We thought we were in a dream, all the joys and fears at the same time. We got two cribs, two sets of every outfit (but in different colors), two swings, two of everything…except two identical boys.
We lost Jonathan James when he was 7 months (in utero). I was given the choice, but I never held him. I had to carry his identical brother Lewis Jordan, for an additional 7 weeks. He just was not ready to leave his brother until then. We knew about the extreme risks of twin-to-twin transfusion, how our surviving son would likely have severe brain damage as blood shunting causes terrible problems for a developing baby. We prepared ourselves for the very real possibility that our surviving son might not recognizing us, speak or walk.
We were destroyed.
I spent the next 7 weeks in a rocking chair in the nursery with TWO of everything; rubbing baby lotion on my hands and inhaling, trying to stop the sobs and the unearthly sounding wails that came from deep within my heart.
But I had another to worry about. Lewis. During all this turmoil, the grief over Jonathan could not be allowed to hobble me too badly, I could not let it, I had to be ready to care for the child that was alive and waiting to meet his parents.
Thank Christ the doctors were wrong about Lewis’ challenges. He was born by C-section on a cold January day, crying out when they removed him from his space. I know he cried out because they were taking him from his beloved brother, Jonathan. They thought it was because he was cold and the lights were bright. Fools.
His kidneys began to shut down 3 minutes after he was born. As they whisked him away from me, I demanded my husband leave my side and go with our son, to protect him, and promise to bring him back to me, healthy and safe.
The OB asked me if I wanted to see Jonathan, warning me that the body’s natural reaction is reabsorbtion, I asked only one question, “are you sure they were identical?” The doctor replied, “one sac, one placenta.” I replied with a heavy heart while still wide open on the operating table, “no, I already know what he looks like, just like his brother.”
Two hours later, my husband brought back our son, placed him in my arms and kissed my forehead. The doctors had stabilized him, no further medical issues had arisen and today he is a healthy, happy, wickedly intelligent nine-year old boy.
I will forever be happy that our son is healthy.
I also will be forever crushed that he does not have his twin brother.
I wish I could make the ache go away.
I wish that I was not jealous of other twins.
I will always wish that I had been strong enough to bring both of my sons into this world (though I followed every order from the medical establishment, I will always blame myself).
Our timing was so perfect. We tried casually to conceive for a couple months, then got pregnant the first month I charted my temperatures. Our baby would be born in May, a month I thought was perfect to have a baby. I’d be off all summer on maternity leave, and I’d still be thirty–a milestone that felt like a relief after our decision to start a family seemed to come not a moment too soon. I had almost made it to the end of the first trimester when I started spotting. We went in for an ultrasound and the baby measured 9 weeks, when I knew for sure I should have been closer to 10 weeks… but there was a heartbeat! We had some sweet relief for a week, in which I felt comfortable telling a few more people at work–because the chance of losing your baby after you’ve seen or heard the heartbeat goes down dramatically. But then my hormone levels seemed to be falling after another blood draw. Dr. Google told us that it was normal for HCG levels to fall later in the first trimester, so we tried not to go wild with worry over a weekend spent waiting for Monday’s ultrasound.
Our baby had grown and developed more in the week since we had last seen it, and there was still a heartbeat. The ultrasound tech spent a long time looking at the baby, doing things we didn’t really understand like examining the blood flow. She gave us a couple pictures and said “good luck with everything.” We went back into the waiting room for the midwife on call to let us know the results. They handed me the phone across the front desk and she started by telling me that yes, there was a heartbeat and that was a good sign, but… BUT. The nuchal fold looked thickened, which was a sign of a chromosomal abnormality. We would need further tests and they would help me get the screening scheduled. She was going to come in to talk to us more. I looked across the room at Jed in utter terror. He rushed over to me and I couldn’t believe I was getting this news over the phone in the middle of the waiting room. I started crying instantly and they ushered us into an empty exam room.
We held each other, crying and afraid, until the midwife came in to expand on the bad news. What the tech saw in the ultrasound didn’t look good–the thick nuchal fold and an omphalocele, I would probably miscarry. In the meantime we would go to a big nearby hospital for a better ultrasound. Either way, we would probably “have some decisions to make.”
