Category Archives: Faces of ALI

Faces of ALI: The Unique Hell of Secondary Infertility

Esperanza

One of the known media narratives, illustrated here (and in the subsequent interview by Terry Gross on NPR) is that, well, men and women getting old causes infertility. There’s a bit of a “blame the victim” mentality here: men and women should forget about societal norms and careers and graduate school and get their family planning on YOUNG.

Esperanza’s story is the real world example of what happens when a well-educated woman in a circle of other well-educated professionals values having a family above all else. And what happens when infertility happens to young people, anyway?

***

A Born Mother

Esperanza’s life has been shaped by two major factors. The first is her love of children. From a young age, Esperanza knew she wanted to be a mother. She loved everything about babies and children, and she was a natural around them. She was the girl who would rather babysit than hang out with friends. All of her after-school jobs were childcare related.

“When I was little I wasn’t all that into Prince Charming. I didn’t really think much about whether I would eventually find the perfect guy. When I fantasized about the future it was children I saw. I assumed I’d have them with someone I loved but I didn’t think much about what that person might be like. I just really didn’t contemplate marriage all that much.”

The second factor is the reproductive history of her mother.

“My little sister died when she was two months old (I was two). She was born very sick and never left the hospital…

After that my mother lost three pregnancies – each at five months. All boys. I’ve visited my sister’s grave often. I don’t know where those babies were laid to rest.”

Esperanza was a girl who wanted more than anything to become a mother, yet she knew how hard this goal might be for her to achieve.

***

The Prom Queen

2010 Teen Choice Awards - Show

Although Esperanza was a high-achieving student, eventually admitted to one of our country’s best universities and was also, literally, a prom queen, she felt different from her other friends and schoolmates who had other dreams. Dreams of exciting careers, romance, love and adventure.

Esperanza’s more down-to-earth dream was having a family of perhaps two or three children. She took a job that would support her goal. She chose to be a teacher because of the flexible hours and vacations. And she looked for a mate, someone who would also want to build a family. Someone kind and gentle and principled who would be a good father. But someone like that was hard to find within her circle of friends in their mid-twenties, who were more interested in partying and traveling and having a good time than settling down. She began to despair. It wasn’t until she was 25 that she met her very first boyfriend, a man she calls Mi.Vida. Mi.Vida was kind, loyal and he loved her. But Esperanza soon found that Mi.Vida was not ready to jump into the parenting waters as quickly as she was. She had to decide: should she wait it out? It had taken her so long to find someone. She decided to let Mi.Vida know her strong interest in having children, so he knew her goal early on. They stuck together and after two long years of conversations (and couples counseling), they decided to start building a family together. They were 28 years old when they went down to City Hall to cement their commitment.

Esperanza was worried when they started to Try To Conceive (TTC) because she had suffered from amenorrhea, which is the lack of regular periods, and this was yet another reason she wanted to start building her family as quickly as she could. To prepare her body, she began a strict regimen of traditional chinese medicine, yoga, whole foods and accupuncture three months before TTC. To Esperanza’s shock and surprise, she got pregnant within six months. But her surprise soon turned to sadness when she discovered her pregnancy was not viable: it was ectopic and life-threatening. She needed emergency medical measures performed. Grief quickly turned into panic as she remembered her mother’s horrible history.

What is an ectopic pregnancy?

It was a blow, to say the least.

It took time to recover from her physical and mental anguish. Making it worse was when she reached out to friends for support, she was rebuffed.

“The struggle to start a family is not something our society shares. We would, and do, share the start of our family with the world when the word struggle is not included; but when that word finds its way into the experience, suddenly we are shut down.”

Gearing up to try again took courage, but anyone who has ever met Esperanza knows she does not lack for that. Four months later, she was pregnant. Nine months after that, she gave birth to her daughter Isa.

She was the youngest mother she knew.

***

Oh, The Places You Won’t Go

September 2007 020

When you have children young within your circle of friends, it’s a more difficult transition. Your peers are out making careers happen, advancing by working crazy hours, networking at parties, building a savings account. Traveling, having adventures. Going to concerts.

Mi.Vida had a difficult time with the transition of being a young parent. Mi.Vida has a passion for indie music, and produces several important and influential music events in their urban area as a volunteer project, in addition to his important work for a non-profit. He didn’t want to give this hobby up: he had after all become a father younger than he would have cared to.

Esperanza thought it was important to give him space. She was settling into being a mother, too. It was a constant struggle to make ends meet. Neither of them were in a place in their careers where they had room to breathe financially. Esperanza longed to eventually become a SAHM. But the area where they live has the second highest cost of living in the country. They considered moving, but all of their immediate family lived in the area and provided help with childcare and invaluable love. It was a tough decision, but they decided to stay.

As Esperanza entered her thirties, she began to talk more about having a second child. The longer she waited, the more panicky she became.

“There is a part of me, the part I believe is driven by my biological imperative, that wants to have a baby right here and right now, come hell or high water. This voice oscillates between a loud shouting and a quiet whisper and is fairly persistant, though frequently drowned out by the day to day.”

But Mi.Vida was resistant. They went to couples counseling to speak about the difference between them. Mi.Vida was fine having one child, Esperanza was not. Slowly they worked towards closing that gap: compromises were made on both sides. Esperanza agreed with Mi.Vida that they would live in the city permanently (something she wasn’t keen on), and Mi.Vida agreed they would begin to try to conceive soon. Eventually, Mi.Vida expressed his own desire to have a second child:

“He mentioned how much he loves being a father, how he appreciates the challenges of parenthood even if they sometimes feel overwhelming; while he misses the lazy carefree existence of life without kids he also values all he accomplishes as a father. He says he loves the connection he has with Isa and looks forward to nurturing a similarly fulfilling relationship with another child. He also says, for all its nuanced complexities, that parenthood has brought us closer together and he wants to build our family knowing that we, as a couple, will grow too.”

They were ready to try again.

***

Hardcore TTC

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Esperanza quickly took control, using temperature charts to figure out when she was ovulating. She honestly described the not-fun methods of lovemaking and timed intercourse and the stress of having to time it all perfectly. The stress that it took on their relationship. And as each month passed, she began to worry. Why wasn’t this happening for them?

