Friday, May 18, 2018

We know how this story ends

Yesterday we met with our genetic counselor to talk about our boy. I asked a lot of questions—really good ones, I thought—about what to expect moving forward, what we could anticipate, and if and how we want to intervene.

It was a hard conversation. 

For starters, we have a 37 percent chance of carrying to term. The GC said that was actually pretty high, but those aren’t good odds. That’s a solid F. It’s not even a D- if you grade on a curve. It’s the grade you hope your professor will drop. But, our GC said we’ve already made it further than most so that made me hopeful. Mike and I just want to meet him. If we have to lose him, we want to meet him and tell him we love him. That is the most we are hoping for. 

Just typing that makes me cry. 

If he makes it to term, he still has to make it through labor and delivery. Trisomy 18 babies really struggle during labor and delivery. It’s hard on all mamas and babies, but it’s especially hard on these special babies. The stillborn rates are incredibly high. In a normal situation, doctors would perform a crash c-section when they know the baby is struggling. For trisomy 18 babies, they hesitate because of the risk to the mama. For that reason, many couples choose not to monitor the baby during labor since the outcome will still be the same. If you think I’m callous for speaking so plainly, please know that I am dying inside as I write this. I cannot pretend that the outcome will be different. I cannot believe I have to make this decision. God, help.

 If he survives delivery, we won’t know if he’ll be able to breathe without a ventilator or even swallow, as many trisomy 18 babies struggle with both. If he can’t swallow, we have to decide whether or not to intubate him and feed him intravenously. “Some families choose not to and opt to provide comfort care for their babies.” When I asked what that meant, our GC gently explained that the nurses will make sure the baby is sedated so he’s comfortable as he lives out the rest of his natural life, however long that may be. 

Up till this point, I’d tried really hard not to cry because I wanted to get through all of my questions. I was proud of myself because this was a feat in itself. I am a weeper, a feeler of all the feels. I cry all the time. This admission—knowing we might have to make this decision—broke me. How does anyone make these decisions?  

This wasn’t even the worst news. 

Our boy’s heart is really broken. Even before we knew he had trisomy 18, we knew he’d have to have surgery within days of being born, and then several times before the age of two. Most cardiologists won’t operate on a baby with trisomy 18 because most won’t survive the surgery; it’s hard enough on a healthy newborn, let alone on one whose heart is as broken as our boy’s. I’ve had heart surgery to repair one of the problems he has. It was no joke. If he survives labor and delivery, I wouldn’t want to be apart for him for a second knowing it could be his last. I wouldn’t want him to be in pain. More impossible decisions. 

The perinatologist confirmed what I’d feared: If my boy survives to term, survives labor and delivery, and we help him breathe and eat by intubation and IVs, his heart will fail him. 

It is a strange and terrible thing to know how your child will die. 

All the challenges I thought I’d face—breastfeeding, adjusting to lack of sleep, having a baby in the NICU after major open-heart surgery—pale in comparison to what lies ahead. I’d hoped to at least bring him home, but I don’t think I can bring myself to do it. I don’t want to watch him struggle as his heart fails and know there’s nothing I can do to help relieve his pain. The alternative is to spend our time with him in perinatal hospice where the staff will ensure he's comfortable, and that we have a safe space to be with him and have others meet him. I thought I'd be decorating a new nursery. Instead I've already started thinking about how I want to make our room feel as much like home as possible. 

Do you want to know what really wrecked me? When our GC asked if we’d named our boy. I sobbed so hard. This isn't how I imagined sharing his name. We were going to wait until after he was born, but now I'm not sure when that will happen or what that will be like so it doesn't make sense to waste any time. I want you to know his name while he's still here. 

His name is Arlo Matthew.

Since I assume you'll ask--because she asked--I'll share what I told her.

I love the name Arlo. Even before he was born, I used to imagine people asking me my kids’ names, and I’d whisper, “I have two boys—Holden and Arlo.” It always made me smile. I chose the name “Matthew” to honor my friend’s brother, who is facing his own end with more courage, dignity, and attitude than I’ve ever had in my entire life. Watching my friend love and support her brother—hearing about how he’s facing the end of his story—has been heartbreaking and inspiring. If I can do for Arlo a fraction of what my friend is doing for her brother—if I can live with the same courage and zeal he’s exhibiting—I’ll feel like I’ve done a good job. 

