Redefining Infertility Success Stories

Infertility art work

Infertility success stories. We’ve all heard them. We all want to be one.

No one would argue that a journey that includes a baby and parenting is a success story. However, we at The ART of Infertility (ART of IF) believe that it’s not the only definition of infertility success.  Sometimes we find success in unexpected and beautiful ways.

In an effort to challenge perceptions of successful infertility outcomes, we’re publishing the first of what we hope will be a long line of non-traditional infertility success stories.

Reflections on Infertility Success from The ART of IF’s Elizabeth and Maria

“A successful outcome of my own experience with infertility has been the ways in which it has advanced my career. At one time, I worried about how my morning monitoring appointments might negatively affect my work. The frequency of doctor visits and the on-demand scheduling made me feel completely flaky and unreliable.”

“However, coping with my infertility by using art and writing, I started The ART of Infertility project. Working on ART of IF, I’ve had the opportunity to gather and share stories internationally. I also gained the experience in communications that allowed me to be promoted from Biomedical Photographer to Communications Specialist at The University of Michigan Medical School. I love my teams at ART of IF and at U of M and the work that I do. I wouldn’t be where I am today professionally without infertility” – Elizabeth

“When I first enrolled in college, I wanted desperately to become a physician’s assistant. In fact during high school, I spent my summer’s working at my grandfather’s urology clinic – often times accepting semen donations – an ironic memory that continues to make me laugh. Yet, as my first semester in college progressed, I found myself anxious and stressed. My science classes, while interesting, were difficult. During this time, I was also enrolled in an English writing class. Writing seemed to come naturally to me and I found happiness (and thus) success with writing.

Today, as I finish the last semester of my PhD in Rhetoric & Writing, I find myself feeling as if my higher education journey has come full circle. Studying what I call “rhetorics of infertility” and situating The ART of Infertility as a research site, I find my initial interest in health and medicine come to fruition. Here, with as a Co-Director of this project, I use our research to make arguments for more patient-centered practices of care. This work is personal and meaningful. I believe this is my new definition of success, doing work that matters and everyday has deep personal meaning. I’m pretty sure that while my infertility led me to this point, I still lucked out.” – Maria

An Infertility Success Story from Our Archive

Leanne Schuetz was diagnosed with Polycystic Ovarian Syndrome as a teenager. Even though she and her husband were in their early twenties when they began to try to conceive, it took five years, experiencing multiple miscarriages, and undergoing a series of intrauterine inseminations, before their daughter Olivia was born. While Leanne and her husband dreamed of having a lot of little ones, Olivia will be an only child.

Just over three years ago, Leanne first began creating artwork. Mixed media pieces of women who she calls “my girls”. Through this, she’s found a community outside of infertility and has truly become an artist. She’s found out first-hand how art heals. Listen to Leanne’s story, or read it, below and browse a mini gallery of her pieces to see how she’s progressed as an artist over time.

“It all started because I was really depressed because we weren’t going to do treatment again for infertility. Olivia’s going to be an only child, and I know that sounds really selfish. That we have her, you know. Like I should be so thankful that we finally had her and here I am depressed that we can’t have more kids. But I always imagined my life with lots of little ones for a really long time.”

“So, Olivia was in school full time and I still couldn’t go back to work because I wouldn’t make enough to cover the day care, even when she WAS in school. So I had all this time on my hands about what am I going to do with myself. And so, I just started doing the CitraSolv papers, which led to art journaling, which led to my girls.”

Leeanne Schuetz has used art to find out who she is outside of infertility.

“Their proportions aren’t always exactly right but that’s okay. It’s about celebrating their imperfections, and lately I’ve been thinking about, you know. I like the idea of courageous hearts – of facing where they’re at, who they are. I’m talking about them like they’re real but they’re real to me. And being okay with who they are and everything that makes them different, and special, and unique, and… Some of my girls are sad and some of them are happy. It just kind of depends on how I’m feeling that day and how they come out.”

“It’s not all about infertility. You know, some pieces definitely are because I certainly still have bad days where a pregnancy announcement will knock the wind out of me. Or the days that I remember my miscarriages and for me, I’m using art as a way to move on past infertility. It’s trying to really have a life beyond the fact that I’m infertile.”

“For so many years, I mean, years before Olivia was born, the years after Olivia was born, my whole life was revolved around infertility. So really, for me, I’m using art as a way to try to find out who I am apart from that and to discover what I like and what I don’t like.”

“I like doing mixed media, I love collage, I love acrylic paint, I love water color. I really love doing collage and I love layering. All my pieces have a lot of layers to them.”

“For the most part I never know what I’m going to make before I start. I know it’s probably going to be a girl of some sort but I don’t know who she is or what she looks like, So, just whatever I’m feeling, you know. Happier days tend to be brighter, more fun colors. I went through this phase with a lot of browns. You know, I was in a funk and I was really drawn to the browns. I love purple. Purple always ends up in my colors, I’m not really sure why.”

“I was inspired by some other artists who I met online who were really encouraging and they’ve really just been amazing. The artists online that I’m friends with, you know, because for a long time, ‘I’m not an artist, I’m not an artist,’ you know, ‘I can’t, I’m not creative, I’m not really an artist, it’s just a hobby.’”

“They’re the ones who just encouraged me saying, ‘No, you ARE an artist. This is a part of who you are and it’s okay to call yourself an artist. Even if no one ever sees your art, it’s okay to call yourself that and it’s okay to want to grow as an artist and to learn new techniques.’”

“I mean, I’m definitely a baby artist. I still have a lot to learn, but yes!”