That was a Monday. The next ultrasound was on Friday. Neither of us went to work that week. We stayed in, crying, devastated. I needed help getting out of bed every morning because the sadness was paralyzing. We distracted ourselves by painting the kitchen and baking zucchini bread. Our 4th anniversary was on Thursday. I was 11 weeks pregnant with a dying baby.
Friday arrived and we trekked through the hospital to Maternal and Fetal Medicine and one of the top ultrasound doctors in the country. The room had a second ultrasound screen on the wall facing the exam chair, so the mamas can have good views of their babies. I couldn’t decide how much I wanted to look. My husband wanted to punch the resident who hovered around, looking at the screen with barely veiled repulsion. I didn’t notice; I was busy trying to survive. After a really long exam, we sat in a meeting room with the doctor and a couple nurses, where the doctor explained that our baby had edema–cystic hygroma–all over its body, to a level that indicated a chromosomal abnormality so severe the baby wouldn’t survive. There was no way to predict how long I would stay pregnant. I could miscarry that day, or I could go to term and deliver a baby with a certain death sentence.
Termination for medical reasons was suddenly an option they would help me look into.
We went home in shock. It was impossible to comprehend the gravity of this most horrible thing that had ever happened to us. We made the heartbreaking choice to terminate our much-wanted pregnancy and scheduled the appointment. There were only a couple places in our area where I could get an elective termination, despite it being for a pregnancy with no chance of a positive outcome. My midwife wanted to help me but there was nothing they could do in their office.
While we waited for that awful date to arrive we both went back to work. I was like a ghost. People were sad for me and each hug made me cry. I also kept catching myself in “preparing for parenthood” mode—bookmarking an article about librarianship and parenthood, making note of the book about treating common childhood illnesses at home, realizing my new shirt would also make a good maternity shirt. Telling a coworker about how we thought we might dress up our 5-month-old as an acorn for Halloween next year. Falling silent and trying not to start sobbing. I realized my life wasn’t in that place anymore, but my heart hadn’t caught up. I hadn’t yet fallen out of the habit of preparing for baby.
Late that week I felt like my symptoms were diminishing–my nausea was suddenly totally gone. I made a last-minute appointment with the midwife to check for a heartbeat. If there wasn’t a heartbeat, I wouldn’t have to go for the termination and I could stay in the care of my midwife for whatever happened next. The ultrasound tech–who I now reflexively hated–told me I didn’t have to look at the screen while she checked for, and found, the heartbeat. It felt so cruelly wrong that I had almost been hoping for the opposite. I wanted the suffering to be over, for us and my poor sick baby. The midwife understood my emotional state and emphasized that when abnormalities this severe are found this early, there is no chance of survival.
That weekend we went to have dinner at my parents’ house. We’re close with our families, and in a terrible piece of timing, my parents had been in France this whole time and dealing with our news on their vacation. This also meant seeing my sister-in-law who was also pregnant, with the same due date as mine. You read that right. She’s not the most empathetic person, and this was the first day of the next seven months she spent avoiding us.
The next day we arrived at the family planning clinic at a different big hospital in the area, first thing in the morning. The only other people in the waiting room were a small cluster of people centered on a very sad woman. They were obviously there for the same reasons we were–the pain bubbles around all of us were huge. We got in to see the doctor and asked if we had any options as far as anesthesia, because we had been told that today we’d decide with the doctor whether I’d be put to sleep. This seemed like news to the doctor, who kept talking about how it was less expensive to do it the way they usually did–local anesthesia only, awake the whole time. That was pretty much the last of our concerns, not to mention the fact that amazingly my insurance was going to cover it either way and we ended up paying $47. But we just numbly moved forward. It was happening. She flipped on the ultrasound and we saw our baby for the last time, laying peacefully in my womb, no heartbeat. I suppose we could have walked out right then, but it was over for our baby, and we wanted it all to be over so we could move on with our grief. Three hours later, the baby was no longer a part of me and we were on our way home, empty. The D&C was painful and traumatic. It couldn’t have taken long, but it felt like forever. The physical pain was a distraction, but so inconsequential to this pain I was positive was going to be lifelong.