Our GC reached over, squeezed my knee and said, “That's a wonderful name." And then she got teary-eyed and added, "You are choosing the harder path. Your son is so lucky to have you guys as parents. It’s obvious how much you love him. He is a lucky boy.” I ugly-cried in front of her while Arlo moved in my belly, unaware of my sorrow.

We saw his face. That was the only redeeming part of the appointment. The perinatologist mentioned some other finding about his brain, but she wouldn’t go into detail. I think she figured it wouldn’t change anything, that we’d had enough bad news. She said he looks small, that he’s a few weeks behind in terms of growth, but that’s normal for trisomy 18 babies. Arlo seemed nonplussed. He was active and uncooperative during the scan, which made us laugh. Our tech spent a lot of time trying to get us decent pictures. We didn’t say what we all knew: these could be the only pictures we ever have of him. I normally think ultrasound pictures are only special to the parents. (I mean, honestly—what are we looking at?! Even I get it wrong half the time.) But, I’m sharing these with you because I don’t know if we'll have more. 

This is my son, Arlo. I'm so happy he's still here, and that he's ours.






Tuesday, May 15, 2018

Some good news, some bad news, and why I need prayer

I’ve been pretty quiet online for a while because life has been wild this year. Aside from Mike traveling a lot for work, which is cool for him and sad for me, we were surprised to find out we were pregnant with a free baby. As in, no shots required. Can you believe it? My doctor said it was highly unlikely that it would ever happen for me without IVF so I'd given up. I was convinced I’d have to shoot up again this year to try to get pregnant, and I was dreading it. I hate the IVF/FET process so much. I was not one of those strong, super-positive mamas who focused on the end goal. I cried fresh tears daily over the shots and infusions. I hated them. I just wanted to get pregnant without getting stabbed. 😐 

The good news


And then it happened. I took a pregnancy test and sobbed over those two pink lines. I'd never seen them before in real life, but there they were--two dark pink lines that showed up immediately on that pee-soaked paper strip. I took 12 more tests just to be certain--not on the same day because that's wasteful--and saved all of them. (Mike pointed out that I just needed to save one, but I told him to let me live.) We couldn't believe our luck even after all of the positive pregnancy tests and confirmation from the doctor. It was just too good to be true. 

At first I didn’t say anything because I felt guilty about getting a free baby when I know so many women who are still slogging through infertility and braving daily fertility treatments. I'd become the success story that everyone likes to mention when you finally get pregnant after successfully adopting your child or getting pregnant through IVF, and I felt really bad about it. People mean well, but those stories aren't helpful--at least they weren't to me. Why? It's hard to hope when you've been disappointed so many times. 


An early look (around 12 weeks) at our claymation baby--a weird and wondrous sight to behold.

The bad news


Just when I thought I was ready to share our great news, I started getting abnormal test results. After several blood tests, ultrasounds, and an amniocentesis, we learned that our baby was special, but not in the way I wanted. He has trisomy 18. If you don’t know what it is, it’s a chromosome disorder marked by life-threatening birth defects with a high mortality rate. Only 10 percent of babies with trisomy 18 live to a year. We were shocked. Angry. Devastated. Heartbroken. Resigned. I mean, it really was too good to be true. We couldn't just have a miracle. When the first abnormal test results came back, I said, "God, please don't make me do this. Don't make me survive this so I can help someone else do it. I've already done it. Give me something else. Please." I have whimpered and moaned this prayer a few more times, but all I've heard are my own choked sobs. 

I have cried myself to sleep every night since we got the news last Wednesday. Our sweet boy is due in September, which feels like an eternity from now, and I am no longer looking forward to meeting him because I can’t bear the thought of saying goodbye. And yet, I do want to meet him. I am hoping he lives long enough for us to meet him. I want to see his face and tell him we love him—tell him he is the miracle we never thought we’d get—and then tell him goodbye for now. I want to tell him how sorry I am that he can't stay. Really though--I'm sorry for myself, not him. He gets to go be with Jesus with his brother and sister, and I have to live without him.

