When I pulled up to the hospital yesterday and walked through those sliding doors, whirring officially shut behind Amelia and I with a snap, I was calm. I’m not sure how I paint myself here on my one-dimensional blog, but I’ve never been prone to anxiety or cases of the vapors, and typically in the moment, I’m about as calm and collected as they get. This was no different.
I gripped my phone like a talisman and strode over to the desk where sure enough, a new volunteer greeted me to help me find my way. The scent of lilies was heavy in the air and I tried mouth-breathing (one of the few perks of having been a barfy pregnant lady) to stave off the smell. Calla lilies are one of my favorite flowers, but the rest of them remind me of all of the friends I’ve buried.
Amelia, refusing to be held, led the way through the hospital, past the gift shop where I bought her heart necklace, past the chapel where I prayed for her, past the cafeteria where I remember laughing for the first time, my throat rusty and dry, the laugh unfamiliar, past the NICU and PICU, her little legs chugged along, sturdily running so fast that we had to half-jog to keep up with her.
Finally we reached an unfamiliar corridor and the volunteer whom I’d been handily chatting about tropical plants with bid us adieu. Amelia trucked on ahead, thrilled by the freedom to run up and down the corridors, uninhibited by the ghosts that roamed them.
When we found our way–because Mili always finds her way–I saw the Children’s Memorial Hospital sign on the wall across from her new neurologist’s office. In a bizarre twist of fate, this happens to be a satellite unit of the same hospital that I did my pediatric rotation through years ago. It’s an amazing hospital.
It’s hard to believe that my daughter is now a patient.
In the waiting room, Amelia made a beeline for the crayons and happily dumped them out all over the table. Screw coloring.
Eventually, we went back and met with the neurologist, who I was understandably anxious to meet. Neurologists, for those of you happily unawares, aren’t perhaps the kindest of all doctors. They’re sort of at the top of the doctor heap, only beaten by infectious disease doctors, and what’s more is that they know it. So people skills aren’t exactly important to their profession.
I was prepared to go all Campaign of Terror on him and be all “you DO know who I AM, don’t you?” and not because I am a pitiful blogger who might pathetically attempt to sully his reputation on the internet (I wouldn’t), but because I come from a line of well respected doctors who are well known. My now-middle name would be a dead giveaway, but I was all, you’ve got to know when to hold ‘em and know when to fold ‘em and stuff.
I didn’t even have to whip that out because he was FULL of the awesome. When Amelia took his reflex hammer and started trying to test out MY reflexes, he simply went and got another one rather than try and wrestle it out of her fists of fury.
For any of you not playing along at home, Amelia was born with a midline parietal enecephalocele which is a neural tube defect caused by the failure of the embryonic neural tube (the primitive spinal cord) to close properly. Her skull didn’t fuse and part of her brain, the part right about at the crown of her head (for anyone who doesn’t know where the parietal lobe of your brain is) developed outside of her head. It was a true encephalocele, not a meningeocele, meaning that there was actual brain matter inside of the defect, not just cerebrospinal fluid.
Having an encephalocele reduces the likelihood of survival at birth to 21%. Half of those live-births survive. Of those survivors, 75% have a mental defect. The poorest indicators for survival and associated anomalies are true posterior encephaloceles. Like what my daughter, Amelia, was born with.
At three weeks of age, she underwent massive neurosurgery to repair the bony defect in her skull with a skull implant and to remove the herniated brain tissue that had developed outside of her skull. The surgery was a success.
Mili’s neurologist suggested that we follow up with an EEG to look for any possible seizure activity while she is sleeping, as she displays none of the signs of seizing while she’s awake, because it is the last thing that can be treated. Neither the neuro nor I believe it’s seizures, but it’s worth a shot.
Any other developmental problems are simply a continuing result of her encephalocele and the microscopic neurological problems that they caused when she was developing.
Logically, I knew this. But my heart was filled with darkness as I left the office, my daughter chasing the light shining through the windows in the corridors of the hospital as I trotted to keep up with her. I wanted it to be easier.