“I’d love to be able to do some sort of workshop, teaching other women who think they can’t draw and have no skill. I’d love to be able to do something like that I’d love to, I don’t know. I have a little Etsy shop. I sell art once in a while but I know eventually I’d love to teach it to anyone who would want to learn. You know, especially I think I have a special place in my heart for people who think that they’re not artistic, for people who think they can’t do art. Because I always said I’m not artistic. My step-mom had to kind of drag me along in starting doing it and I’m really thankful for her for that because I would have never attempted it because, ‘I’m not creative’.”

“Everyone is creative. They just have to find what that is and what makes you happy, and what you like to create. And even if your art isn’t considered “good art” by anyone else, if you enjoy making it, then just keep making it.”

View more of Leanne’s work on Facebook. We’d love to hear the success, outside of becoming a parent, that has come from your own infertility journey. Share it with us and you could be featured in a future post. Help us bring inspiration and hope to others on their infertility journeys.

20 Days After Miscarriage

Today’s guest blog is from Lindsay Mader. In it, she gives us a glimpse at each of the 20 days after she learned she was miscarrying. I love this post because it’s a great reminder to us that everyone handles grief in different ways, that grief isn’t linear, and that there is no time line for grief. Thank you, Lindsay, for sharing your post with us. We wish you peace and healing as you navigate your infertility journey.
– Elizabeth

20 Days After Miscarriage

morpho-butterfly-1452254349nbz

We got the news on Friday, October 28th. That Friday is Day 1.

Day 1 – We got the bad news. We had tickets to a show we’d been looking forward to for months. We got dinner before. The hostess said “Just two?” Yup. There’s only two of us now. I cried twice while at the show. Once into Joe’s chest and once in a bathroom stall. I wanted to die.

Day 2 – I didn’t brush my hair or my teeth. I did put on pants and went outside. I cried, a lot. I ate a lot and drank lots of wine.

Day 3 – I did some cleaning. Had to get groceries in public. Made it all day, no tears.

Day 4 – Back to work. I’m glad I had the weekend to process. Cried on my way to work. Today should have been our first ultrasound. Cried three times at work. Joe makes me laugh on the darkest days.

Day 5 – I feel like I’m in a fog of sadness. This is my favorite time of year and I worry that it’s ruined.

Day 6 – I’m making a lot of terrible jokes. Guess I’m coping. Tonight, I fall asleep with tear filled eyes. So many opportunities are lost.

Day 7 – Started my morning off crying sobbing at my desk. I’m angry and I don’t know where the anger needs to go. I’m sad. Tears flow freely. My friend rolled over and hugged me. An act of kindness goes a long way. Someone knocked over my “hope” sign. That’s reflects my life pretty well today.

Day 8 – Blood draw. HCG was 12.4. I’m less pregnant each day? I guess. We did receive an Edible Arrangement from family. That was so thoughtful and made us feel so loved.

Day 9 – Fun day with Amanda! At lunch, directly next to us were two couples celebrating a pregnancy. They opened gifts at the table. Guys, I think I’m being followed by pregnant people.

Day 10 – I’m sleeping enough but I feel exhausted all the time. Doing everyday things is hard. Met with Nicole for some BFF time. I’m grateful for people who invest in me even though I’m not always the best company.

Day 11 – We met with the doctor today and determined next steps. More meds this time around but we are optimistic. Support group met today. They give me life❤

Day 12 – Election Day. I had a pretty good day.

Day 13 – My anxiety has heightened for several reasons but I’m doing better than I thought I would at this point.

Day 14 – Another good day. Spent some time with a friend who encouraged me.

Day 15 – I received surgery and transfer dates today. Also, the cost. About $6,000. The guilt I feel is heavy. I also got the news that I’m officially no longer pregnant. I got to see my Mom today! I broke down when I saw her. Overwhelmed by the cost of IVF again and that fact that I thought I’d be pregnant when I saw her next and I’m not.

Day 16 & 17 – I had a wonderful time with my Mom. It was just what I needed.

Day 18 – It’s always hard to get going after a fun weekend.

Day 19 – While struggling with my own stuff, it was brought to my attention that my infertility makes some uncomfortable. That hurts.

Day 20 – I’m hopeful. I’m excited for Christmas. Our transfer is right around the corner. Today, the clouds have lifted.

Taking a Time Out to Grieve During the Holidays – Perspectives from Elizabeth

Thanksgiving, 2009 was the last holiday before my world came crashing down. The illness and death of my sister-in-law, the relocation of three of my nieces who my husband and I had been caring for in my home, our infertility diagnosis.

I’ve been weepy the past few days. Okay, more than weepy. I’ve indulged in an ugly cry a few times. There isn’t anything current that is contributing to this. It’s like my body remembers that we’re entering the season of traumas past and is working through emotions that are rarely as close to the surface as they once were, but must need some attention.

In the months following that holiday season that everything went wrong, it wasn’t hard to grieve. It was something I did constantly, both intentionally and unintentionally. I had a play list of songs, that I’d deemed “sad” that I listened to every day on my commute to and from work. I attended therapy sessions and grief support group meetings, I told everyone who’d listen what I’d been through. I journaled. However, as time has passed, and I’ve adjusted to life without my sister-in-law, without the girls, WITH infertility, I don’t often take time out to acknowledge what I’ve been through and grieve it. Years of unsuccessful infertility treatments, the miscarriage of my twins, the strain that infertility has put on my relationships.

That last Thanksgiving, I saved the wish bone from the turkey and put it in a dish on the shelf above the sink in my kitchen. It’s been there since. There have been a few times I’ve reached inside to make sure it was still there. Traced my finger along its curves. I’ve even taken it out a time or two. It was only recently that my husband knew it was there and that I started thinking that it’s time for the wish bone to move on.

thanksgiving-art

So, I spent some time, intentionally grieving the primary and secondary losses of infertility while creating this piece. Doing so was painful, messy. I had to face emotions that aren’t pleasant and sit with them for a while. It’s a remembrance of the lives that were, a prayer for wishes long desired to come to fruition, and an acknowledgement of not just the fragility of it all, but the strength that we find in community.