Where we are now


We are entering into uncharted territory, and I’d be lying if I said I wasn’t afraid. After years of infertility and two losses, I feel like I’m acquainted with sorrow, but what lies ahead feels utterly foreign and terrifying. I know God is with me--that He will help me survive this just as He helped me survive infertility and loss--but I desperately wish I didn’t have to walk this road. I don’t want to do it. 

I don’t want to know what it’s like to plan a funeral instead of a birthday party. 
I don’t want to know what it’s like to give birth to an angel or watch my child become one. 
I don’t want to have to say goodbye when I’ve hardly had a chance to get to know him. 

This little guy keeps moving around in my belly as if to remind me he’s still here, still fighting, and that has helped a little. He doesn’t know his heart is broken--that his body isn’t knit together the way it’s supposed to--so I talk to him as though everything's alright. I've told him about his big brother, and I tell how much we love him, that we hope to meet him. Does he know I often cry when I’m talking to him? I hope not. But maybe he does. 

A request


I’m sharing this for a few reasons. The biggest reason is because I need prayer. I have stopped praying for a miracle because it breaks my heart too much to hope. But, I know that prayer is powerful. A few of our friends and family members are praying for a miracle, and I’m grateful they are praying for one on our behalf. I am praying for strength to get through each day. I’m praying that my boy doesn’t suffer--that I will get to meet him--and that his inevitable passing will be peaceful and painless. I’m also praying for peace and wisdom as we try and make the best decisions for our boy. God knows I don’t know what I’m doing. 

I'm also sharing because I want you to know about my boy. I have a boy growing inside of me—a broken-hearted miracle child—and he is deeply cherished and loved. I want you to know he’s alive so you won’t be surprised when I tell you he’s gone. I wish I could tell you more about him, but this is all I know for now. If you’ve made it this far, thanks for reading. If you’re going to pray, thanks for praying. If you see me and don't know what to say, say that--just say you're sorry, and that you don't know what to say. That's enough, and it helps more than you know. 

Thursday, August 21, 2014

Manatee

Some day I will write about what really happened after we met with our fertility doctor. 

But not today.

Today, I will skip over everything else because I want to tell you about the day I met my tiny boy.

The first time I saw him, he was just a clump of cells, a small blob. I didn’t think about what it had cost to get to that point. I thought I could never love anyone or anything more than that little blob.

Getting pregnant the old fashioned way is a miracle. Getting pregnant through IVF feels equal parts science experiment and magic. I don’t know how else to explain it. You give yourself shots and take the pills and obediently show up for all your tests hoping it will work. And even though your doctor and countless people before you have done it, it’s still hard to trust the process. Can you really grow me a baby? Can you really make me pregnant? It’s all out of your control, and it’s so, so frustrating. Not to mention that giving yourself shots is the pits. It’s better when someone else gives you shots, but if it were up to me, I’d vote for NO SHOTS. Tell me I have to take 37 pills everyday, but don’t make me get shots every day, several times a day. I hate shots

But when I saw him, I realized that everything we had done—everything I had endured—was to get us to that point: I did it all so I could meet my tiny boy.

I thought my heart would explode.

After all this time, he was finally here, and he was mine.


Most of IVF is focused on preparing your body for pregnancy. I thought the shots and pills and blood tests would never end. Getting pregnant is actually anti-climactic: one minute I wasn’t pregnant, and a few minutes later, I was. Our doctor pointed to a tiny white speck on the dark screen said, “There he is. Take good care of him.”

Sorry it's hard to see. I felt the same way.
After implantation, you enter into a period known as the two-week wait. If implantation is successful, your tiny baby should burrow within 24-48 hours, but you don’t get results for two weeks. My body seemed to change overnight. 

It was terrible.

I experienced what my doctor and nurse called “terrible cramping” for almost a week and a half. I’ve had cramps before. I wouldn’t describe what I felt as “terrible cramping”. Remember that infamous diner scene from Alien when the baby alien explodes out of that guy’s stomach? 

It felt like that.

When I called my nurse about it, she said it was normal—that my uterus was stretching, which was a good sign. “Your body doesn’t know you’re pregnant. Usually the hormones would prep your body for the baby so you wouldn’t feel this much pain, but you’re tiny so you’re going to feel everything.”