Our terrible limbo was over, but this was only the beginning of our suffering. I write this now almost a year out from the nightmare, with a baby girl who appears to be healthy kicking in my belly, but the intervening months–and subsequent bonus chemical pregnancy just to show how very cruel life can be–have changed me forever. I will never have the innocence of getting pregnant and assuming I’m going to have a baby. I can still place myself right back in the pain and terror of the slog of grief.
I don’t know if I will ever be able to live down the guilt that I feel for abandoning you in the end. I should have gone. I should have called. I should have written.
When the stroke hit, I felt like my own life was falling down around my feet. I was barely hanging on to my own sanity so I said a few prayers and cried a few tears as you lay in that hospital bed over a thousand miles away. I took the rest of the day off of work to feel sorry for myself and to soothe my sense of loss but I didn’t go. I didn’t call. I didn’t write.
Time went on and you went home. Gramma did her best to take care of you with some help from Dad and your other kids and my cousins. I cried when I talked to Mom about the difficulties you were facing. You had to learn how to let other people do things for you instead of being independent like you always had been. I felt better with the sense of urgency gone so I didn’t go. I didn’t call. I didn’t write.
It was a Sunday when Mom called. You were in the hospital again and it wasn’t looking good. Your kidneys were failing. They were going to let you die. I cried and I cursed Mom for waiting to tell me as you’d been hospitalized days before. I went to work the next day, numb and angry but still I didn’t go. I didn’t call. I didn’t write.
You slipped away on a Thursday, two weeks before my birthday. I got the voicemail from Mom just before I went into a meeting at work. It was all I could to keep the tears from my face as my boss yammered about something or another. I sobbed all the way home, grief and guilt overlapping in my tears. I didn’t go. I didn’t call. I didn’t write.
I don’t know if I kept myself from your funeral because of the expense (which is what I told everyone), out of selfishness (I’ve never been good at dealing with death) or to punish myself. By staying away, my guilt is complete. I didn’t go. I didn’t call. I didn’t write.
My Grampa, I have eulogized you in my heart: You were a mean, ornery old bastard that said what you shouldn’t and stepped on plenty of toes, but we never doubted that you loved us. You taught me my first swear words and gave me my first gun. You were the hardest working and most independent man I’ve ever known and I will miss you for the rest of my life.
I’ve never believed in communication with the dead, so my pleas for forgiveness must fall on deaf ears or be lost in the air. Still, I wish I could tell you that I am sorry that I didn’t go and didn’t call and didn’t write.
The first miscarriage was the one that destroyed me.
I lost four more babies; suffered a failed adoption; and barely saw my first born before she was yanked from between my legs – limp and drenched in a dark, life-sucking coat of meconium – then rushed to specialists trained to cheat death.
But that first loss, when my body cramped and convulsed and spit out a baby we so desperately wanted, is what shattered my heart. It robbed me of hope and started a years-long spiral into grief, despair and, ultimately, nothingness.
Exhausted by the anguish and terrified of feeling it again, I turned off as one loss became two. I numbed myself as two bled into three, and the doctors called me infertile. I became a shell and didn’t feel the fourth miscarriage or remember the fifth. I disassociated from my body when the doctors told me they intubated our first born and knocked her out after she had an eight-minute seizure. That person, sitting speechless and alone in the hospital room after they rushed our baby to a first-rate NICU at a different hospital in another city? That wasn’t me.
But it was.
I was 30 and married just a few months when I first got pregnant. I didn’t know much about babies, didn’t have friends who had them – or lost them. And I certainly never heard the statistic that as many as 1 in 4 pregnancies end in miscarriage.
We pored over baby name books at the bookstore and delighted my parents with the news. We heard the baby’s heartbeat and marked the due date on the calendar.
Then we saw blood. Just a spot. “It’s common in early pregnancy,” the nurse told us over the phone. “Try not to worry.” So, we didn’t. We believed her. We didn’t know enough not to. Idiots.
Then I bled more and they asked us, ever so calmly, to come in to the office. “Let’s just take a look.”
