30 pm Dr. Del Nido speaks with us immediately after surgery. He is confident. The valve is repaired. The echo looks great. I cry. The weight of the world lifts off my shoulders. Daniel and I have lunch across the street. We have an hour to kill before Sarah is taken to ICU. We eat pizza and drink wine. For a split second we are ourselves. The unbearable stress of the last eight weeks is gone. We are normal. Normal parents with normal lives. 2:30 pm We head up to the 8th floor. Cardiac ICU. I’m excited. I can’t wait to see Sarah. Daniel warns me. Be careful. Don’t get your hopes up. I think I can handle it. 2:40 pm Sarah is sedated. On a ventilator. Swollen. Tubes everywhere. Blood drips out her nose and down her mouth. Her blood pressure is high. She has a fever. 3:30 pm Attending Doctors try to stabilize her. She fights the sedation. She struggles to breathe on her own. SHE DOESN”T WANT TO SLEEP. They increase the morphine. 6:00 pm Dr. Del Nido takes charge. More Doctors come in. Daniel and I leave the room. They work hard. Her pressure comes down. She cools on a mechanical blanket. Her heart rate lowers. Dr. Del Nido gets her exactly where he wants her to be. 10:00 pm I’m back at the hotel. Daniel is with Sarah in ICU sitting by her side. I\'m praying for my baby. Sleep my sweet baby. Sleep.

8:00 am We are at the hospital. Sarah is wearing the pink sparkly Hannah Montana dress Nana gave her for her birthday. The nurses present her with hospital pajamas. She takes one look at them and says \"NO WAY!\" Not putting those ugly things on. They agree to let her wear her sparkly dress into the OR. They will change her there. Sarah is happy. Cheerful. Playing with her beloved Seraphina - We take pictures. 8:15 am The anesthesiologist comes in with sleep medicine. It\'s time for Sarah to drink the purple liquid. Sarah Screams NO. She doesn\'t want to go to sleep. We do everything we can to talk her into drinking it. Her fear intensifies. She screams over and over. I DON\'T WANT TO GO TO SLEEP. 8:20 am Dr. Del Nido comes in while Sarah is screaming. Sarah looks at him. Screams louder. Dr. Del Nido asks how we are doing? Daniel says \"We\'re Fine - more importantly - HOW ARE YOU DOING?\" Dr. Del Nido laughs. 8:25 am Sarah is still screaming - Refuses to drink the medicine. The anesthesiologist pulls me outside the curtain. They\'re going to have to give her a shot. 8:30 am I hold Sarah in my arms. She clings to me. Pleading. Begging. Please don\'t let them give me a shot Mommy. I DON\"T WANT TO GO TO SLEEP. She looks at Daniel. PLEASE DADDY.... PLEASE..... 8:31 The shot goes into her arm.... 8:32 Sarah is angry, devastated, scared... She looks at Daniel and I. Why did you let them do that to me? WHY? WHY?... The anesthesiologist explains Sarah will be asleep within 60 seconds. I hold her tightly in my arms. Daniel whispers to her. We love you sweetheart. We love you. Go to sleep. Everything\'s going to be OK. We love you. I hold Sarah tighter. I feel her go limp. Her head falls back. The nurse takes her from me and lays her on the gurney. They cover her with her pink blanky and lay Seraphina by her side. I am sobbing. Uncontrollable. The tears won\'t stop. They ask if I want to give her a kiss before wheeling her away. I lean over and kiss her forehead. 8:35 am I cry in Daniel\'s arms. We hold each other tight. 9:12 am We are in the waiting room...

10:18 pm Sarah is in the bath - she asks why she needs to be scrubbed with special germ removing soap... We tell her she needs to be extra clean for her surgery tomorrow. She holds up her arm - points to the pin point bruise where they took blood today and says, \" I already had my surgery...\" Daniel and I don\'t know whether to laugh or cry.... xxxxoooo