While there are many things about this season that are difficult, I’m thankful for those I have in my corner, both at home and around the world, because of this infertility journey I’ve been on. I send you wishes for peace as you enter this difficult season.

Going Home with Only One: Loss when pregnant with multiples.

Today’s guest post is from Darla by way of her blog, Ten Times As Long. In it, she reflects on fears surrounding her twin pregnancy when she knows she’ll only be taking one of her daughters home. This post contains themes of loss as well as ultrasound and pregnancy photos. Thank you Darla, for letting us share your post with our community.

Friday, August 26, 2016

Fearful

(Warning: this post may get a little heavy at times, but these are the realities we’re facing.)

With only about two months to go until D-Day, it’s really starting to sink in that we’re going to be having our baby girls soon. And that we will only be bringing one of them home with us.

And y’all, I am so scared.

Not just about labor, although I have enough mom friends to be more than a little freaked out about labor and all the postpartum goodness that goes on. I’m full of so many other fears. So in an effort to alleviate some of those fears, or at least ease my mind a bit, I’m going to spell them all out here. Fully recognizing how irrational many of them are.

  • I have 8 weeks of pregnancy left, give or take. It took only about two hours for my entire world to fall apart when we found out about Cate, so 8 weeks is an eternity on that timeline, and I’m terrified that something will happen to Olivia during that eternity. My biggest fear, for whatever reason, is her getting tangled in her cord.

    olivia

    Olivia

  • I’m scared of being pregnant forever. Not literally, obviously, but longer than traditional “full term.” Not because I’m uncomfortable or TOBP (an acronym my doctor used: Tired of Being Pregnant). But because the longer I’m pregnant, the longer I’m literally carrying the weight of my dead child. Not only is there this mental weight that I’m carrying, but there’s a physical one, too, and it feels like it’s impossible to move through the grief while I’m still carrying that weight.
  • I’m scared of not being pregnant long enough. I know right now that Olivia would be in relatively good shape no matter when she comes, and really my fear isn’t about pre-term labor. It’s about saying goodbye to Cate’s physical form. I’m terrified of the moment Peter and I have to say that we’re ready to say goodbye and that they can take her from us.
  • Before we even get there, though, I’m really afraid of the what-ifs regarding Cate’s delivery in particular. Olivia’s will go as normally as a routine delivery can go. But Cate? No one can give me an answer. We don’t know how she’ll come out, no one can give us an answer on what she’ll look like. Will we even be able to hold her? Get her little hand and footprints? Will she even have hands or feet? What about her sweet face? I need something to remember her by, and while I’m sure every doctor we’ve talked to is sympathetic toward our wishes, they just can’t say for certain that we’ll get that. And it’s devastating.

    Cate.

    Cate.

  • The fear of holding my baby girl is overwhelming sometimes. Which makes me feel terrible. But I have no idea how I’m going to feel, how she’s going to look, how I’m going to react to her. So many feels, and I’m so scared that I’m just going to fall apart right when my girls need me the most.
  • Going home? With only one baby, when we were planning for two for so long? How am I going to handle this? I still walk into the nursery sometimes and think about how there should be TWO cribs in there, TWO names on the wall, TWO sets of clothes. And now we’ll have to take ONE baby out to the car in ONE carrier and put her into ONE crib that night.

    At 31 weeks.

    At 31 weeks.

  • I’m afraid this is always going to hurt. And not in the time will make it less painful way, but in the full-on, can’t catch my breath, heart breaking because Peter just asked me “why us,” feel like I’m going to fall apart way. Because I don’t know why us, and I never will. And not knowing makes it that much harder to move through this and get to the other side of the gut-wrenching pain and into the dull ache because my heart is missing a piece.
  • What if that hurt turns into full-blown PPD? I’m already at increased risk because of my general depression and anxiety. Losing part of a pregnancy only increases that risk. I’ve already requested that Peter and my mother be on close watch, as well as my therapist, but I’m so scared for myself, for Olivia, for my marriage, for everything.
  • I’m terrified that people will forget Cate. Olivia is going to bring such joy to our family, and I know we’ll all be so focused on her and on loving her. But what about Cate? She needs love, too, even though she won’t be here on earth with us. I’m scared that, as time goes on, people will forget she ever existed, and I can’t stomach that. I need to remember her, I need everyone to remember her, because she was real and was here and will always be a part of our family.

I have so much anxiety going into these last two months that it’s almost stifling at times. I feel like I can’t catch my breath, and when I do catch it and I feel normal for half a second, I feel guilty for feeling normal when none of this is normal. Peter and I met with a hospital nurse in charge of “special deliveries” earlier this week, and every time I looked over at my husband, I thought to myself, “We’re just babies ourselves; we shouldn’t be discussing burying our baby.”

To those of you who have dealt with me during these times, thank you. Thank you for the distractions, thank you for the loving messages, thank you for talking about our girls and remembering that Peter and I are the parents of two beautiful little babies. Thank you for reassuring me. Thank you for letting me talk, vent, cry, talk about morbid things like funeral arrangements with you. You are all such wonderful people, and I know our girls can feel your love all around them.

Darla began her blog, Ten Times As Long, back in 2012 as a way to cope with the sudden surge of anxiety and depression that had plagued her since high school. She found that writing about her experiences and emotions in a way that is raw, unfiltered was her way of facing her problems head-on. The blog has followed her through unemployment, marriage, infertility, pregnancy, and now pregnancy loss. As Suzanne Collins wrote in the third installment of her Hunger Games series, Mockingjay, “It takes ten times as long to put yourself back together as it does to fall apart.” This blog is Darla’s way of putting herself back together, piece by piece.