I sat in the passenger’s seat while Kent drove down the interstate and I tried not to think this was anything more than typical bleeding. Truthfully, though, I feared otherwise. Kent excitedly pulled an ultrasound photo from his suit pocket as we readied for the doctor; he couldn’t wait to compare the growth from the last appointment to now.
Ten years later, I can still see the inside of the car and the exit from the highway as it was that day that changed everything. I see the inside of the doctor’s office and Kent fiddling with the black and white photo.
“Put it away,” I snapped nervously. Sure he was jinxing the luck we needed.
And then, quick and impersonal as a business transaction at the bank, the doctor inserted the ultrasound wand, marked the top and bottom of the little bean with an X and explained that he didn’t see a heartbeat.
“Put your clothes back on and when I come back in we’ll talk,” he said.
We left the office in silence, a short, poorly-written book about miscarriage in our hands and an appointment for a D&C on the books. The tears started in the car and rushed with scary abandon once I crumbled on to the couch at home. I hid my face and howled into a pillow. Angry, terrified, lost.
Kent made phone calls to my family, talked to my boss. He tried to explain what we didn’t understand. How it happened. Why? When.
I agonized over the “when,” made myself sick flipping through the calendar as I tried to imagine what I did the day our baby died. Because, of course, I killed the baby. We went camping a few weekends before: did scrambling over rocks and hiking to exhaustion kill the baby? I spent too many hours at the newsroom: did I drown the baby with the stress of deadlines, interviews, and vapid politicians?
The baby fell out of me in horrifying pools of blood and fluid and mangled clots the night before the doctors planned a sterile procedure on a cold operating table. I was alone in the house, doubled over with cramps when the first gush sent me running to the toilet. Over the course of the night, Kent phoned the doctor several times to ask about the shocking volume of blood spilled in the tub, the toilet, the bed, on the floor.
We left the doctor’s office the next morning in silence. We stopped for bagels – because I was famished after losing so much blood – and ate without a word: chewed food, swallowed milk, stared past each other. Like robots, if robots could eat.
Kent went to work while I called in sick the next few days, stayed home and wept with little reprieve. I listened to angry, pulsing music at deafening volume to drown the mournful wails of my heart. And I wrote a letter to the baby I held in my belly but never felt in my arms.
“Today we were supposed to see you once again, all flickers and squirms and holy, miraculous life,” I wrote. “Instead, we shall say goodbye. We came to church to do it. We had hoped the baptismal waters would rush one Sunday morning in June as the priest held you aloft and the congregation craned to see your pink body and dark hair. God would welcome you then, we thought. We didn’t know He’d want to take you now…
“Now, we entrust you to Him. Though we wanted so desperately to hold you and touch you. Love you. Watch you. Clothe and bathe and feed you. Nibble your feet and tickle your ears. We couldn’t. But we did love you. And we will miss you. You can be sure.”
I signed the letter, then Kent did too and we traveled to church to leave a pink tulip at the base of the baptismal font, a symbolic gesture to signal the start of our healing.
Ten years later, I pulled the letter from the envelope and found a leaf from a Japanese maple and a helicopter seed tucked in with it. Signs of life lost, just like our baby.
I’m on an airplane, heading home from my recent vacation with my wife and most of her side of the family and writing this entry on the notepad on my iPhone. That is the dedication I have for BAND BACK TOGETHER!
How did this entry come to happen? Well, I blame Aunt Becky. Why didn’t I have a link for Aunt Becky?! Umm, if you are reading this chances are that you know her. If not, well…I got nothing. I follow that crazy (crazy AWESOME) lady on Twitter and love reading her blogs. Mostly cause she says fuck a lot and you don’t hear women talk that way. Come to think of it, she might be a dude. Eh, I would still follow her…or him.
She tweeted how she wanted to make a shirt that said “CANCER IS BULLSHIT” and I told her I would help with the design. This led to a stream of DM’s of why I wanted to help and what it meant to me. So I thought, what else is there to do on an airplane ride? Well, besides watching “Breaking Bad” that is. Here it goes. This entry is going to be a bit different from how I normally write so please don’t judge! This is serious, we’re talking about my nuts here!
I was a month away from turning 31 and 2 weeks away from my first anniversary with my wife. It was Halloween and we were at a party at our friend Nick and Lauren’s house. I had probably 4 beers and we were home in bed by midnight. Everything was fine. That was Halloween.