When nine failed cycles became ten, and ten became eleven, she realized that they would soon fall into that dreaded statistic: those who have failed to become pregnant after 12 months of trying. Those couples are advised, if they are under 35, to seek fertility testing. So after the 12th cycle, Esperanza made the appointments for the testing: an Hystosalpingogram for her to test whether both of her Fallopian tubes were open, blood tests to check her hormone levels of CD3, FSH and E2, and an appointment for Mi.Vida to check his sperm counts and motility. She felt pretty confused.

“For the first time since I started building my family I have no idea what to expect. For the first time, I don’t have any expectation of getting pregnant. I haven’t counted out when I’d be due if I got pregnant during the next cycle. I haven’t wondered what I’ll do about maternity leave or taking a year off of my job. I haven’t made any possible plans in my head, I haven’t laid out any probable futures in my mind’s eye. In that place where all those dreams used live, there is only emptiness.”

She thought that the results would probably be normal. She suspected she might be faced with a diagnosis of unexplained infertility. After all, she had gotten pregnant twice in one year only a few years before. She thought the RE would give her a recommendation for a non-intrusive IUI cycle. Maybe a prescription of Clomid.

She was wrong. Dead wrong.

***

Disaster

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The first result they got back was Esperanza’s HSG test. Both of her tubes were clear. Then she got back the blood test results. One of the results (the E2) was on the higher range of normal, and her RE advised her to get the AMH test, which is a more reliable predictor of ovarian reserve. (How many eggs a woman has.)

Meanwhile, Mi.Vida’s results came back and they were not normal. Almost all of his counts: numbers and motility, were low. More worryingly, traces of blood were found in his sample. He was advised to see a urologist.

Then came the deadliest blow: on a Friday morning on a cold January day, the RE called Esperanza to tell her the results of her AMH test. The number was shocking: .59. The RE told her she had the ovarian reserve that he would expect to find in a woman who was 42-45.

“He also said that while he can’t predict I’ll start menopause when I’m 40, it could mean that. This isn’t just about my desire to have another child, this has lasting health consequences.

When I google ‘AMH under 1’ I find a lot of stuff. All of it is depressing. Some of it is terrifying. Women who only retrieve one or two eggs during IVF. Young women – in their twenties – being advised to use donor eggs immediately and not even try with their own eggs.”

Esperanza is only 32 years old.

***

What’s Next?

Esperanza and Mi.Vida will be seeing their RE this week. Their RE has recommended moving right on to IVF.

But IVF is beyond their means. Already financially exhausted by the struggle to be young parents, they are tapped out. They have had to explain to friends and family who have urged them to “just adopt” that adoption is twice the cost of IVF, at least.

What is IVF?

***

The Unique Hell of Secondary Infertility

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Secondary infertility is a unique kind of hell. Many who are going through infertility want one child so badly. You worry you will offend them with talk of your desire for a second child. You have a child already. Doesn’t it seem greedy you want more than one?

And yet in America, almost no one has one child. The average family has two children. So everywhere you go, you are surrounded by families with two kids. Announcements on Facebook of second children (or even third or fourth children) are everywhere you look. Grief is everywhere.

Of all the people I have profiled, Esperanza’s story has been both the easiest and the hardest to write. Esperanza is my best friend. I was also diagnosed with premature ovarian failure at age 32. I never thought the same thing would happen to her. It kills me that this is happening to her. She came to help me with my son’s birthday party back in November. While the rest of the parents and I chatted, Esperanza jumped in and played pirates and balloon swords and gave a merry chase while we looked on, exhausted.

My friend Roumi said: “She’s a mom, right? I hope so. She’s a born mother.”

And so she is.

To read more about the remarkable Esperanza’s journey, please go here.

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Who Are The Faces of Adoption, Loss and Infertility?

The Ricki Lake Show, since airing today’s show, has been responsive to the ALI community, and has shown an eagerness to talk more about infertility in the open. I welcome and appreciate this chance for dialogue and hope it will raise awareness! This is being cross-posted over on The Ricki Lake Show blog…check it out!

Today I wanted to talk about my series, Faces of Adoption/Loss/Infertility (ALI), which is an attempt to spotlight a disease that 1 in 7 of Americans suffer from. And yet, it is rarely spoken about. Infertility could be affecting people you know, but they may be afraid to share the details with you, because of fear of being criticized or misunderstood.

Details like this:

— Your neighbor might be like Courtney Cheng. She was thrilled to become pregnant in 2010, after marrying her husband in a fairytale wedding. At the time she said:

“I’m feeling all kinds of emotions. A little scared for how much our life is going to change, excited to go on this journey only given to women, I’m even looking forward to watching my body change. (I say this now still looking exactly the same way I did a month ago!)

By June 2011, she had experienced four miscarriages and had no clear answers from doctors as to why. She was devastated. Her spirit forever changed, she said:

“Even when I’m covering up the sad like today, I still just want to be pregnant. I want to be having the baby that I’m not having any more, who is buried beneath a tree. It’s just not fair.”

Something amazing happened to Courtney this year. You can click here to read about her story.

— Your cousin might be like Sarah, a young woman in her twenties, married and ready to have a family. But after trying for a baby for two years with no results, she was diagnosed with endometriosis, an extremely painful condition that also effects fertility. After two surgeries and thousands of dollars spent on operations to correct the constant pain she was in, she decided to look into adoption.

She was quickly matched with a birth mother. But she soon learned that the expenses for her adoption would exceed $30,000! Frantic to complete the adoption before the baby was born, friends and family held online auctions and she investigated tax codes and selling their home to boost their savings. She and her husband had to figure out a way to raise thousands of dollars in a few months. What happened? Did she adopt the baby? Click here to find out.

— Your friend might be like Leah. Leah was diagnosed with Stage IV endometriosis as a young single woman and was faced with a hard choice: should she pursue fertility treatments now while she was still young, which was her only chance to become a biological mother? How would she handle dating? Would she feel alone and isolated pursuing treatments? You can click here to hear about Leah’s journey, and find out what path she finally chose.