I ducked into the gift shop and bought her a necklace. A new necklace for a new battle. And as I strapped it to her brave chest, the tears falling down my face, I whispered, “there’s the light, Princess of the Bells. Now you find your way. Don’t let anyone stop you. Ever.”
And she won’t. She’s her mother’s daughter, and if I can find my way in this crazy fucked up world, my daughter will, too. Her light will guide her, just as mine has. In lumine tuo, videbimus lumen.
I’d do anything for my wife. It’s a running joke between us that I’d even die for her—take a bullet, a knife, name your poison. The joke part is that for as long as we’ve known each other, she’s said she’d never return the favor.
What makes this funny now (and when I say funny, I really mean sad) is that after 22 years together, we’ve never felt more apart. She wants to end it. She says she loves me, but isn’t in love with me, and she’s not sure if she ever truly was. She says I’m her best friend but she no longer feels comfortable being naked with me. She wants to move on with her life.
I know the way we’ve been living is unhealthy, codependent and whatever else Dr. Phil is talking about these days. I know that the reasons we first got married—my mom was dying of cancer, I needed someone to take care of me, and Caryn needed someone to take care of—are no longer reasons to stay together. Christ, I’ve been in and out of therapy half a dozen times since we first met. But I also know that, unhealthy or not, this is the only love I’ve ever known.
Caryn says I’m too intense, that I’m critical, that I’m sarcastic, that I’m depressed, that I’ll never enjoy going out dancing with her. What she’s really saying is that I’ll never be the person she truly wants, and she’ll never be the fantasy woman in my head.
For the last five years, we’ve been going through the zombie suburban motions for the sake of the kids, or because our hands were tied financially, or whatever other excuses we made for hanging on to the status quo. Six months ago, during one of our typical Sunday-morning arguments with the bedroom door shut and the kids downstairs, Caryn said, “no mas”—and since then, our everyday life has been like a rehearsal for death.
I picture myself growing old and being alone, and I get that sick jolt in the pit of my stomach when it hits me that I’m done, it’s over. I’ve always been the type of guy who, given the choice between a straight line and a more circuitous path, would choose . . . the path Caryn chose for me. Heartbreak and grief—ping-ponging between numb and angry—I have to do alone.
Caryn’s laugh has always been the biggest turn-on for me, and we’ve laughed together a lot, from the first time she showed up at my apartment more than 20 years ago wearing a pair of Minnie Mouse sunglasses. But during our zombie years, she slowly turned her back on me. The worst of it was lying in bed knowing I couldn’t touch her. It sent me back to our first few dates when, in a foreshadowing of her future ambivalence, she wanted to break up. I’d worked hard to change her mind then, bombarding her with late-night calls. Now I was determined to do it again. My plan was simple, really: I’d find a way to change myself. Caryn would fall in love with me all over again and we wouldn’t have to have this stupid conversation for another 20 years.
So I shaved off my beard.
I know that doesn’t sound like much, but to me it was a symbolic gesture signaling more significant changes to come. I’d worn a beard for more than 30 years, and I told everyone I’d finally shaved it off because it was getting gray and making me look old. But the truth is that I did it because I wanted Caryn to see me differently.
“Did you get a hair . . . OH. MY. GOD!” she howled when I came home clean shaven, feeling like a new man. She said I looked younger, but really not all that different, and a few minutes later she went back to the Sunday Times crossword puzzle.
It was sort of the same deal when we both got tattoos a few summers ago. I got a large Chinese symbol on my left arm that roughly means “to live,” and Caryn got a smaller version on her ankle that means “freedom.” We said these would be constant reminders of what we want out of life. We also thought they looked cool. What I didn’t understand at the time was that although I wanted “to live” with her, she wanted “freedom” from me.
When my close shave failed to get her attention, I tried something really scary: yelling at our kids. Caryn was always on my case for ceding the responsibility of disciplining our two sons, because it meant she was always the bad guy. She was the one who told them “No!” or yelled at them for fighting or leaving empty Cheez Doodles bags under their beds, and then I’d waltz in from work, plop down in front of the big-screen TV and hang with my homeboys.