 

 

The Intern’s Perspective

cr-exhibit-2016_031

Hello all, you don’t know me but I hope by the end of the year you will. My name is Jalen Smith, I will be working with Maria and Elizabeth this year as their Social Media and Communication Intern for The ART of Infertility. I am currently an undergraduate senior studying journalism at Michigan State University in East Lansing, Michigan where I will graduate in May 2017. I come into this internship with a vast array of experience in communication/writing related positions. Here at MSU, I have worked with various campus media outlets including VOICE Magazine as their Vice President and Content Editor and The Black Sheep where I work currently as a Staff Writer. In addition to my experience in the media, I am also a member of the living learning community RISE (Residential Initiative on the Study of the Environment) program where I served as a peer mentor and working towards a minor in Environmental and Sustainability Studies in addition to my major. I am originally from Detroit, Michigan where I attended the award winning Cass Technical High School and served as a Public Affairs/Communication Officer for their Junior ROTC program

Enough about me though, I am super excited to be working with the project this year. This past weekend, I had my very first opportunity to see some of the artwork in person and truly get a feel of what this organization’s message is. The event took place at REACH Art Studio in Lansing, Michigan about a 10 minute drive from East Lansing. At first glance, the artwork was a lot to take in, I needed a moment of retreat to take in the context of the art I was seeing.

One of the many new pieces on display from Art of Infertility at the exhibit.

One of the many new pieces on display from Art of Infertility at the exhibit.

Having said that, the art was engaging, it was powerful and it was compelling. I particularly enjoyed certain key pieces that included Elizabeth’s own piece titled, “Crib with Medication Boxes.” It really spoke to me, the amount of trial and tribulations this disease has caused so many. It made me think about the families, the mothers, the fathers, that were heartbroken, made to feel “less than” because of their inability to conceive. It made me think about some of the small things in life some of us take for granted. “What comes easy for some does not come easy for others.”  A lesson in the realities of infertility for millions across this nation and quite frankly, across this planet was a hard pill to swallow. The art exhibit also had lots of other interesting pieces from many other artists and had a thought provoking outlook in the sector of cultural rhetorics.

Elizabeth Walker's piece titled, "Crib with Medication Boxes" Was one of the many featured in the show from Art of Infertility.

Elizabeth Walker’s piece titled, “Crib with Medication Boxes” Was one of the many featured in the show from ART of Infertility.

The concepts in which these rhetorics exist for me is still a confusing concept to grasp luckily Maria will be able to coach me through them this year. There are several different themes associated with the rhetorics of this event. For the Art of Infertility most of the artwork exist in three of those categories: activism, body, and unity. Activism is something that for me stands out as a core theme of this organization. The ability to spread awareness, start conversation and engage and bring together people of different backgrounds to discuss an issue that has long lasting physical, mental and emotional trauma. I’m so thankful that I have been given the opportunity to work with this team this year. To help create engaging content that will allow the voices of the voiceless to be heard. Looking forward to an academic year of purpose! Until next time! Hello again!

Maria Novotny and I discussing other artist's pieces during our visit to REACH Art Studio.

Maria Novotny and me discussing other artist’s pieces during our visit to REACH Studio Art Center.

Nesting

As I wrote in a blog post not long ago, Maria and I recently had a conversation about how our homes have taken on a different purpose and meaning due to our infertility and living in them as families of two. It got us thinking about nesting, which inspired me to create some artwork around that theme. I made one piece, my “Inhospitable Nest” around the memory a dream I had years ago.

Choosing the materials for that piece and setting aside time to create it was very calming. Weaving the wire in and out was a meditative process and, while I don’t always end up with a product that looks like it did in my head, this one did. Better even. It made me want to create more nests. I’ve since created two more that I’m sharing with you today.

The first was created around a painful experience I had while my sister was visiting with her two youngest children. My four youngest nieces and nephews were having a sleepover at my parents’ house. My mother bought them all matching pajamas and they were wearing them, sitting in a row on my parents’ couch. I was overwhelmed with sadness. I knew that if my twins, conceived after our first embryo transfer, had survived, they would be sitting in the middle of the line up.

Cousins by Elizabeth Walker. Mixed media - copper and aluminum wire, coral, moss.

Cousins by Elizabeth Walker. Mixed media – copper wire, coral, moss.

 

The second was inspired by a conversation I had with my husband, Scott. We have pet Zebra Finches at home. The birds laid five eggs. One was kicked from the nest, one never hatched. However, three baby birds were growing well. Sadly, they died one by one, the last just days from being ready to leave the nest. Scott mentioned that we shouldn’t let them have babies anymore because it was a lot of work for them without the babies even surviving, to which I responded, “They did better than we ever did.”

Five years, five Clomid with timed intercourse cycles, four IUI hybrid cycles, one IVF cyle resulting in the transfer of three embryos and the furthest we ever got was an early miscarriage. Still, I’m grateful for that brief time I was pregnant.

Better Than We Ever Did by Elizabeth Walker. Mixed media - copper and aluminum wire, pearls.

Better Than We Ever Did by Elizabeth Walker. Mixed media – copper and aluminum wire, pearls.

 

 

#startasking What did my infertility teach me about parenting? – Marissa’s perspective

We love infertility lists, and this is an incredible one! It comes to us by way of Marissa, an ART of Infertility participant and collaborator. Thank you, Marissa, for sharing your story with us.

Elizabeth

5 Things Infertility Taught Me About Parenting

This is a post I never imagined I might write . . . After fifteen assisted cycles (7 IUI & 8 IVF), two surgeries, three failed attempts to adopt, and a cautious pregnancy, my husband and I welcomed our first son earlier this year. Only then did I begin to allow myself to consider not only what it would feel like to have a child but also to become a parent.