I should’ve been happy that she said I was tiny, but I didn’t care. I just wanted it to stop. Did I mention I was bloated? Like severely bloated. Like I looked over four months pregnant. Like my body decided to speed up my pregnancy to give me a belly even though I was only  a few days pregnant.

I couldn’t stand up straight, and I thought my skin couldn’t possibly stretch to cover my swollen belly. All of a sudden none of my clothes fit, and I could no longer sleep comfortably in any position. And I had a UTI.  

But none of that mattered when we found out we were pregnant. It worked. At our first ultrasound, our doctor pointed to a blob on the screen and said that was our boy. I couldn’t see anything though. I thought, my phone takes better pictures than that! Then he flipped a switch, and all of a sudden, we heard the steady thump of his tiny heart beating sure and strong. He said our baby looked like a sea creature with flippers, like a manatee. 


Seriously, what am I looking at?

Judging by what he saw and heard, he said we had a 95 percent chance of carrying to term. That’s a solid A. 

You may think it’s silly to start dreaming of your baby when he’s that small, but when you’ve struggled with infertility for years, it doesn’t feel too soon. At first I was wary about celebrating, like it was too good to be true, but our people helped us celebrate. They loved us, fed us and helped us through the entire process. My nurse-friend, Jen, came over every three days to give me my dreaded shot in the butt. If the other shots were thumbtacks, the butt shot was a sword. We couldn’t do it ourselves so she made my butt shots part of her life. So when we got the news, our people celebrated. It wasn’t just happening to me—we were having a baby.

Though it was premature, we decided to celebrate with a gender reveal for our families. They were going to be in town for Father’s Day so we thought it was a good time since everyone would be together. I will never forget that day.

We went in for our second ultrasound the day after Father’s Day. Our ultrasound tech asked questions while she took measurements. We saw our manatee on the screen, but there was no flickering light—no movement—and when she turned on the sound, we didn’t hear anything. 

“I’m sorry, but I can’t detect a heartbeat.”

I was stunned. She kept looking and taking measurements, but nothing changed. Our baby was there, but he wasn’t. 

I kept thinking, This isn’t happening to me. This is a routine check-up. Everything is supposed to be fine. But it wasn’t. And then Mike squeezed my arm and said, “I’m so sorry,” and I realized it was happening, but it wasn’t happening to me: it was happening to us

The rest of the details from that day are hazy. My nurse said I had two options: have a miscarriage at home or have surgery—a D&C. If I had a D&C, the doctor would order tests on the baby and on me to find out what happened. She told me I could take some time to think about it, but if I chose the surgery they wanted to do it sooner rather than later.

I navigated through periods of calm and hysteria all day and night. It was exhausting. I have never cried so much in my life. I felt like I was experiencing the world all wrong, like I was turned inside out and was trying to claw my way out of my body. I thought if I could just break through my skin, I’d realize it was all a bad dream, and everything would be okay. I wondered how the sun was still shining--how the world kept spinning--when we were suspended in time by grief. 

Since I was no longer pregnant, we had the two things I missed the most—sushi and wine—for dinner. I hoped it would make me feel a little better but the flavors were off. Everything tasted of tears and loss. Instead of feeling full, I felt terribly empty.

Saying Goodbye

The next day, we ran away. We ate the last of the gender-reveal cupcakes for breakfast, put Crosby in the car and drove away. We hid in a different city where we could pretend we were on vacation, sat on the beach and talked about the boy we would never meet. 

Did he know how much we loved him? 
Did he know how much we wanted to meet him? 
Did he know how terribly sorry we were that we’d never get to know him?
Did he know that we did everything we could to keep him with us? 
Did he know that we were dying a million deaths over him? 
Did he know much we already missed him?

We did what we do best: we hung out. We drank wine and read books and played Scrabble. We talked and laughed and cried. We weren’t worried about work or finances or when we would try again. We were just Mike and Bean. That night, as we sat beneath a thick blanket of stars, we cried and said we loved him—our tiny speck, our little manatee—and we said we would never forget him. That night, we said goodbye for now.

We had the ultrasound on Monday, and I had surgery on Friday. 

It was a terrible week. 

I knew that after the surgery, he would be gone from my body, and it would be like he never existed. He was so young that some might say he was barely a person. But he was—he was real to me, and he was mine, and nothing will change that. 