November 1st was a different story.
I woke feeling like crap. Well, I actually felt like I had to take a big crap. Gross, but that’s the closest thing I can equate it too. As the day went on, I started to feel worse. I decided to take a shower because for some reason that always helps me feel better. I like to sit down in the shower, that’s just how I roll. Well, when I did that I felt a sharp pain…in my nuts. Actually it was just my left nut if we want to get technical about this. I decided to give myself a self-examination. Right nut, smooth and pliable just the way it should be. It seemed to be normal size, from what I remembered. Okay, left nut…fuck. The thing was 4 times the size of the other and hurt like hell to even squeeze ever so slightly. I called my wife to look at them. She saw them and how there was a noticeable size difference and we were off to the hospital.
After waiting for 2 hours in terrible pain due to all the assholes that ran to the ER, convinced they had H1N1, I finally got see the doctor. He poked, prodded and jostled my testes. Then, he ordered an ultrasound.
You know what’s awkward? Having your nuts scanned by a female nurse while your wife is in the room. Yup, not cool. When I returned to my room in the ER, I was met by my doctor who had already scheduled me an 8 AM appointment with another doctor who would be talking about the surgery and my cancer.
Wait…WHAT THE FUCK!?
Yeah, it was laid that smoothly on me. My wife and I walked to the car (it was 10 o’clock by now) and I made a phone call to my mom. I told her I was okay, but that I there was something that I needed to talk to her about but I needed to go home and sleep and that I would talk to her when I knew more. She cried a bit, but respected my space.
Next day, we met with my Urologist. He had red hair and was kinda weird. That’s all that I can tell you about him. He is just kinda weird. Whatever, he showed me my scans and told me my options. I knew surgery was necessary so we were all for that.
They would be removing my left nut the next morning at 8AM. My tumor was directly in the middle which was good because the doctor feels like that stopped any spreading of any kind. He was very sure of this.
However, I was still going to go through Chemo or Radiation therapy.
I had my nut removed and then had two weeks off. It was nice to have the time off but at the recovery sucked. They had to give me a hernia, take the nut out and then seal me back up. I couldn’t lift, sit up or get out of bed for about two weeks without being in pain or uncomfortable.
I was lucky that I didn’t have to go through massive sessions of chemotherapy. I chose chemo because one doctor said for the type of cancer I had and where it was that it was the best treatment and he stood by that. Also, I chose it because I thought the radiation oncologist was kind of a douche.
Chemo wasn’t so bad. Yeah, I did have to sit in a chair and people gave me the look of death when I walked in for treatment. Old people seem to think that no one young should have cancer and when they saw me they thought the worst, so they would give me this look. I hated that part of being in the clinic.
I finished my treatments and now I do blood tests every three months and scans and blood every 6 months for 3 years.
What I hate most about the scans is that every time I have one done, for about a week I am on pins and needles waiting to hear the news. That time is the worst.
It happened during this economic struggle that everyone is going through. We were hit hard and our savings was completely destroyed. We are a young couple that is trying to save for a house and get started, but life decided that we would have to grow up really quickly. You can always earn more money, right?
We want to have kids and now it seems my number of fellas down there has been cut in half. We were taken from being this happy couple that is young and didn’t have a care in the world, to a couple that is now having to think about freezing sperm just in case! My wife was my rock during this whole thing. She was there by my side and never left it. I even had a medal made for her that says “Best Wife Ever” so that title is now officially taken and no one else can have it. My wife has that shit LOCKED DOWN!
Cancer is BULLSHIT! I definitely agree with that.
However, I have learned a few things since it happened. I now know that I am not invincible and that things can happen. I knew that when I broke an arm or something but that’s different. When you are told you have something life-threatening, it really makes you stop and look at life. I may be a “single jingle” (I want a shirt that says that) down there now but I am still alive and that’s what matters.
There are times that I lose it and cry. Shit, it happens to us all. I could be fine one day and think about it and how if I hadn’t caught it I could have died and how I would leave my wife all alone and it makes me sad. But, I am still here. I am alive and kicking and not going to let my cancer run my life.
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.