I’m hoping by reading these stories, people can understand more about infertility, which effects 7.3 million Americans. Possibly, your neighbors, your friends, your relatives.

Thank you.

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A Happy Occasion: The Bodega Bliss Baby Shower

Yesterday I was honored to attend the Bodega Bliss baby shower. I teared up as I told her friends and family:

“I have dreamed about attending this baby shower for a long time.”

It did not disappoint.

When I met Emily, one of the first things she asked me was: “How’s Bodega?” I think Courtney’s story and words have touched so many hearts in the ALI world and beyond.

“The Devastation of Pregnancy Loss” was the first “Faces of ALI” portrait I wrote. I had been close friends with Courtney for over a year, and I both saw in person and read on the page about her struggle with RPL. I saw how drained she was, emotionally, physically and financially. So whenever I would see one of those awful empathy-free articles about infertility and loss in the mainstream media, mostly profiling the wealthy and whimsical (and, ugh, don’t get me started on the gross comments!), I would boil over with anger.

Addendum: Not too much has changed, alas: Mel pointed out a crass and classless “opinion” piece about the late Maeve Binchy (published on the day of her funeral, no less!), which questioned whether her childlessness made her a lesser author.

Courtney has navigated this pregnancy, her fifth, with a unique equanimity and serenity. It’s been inspiring to follow.

The shower, like its recipient, was heartfelt and beautiful. Courtney accepted every gift, every gesture of goodwill, every piece of advice with so much love and thankfulness and often tears of joy. Court’s bloggy friends Esperanza and Izzy were also attendees. At one point, Courtney explained how the four of us met. That we were all ALI bloggers. To the testament of her friends and family, no one flinched or blanched. Conversation continued to flow and there was no “EEEK!” reaction.

You know, that noise when the record needle abruptly gets yanked in unoriginal movies?

The sound of the conversation slowly turning to other things in a natural way was a glorious and triumphant moment.

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Faces of Adoption/Loss/Infertility: The Den Mother

Kirsten “Kir” Piccini believes she was born an “old soul.” Her maturity at a young age was quickly recognized by everyone around her. By the age of six, adults were calling Kir “Little Mother” and giving her responsibilities like handing out food and filling drinks at family functions. In gatherings with children her own age, she was always anointed the leader. As she grew older, she became the one the other children sought out for answers and guidance. She enjoyed her role as the worldly and adult-like figure. She wore her mantel of authority with both gravity and levity.

In college, she rebelled for a while and tried to be “just one of the students,” but it didn’t feel right. She eventually became the Resident Adviser in her hall, then finally the Resident Director of the college she graduated from.

“I loved living in the halls with the kids. I worried about them, I fought with them, I disciplined them. I had young women coming to me when a test went bad, when a relationship ended and when it began; I got to experience everything with these young people like it was happening to me. I was honored and shell shocked and always available.”

Kir received letters from parents of her students thanking her for “mothering” their children and being a good role model to them. Once she joined the workplace, she continued to be the one other co-workers came to for advice and support. When Kir met and married her husband, John, she was so excited to finally become a bona fide mother to their children. But she soon ran into the roadblock so many of us face: infertility.

“This, my friends, is irony of the most horrible kind. I never knew growing up if I WANTED to be a mom, maybe because everyone treated me like I was one already. I never doubted that I would be; I was not prepared to Not be.”

Suddenly Kir wasn’t the one with the answers. It was a difficult and unfamiliar place her to be in.

***

The Light That Dimmed

Kir loves many things in life: her husband, Aruba, Law & Order reruns, beautiful high-heeled shoes, giving the perfect gift, cheering people up, cupcakes, beaches, red lipstick, sunflowers, summer, makeup, the Today show, being on TV and the stage, the ocean, the color blue and reading women’s fiction and magazines. She HATES Halloween and the game “Hide and Seek” because she is afraid of the unexpected and she doesn’t like to be scared. She pretends to like her husband’s beloved New York Rangers, because she gets to spend more time with him that way. In every picture you will see of her, she is smiling: her American row of teeth straight out of a dentist ad gleam and her eyes blaze with a sense of joy and mischief. You want to know what her secret is: how someone can glow with light in a mere image. There’s no bushel near her.

Credit: Kirsten Piccini

The truth is: her illumination was dimmed during her battle with infertility.

Kir dealt with the pain and frustration of infertility by becoming a den mother within the ALI world online. She became well-known for her knowledge, cheerfulness and support among those blogging and on the infertility bulletin boards. And she doggedly defended those going through infertility and their rights to pursue treatments. In response to someone openly wondering on a board what the big deal was, someone who posited that not having a child doesn’t kill people, she said:

“…how can anyone tell me that Infertility hasn’t killed a little part of me already? What kind of test can you give me to determine if some part of me isn’t dead right now because of going through this? I can say for me, in no uncertain terms, that is has. I have lived through some awful things in my life, I have scars that are deep and constant and these things, even though I survived them killed a little part of me. Infertility has done this too, it has on more than one occasion murdered my hope, slayed my faith, assaulted my mental health. All of these things in the real world mean that some part of me is gone for good.”

When Kir and her husband were unable to get pregnant, they moved on to fertility treatments. They were diagnosed with that tough beast: unexplained infertility. Having no answers as to why you can’t get pregnant is a surprisingly common diagnosis. Their doctor recommended IVF. But they would have to borrow money to pay for it.

“I think that the money issue is a topic that Mr Kir and I are hoping to avoid. We could do a home equity, we could get a loan …an IVF is possible for us and for that I thank God for being able to even have the discussion.”

In April 2007, they decided to bet all their chips on one cycle of IVF. Kir was hopeful but frightened. What if it didn’t work? What if they bet the farm and got nothing?

The house didn’t win this time. Kir was pregnant: with twins.

But she was deeply frightened.

“Plus this is a scary time too…even though my OB and her staff are beyond excited for us and they told us they would see us as early as next week, the part of me that trusts the clinic is still scared that something will happen before then. I know it’s silly, but hey so is Pregnancy. Nothing about me feels ‘real’ or ‘for sure’ anymore. Many times I just feel like I am play acting at being Pregnant. I won’t read the books, I won’t go to the websites and talking about it is just hard. Almost like I’m a ‘little pregnant’ but let’s not discuss it for about 35 weeks or so, Ok?”