I am absolutely certain that I am different as a parent because of my infertility experience and changed as a member of the infertility community because I am parenting. I am as certain that I could have never imagined the growing gratitude that I would now feel for our infertility journey! These are (the top!) five things infertility taught me about parenting:

1. You Are Not In Control (And That’s Totally OK!)

Being out of control was one of the most frightening aspects of infertility for me—being carefully in-control was my go-to response for everything new and scary. Getting a PhD, no problem! Moving cross-country four times in my twenties, I can do that! IVF, bring it on! My mom came with us to my first RE appointment and took a picture of me standing outside of the office to save for our baby book. A year later my husband hid the empty little book with the single photo after I’d thrown it across the room in a mixed-up burst of mad sadness. I hated how happy I looked before I knew the storm that was brewing. I hated that there was nothing I could do guarantee that I would become a parent. I hated that I couldn’t change my body and how it worked (or didn’t). I’d changed so many aspects of my life (my home, my job, my diet, my lifestyle) in attempts that felt naïve and futile. I felt cursed, and I wondered if I had done something to cause this awful burden.

Infertility crushed not only my dreams of what my life would be like but also my usual ways of making sense of the world. Before infertility, I expected that hard work produced results. After years, failures, losses, and mounting costs, I began to seriously doubt my life beliefs. I became clinically depressed. I developed anxiety. I fought accepting that effort did not equate outcome. I had to be forced to let go. I grieved the sense of order that had previously shaped how I saw not only my life, but also how I saw others’ lives. As a teacher, this was especially devastating. It was a double blow: I lost my vision of my future family and my purpose in my career. I struggled to differentiate between what I could control and what I could not. With the help of a thoughtful therapist (who was also an infertility survivor), I found I could not control outcomes but could control my responses. Each week, in a sketchbook, I would draw my plan of action—my mantras for the week, the cycle, the loss, heck— even the hour on very bad days. And I had a lot of very bad days. Days when I cried in my classroom in front of my students. Days when I felt like it took effort for me to breathe. But, a few days (or hours) were not so bad. I began to find strength and purpose through connecting with others. Instead of focusing inward on my own pain and fears, I began to focus outward into the infertility community, in my support group, and on events like RESOLVE’s Advocacy Day. I began, once again, to see positive outcomes from my actions.

Participating in the infertility community restored my faith in myself and in what I might accomplish. I might not be able to will myself to become a parent but I could use my voice to speak about my experiences, create art that responded to my emotions, and advocate for others to have the right to pursue their own dreams of a family.

Giving up some control opened me to experiences I could not envision. It re-energized my teaching, and helped me to see my students with greater empathy. It forced me to focus my attention on the present, and to act proactively without immediate gratification. Of course, now it is easy for me to see how absolutely essential these lessons are for the experience of being a new parent. Trying to control is a natural response for many people to new and scary experiences, like parenting! While my impulse is still to control, I have learned to be content with doing the best I possibly can at any given moment. While I still hope for certain outcomes, I don’t punish myself if things don’t go the way that I expect. Even more so, I have encountered the most wonderful surprises that I might have missed had I continued to live in such a rigid way! There seem to be thousands of books focused on parenting and baby care—particularly sleep—that promise ‘results’ within strict structures. There are so many mixed messages, and so much pressure. It is a familiar feeling for me, but my perspective has seismically shifted. Instead of trying to control and living constantly with the image of a perfect future, I am working to focus upon enjoying the current ride.

2. Your Child Is Not You

Early on in our infertility experience, when we began to pursue domestic infant adoption (which was not successful for us), I had to face the idea that my becoming a parent might not involve my own or my husband’s DNA. Even after a career that involved working with vulnerable populations of young children in which I contemplated adoption frequently before experiencing infertility, I had taken for granted that when I chose to have children, my genetics would be part of the equation. I had to admit to myself that part of my vision of my future family included children who might resemble us in appearance and in interests. Beyond these worries and fears, we faced the loss of control (see #1) over our potential future child’s earliest start in life. When we were cycling, I spent so much effort trying to control every aspect of my own body in preparation for pregnancy—I changed my diet, gave up caffeine and alcohol, did yoga and acupuncture (even though I still HATE needles even after the hundreds of shots I’ve given myself). I even ate the pineapple (you must know what I mean!) When we faced our first adoption situation, all of that changed. The expectant mother was seven months along, and had no prenatal care. She was denying her pregnancy and was using drugs and alcohol. Within the 24 hours we had to make our decision, we embraced the possibility that our child might be nothing like us. We had no idea who they would or could be. We took the plunge. And we were crushed when the expectant mom texted us that she had chosen to parent her child.

We knew then that we would love the child who joined our family, no matter who they might be (or become). I had always said I would feel that way when I was asked. And when you are pursuing adoption you are asked a lot if you could love ‘someone else’s child.’ Even though I always answered yes without hesitation, I was still afraid there might be a difference for me. A difference of expectations. A difference of fear.

Once I had grieved that difference and confronted those fears, I began to see a new possibility: That I could never know who my child would be.

That I would learn who they would be as they became themselves. Worries have turned to delight for me as I watch my son discover his own capabilities and interests. He has challenged me to accept him as himself and not as my vision of who my child should be. Because of this, I can choose to respond to my son with love and with support, a practice that I strive to maintain each day.

 3. All Seasons Of Life Both Grow And Strain Relationships

Infertility affected every single one of my relationships: My family, friends, my husband, and my work. Infertility is generational: I felt as devastated that my parents would not become grandparents as I did that I would never parent. Like many infertility patients, I started trying for a family when my friends did. My Facebook and Instagram feeds became minefields. I quietly unfollowed almost everyone I knew (or at least it felt that way) when the daily deluge of pregnancy announcements and baby pictures suffocated me. I even temporarily left my infertility support group when it became clear that I would be the last member without a child. It had transitioned to a new mom’s group and I felt left behind. I was too jaded to join a new group to be the living reminder of the worst-case scenario. Who does 8 IVF? Who ‘fails’ at adoption? Even our therapist cautioned it might be time to ‘move forward.’ As friends’ babies grew into toddlers and preschoolers, I bought birthday gifts through full body sobs at children’s stores. I wanted so much more from those around me. I wanted support, I wanted acknowledgment. I wanted care. But I was in an ugly place. I couldn’t even remember what my life had been like before when I still felt possibility.