11:00 am We are led into a private consulting room to meet with Dr. Del Nido. Dr. Del Nido says a warm hello to Sarah. Sarah stares at a Barbie Fairy Movie on my I Pad. Dr. Del Nido tries again. “Hello Sarah.” Sarah turns the volume higher. WON’T look at him. Dr. Del Nido tells us Sarah is first up tomorrow, provided the blood work comes back OK. We go over the plan. We are to arrive at 7:00 am. We will be led into a small waiting room. Sarah will be given sleep medicine. Within fifteen minutes she’ll look drunk and eventually pass out. Her last memory will be of us before being wheeled away. It will take approximately one hour to prep her before surgery begins. Daniel and I will be led into a large holding pen – We will spend the next six hours of our life – WAITING – WAITING – WAITING - with other parents of children who are also having surgery. 11:30 am Blood Work Daniel and I brace for the toughest part of the day. We are led down a long corridor into another packed waiting room. Dozens of children cower in their parent’s arms. Loud screams can be heard from behind closed doors. I flash on Dustin Hoffman getting his teeth extracted by Sir Laurence Olivier in Marathon Man. A little boy hides under a chair, as a parent marches her screaming three year old past him. He yells at his mother – “No way I’m going back there.” Daniel and I look at Sarah. She’s staring at the I Pad. No connection to what’s happening around her. They call our name. We enter a tiny room. Sarah hops on my lap. They ask her to hold out her arm. Daniel’s ready to step in and hold her down. I keep a firm grip on her belly in case she bolts. The needle enters her arm. We hold our breath. Sarah she sits perfectly still like a junkie contemplating the “high.” Long enough to fill two viles. We\'re speechless! Sarah proudly exits the room, walks up to the little boy who is hiding under the chair and thrusts her pink band aide in his face. She bounces out! 12:30 pm Blood work comes back OK. Surgery is on - as long as the symptoms of her cold don\'t get worse overnight.

7:30 am We arrive at surgery pre-op. A large waiting room filled with children and parents. A dry erase board behind the receptionist’s desk, lists in alphabetical order the surgical pre - op patients for the day. Sarah’s listed last. Weir. 8:00 am Sarah’s nose starts to run. 8:00 am Chest x-ray. Technician instructs Sarah to remove her shirt and necklace. Sarah is not happy. She wants to go home. The technician tells Sarah she can pick one parent to hold her hand. Sarah picks me. We go in the room. Sarah refuses to take off her necklace. Aunt Danielle gave her the necklace on Sunday for her birthday. Sarah begs the technician to let her keep it on. She says it’s for good luck. If she takes the necklace off she won’t have good luck. Devastated - Sarah eventually gives in. 8:30 am Sarah’s had it. She’s done. We have blood work, vitals, a meeting with Dr. Del Nido and the anesthesiologist to go. Child life specialist comes up with stickers, toys, books, and diagrams. Sarah refuses to look at her. There\'s no distracting. No friend making. 9:30 am Consent forms need to be signed. Daniel and I are asked to meet in a private room with a Doctor. Sarah refuses to let me leave her side. I ask if Daniel can sign without me. They say yes. I’m secretly relieved. 10:00 am Dr. Newburger examines Sarah. Her nose is running clear. Sarah snifflles every 30 seconds. She has a temperature of 99.0. Could be a sign of infection. We will know more after the blood work. 10:15 am We talk about postponing.

Drive to the hospital is quiet. Peaceful. Daniel puts a comedy channel on the radio. We laugh. Sarah watches tweedy bird on the DVD player. We pull into the parking lot. Sarah\'s face drains of color. She cries. She doesn\'t want to go to the hospital. We tell her today isn\'t her surgery. She calms down.

Slept holding Sarah in my arms last night. She woke up and asked, \"Mommy is today still my birthday?\" I said no and she cried, \"All my friends missed it.\" I promised her we would have a HUGE celebration when we get back to New York with everyone. We are off to the Hospital now.... Will update throughout the day.... xxxoo

Getting ready for bed. Tomorrow\'s a big day. Have to be at the Hospital by 7:00 am. After a day of cupcakes, birthday presents and a special dinner, we told Sarah what\'s in store for tomorrow. She\'s not thrilled about the blood work. Who would be? After watching Dragon Heart, Sarah is curious about scars. Daniel told her \"Scars are cool!\" They\'re proof you\'ve been through something... I showed her the scar from my C-section. She looked at me and said \"That\'s disgusting...\"

9:00 am Sarah wakes up with a runny nose. Daniel and I decide to cancel all plans to go outside today. We were going to take Sarah to the library and aquarium for her birthday. Instead we decide to eat lunch in the hotel and spend the afternoon watching movies. 10:00 am I email Dr. Del Nido and Dr. Newburger to let them know Sarah is excreting clear mucous. I ask if we need to discuss a back up plan in the event the repair doesn’t work. Something I hadn’t really considered, until Jeff ( a man who found us through the blog) shared his daughter Olivia’s story with me. Dr. Del Nido gets right back to me. He promises, tomorrow, we will discuss the surgery in detail as well as all back up plans. 1:00 pm Sarah and Daniel cozy up on the couch to watch Dragon Heart.