And Kir’s pregnancy was anything but routine. She was afflicted with the dreaded hypermesis: excessive vomiting and nausea. Then she had to go on bed rest and had pre-term labor contractions. Finally at 35 weeks, her twins, her sons, Giovanni and Jacob were born.

***

“…I knew me before Infertility, and for all the things in my life that hurt me and threatened to do me in, I never once felt the pain I do now. I never felt that empty place in me that Infertility has left in me, the small place where I know I am now dead. We talk about it all the time, the fact that even as we move out of Infertility and become parents, we take this part with us. We all agree that reaching the other side of parenthood doesn’t mean we will ever recover from the pain it took us to get there. Many of you have used the words I use now..that some small part of you is gone forever, whatever you called it, it was the heart and soul of you, the naive and optimistic little girl in you; the one who hoped and when she prayed she thought it would come true.. All she really needs is a memorial service because she’s not here anymore.”

***

The Treacherous Waters

Credit: Kirsten Piccini

For all of the research we know about the effects of infertility (we know it causes depression among those who suffer from it comparable to those who have cancer, for example) there has been little focus on the after effects of infertility. What do those who give birth to live children go through?

Kir’s cheerfulness and zest for life were both tested and enhanced by the arrival of her sons. Twins parenting is a unique parenting experience: a heightened and extreme version of being tasked with caring for all the needs of two precious lives at one time.

“I can’t believe I am going back to work next week…oh the tears lately. I can’t stand that I have to leave these two…they are getting to be more fun every day. The SMILES are real lately and they love their tubbies and recognize us. I fall more in love every single day.”

Because Kir had wanted so much to be a parent, because she had gone through so much to become a mother, she held herself to higher standards. She expected to be the very best mother ever to her precious boys, because she felt she owed them that. That she owed the infertility community that. She found herself comparing her mothering skills to many others, often mothers who conceived easily and had all the confidence in the world in their parenting decisions. She was very hard on herself.

“But as they grow, as they move and reach milestones and learn to pick things up, you realize that little by little they are taking little pieces of you with them. Your Heart IS outside your body now and every single decision you make now, from taking a shower to how much insurance coverage to get, to ‘What if I want a Saturday to myself’ is measured against every other mother who ever lived and you know that those decisions, however minor before children, are HUGE. They are life changing. For everyone.”

Many women in the ALI community don’t feel comfortable talking about the challenges of parenting, and feel that only gratitude and wonder should be expressed. Kir did a brave thing and was very honest about how difficult she was finding being a mother.

“It starts to become even more exhausting and sometimes in dark times, on bad days, you wish for those days when you could come home, take one for the team and head to the couch at 6pm with the TV on and have Diet Coke and Pringles for dinner. Of course that would mean that you were still TTC and all the crap that goes along with those evenings too, but just once in a while you do wish for that. Quiet, Peace, a place inside that is empty but content. Lately my insides are in mass chaos.”

Kir began to get chronic migraines and was eventually diagnosed with fibromyalgia. She struggled to find a way for the joy to overcome the difficulties and pain she was experiencing. One day in February of 2011, she accepted a writing challenge to try to tap back into her joyful spirit.

That day changed her life. She began writing fiction on her blog, serializing the romance of Kimmy & David. She drew a big crowd of fans who devoured her wonderful and fun writing. She created Proud Mamma Moments, a place to celebrate the small victories of parenting. She began her second romance, Gathering Buttercups. She’ll be one of the featured panelists at BlogHer this year. And, she was one of the very few chosen to speak in NYC at the “Listen to Your Mother” Broadway show. That one day in February sent her on the path to being the popular writer she’d always dreamed of being.

At the “Listen to Your Mother” show, she read an essay about the simple and complex joys of walking with her twins in Manhattan.

But infertility is never too far away from her thoughts. This Mother’s Day was a conflicted time for Kir.

“Sometimes I just want those miracles for the people I love; I don’t want anyone’s hearts to hurt like that during this time of the year.

And the hurt comes, the tears flow, the ache spreads, the guilt of having my children in my arms consumes me, making me question the worthiness of me instead of someone else.

People would like to tell you that once you hold your babies, no matter how they come into your life, that the pure pain of infertility will subside, it will stop throbbing and devouring your hope.

But they are wrong, because sometimes 8 years later, infertility still hurts.”

To read more about Kir’s remarkable journey and escape into her comfortable and fun world of writing, go to The Kir Corner.

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Faces of Adoption/Loss/Infertility

I thought it might be a good idea, since I am working on the latest one and I have some new readers, to highlight my collection of essays called Faces of Adoption/Loss/Infertility (or ALI) here in this post, all in one place. The series features three extraordinary women. I feel so incredibly privileged to have been able to write up and share their stories.

What is Faces of ALI? 1 in 8 people of child-bearing age in the United States is infertile. (Resolve) The physical and mental pain, the tremendous expenses involved to adopt or pursue treatments and the amazing journeys so many of us go on remain mostly untold to the greater public. I read so many unforgettable stories about incredible women going through ALI on hundreds of blogs, and I began to want to tell these stories. I thought if I wrote third-person essays about what it’s like to go through adoption, what it’s like to lose four pregnancies in a year and a half and what it’s like to have to live childfree/childless after your baby was born still; perhaps these essays could create a greater understanding among those who haven’t lived as 1 of the 8.

Where to begin:

Part 1: The Devastation of Pregnancy Loss: A Profile of Courtney Cheng

Part 2: Adoption: Sarah in Three Acts

Part 3: The Memory Keeper: Childless/Childfree After Loss and Infertility

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Faces of Adoption/Loss/Infertility: The Memory Keeper

Some families are just plum lucky. They have a member in their midst who is an archivist. These special people remind their clans of past ties: whether to family, school, places they’ve lived or events they’ve taken part in. If you are fortunate enough to have a talented documentarian in your life, they can present you with such treasures as scrapbooks detailing milestone events like baby showers or weddings. Or they can do the hard work of piecing together the long and winding road our genes can take us upon.