Moving On

It should be easy to revert back to life before Manatee, but it’s not. Sometimes when I wake up, I forget, and I am so happy. But then I wake up—really wake up—and remember that he’s gone. 

It hurts. I miss him.

My doctor ran tests on me to see if I have Lupus or natural killer cells. (Don’t ask me what those are. I barely know myself.) Tests on our little guy came back normal, and the tests didn’t show that there’s anything else wrong with me.

We will probably never know why we had a miscarriage.

But we know it’s extremely common: one in four women have a miscarriage. I am one of those women. Most people don’t talk about infertility because it’s complex and agonizing and personal. It can also be incredibly lonely. 

I don't think it should be.

think it should be okay to talk about infertility and loss and the things that break our hearts over and over again. We tend to keep these terrible secrets hidden inside our bodies, like they're not relevant or worthwhile parts of our stories. But they are. They matter.

If you’re going through something similar, know that you’re not alone. If I could say anything to you, I’d say this:

You are not a failure. 
It’s not your fault. 
I am so, so sorry. 

If you know someone going through this, please say something. Anything. Don’t let them feel like they’re alone or that there’s something wrong with them. Don’t hold back because you don’t know what to say. Say you’re sorry they’re going through this because it is terrible and shitty. Acknowledge their loss. Respect their grief. Love them. It doesn't fix anything, but it helps.

Monday, October 14, 2013

An Anniversary to Remember

I.

“Let us look forward to the coming anniversaries, with their age and their gray hairs without fear and without depression, trusting and believing that the love we bear each other will be sufficient to make them blessed.”

Samuel Langhorn Clemens to his wife, Olivia “Livy” Langdon

II.

September was full of wedding-related festivities and milestone birthday celebrations

And this:

Lower Twin Lakes - Mammoth Lakes, California



Hiking to the "open pit", which we've affectionately nicknamed "The Bear Cave", above Lower Twin Lakes. 
And before we knew it, it was our anniversary.


How has it already been five years since this?

9/27/2008 - Best day of my life.


We’d wanted to get out of town for the weekend, but after spending the last two weekends in the mountains, we were tired and broke.

So we stayed local and hung out.

It was lovely.

Brunch at Bottega Louie.
Sustenance for our walk around L.A.
Dinner at Black Hogg. I'm pretty sure everything was laced with cocaine. How else can I explain why I'm still fiending for it several weeks later?
That weekend, we didn't worry about whether or not we would ever have children or how we would pay for IVF or if the treatments would actually work for us.

That weekend, we didn't talk about building our family through adoption or when we should begin the process or how everything we ate didn't fit within our new diet.

That weekend, we talked and laughed and explored the city, which is pretty much what we've been doing every day since I dropped him off after class eight years ago.

That weekend, I thought about the beginning, when we had nothing but each other and our dreams.

(So really, we had everything we needed.)

When I think about the beginning, I think about what he said to me all those years ago:

“I know I’m short, I don’t have big muscles, and I have a chip in my front tooth. I know there are way better-looking guys you could be with. I don’t have any money, and I probably won’t have a lot of money down the road. So basically, I don’t have anything to give you, but I do know one thing: I will be the best at loving you.”

I know that Mike is really good at loving me when life is good and everything's going smoothly. But last year he proved he was even better at loving me when life was hard, and everything was falling apart.

There were too many days when he'd come home from work and the house would be a mess, and dinner was nowhere near started, and it was obvious I wasn't going to cook or eat anything. So he would cook - after working a long, hard day and commuting two hours in ungodly traffic - and would get me to eat, and would try his best to spend time with the sick person who'd replaced his wife. 

He was patient and loyal and kind. He stuck with me even after I'd given up on myself.

So that weekend, when I thought about the beginning, I also thought about last year and everything in between. 


Calaveras Big Trees State Park, 2005.

I don't want to relive it again, but I'm glad last year happened. Last year gave us the opportunity to test our mettle. Last year threatened to unravel us, but instead, knit us closer together. Last year made this anniversary feel especially sweet. We did it - we survived last year. We made it to five.

Hallelujah. 

III.

Mike and I had thought we'd be parents by the time we celebrated our five-year anniversary. I don't know why. We just assumed we'd be celebrating this anniversary with little people who looked like us.