7:00 am - Daniel wakes up early to decorate the room with Happy Birthday balloons and streamers the way he does every year on the girls\' birthdays. It\'s a tradition. The hotel slides a note under the door letting us know they\'ve made special arrangements for Sarah to decorate her own cupcakes and have the ice cream man visit this afternoon. (Usually this is only offered on the weekends but they want to make every minute special for Sarah before her surgery) I am touched beyond words.

From the minute Sarah wakes up all I hear is, “Mommy when are we going to be there?” She’s talking about the hotel. The Four Seasons. Her favorite place in the world. Two years ago I worked on a film in Boston called “Mall Cop.” I lived at The Four Seasons for seven months. It was our home. “The Suite Life of Rachel and Sarah.” The plan is to leave New York at 1:00 pm. 11:00 am. My sister Danielle comes over with matching good luck bracelets and a bottle of xanax. I never took xanax in my life. Until 4 weeks ago. The bracelets are ruby red beads with a gold hand of god. Sarah wears hers for less then a minute. Danielle and I spend the next hour combing the apartment looking for it. 12 Noon Daniel pulls out a small carry on bag. The same small carry on bag he pulls out for every trip no matter where we’re going and how long we’re staying. “You’re going to pack light. Right?” By 2:00 pm Daniel is schlepping the same four large suitcases down the elevator he schleps on every trip – no matter where we’re going and how long we’re staying. “Mommy, when are we going to be there?’ We stop at Nana’s in Connecticut for lunch. Sarah is in heaven. Nana makes her a beautiful pink Barbie cake. Sarah blows out the candles on what she calls her “fake birthday.” Tomorrow is the real celebration. We get back in the car at 7:00 pm. Sarah is the happiest I’ve ever seen her. She loves the one on one attention. Rachel is in New York with Aunt DeeAnn. Sarah wears Rachel\'s clothes, sits in Rachel’s car seat and plays with Rachel’s things. Every thirty minutes Sarah tells Daniel and I she loves us. Followed by: “When are we going to be there.” Sarah knows she’s going to Boston to have surgery. She knows her heart beats too fast. She knows she has to have it fixed. No matter how many times we explain it to her: Sarah has NO idea what that means. We arrive at The Four Seasons. Sarah races into the lobby. She is so happy to be here!!!!