But, there were a few high points: When we went public with our online adoption profile, we received an outpouring of support. We felt some of the silent stigma of treatment temporarily lifted. A few friends even came forward with their own struggles to offer solidarity. Yet, one, two, three adoptions failed, and we could not continue. It was the darkest time of my life. We could no longer afford the monthly fee to continue to host our profile. I’d known this for a while, but I kept hoping. A few days later, I went to the mall to buy a gift before a family birthday party. I was walking around the food court when I felt a gush. I was having breakthrough bleeding cause by a medication I took after treatment. Blood soaked through my dress, poured down inside of the tights I was wearing, and pooled around in my shoes. I lied on the couch in the Macy’s bathroom and called my mom to bring me new clothes. I felt so ashamed that she would see me in that state. My rock bottom. The very next day we chose to cycle ONE last time. Actually, my husband decided. I was livid with him. How could he put me through this? How could he possibly understand the physical toll? How could he still have any hope? I went through the motions of the cycle, plagued by anxiety. The night before the transfer, I had a glass of wine. That morning, a cappuccino. When I began to feel sick a few days later, I worried that I’d gotten an infection from the transfer.

It never occurred to me that I felt sick because the cycle was successful. I hadn’t had any morning sickness with the last pregnancy. I spent the next few days wearing Sea Bands and in a state of suspended animation. When I began to bleed a few weeks later, I thought I knew what to expect. It would be a loss and we would be grateful we’d only told our parents. But, it wasn’t a loss. It was a subchorionic hematoma. One that healed. An earlier than usual ultrasound revealed a single small blob with a rhythmic heartbeat. And, just like that, it seemed like our journey might end.

Except I wasn’t ready at all. I had spent so much time feeling isolated from family and friends that I was not sure how to repair the relationships. My husband and I had battled infertility for the entirety of our marriage (we chose IVF in lieu of a honeymoon). We had to learn how to relate to one another when we weren’t in crisis mode. And, how would I tell my closest infertility friends?

Would my identity as an infertility advocate continue to be valid if I was a parent, too?

The process of becoming an infertile parent has not been easy. There are no roadmaps for the seasons of life, and I have found that each season affects relationships. Some are strained, some grow in unexpected ways. A few friends who were close when I was struggling (and who are still journeying) have now distanced themselves from me. I don’t take it personally, and I try to be open should they need me. I better understand the pain my parents felt because of my struggle as I experience the impulse to protect my son. I no longer expect my life to be one smooth, predictable journey, and I try to weather all of its seasons as thoughtfully as I can. I try to be the friend that my friends need, not the friend that I want them to be to me.

4. Life is Both Precious And Fragile

Before my first pregnancy, I had never lost anyone close to me. I hadn’t confronted my own mortality. I had never truly grieved. And I had no idea what a process it was. My grief was messy, raw, and just when I thought I was feeling better, it was totally unresolved. How could my baby die? How could I love and yearn and long for someone who was as big as a sesame seed? Well-meaning friends said things like “at least it was early,” and “at least you know you can get pregnant.” But this was a real child to me. And it was gone. And we would never learn why. And there was no model to mourn for them or to remember them. And everything reminded me that my baby was lost.

During our fourth IVF cycle, I felt sick after my retrieval. I’d had mild ovarian hyperstimulation syndrome (OHSS) before but I felt worse this time. By early afternoon I was struggling to breathe. We went to the ER. I was in so much pain I was fading in and out of consciousness. Doctors told me my left ovary had burst, filling with blood and fluid, and pushing on my diaphragm. They explained that I’d likely have emergency surgery to remove one or both of my ovaries, and that they needed to transfer me to the University Women’s Hospital. They hadn’t decided yet if I’d go via helicopter or ambulance. I turned to my husband and vowed we would NEVER do IVF again! I’d risked my life, and for what. ONE stupid egg! I was transferred to the hospital, and made it through the night with the support of fluids and without surgery. As l recovered, I questioned whether I wanted to become a parent enough to risk my own health.

When that egg, now a blastocyst, was transferred after my recovery, I committed myself to treating the experience differently. If this was to be my only time with that single embryo, I would enjoy each and every moment. I didn’t want to spend the whole time we had together obsessively peeing on sticks. I wanted to take them to experience life, and to enjoy our time together. It was a definite change of intent for me. I began to see both how precious and how fragile that small, new life could be. And instead of only grieving the brevity of our time together, I began to cherish it. They were coming with me everywhere anyway, so I went to my favorite restaurant, I went out with friends, I went shopping, I went to visit family members. I wanted their life, no matter how short, to have meaning. And I wanted to remember them. We did ultimately lose that one little embryo (and several more) but with each subsequent transfer, I became better at relishing that short time rather than lamenting it. I was grateful for it. I tried to embrace the same attitude with my family and friends. I began to reach out, and to transform in this connection. Instead of waiting for family and friends to support me, I began to give without expectation. I made time to spend time with those I loved. And, we began to celebrate the lives of our babies during the time we had with them, and after they left us. We have memorials throughout our home that commemorate each loss. We dug out that baby book, and we filled it. We took photographs and we made art pieces. We acknowledged that we create the meaning that their short lives have for us. And we take this day-to-day sense of gratitude with us into parenting. We were already parents.

Now, as I am parenting a living child, I remind myself daily to consider the challenges and the joys within a larger frame. Things still get hard—not as hard as in the darkest moments—but hard nonetheless.