We just celebrated five years of marriage, and it's still just us (and Crosby). 


It feels a lot like the beginning, though we are older and have grown-up jobs and more lines on our faces. We no longer have nothing, but we still have our dreams.

I’m not sure what will happen next. I have no answers, and to be honest, sometimes I still get scared. Sometimes I still plead with God to make my version of a happy life come true, the version that includes having babies with Mike right now. And then there are moments of clarity when I realize that my version of a happy life has come true: 

I get to hang out with Mike Fox every day. I am seriously the luckiest girl.

At the top of the waterfall overlooking Lower Twin Lakes.

Happy anniversary, my Mike. Being your girl is the greatest adventure of my life. I love growing old with you.

Friday, September 6, 2013

The Bad News

“It’s easy to believe that having a child is as simple as growing tomatoes: you do the right couple things, you take your prenatals and avoid caffeine and nitrates, and the universe hands you a perfect life, right on schedule. But if you've ever tried to grow anything – a tomato plant, a baby, anything – you know it’s more mysterious and more treacherous than that. It turns out that conceiving and carrying a healthy baby is just exactly like a lot of other parts of life: way more out of our control than we prefer to believe. There’s a mystery we tend not to acknowledge until certainty has been ripped out of our clutching hands. And only when certainty is gone do we allow ourselves to bend and open to that terrifying mystery, dark and incomprehensible.”

Excerpt from “Heartbeat” from Bittersweet, by Shauna Niequist

I.

When Mike and I first started trying to have a baby, we were blissfully, hopelessly, prematurely excited. We talked about our future-babies, researched the best strollers, planned our nursery and picked baby names. I stopped drinking caffeine, began taking prenatal vitamins and bought the entire suite of “What to Expect” books.

I was delirious with baby fever.

I was so sure I would be able to get pregnant without much difficulty – never mind that I had had open-heart surgery to repair a congenital heart defect; never mind that I had Graves Disease (a.k.a. hyperthyroidism). Those were minor details.

Even still, doctors ran tests on my “problem areas” to make sure everything was in working order. I passed. They shook my hand and said, “Go forth and procreate!”

(Actually they said, “Have lots of intercourse!”, but I can’t type that without laughing.)

We entered into a cycle of trying and failing, high on the idea that parenthood was tantalizingly close. I spent a small fortune on name-brand pregnancy tests. I justified the splurge, reassuring myself that I wouldn't have to use that many. I was going to get pregnant very soon.

But after several months of trying and boxes of wasted pregnancy tests, I quietly stockpiled generic pregnancy tests, purchasing them en masse when they were on sale. I did not acknowledge the fact that I might need them all. I told myself I was being frugal.

After my sister-in-law announced her pregnancy, the seeds of doubt I’d tried to ignore sprouted into hearty, aggressive weeds.

I knew there was something wrong with me.

II.

If you’re trying to conceive your first child and are relatively healthy, most doctors discourage you from seeking consultation until you've tried for a year. When I told my doctor’s staff about my wildly irregular periods, they scheduled an appointment for me to see him.

I’d only been trying for six months.

During my first appointment, I answered my doctor’s questions as honestly as possible: my periods were sporadic; my diet was indulgent; I exercised by walking Crosby; my stress levels were under control - now. didn't know if my season of binge eating and weeping was relevant, but I mentioned it casually, like I was trying to convince us both that it was no big deal.

My doctor frowned. “That’s a pretty significant event. It was probably very stressful.”

I shook my head, the beginning of a rebuttal on my lips, when he interrupted me.

“My wife and I went through the same thing. Her sister got pregnant several times while we were trying. It was very difficult for us even though we were happy for her. We tried with IVF for four years before we had our daughter.”

Well then. Never mind.

He ordered tests and said he would see me soon.

I was cautiously optimistic during my follow-up appointment. I was going to get some answers, and I wouldn't have to wear a paper gown or put my feet in stirrups to get them. Hallelujah - God's goodness abounds. 

But the answers weren't what I expected.

“You have PCOS - polycystic ovarian syndrome.”

I stared at him hoping I’d misheard.