These historians are essential to society because they preserve what has happened in the face of time and tragedy and life changes. They are our “memory keepers.”

Loribeth is a memory keeper.

***

Every day, Loribeth and her husband wake up at 5 A.M. They drive together to their local station, then take a commuter train to the same stop in a large city in Canada. They walk to the same building and enter the lobby together. At the elevator bank, they say goodbye to each other and say “Be good” (a habit they fell into after watching E.T. in their early courting days) and “Be careful.” (Something they added after 9/11.) Then they take an elevator to offices 59 floor apart. They work until 4:30 P.M., then leave together, coming home at 6 P.M. after a long commute. They usually eat dinner at home, except on regular Saturday date nights. Loribeth often works on her scrapbooking or genealogy projects, or writes her personal blog in the couple’s home in a leafy suburb. They both voraciously consume books, which they both consider to be their biggest extravagance. On the weekends, they often see a matinee and they usually peruse the local bookstore. They sometimes attend their Anglican church services. They meet up with family and friends.

It’s a good, productive, fulfilling life. But it didn’t end up the way they planned. Because most Sundays, they visit their daughter Katie at the local cemetery.

“Even after ten years, there is not a day that goes by (& often not even an hour) that I am not thinking about my daughter & what happened to us in some way shape or form. She continues to be present & influence my life. We will visit her niche at the cemetery just about every weekend. It’s often just a brief visit (one particularly blustery day last winter, we didn’t even get out of the car) but it’s a ritual that gives us comfort.”

***

Loribeth was born to very young parents who didn’t have a lot of money. They were proud to send Loribeth on to college, where she met and married her husband. She and her husband both completed graduate school.

“We were fresh out of university, starting entry-level jobs that didn’t pay very much, with student loans to pay off, and a bare apartment in an ‘adults only’ building to furnish. I felt a responsibility to make use of the expensive education my parents had paid for, and find a decent paying job in my field. I was far away from my own family, and my mother in law was dead, so I knew I would have little in the way of practical and emotional support in taking care of an infant.

And so we postponed starting a family, until we became better established, financially and careerwise. We felt it was the responsible thing to do.”

They waited ten years, at which point they were comfortably settled into a house they owned in a family-friendly area. They did not anticipate any problems: they knew personally of many women in their thirties getting pregnant and the news was full of celebrities giving birth in their late thirties and early forties. They began to TTC (Try To Conceive) and consulted their family doctor when it took longer than they hoped. “Don’t worry, it will happen,” he replied. Finally, after two and a half years, it did: at age 37, Loribeth was pregnant. She and her husband were thrilled.

The year was 1998.

On Sunday, March 22, 1998, Loribeth took a pregnancy test. There were two blue lines.

“ ‘Whaaaa…. OH MY GOD!’ I shrieked. Dh came running. I showed him the stick. I started to cry. We sat on the floor of our bedroom & held each other. Was this really happening? After so many years of waiting, planning, hoping?”

Loribeth immediately called her mother, who was overjoyed.

“ ‘When, honey, when?’ my mother asked. I told her I wasn’t quite sure yet, late November. ‘Oh, a baby for Christmas!!’ she sighed rapturously — a sentence that still haunts me today.”

Loribeth experienced some spotting early on, which subsided. But almost a month later, there was bright red bleeding and Loribeth went to her local emergency room. She got an ultrasound, which quickly located a heartbeat. She was also told that she had a bicornuate uterus. The doctor on call assured her that this would not be a problem. The bleeding subsided again, and soon it was Mother’s Day 1998, and Loribeth was three months pregnant and had announced her good news to her workmates, her friends and family. She was thrilled.

Image courtesy of “A Road Less Traveled.”

“(After some pointed hints from me) Dh gave me a card & a Boyd’s Bears figurine of a pregnant mama bear, called Momma McBear. We’d started giving each other Boyd’s Bears figurines as gifts & I absolutely loved this one. I put it on the night table on my side of the bed.”

May blended into June with some routine doctor’s appointments. On day 122 of her pregnancy, Loribeth had a triple-screen bloodtest. There were some minor red flags, so her doctor scheduled her for a lengthy ultrasound. The news was ambiguous and somewhat frightening.

“He said he couldn’t tell us for sure that the baby was OK — but he also couldn’t tell us for sure what, if anything, was wrong. On the other hand, the baby was smaller than normal & so the technician was not able to see as many details. I was about 18 weeks along, but the baby was measuring behind schedule, at 15 weeks. The amniotic fluid was low. There was something — a spot or a mass on or beside the placenta. It could be a tumour (oh, lovely), it could be a clot. The baby also had an ‘echogenic bowel.’ It showed up bright on the ultrasound. In 90% of cases, this turns out to be nothing — but it could mean one of five things. Our baby could have cystic fibrosis. It could be an infection of some kind. It could be a blockage of some kind. It could be a marker for Down’s syndrome. Or it could be ingested blood. (This made sense to me, since I had spotted all through my first trimester.)”

On June 26th, Loribeth came into a clinic for an amniocentesis on her 139th day of pregnancy. She was dreading doing the procedure but it was highly recommended in light of the last ultrasound.

“I don’t remember a lot about that day. I remember they did an ultrasound to see where the baby was positioned, & I saw the baby wave its arm, as if it was waving at us to say hello. I tried not to look as the doctor got the needle ready, & then plunged it into my stomach. I gasped, & then burst into huge, wracking sobs. ‘Oh baby, I’m so sorry. Mommy is so sorry,’ I sobbed, over & over again.”

There was a long wait for the amnio results. Finally the call came in:

“Shortly afterward, I got a call from a woman in his office. ‘The chromosomes are normal,’ she said.

What? Normal?? Normal??? ‘Oh my God,’ I said, starting to cry. I remember saying to her, ‘Not that it matters… but can you tell me if it’s a boy or a girl?’
‘It’s a girl,’ she said. A girl!! Dh & I had always wanted a little girl.”

Ever since Loribeth and her husband had gotten married, they had dreamed of one day having a daughter named Katie.