It’s a crapshoot. To quarantine or not to quarantine. Monday – 10 days out - I write Dr. Newbuger. She gets back to me immediately. The answer to your question boils down to a risk/benefit question. The chances of Sarah’s catching a new cold right now are quite low, since her immunity is likely to be higher after having just recovered from a respiratory infection. If your absence would be a stress to your husband and to Rachel, I would probably stay in NYC. If it isn’t a stress to be away at Sag Harbor, the proposed “quarantine” adds a small amount of protection against new infections. So….my answer is a definite maybe, as we say in my family – a tiny advantage re: infections to be in quarantine, but not worth it if it creates too much tumult in the family. Daniel and I go back and forth. His instinct is to err on the side of caution. He leaves the decision up to me. I roll the dice. We stay in the city. Friday – 5 days out. Sarah’s nose looks clean for the first time in months. I breathe a sigh of relief. I tell myself. It’s going to be ok. After going through the five stages – denial, anger, bargaining, depression…. I arrive at acceptance. I think about the teenage athletes who died last week. My fear of sending Sarah into surgery has been replaced by a bigger FEAR: The fear of Sarah NOT having surgery. Boston Children’s posts a chart on their web site with success/survival rates for each cardiac procedure. From 2006 – 2008 they preformed 91 mitral valve plastys with a 99% survival rate. In 2009 they performed 51 mitral plastys with a 98% survival rate. On February 15, I ask Dr. Del Nido… “Why isn’t it a hundred percent? Why did those children die?” Dr. Del Nido’s voice is calm and patient. “They went into surgery with issues… the heart muscle was damaged… Sarah’s heart is strong… She is healthy… she has no genetic disorders.” I flash on the article I read in New York magazine. Sometimes the heart doesn’t start back up after bypass. There are tricks they can do to get it started. Sometimes they have to cut their losses. I persist. “You’re telling me Sarah’s heart will definitely start back up.” Dr. Del Nido doesn’t hesitate. “Yes.” The last question before leaving Dr. Del Nido’s office is WHEN to schedule the surgery. Based on previous consultations, Daniel and I were operating under the assumption this is an elective procedure. We could schedule at our convenience in the next 6 months. I am a freelance Producer/Production manager. I work on movies and TV shows. I haven’t worked since May 2010. I turned a job down last June, for the first time in my career, to spend the summer with Rachel and Sarah in Sag Harbor. We had a wonderful summer. By November I am desperate to go back to work. I reach out to my contacts. I want a TV Pilot. They assure me something will come up. I get the call from NBC – one of my favorite companies – on February 10. They have a pilot coming to New York. Am I available? Feb 21 - beginning of May. Daniel and I discuss it. It’s perfect. I do the Pilot. We schedule Sarah’s surgery in May giving Sarah enough time to recuperate that if the show gets picked up (I know it will get picked up – It’s an amazing script) I’m available to work on the series. February 17 - I check back with Dr Newburger and. Dr. Del Nido to officially get the green light to take the job. I am shocked and surprised by what I hear back. There is a small RISK to waiting. They want to send Sarah into surgery under optimal conditions. NOW. NO JOB. Friday 8:00 am – 5 days out. To quarantine or not to quarantine. It’s a crap shoot. I rolled the dice. Sarah is healthy. I breathe a sigh of relief. We plan to celebrate Sarah’s birthday on Sunday with immediate family. Grandma, Nana, Aunt DeeAnn and Aunt Danielle. Sarah wakes up every day asking, “Mommy, is today my special day?” Friday 5:30 pm. I pick Rachel up from hip-hop dance. We ride down the elevator. She sneezes. She sneezes again. I ask her if she is ok. No. Mommy I have a cold. A cold. When did you get a cold? Today at school. I rolled the dice. It was a crap shoot. My Mom lives 45 minutes away on Long Island. It’s Friday night. Rush hour. I call Daniel. He was up at 5 and at a business lunch all afternoon. He’s too exhausted to drive. I tell Rachel to pack her things. I’m taking her to Grandmas. Daniel and I have a quick conversation before I leave. This is the last time the girls will see each other before the surgery. Should we make a big deal? We decide not. They say a quick and hurried goodbye. No hugs. No kisses. Rachel is contagious. Have to get her out of there. It was a crapshoot. To quarantine or not to quarantine. I rolled the dice. We cancel Sunday’s party. We decide to drive up to Boston on Sunday. We’ll stop at Nana’s on the way. Nana will make it a special day special for Sarah. SATURDAY MORNING – 4 days out. Sarah wakes up OK. Maybe we’ll get lucky.

I heard today on Good Morning America that a third young athlete collapsed and died this week. My heart goes out to the parents of those beautiful teenagers. I can\'t imagine what they are going through... Like those athletes, Sarah looks perfect. So PERFECT that when I was told, last June, by the Doctor that she heard a slight murmur, I dismissed it. Rachel had a murmur. It was nothing. Daniel and I agreed we would get it checked but we were pretty certain it was nothing. At her regular physical, Sarah barely let the stethoscope touch her chest before karate kicking the pediatrician across the room. Sarah had been phobic about Doctors her whole life. Daniel suggested he take her to the cardiologist alone. He stood a much better chance of getting her to play the \"tough chic\" if I wasn\'t around. I agreed. \"What happened? How did it go?\" I said. \"She refused to let him touch her. Doctor tried everything. \" Daniel said. \"They\'re going to have to sedate her in the hospital order to do the echo.\" I remember thinking, shit, we\'re leaving in a few days to spend the summer in the Hamptons. She\'s PERFECT. We\'ll get her tested when I get back in September. The bills started to come mid September. Village Cardiologists. Insurance covered 80 percent of Sarah\'s June visit. We owed $20. For some reason I didn\'t pay it. I always pay the bills on time. I have a phobia about late payments. But every month another bill would come from Village Cardiologists and every month I would look at it and put it aside. We were so over due that by December they started coming in red ink. We never took Sarah back for that check-up. I paid the bill in January. Two weeks later, Sarah told us her heart was beating too fast. She was perfect. We didn\'t think much of it. One week after that, Sarah said her heart was beating fast again. Daniel put his hand on her chest. It felt like a jackhammer pounding away at the inside of her chest. We were concerned. We had her sleep with us that night. She woke up the next morning and seemed PERFECT. We went on with our lives. The following week Rachel got annoyed. Sarah was pulling the \"my heart\'s beating too fast\" routine pretty regularly now and it was working. She slept in our bed most nights. Next morning Daniel looked at me and said. Make the appointment. I\'ll take her. The morning of Sarah\'s appointment, Rachel, Sarah and I had been up the night before with a stomach flu. Daniel texted me at 2:00 PM. How is she? She seems ok. Are you positive? I need her in a good place for this. She isn’t complaining. Ask her if she is up for it? She got excited when I told her you were taking her for a special day- first the doctor and then for a little toy. ******** Something inside Sarah had changed. She couldn\'t wait for Daniel to take her to the Doctor.