So no more Mr. Nice Guy. The next time Rob, 14, and Zach, 13, went at it, I swung into action. “What the hell is up with you guys? When are you gonna grow up and stop this stupid crap?” I screamed, making sure Caryn heard every syllable. I took away Robbie’s laptop and Zach’s cell phone. They shrugged if off, since they knew they’d get it all back in a matter of days, if not hours.
“Why are you yelling at them like that?” Caryn asked, and for the life of me, I didn’t have an answer.
I’d always let Caryn make the major decisions in our life. She was the one who said let’s get married, the one who said let’s have kids, the one who said let’s adopt when we couldn’t. As I saw it, this was about love—it made her happy, so she’d love me even more. In fact, she complained for years about the burden of having to make all these decisions, and now she wanted out. Well, I’d show her.
“I want Chinese food tonight, goddamn it!”
“I want to see City of God!”
“I want to build a new deck in the backyard.”
“I want to have sex—now!”
To all of which Caryn pretty much said, “Okay.” Things were finally changing around here, I thought, but for some strange reason I pictured George Costanza saying it.
When I wasn’t barking orders, I shut the hell up. Caryn and I had always been great talkers. We’d go on about everything, pick it to pieces and then start all over again. You can avoid a lot of stuff by talking. The truth is, when one of us talked, the other didn’t always hear it. We took in what we wanted and interpreted it to fit our own rationalizations and arguments. So I decided to try the tough-guy silent treatment (which, not coincidentally, was both our moms’ favorite form of punishment). I also gave her more space. I’d go downstairs to watch TV instead of lying silently in bed next to her. If she was in the kitchen, I’d go into the living room. On weekends, we’d go our separate ways and meet up for dinner. I never felt more disconnected in my life. It was as if blood had stopped flowing to my heart.
My friend Doug, the art director for the Web sites I’m in charge of, would listen sympathetically and share whatever emotion I was tangled up in. If I was pissed at Caryn, he’d call her “that bitch,” and if I was feeling the least bit hopeful, he’d egg me on. He told me one day he thought I was being incredibly selfless, and went on to say how men, in general, are all too willing to twist themselves into pretzels. I nodded absently, but knew that he couldn’t be more wrong. It was all about fear. I was scared to be alone. I was scared of the unfamiliar. I was scared of opening up. And (damn you to hell, Dr. Phil!), deep down I was scared to be happy—with or without Caryn.
After a month or so, my Kafka-esque transformation just stopped. As I looked at myself in the mirror while shaving, it hit me that, other than my beard, there was no growth attached to any of my so-called life changes. Transforming myself into someone I thought Caryn would want me to be was exactly what she had always wanted me not to do.
The real tough stuff was still locked away because I didn’t have the courage to go there. The deeper truth of our marriage, the stuff we’re not proud of but that connects us on the most basic level—fears, judgments, evasions—that’s what we both needed to face if our marriage were to have any chance in hell.
So for the past few months, we’ve been doing the therapy thing. And when we walk out of each session, Caryn says it feels like she’s just taken a bullet, a knife, name your poison.
Under a heart-shaped magnet on our refrigerator, there’s a New Yorker cartoon I knew Caryn would get a kick out of, a picture of two women immersed in serious conversation. The caption reads, “It’s easy. The first step is to entirely change who you are.”
It’s the second step that’s a bitch: figuring out what we really want. I keep asking myself the same questions over and over. Why do I still want to be with someone who no longer wants to be with me? Am I really in love with her, or do I just need to be loved? I could give you the usual psychological mumbo-jumbo—my need to stay with the familiar rather than explore the unknown, how Caryn reminds me of my mother and vice versa—but I think it’s simpler than that. There’s a place in my heart that is Caryn’s, and no matter what happens between us, that place will always be hers.
Sometimes I imagine how it would be if we went our separate ways. I see myself sitting alone in an empty apartment and there’s a knock on the door. It’s Caryn, and she’s wearing those ridiculous Minnie Mouse sunglasses again. She’s standing there, crying softly, and between sobs she says, “I’ve been such an idiot!” I hold her tightly in my arms, and as she takes a deep breath, I feel her holding onto me.