With this good news delivered, Loribeth and her husband went to purchase Katie’s layette. On July 25, they went to Sears and found a Classic Pooh (not the Disney) bedding set that they loved. They bought it and ordered a matching wallpaper border.

On August 5, 1998, Loribeth went in for a regular checkup to monitor her progress.

“Eventually I got called in to see Dr. Ob-gyn. He’d been on vacation, of course, and it felt like a long time since I had last seen him. We chatted about the amnio results and I told him that those three & a half weeks of waiting had been the absolute worst weeks of my life.

Then he took out his stethoscope, & went to listen for the heartbeat.

He kept moving the doppler over & over my stomach. He’d had problems finding it before. I showed him the spot where he usually found it, but still nothing, except — for one brief, hopeful moment — a sound that turned out to be my own heart beating. The minutes ticked silently on — & on.

He asked me whether I’d been feeling any movement. ‘Yes,’ I said, trying frantically to think of the last time I’d felt that baby move. ‘Lots and lots?’ he said, just a tad sharply. I had to admit I hadn’t.

Finally he said, ‘Well, you can wait for the ultrasound you have scheduled this afternoon — or I can send you upstairs right now. But you have to be prepared for what they might tell you.’ ”

The ultrasound provider was unable to find any heartbeat or sign of life. It was over. Katie would never have a first day of kindergarten, she would never jump on a trampoline or hold hands with the next door neighbor’s girl, a baby born a few months later.

“We drove home. Dh called his brother & dad, while I made the hardest telephone call I’ve ever had to make in my life, to my mother.

My mother said to me, through her tears: ‘We’ll always remember we had a little girl.’

Of course, Loribeth now needed to deliver her beloved Katie. So she checked into the hospital and was given pain relief. In just a few hours, the birth took place.

“A little while later, two nurses appeared at the door, carrying a bundle of blankets. ‘Here’s your baby,’ one of them said to me with a smile. She unwrapped the blankets & handed me a tiny white, nearly weightless bundle. ‘Oh my baby!’ I said as I looked at her.

She was wrapped in a blanket, but over that, she was wrapped in a beautiful white crocheted shawl & a tiny crocheted cap was perched on her head. She was so very tiny (no wonder it didn’t take very long — I didn’t have to dilate very much for her to get through) — and very red — but her little facial features were perfectly formed. Her little head was larger than a golf ball, but smaller than a tennis ball. The crib card the nurses later gave me said she only weighed 125 grams, or about 4 ounces — definitely not your average six-month baby.”

After having a chaplain present to name and bless the baby, pictures were taken.

“I remember looking at her & thinking, ‘Look at what we made together! We did this!!’ She was dead, but she was a real baby — just a very, very small one — and she was a child of God. She was beautiful in her own sweet, sad way, and I felt a sense of pride, as well as sorrow….I took one more look at that wee red face. ‘Goodbye, baby. Mommy loves you,’ I said. I kissed the tip of my finger & pressed it to her forehead. It was cold as ice.”

The date was August 7, 1998.

***

Loribeth’s family held a small funeral for Katie on August 19th. Just a few immediate family members were present for the short service, and their parish priest said some words and said some prayers. They then drove over to the cemetery. The funeral director handed them each a pink rose, broken off a wreath that had encircled the urn at the church, and each of them placed one inside.

Then Loribeth’s husband walked up to where Katie’s urn had been placed, in a special niche. He placed a toddler’s board book beside it, a Classic Pooh book called Pooh and Some Bees.

“ ‘After all,’ he said to me when he bought it a few days earlier, ‘she would have grown up in a house full of books.’ “

***

Loribeth soon found that after Katie’s passing, many people, both friends and family, didn’t know what to say. One firmly told her: “Lori, it’s a tragedy.” One friend told her: “Well, you know, Lori, you’ve had a pretty easy life up until now.” One relative brought her some towels as a gift, hugged her and said: “We won’t talk about it anymore.” (And she never has.)

Loribeth returned to work after Canadian Thanksgiving in October:

“…people dropped by my office to say hello. Some of the women asked questions about what had happened. Most of the guys, looking uncomfortable, just said, ‘Glad to have you back’ & left as quickly as they could, lol.”

***

Loribeth was determined to move fast to try to get pregnant once more: she was not going to listen to her family doctor’s laissez faire advice again. She began testing, was referred to an RE’s practice and then she and her husband began fertility treatments. She went through three IUIs, then had to choose whether to pursue an IVF cycle. Her husband was against it: the chances of success were not good, and he was worried about Loribeth’s health. Shortly after her last IUI, she suffered a scary episode where she felt her chest tighten and she had to rush to the emergency room. The doctor diagnosed her with anxiety: the stress was becoming too much.

“I said I was 85-90% of the way there. I know we could do more — more IUIs, IVF — but emotionally, physically, mentally, I’m not sure I can do it anymore. I said I still wanted to keep the door open crack. And I said I needed a holiday!!”

They took a holiday, visiting Cannon Beach, Oregon among other places.

“We took long walks along the beach, explored the quaint little shops in town, sat around bonfires on the beach, watching the sun set over the Pacific, & enjoyed the company of my extended family. When we returned home, it was with the perspective and courage to say ‘enough’ & farewell to further treatment.”

For a myriad of reasons (the cost, their ages, the further complexities involved in “just adopting” and the general exhaustion from struggling with Katie’s stillbirth and the infertility rollercoaster, a ride that had lasted six years), Loribeth and her husband decided to not pursue adoption.

They decided to take “The Road Less Traveled.”

Two roads diverged in a yellow wood,

And sorry I could not travel both

And be one traveller, long I stood

And looked down one as far as I could

To where it bent in the undergrowth;
Then took the other, as just as fair,

And having perhaps the better claim,

Because it was grassy and wanted wear;

Though as for that the passing there

Had worn them really about the same,
And both that morning equally lay

In leaves no step had trodden black.

Oh, I kept the first for another day!

Yet knowing how way leads on to way,

I doubted if I should ever come back.
I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I–

I took the one less traveled by,

And that has made all the difference
Robert Frost

***

Loribeth’s “less-traveled road” has not always been easy.