I take a moment every day to visit our small memorials, like the photo below, to remind myself why I am doing this and what it means for me, and for our son. And I am able to move forward from there.

 

A photo taken during the memorial of one of the babies Marissa miscarried.

A photo taken on Coronado Island during the memorial of one of the babies Marissa miscarried.

 

5. You Have A Voice (And A Responsibility To Use It)

And, finally, the last and one of the most important lessons that I learned was that I have a voice. And I have a responsibility to use it. Before infertility, I was the definition of soft-spoken, even though I am an artist. People even questioned if I would succeed as a teacher because my voice was so soft! I scoffed at them because I saw myself as strong and as plucky! I have struggled to conjure up that image of myself when I feel anything but. But, I could not stand by during our journey. I could not be silenced. I needed to speak out, and to share, and to connect. I began in a small way, by making art about my feelings about our experiences.

One of the first pieces of art that Marissa made around the experience of infertility.

One of the first pieces of art that Marissa made around the experience of infertility.

It was a safe way for me to open up the conversation, and to begin to share. The infertility community nourished this voice, and pushed me to use it. Being a part of Advocacy Day, being a part of the ART of Infertility, being a part of my support group—they all provide me with a sense of purpose greater than myself. Knowing my voice has helped me to overcome some of the worries and fears every new parent experiences, too. I know that I can and will speak out, and seek help, and know that I am not alone. And that has made all the difference. We can only end the stigma and the silence if we are willing to speak out for ourselves and to share our stories.

#startasking How does infertility impact loved ones?

Infertility doesn’t just impact the patient but their entire family and social circle as well. Family relationships can be particularly difficult to navigate after an infertility diagnosis. I asked my mother, Judy Horn, to write a blog post reflecting on how it feels to have a loved one with infertility. She shares her thoughts below. Thanks, Mom, for sharing your story.

– Elizabeth

In the late 1980s, when my daughters were small, I watched a movie on television. The story line was of a family with four daughters. As the story unfolded three of the daughters were either pregnant or had children and it was apparent that the other daughter was struggling with infertility. It was a Lifetime movie, full of drama and at the conclusion had a typical happy ending. I can remember thinking of my girls and hoping that I never had to deal with that situation. For some reason, perhaps a vague premonition of events to come, I never forgot that movie. And so today, nearly thirty years later, I am sitting at my computer trying to find the adequate words to describe what it is like to have a loved one with infertility.

kinder

A Polaroid of Judy with Elizabeth at her kindergarten registration in the early 1980s.

When my daughter Elizabeth finally told me about her struggle with infertility she was a couple of years into it. I can remember immediately thinking that this would be an easy fix. She was working with a doctor and I was pretty confident that they would find a solution and before I knew it she would be pregnant. At the time I had no idea how complicated it would become and how low the success rate is. I can remember waiting for months for information. Because of the nature of this disease and because Elizabeth was like most women dealing with infertility, we didn’t talk much about the process, so, I began searching the internet for any information I could on the subject of infertility.  When I would see or talk to her I would look for any indication that she was or was not pregnant and as the months passed the assurance I had felt before about the “easy fix” began to evaporate. I became frustrated and just wanted to do something, anything that would help, but there was nothing I could really do. At one point I began to feel guilty and wonder if in some way this was my fault, that I had done something during my pregnancy that resulted in Elizabeth’s infertility.

I often worry about saying the wrong thing, about saying something unintentionally that will be hurtful or inappropriate. There is a list of words and phrases not to say to someone dealing with infertility, but sometimes it’s difficult to remember and I know I’ve said things without thinking. When that happens, I feel so bad and I get angry with myself for not getting it right. Once the words are out, there is nothing that can take them back and never the right words to express my regret for speaking them.

I began to feel guilty and wonder if in some way this was my fault.

Eventually, three years ago Elizabeth did become pregnant. We were going away together on a weekend trip and when I stopped by to pick her up, for some reason I had a good feeling she was pregnant. She said nothing about it, but when I had to give her an injection that evening, I was even surer that I was right. The next day we went shopping and I sat while she tried on clothing and enjoyed the fashion show. The good feeling grew as I noted the number of shorts and skirts that had elastic or drawstring waists. Sadly, the good feeling would not last more than a few more hours. Elizabeth had gone for blood work that morning and received a call as we were shopping that her numbers were down and the two little ones that had implanted after IVF were no longer living. We drove back to the hotel in silence, Liz crying quietly and me struggling to concentrate on my driving as the tears blurred my vision. I spent that afternoon watching her sleep, feeling helpless and useless, knowing there was nothing to do but just be there and that seemed incredibly insignificant.

Elizabeth and Judy at Antiques Roadshow in Detroit, the day after learning of Elizabeth's miscarriage.

Elizabeth and Judy at Antiques Roadshow in Detroit, the day after learning of Elizabeth’s miscarriage.

Several months later Elizabeth had her last embryo transfer. It was unsuccessful. I have five living grandchildren that give so much happiness. I am thankful for them every day. However, I will forever be reminded of Elizabeth’s children and mourn their loss. There is a list that will never end of things that I will miss with them. I will never give them a bath or have the joy of watching them grow, run my fingers through their soft hair, tell them how much I love them or hear their sweet voices. I will always long to know what they would have looked like and I will never forget them.

There are many words I could use to describe the past five years. Just of few of them are disappointment, guilt, worry, regret, loss, love and balance. Balance because I have to balance my feelings about all of this and remember to appreciate the good things and not dwell too much on the sadness. I have much to be thankful for.