In the fall of 2003, a couple of months after our first anniversary, my husband, Jordan, and I decided we wanted to try to have a baby. It had been my observation in my 24 years that when a couple made that decision, it was a simple matter of the Mommy discontinuing her pills, throwing away a diaphragm, or no longer getting that shot every three months. In some cases, the choice was taken away by an ineffective birth control method (Hey Baby Sis!) or the sheer stupidity of two teenagers in a back seat.
But not being ABLE to get pregnant? That thought never occurred to me. I mean, how hard could it be?
As it turns out, it can be very difficult. I think most people know that a certain hormonal cycle needs to take place for reproduction to be possible. When I came off my birth control, that cycle didn’t come back like it was supposed to, so off to the doctor I went.
My OB/GYN didn’t seem too concerned, just gave me progesterone to kick-start the cycle, then Clomid to stimulate ovulation. I know now that jumping the gun like that with no further investigation was a mistake. Hindsight and all that.
By this point, I of course had been online learning as much as I could about trying to conceive, or TTC as any of you message board veterans know it. I ended up with so much more knowledge about the reproductive process than I ever wanted. So I knew that I was extremely lucky to get pregnant on my very first round of Clomid.
Jordan and I were over the moon at the sight of that plus sign. We called our families and friends to share the good news.
Because I had used Clomid, my OB wanted me to have an early ultrasound so I went in at eight weeks pregnant. He mentioned that the baby was measuring on the small side and the heart rate was slower than it should be so he wanted me to come back in two weeks.
I tried not to worry. I just chalked it up to maybe being a few days off on calculating the gestational age. At ten weeks, I went back, this time with my husband.
“What’s conspicuous in its absence is the heartbeat.”
That’s what the doctor said to me as I was trying to register what I was (not) seeing on the screen. I’m sure you can guess how devastated we were. I hope you can because I can not come up with any words to describe it. If it helps you understand, know that now, six years later, I am trying to keep the tears from hitting the keyboard as I type.
After I was dressed again, the doctor gave me some options in his very calm, clinical voice. He told me he was on call through the next day so I could have a D&C done then, I could wait until he was on call again the next week, or I could wait and see if I miscarried on my own.
The thought of walking around for any amount of time knowing that my baby was gone was more than I could handle. So we scheduled the D&C for the next day, Thursday, April 22, 2004.
There’s not a lot of actual events from that day that I remember. All I remember are emotions. I don’t recall the ride to the hospital or the OB talking to me beforehand. I know that there was an emergency C-section taking place in the operating room I was supposed to go to, so they left me laying on a bed outside of the room for what seemed like hours.
All I could think was “Why can’t they go ahead and knock me out so I don’t have to sit here and think about what’s about to happen?” They finally came and got me. I was still awake when they strapped my arms down on each side and did all the prep work. When I woke up in recovery, I was already sobbing.
At least one of the nurses hugged me and tried to cheer me up the best she could. I honestly don’t remember anything after that. I don’t remember going home, talking to anyone, or even seeing Jordan, even though he drove me there and back.
As is usually the case, my doctor told us to wait a few months before trying again. So we did. The second round of Clomid also resulted in pregnancy. I got a positive test on a Monday. That Saturday, July 24, 2004, I woke up cramping and bleeding. I knew exactly what was going on so we headed to the ER. Obviously, at just five weeks, there was nothing they could do besides make sure it wasn’t ectopic or otherwise complicated.
The next week I went back to see my OB/GYN. At this point, he referred me to a Reproductive Endocrinologist (RE). The new doctor finally diagnosed me with PCOS, put me on some new meds, and performed a hysteroscopy to remove some polyps in my uterus. After all of that, he prescribed another round of Clomid. Again, I got pregnant right away. Remember the date of my second miscarriage? Well, on Sunday, July 24, 2005, Jordan and I brought home not one, but TWO beautiful, perfect, two-day-old baby girls.
I know that our journey to parenthood was not as dramatic or as lengthy as some. I’m thankful we didn’t have to do more, such as IVF, IUI, etc. But, just as in every life issue, knowing that someone out there has it worse than you doesn’t lessen your pain. There are women out there who have had 7 or more miscarriages. That fact certainly doesn’t stop the pain that is still inside me, even after so many years.