“The decision not to have children — for whatever reason(s) — is extremely personal and complex, and not well understood by others in our highly pronatalist society — even within our own ALI community where — we know — we are some people’s worst nightmare come true. It’s extremely difficult to go against societal norms, not to mention our own biological impulses. For all the positive and wonderful advantages of childless/free living (& there are many), it can be a lonely place to be sometimes.”

She often comments on articles from the mainstream media on her blog: some about the “selfishness” attached to not parenting and messages in society that a woman’s worth is only or mostly based upon whether she is a mother. Mother’s Day can be a very difficult time for Loribeth and others like her.

But mostly she shines a light on a little known world that needs more attention: the world of those who are childless, not by choice. She is an inspiration to many because of her witty and warm writing, her clever critiques and her fascination with documenting the universe she knows. She works hard, keeps meticulous records for future generations, she dotes on her nephews. She enjoys nothing more than spending time with her husband, the love of her life, whether listening to Bruce Springsteen together on the way to work, looking forward to the possibility of an early retirement or spending Christmas with him and her family.

“If there is one thing that has helped us as we made the transition to childless/free living, I think it’s the certainty both of us felt, right from the beginning, that we could still have a good life together, just the two of us — because we already did. And I think it’s important to know that in your bones, to truly believe that, if you are considering a childless/free life, for whatever reason.

…The hard truth is, not all infertility stories end with a baby. But that doesn’t mean there isn’t a happy ending. Maybe it’s just a different kind of happy ending than we’ve all been programmed to expect.”

And she keeps the memory of her beloved daughter alive.

“There is a part of me that loves to write/talk about my pregnancy & my daughter. She is still (& always will be) a part of my life and, on a certain level, it brings me a wistful pleasure to think about her, even if her story is ultimately a sad one.”

To visit the extraordinary Loribeth’s blog, please click here.

Image from http://winniethepoohpictures.blogspot.com

42 Comments

Filed under Adoption, Faces of ALI, Infertility

Faces of Adoption/Loss/Infertility: S in Three Acts

One in eight people of child-bearing age in the United States is infertile. (Resolve) Adoption is far, far more complicated than the average citizen comprehends. There are many emotional issues around adoption. First: if you are going through infertility and choose adoption, there can be a grieving process for the loss of a genetic child. Second: there is the potential for fallout among the people involved in adoption. (birth mothers, adoptees and adoptive parents.) The adoption system has been reformed to favor adoptees more: the “open adoption model” is now the most common way to adopt. This method keeps adoptees in touch with their birth parents as much as possible.

Another public misconception is that adoption is easy and inexpensive, that there are many “unwanted children” out there, but that’s not the case. Adoption demands a tremendous amount of vetting of adoptive parents by officials: blood tests, home inspections, home studies, police background checks, pet inspections and vaccinations. Extensive physicals determine the well-being of a prospective parent: one must be healthy and disease-free. Friends and neighbors are talked to, finances are inspected. These processes, put into place with good intentions to ensure couples will make the best possible adoptive parents, are lengthy and expensive. The paperwork and the contracts and the lawyers involved can cost at least $20,000. The onus is on the adoptive parents to prove they are going to be the best possible caretakers to a child and help him or her develop to the best of his or her abilities, and give him or her what he or she needs emotionally and developmentally.

I hope by telling S’s story I can demonstrate the complicated emotions, the toll infertility takes on humans and how truly difficult it is to “just adopt.”

ACT 1: The Hell of Endometriosis

In May 2000, a lovely twenty year old member of the Army National Guard stepped off a bus in front of a barracks in Georgia. This would be her new home for a two-week training exercise.

I had no idea that my future husband saw me, thought I was beautiful, and decided to meet me. No clue at all.

Act One: Love and Marriage…and Endo

The two soldiers quickly fell in love and married in November of 2002. Two years later, they decided to Try To Conceive (TTC). By this time they were stationed abroad, and S’s husband traveled a lot. S’s cycles were also unpredictable, anywhere from 40-60 days apart. In early 2006, after two years of trying to conceive naturally, S was rushed to the ER in tremendous pain. The diagnosis was a ruptured ovarian cyst. Unfortunately her ER visits continued: in May she was diagnosed with Stage IV endometriosis and endometrioma on her right ovary. She was in tremendous pain almost all the time.

What is endometriosis? According to the US National Library of Medicine: “Endometriosis is a female health disorder that occurs when cells from the lining of the womb (uterus) grow in other areas of the body. This can lead to pain, irregular bleeding, and problems getting pregnant (infertility). Removal of the womb (uterus), fallopian tubes, and both ovaries (a hysterectomy) gives you the best chance for a cure.”

A pretty grim statement. But S is an extremely determined and proactive personality. She dealt with this blow by getting her hands on all the research she could about endometriosis and by engaging in as much natural treatment as possible. She began acupuncture and dramatically changed her diet to include mostly healthy, fresh organic food.

Unfortunately, these natural cures didn’t work and she was forced to remove her right ovary and tube. The endometriosis had caused scarring and twisting beyond what her body could take. Her doctor tried to assure her that now there was hope that she would not suffer anymore from the debilitating pain. Unfortunately, the pain returned, in full force:

“The pain is still here, and getting worse. Ovulation was day before yesterday, so the pain should have gone away by now. It’s hard to walk, hard to stand up, hard to sit down. I’m getting more and more upset as I type this. Forget trying to find a better doctor – I just need someone to do an ultrasound to put my mind at ease that my remaining ovary isn’t being destroyed by the endo.”

In 2009, after experiencing even more terrible pain in her abdomen and her remaining ovary, S tracked down the most renowned expert in preserving fertility in endo patients, a doctor who was at the CEC (Center for Endometriosis Care), in a far away city. She paid $3,000 out of pocket to fly to Atlanta and have a surgery to help rid her of the terrible agony she was in, without removing her final ovary. Instead of a vacation to a restful place, she took precious time off from her job for the prep, the surgery itself, and the recovery. The surgery went successfully and her doctor gave her a 75-80% chance of conceiving on her own. He warned that there would be a lot of pain as she recovered, but that should subside in time.