“It encompasses a wide range of symptoms and side effects, one of which is infertility. Essentially your hormones are imbalanced so you’re not ovulating. Let’s get you on drugs to help you do that.”

He was rather nonchalant about it, like he was a close friend telling me I had broccoli in my teeth. I willed myself not to cry. I remember him saying, “It’s very common” and “Don’t worry – we’ll get you pregnant.” He prescribed Metformin and ordered monthly blood tests.

didn't cry till I got home.

I thought this was bad news, but that’s because I had no idea that more was still coming.

Later, after months of failed attempts, I would cry again after my doctor, puzzled over my abnormal blood work, told me to stop trying to conceive until I saw a hematologist and geneticist.

I would cry again after the hematologist confirmed that I have hemoglobin e, a common mutation that leads to thalassemia and sickle cell disease, among other blood conditions.

I would cry after he told me that there was a chance - if Mike had any blood abnormalities – our children could be born with serious blood disorders ranging from mild to life-threatening. He implied that death was a possibility, and that we should seek genetic counseling to “consider our options”.

I would cry after my doctor told me, after months of taking the maximum allowable dose of fertility drugs, that I would have to see an infertility specialist.

Had I known that I was going to have more reasons to cry, I would've held off till I received the very last of it. I would've stored it up and had one epic cry. And then, after there wasn't a drop of moisture left in my body, I would've poured myself a glass of wine and eaten a pie. Because what else can you do?

III.

The diagnosis itself wasn't bad. Several people attempted to reassure me by saying things like, “I know people with PCOS, and they have tons of kids” or “At least you know, and knowing is half the battle”. Thanks, G.I. Joe.

What hurt the most were the unspoken implications that came with it.

Having PCOS meant parenthood was not something I could plan or decide, that the life I’d imagined for us might never be realized.

I realize now I was too confident, that I somehow believed God would absolutely give me what I wanted based on years of responsible decision-making and really good behavior. Okay mostly good behavior. I mean, if he would give babies out in droves to the stars of Teen Mom, surely there was one for me?

(Yes, I know I was being totally judgy, and that my view of God as a cosmic judge/vending machine/genie is completely inaccurate. But that's just where I was.)

It would take me a few years to get comfortable with the idea that my life could look different, and that different could be good. But I was far from that place when I received my diagnosis. I was freaking out. I was trying to do everything in my power to hold onto the dream life that involved kids at that moment in time.

After hearing my diagnosis, I did what most people would've done: I Googled it. If I educate myself, I can come up with a plan (said Lina when she still thought she had control over her life).

That was a mistake.

I was bombarded with too much information, and all of it scared me. I saw the same symptoms and side effects on every site: infertility, depression, excessive weight gain, hirsutism.

I shut down.
I stopped researching.
I stopped reading the “What to Expect” books.
I stopped taking pregnancy tests.
I stopped thinking about my future-babies.

I fluctuated in and out of mild and deep depression. I denied it, told myself and everyone who asked that I was fine, that I was just really, really sad.

It was a lie I desperately wanted to believe.

I was not fine. My depression strangled my ovaries. I did not ovulate for two years. I thought I was barren, and nothing anyone said – nothing I ate/bought/drank/read/heard – made me feel any better.

Three months ago, my doctor’s office called to tell me I ovulated. I have since ovulated each month, which is, to me, a modern day miracle.

There’s a chance I could get pregnant. There are so many other factors to consider, and even though my ovaries are finally working, there’s no guarantee I could get pregnant. I’m forcing myself to focus on the good news, to revel in this miracle, this tiny victory. For now. We are celebrating, quietly, awaiting the next step, which is to meet with the infertility specialist. We are nervous and cautiously excited. This will be the first appointment we have to attend together. We don’t know what we’ll learn, but for the first time in years, we are daring to hope.

Maybe someday, this picture will be of Mike holding one of our sweet babies.


Dreaming again.

Thursday, August 22, 2013

I.O.U.

I.

It seems only yesterday I used to believe
There was nothing under my skin but light.
If you cut me I would shine.
But now when I fall upon the sidewalks of life,
I skin my knees. I bleed.

“On Turning Ten” – Billy Collins

II.

When I wrote my last blog post, I thought I was fine, that I had emerged from a bleak, mind-numbing couple of months completely intact. Mostly intact.