We decided to keep Sarah home from school this week. I guess we needed to feel like we were doing something to prevent her from getting sick. Last night I bought hand sanitizer and baby wipes and placed them all over the apartment. Rachel looked at me like I was crazy. Of course, Sarah\'s nose started running this morning. I just received this beautiful note from one of the Mom\'s in Sarah\'s class... Hi Pam, I picked D... up from school today, and he said that Sarah was not there again, and he misses her. (he has told me everyday since monday that she is out). I Hope everything is ok with Sarah. D... also did say something about surgery last week that Sarah was talking about. I am very concerned for our friend Sarah, and D... misses her dearly. I hope everything is ok with you and your family. Please let me know if there is anything I can do. I truly hope Sarah is ok, and whatever surgery she is having, I hope her bright smile and infectious spirit makes everything all better. Sarah is always a big joy to see when I go to the classroom for \"class mom\" activities. Again, I hope everything is ok, and Sarah feels better soon.

Surgery is one week from tomorrow. Everything matters now. Sarah must be in perfect health with no issues. How does one keep a five year old in perfect health? For a minute we considered quarantining her in Sag Harbor with me, but decided the emotional toll of being away from Daniel and Rachel was too much. Rachel is starting to ask about the surgery. She wants to know exactly WHAT they plan to do to her sister. Child Life Specialist says be as truthful as possible. Worse mistake parents can make is lie. Kids should never feel tricked or betrayed. It seems obvious... yet... Sarah felt betrayed by a throat culture yesterday... xxxxooo

When Sarah was diagnosed I was instantly flooded with memories of father. For the last 6 weeks, I was back in that hospital room reliving the Doctor telling me \"He didn\'t make it.\" I was sixteen, in my parents’ bathroom getting ready for school. My parent’s were in their bedroom, talking, just outside the door. My father was trying on a suit he hadn’t been able to fit into for years. He had recently gone on a diet and lost twenty pounds. I remember applying eyeliner, thinking: SAY SOMETHING. SAY SOMETHING. TELL HIM HE LOOKS GOOD. I started to shake. Every fiber in my being resisted that voice in my head. Apparently it\'s common not being able to tell those closest to you how you feel. I recently saw Oprah give an interview to Barbara Walters. The topic turned to her best friend Gail King. Oprah said: She is the mother she never had. The sister she always wanted. The best friend everyone deserves. Then Oprah started crying. Damn. She swore to herself she wasn’t going to cry. Barbara asked, “Why are you crying?” Oprah said: “Probably because I never told her that.” I was angry. All my friends were going on a school ski trip that weeeknd. It cost one hundred dollars. I begged my father to let me go. He said no. We couldn’t afford it. That night at dinner I told my father I HATED him. He sent me straight to bed. I cried myself to sleep. The next morning my father came into my room and took a crumpled five dollar bill out of his pocket. He reached his hand towards me. I crossed my arms and refused to look at him. He told me he loved me. I said nothing. He waited a minute and said it again. I LOVE YOU. I turned away. He walked out of my room. I never saw my father again. He died of a massive coronary later that afternoon. Today is the anniversary of his death.