A mother is a mother whether her children are here on earth or waiting for her on the other side.
Before I became a mom, I had a certain expectation of what motherhood would be like. We would have a healthy baby, she would have so much in common with Lance, my husband, and I. She would be an avid reader, unable to put a book down. She would be well-spoken, and involved in theater and maybe even debate club. She would be musical, marching in the band or playing in the orchestra. She would have a regular spot on the honor roll.
When Anna was born, she was healthy. The fact that she scored 9 on the Apgar scale was a point of pride. Then, after a few days, our world slowly started to turn upside down.
When she was diagnosed with Maple Syrup Urine Disease at eight days old, a whole new definition of motherhood was thrust upon me. I had a very sick baby, with a disease with a weird name about which I knew very little, and who was potentially brain damaged. I was introduced to a world that I never knew existed.
I never knew what leucine, isoleucine, and valine were, or how much my daughter would be allowed to have within a day.
I never thought I’d be in an emergency room watching a doctor and a group of med students smell my daughter’s diaper.
I never knew how terrifying a simple stomach bug could be.
I never thought I’d have to use my entire body weight to hold down a screaming child so the nurse can insert an IV that will save her life.
I expected to use our blender to occasionally make margaritas. Not to blend a foul smelling medical formula at least once a day, every single day, for almost 13 years.
I never expected to burn out 3 blenders during those almost 13 years.
I never thought I’d have to poke my daughter’s heel/toe/finger to bleed it out on filter paper, or check urine samples to see how cloudy they are when mixed with DNPH chemicals.
I never expected to have to explain my daughter’s disorder to everyone.
I never thought I’d have to patiently re-explain when someone would say “she can’t eat meat… but she can eat chicken, right?”
I never thought I’d throw my “what to expect’ book against the wall because she was not meeting developmental milestones like the experts “expected”
I never thought I’d know what an IEP is.
I never expected to be cheering for her as she competed in the Special Olympics.
My version of motherhood never included all of these challenges. This was not what I signed up for. Yet, despite all of these challenges I’ve faced as a mom, I wouldn’t trade one of them. I will face all of those, plus whatever else MUD throws at me, because that is what it means to be Anna’s mom.
Twitter was there when I returned to my OB’s office for the first time after my newborn daughter died. I grew anxious as the minutes passed and she didn’t pop into the exam room. But, somehow, knowing people were out there listening as I was stuck in a tiny cell filled with pregnancy memories, I managed.
This wasn’t the first time Twitter was there for me. I reached out through Twitter and blogs just a few days after Cora died. Social media gave me purpose those early days. I wanted to share Cora, share her beauty, and the best way I knew how was by talking about her. I did constantly. And, people listened, reached out, let me talk about her. On days when I couldn’t find the words to speak, I could always find something to write.
Some of you might be aware of Cora’s story, but in case you aren’t, here goes. I had a healthy pregnancy and delivered Cora November 30, 2009. She lived five healthy days, no signs of a problem. One morning, I was breastfeeding her. I looked up for a second and looked back down and she was dead. Suddenly. Out of nowhere. It’s so traumatic. I sometimes worry I give people PTSD just sharing her story. We rushed her immediately to the hospital, but it was too late.
Turns out she had an undetected congenital heart defect. The coroner told us a few days later. We looked up congenital in the dictionary, and I took to the web. A Google search was sort of helpful. But even more helpful? Connecting to real live people that picked up on my tweets naming Cora’s killer.
What’s helped me more than anything is giving back. Cora changed me so much. I’ve never felt such love. She was stunning, in so many ways. I instantly felt a need to make sure that beauty multiplies. On most days, the only thing that keeps me from losing my mind and crawling into bed and never coming out is sharing her. Knowing she’s reaching people and saving lives.
I never thought I’d get out of bed each morning because of blogging and Twitter. I remember feeling silly at first emotionally spewing everything on my blog, but the silliness was outweighed by the support. By all the people that felt like they knew Cora and wanted to help spread her story.
Blogging gives Cora a voice. Cora lives.
People are what got me through ultimately. The power of the good of people. And, the blogging community? Full of some of the best.