I thought my career as an emotional black hole was over.
I thought I was done crying and binge-eating pie.
I thought I’d be able to write about my “journey toward parenthood” (for lack of a better phrase) as I was living through it.

Ahh – the folly of the eternal optimist.

Looking back, I can see now that writing about it all as it happened was a stupid idea, but I was naive and optimistic. I really believed my story would end successfully – I was going to get pregnant, and soon. Any day now.

I was so, so wrong.

I told myself I’d successfully survived the worst good news of my life. I told myself that things could only get better from there.

But then I kept getting more bad news.

It wasn't all related to my ovaries, but it was all bad.

My aunt died unexpectedly.
We had to make the difficult decision to re-home our other dog, Gemma.
I was diagnosed with another endocrine disease. (I'm trying to collect them all.)
I was diagnosed with a blood abnormality.
I was put on medication for several months, and when that didn't work, I began taking fertility drugs. This doesn't sound like bad news, but it was to us: fertility drugs make you feel psychotic. And yet month after month, nothing seemed to be working.

Did I mention that my sister-in-law was pregnant and I still wasn't?  I know that’s actually GREAT news, but at the time, it felt like salt in the wound. (Let’s be real–everything felt like salt in the wound.)

I know I could’ve received way worse news. I know that. But at the time, it felt like the universe was conspiring against me to help me build character. (Yes, the universe - nebulae, black holes and galaxies - all of it. I was that overwhelmed.) I was desperate to stop feeling so many emotions all the time. I couldn't take it anymore. Every cell of my body was saturated with anger and frustration and despair and deep, deep longing. I self-medicated using my favorite vices.

You might think I was looking at all of the bad news from a positive light - that in between the tears, I said to myself, this could be great writing material!

That would be an incorrect assumption.

I wasn't thinking about anything. I didn't care about anything.

Case in point – I volunteered to cook the turkey for Thanksgiving dinner. On Thanksgiving day, I brought a raw, thawed turkey to my mom’s house and barely glanced at the recipe I’d brought with me. I didn't even bother to read the cooking instructions correctly. I was distracted and apathetic. As a result, I cooked the turkey low and slow for way too long. I basically made turkey jerky. It was awful - the absolute worst thing I've ever tried to make. And yet I didn't care one bit.

I felt numb.

I was lost. I felt like a failure: my body could not do what it was designed to do, something 14-year-old girls could do. Like a bad habit, I replayed that thought over and over again. I was surrounded by friends and family, but I’d never felt so alone. Unless I saw you in real life, you probably didn't know the extent of my anguish. I tried to hide it, tried to be okay, but I didn't have the energy. I was completely shattered inside. I was running on fumes.

I think that’s why God sent you to save me. At that point, I wasn't really talking to Him much. At best, I was grunting in His general direction, but I was mostly not-talking. Like deliberately not-talking.

After reading my last blog post, you reached out to tell me you were sorry.
You reached out to tell me I wasn't alone.
You shared painful, intimate details of loss and longing and sorrow.
You said you were praying for me and thinking of me and hoping for the best.
You listened and didn't try to fix or force me to be optimistic. You just let me be sad.
You texted/emailed/messaged/commented the kindest words.

It took another six months - maybe longer - to feel not-shattered, to slowly pick up the pieces and glue myself back together again. Slowly, methodically - one piece at a time. Your thoughts and prayers and kind words and company got me through each day. 

Thank you for your kindness and generosity. You showed up when I needed you most.

III.

There you have it – my long-winded excuse for why I disappeared so abruptly. It’s kind of lame, but it’s all I've got. Next time I fall off the face of the earth, I’ll make sure it’s because I've done something dramatic – like I've quit my job and have been eating my way through Europe with Mike and Crosby.

There’s a part of me that wants to leave Last Year in the past, to just fill you in on what’s going on now.

But I can’t.


Last Year was awful and horrible and hard. It was a mess. I was a mess. I lost sight of myself and the absolute best part of my life – this guy:
  

But I learned a lot about myself, and because of you, about how to be a good friend to someone who’s stumbling through the darkest nights of his or her life. And maybe – just maybe – what I learned will help one person feel not-so-alone. And so, I will write.

More to come.

Thanks again.

Bean