Act Two: Cleared for TTC!

The period after her surgery was a painful but hopeful time for S. She was hopeful that the issue that had caused extreme physical pain for the last three years had been resolved. Slowly, she became mostly pain-free. She was also hopeful that she would be able to conceive naturally, finally. She continued acupuncture, continued to eat mostly organic vegetables and fruits with healthy proteins. But as the months passed and she continued to get her period each month, she struggled with feelings of sadness. Making matters worse was that she was surrounded by pregnant co-workers and friends. Then, her sister got pregnant.

“I’m a nice person generally. I’m a good sister, really. And I love kids. But I can’t handle the constant yearning for something that goes unfulfilled year after year. I’m trying to protect my heart, but it gets torn to shreds anyway. Life happens despite my infertility and there’s nothing I can do about it. I can’t shelter myself from everything painful – there would be nothing left. Infertility touches every second of my life. There isn’t anything unaffected.”

S and her husband considered doing infertility treatments, but when someone has advanced endo like S, those treatments come at a very large risk.

“I’m not saying that going straight to IVF is wrong for other people. But for us it is. I only have one ovary. As much as I want to get pregnant, I don’t want to destroy my ovary in the process. (And a process that by the way that doesn’t even guarantee a pregnancy anyway.)”

Slowly, the idea of adoption took root. By opening their hearts to adoption, S and her husband must start to say goodbye to the dream of having a genetic child. It was particularly hard for S when she thought of her husband, whose parents had both passed away. This was a loss, and one they both need to grieve.

“Yet, there are those moments of overwhelming grief knowing that this could be the end of his genetic legacy. Obviously we are more than our genetic material, but some things are hard to let go.”

Finally in December of 2009, S and her husband attended a meeting about Domestic Open Adoption. They learned that 47% of children available for adoption are African American. They agreed to move forward, knowing that a trans-racial adoption was very likely.

In the end, S decided she wanted to parent a child, not just give birth to a baby.

“I want the responsibility, the pain, the joy, the frustrations, all of it.”

Act III: Hail Mary Pass

Once a couple decides they want to adopt, there are many, many hurdles to jump. There is no such thing as “just adopt.” In fact, as S goes through the process of adopting, she’s infuriated to see a friend on Facebook comparing buying a house to adopting a child.

“(When you buy a house) Does anyone do background checks, inspect your current house, ask you about your childhood, ask you about the stability of your marriage, make you write an autobiography about yourself, question your discipline techniques, get references from friends? No? Didn’t think so. And I’m pretty sure it doesn’t take a couple of years either. Does the average person really think you just fill out an application, they assign you a kid and then you live happily ever after?”

As the year progresses, S and her husband tried to sell their house to raise some of the estimated $25,000 in fees they’ll need to complete the adoption. Unfortunately, the poor real estate market put a damper on those plans. They slowly save money and complete their paperwork and inspections. A year passes.

Then suddenly, a game changing event occurs: on December 2, 2010, in a post called “Maybe I Could Sell a Kidney,” S announces that an expectant mother who is due in April would like them to adopt her child.

S throws her considerable powers of organization and determination into play. She feels this child is “the one” and decides to move heaven and earth to complete its adoption. (The sex of the baby is unknown.) S’s many friends and readers around the world ask how they can help, and two online auctions are promised. Friends donate many items for auction, including jewelry, six months of dessert, a lobster seafood package, an interior design consultation, handmade blankets, aprons, burp cloths, paintings and prints. S and her husband research and desperately try to track down information on their tax refund, which should be significant.

The first auction, held on February 2011, raises about $3,000. There are continued questions about when the tax refund will be coming through and how much it will be. S’s mother holds a dinner, charging $50 a person, to contribute to S’s adoption fund. The April due date is fast approaching.

The second auction, held in March 2011, garners almost $2,000. The onus is now upon the tax refund. Slowly April is upon them and the outstanding question of the tax rebate is answered when they receive $17,000.

With that uncertainty lifted, S puts her energy into breastfeeding. Adoptive mothers CAN breastfeed, if they respond to a pumping machine. S spends a lot of time and some uncomfortable moments pumping in preparation. She also goes on medication to help increase her prolactin levels.

Now the only uncertainty is the arrival of the child.

On April 23, 2011, a nine pound one ounce boy is born. S and her husband rush to the hospital to meet him. On April 28th, S’s 31st birthday, she finally met her son, after he was released from the hospital into interim care.

“I was in heaven the moment I laid eyes on him. The nanny had him swaddled and hungry, ready for me to feed when I walked in the door. I sat right down, popped the boob in his mouth, and he latched on like a champ!

It was kinda funny – he looked at me at first like, what the heck is this? Then he realized milk came out and he was a champion sucker all of a sudden . It was the most amazing feeling, I can’t even describe, finally feeding my son. He kept grasping the strap of my nursing cami with his fat little hand and pulling. It was the cutest thing ever!

After he nursed (he took about 1 1/2 oz from the supplemental bottle of breastmilk through a tube, so not sure how much milk he got from me – maybe an ounce? no way to know for sure without a baby scale), he grasped onto my finger hard and fell right asleep.”

On May 2, 2011, S’s son’s birth mother signed the official document surrendering him.

“Tuesday, the birth mother signed the surrender. There was no giant feeling of relief when we got the phone call…but I did feel an immense sense of sadness for what she must be going through.”

Now, eight months later, S is still nursing her son. At the latest doctor’s appointment he was declared ahead in every developmental category. S was immensely glad. She now says at the beginning of 2012:

“It’s quite a privilege to be entrusted with this tiny human, watching him and guiding him as he grows and learns. For the first time in seven years, I can look back on a year with something more than pain and regret.”

Postscript: S notes, “The total cost of the adoption ended up being just over $30k with all the home study, legal fees, etc. And that doesn’t even count the travel costs! We were able to scrape together that much money between the tax refund, the money we saved on our monthly mortgage payment from our house refinancing, savings, etc. (We’re) lucky too that the lawyer didn’t require any money up front – other wise it would have been a no-go.”

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Filed under Faces of ALI, Infertility