Last and most importantly, I love her so much and I am proud. I am so proud of Elizabeth and how she has taken a personal tragedy and made it into something that will help others cope with their own heartaches. In just two years ART of Infertility, an exhibit she created, has helped others tell their stories and deal with their own infertility journeys. It has grown into an organization that educates, raises awareness and provides a creative outlet and a community of support for those experiencing the effects of their own infertility disease. I will never know how many people she has touched with her work or the effect that it will have on them and the lives of others, but I am confident that this legacy she is creating will be long-lasting and a catalyst for positive change for many years to come.

#startasking What about men and infertility?

Infertility is often looked at as a disease that only affects women. In reality, infertility is caused by female factor and male factor equally at 30% each. In the balance of cases, the infertility is the result of both partners or unexplained. Even when the disease is not a direct result of issues with a male partner, infertility has a huge impact on men. Unfortunately, men’s stories are not heard as frequently.

ART of Infertility is interested in telling diverse stories of infertility, and is always honored to share the stories of men. We’re very excited to have been invited by Dr. Paul Turek of The Turek Clinic in Beverly Hills and San Francisco, to hold a pop-up art exhibit in his clinic in San Francisco on Thursday June 16th from 7 – 9 pm, in honor of Men’s Health Week. We’ll be sharing the artwork and stories of men and their families along with food and art making stations. If you’re in the area, we hope you’ll attend. In the meantime, you can learn more about male fertility and infertility from Dr. Turek here and read and listen to the personal story of Bret, an ART of IF participant in Southern California, and his family below. Bret reflects on the experience of miscarriage and trying to decide whether to continue or end treatment.  This post does contain images of children and parenting.

– Elizabeth

Bret with his son Cole, who was conceived via Inter-uterine insemination, or IUI.

Bret with his son Cole, who was conceived via Inter-uterine insemination, or IUI.

“I knew the moment the doctor came in to do the ultrasound. I saw his actions and he didn’t even have to say anything. I’ve done enough ultrasounds with him before and I kind of knew how they went and he was triple checking everything and I knew, this was not good. She didn’t want to accept it the first time and it was difficult. I kind of knew the writing was on the wall. Maybe we also approached her second pregnancy in a different way. I didn’t want to tell anybody until the end of the process. She was just so happy being pregnant and I tried to advise her, this is nobody’s business but ours. It was tough because I had that in my mind that it wasn’t going well and she was so ecstatic being pregnant. We were in two very different places at the same time. I just tried to do what I could. There was also a lot of work stuff going on at the same time so I wasn’t here for the 3 weeks when this all happened. I was at work almost he whole time so it was not a good time, at all, for anyone.”

“The only thing I can do is support her. Be there for her, a shoulder to cry on. She needs to get these emotions out so that’s what I try to do. I’m not very good at it but I try.”

Bret_004_men-and-infertility“I guess I don’t have a support, I guess I don’t. I don’t really talk to anybody about it. I have my ways that I guess I try to let things out and deal with it but I don’t talk to anybody. I like to go out in the wilderness and I usually go with a group of friends and we go backpacking or go walk up a mountain or something cool and well, last July we had our family vacation. We did a little anniversary thing and got away and we came home and I just said, I’m leaving. I’m going. I just went and walked out in the mountains by myself for about 4 days. This was about 6 weeks after the miscarriage. It helped. It wasn’t the cure I was looking for but it was helpful and that’s it and then it was back to work and back to the grind and I really haven’t dealt with it, I just try to put it behind me.”

Bret, Erica, and Cole at their home in Southern California.

Bret, Erica, and Cole at their home in Southern California.

Click on the clip below to hear audio of Bret and his wife, Erica, discussing whether to continue or end treatment.

 

 

Healing through Reading – Eight of our Favorite (In)fertility Books

Recently, Maria and I were reflecting on some of the books that have helped us at various stages in our journeys. We thought we’d share just a handful of them with you today.

Elizabeth

Maria’s Picks

empty cradle

 

Empty Cradle: Infertility in America From Colonial Times to the Present by Margaret Marsh and Wanda Ronner

Infertility around the Globe: New Thinking on Childlessness, Gender, and Reproductive Technologies edited by Marcia C. Inhorn and Frank Van Balen infertility around the globe

These were the first “academic” books that I found when I first became interested in studying infertility for graduate school I remember feeling excited that I could take all of the pain I was feeling by TTC and try to make arguments for changing the stigma that surrounds infertility. Today, as I write my dissertation on the rhetorics of infertility, I continue to rely on these authors and their arguments about the silence, shame and stigma surrounding infertility.

 

Taking Charge of your fertility

Taking Charge of Your Fertility, 10th Anniversary Edition: The Definitive Guide to Natural Birth Control, Pregnancy Achievement, and Reproductive Health

This book immediately takes me back to when I was first TTC. I had finally shared my struggle to get pregnant with my family. On a trip back to WI, my parents hosted a family dinner. At the dinner, my grandmother pulled me aside and gave me this book. She told me that a few of my relatives had also struggled to get pregnant and that this was a book that they highly recommended. I remembered feeling loved by my grandmother because of her thoughtfulness and I was reminded that it wasn’t just me that wanted to have a baby – my whole family did.

 

what he can expect

What He Can Expect When She’s Not Expecting: How to Support Your Wife, Save Your Marriage, and Conquer Infertility!

I first purchased this book about a year and a half into TTC. I was depressed, angry, and unhappy. I loved my husband but being in a marriage seemed like a constant reminder of something that we were missing out on – a baby, a family. I knew that my attitude and sadness had taken a toll on me and, importantly, my husband. I bought this book and gave it to him as an apology. He was trying to love me the best that he could, even though I didn’t know what I wanted or needed. Seeing this book today reminds me of all the trials and obstacles we faced throughout our 5 years of marriage. Today, I know that the deep love I have for my husband is due very much to ability to face infertility.

 

Elizabeth’s Picks

About What Was Lost

About What Was Lost: 20 Writers on Miscarriage, Healing, and Hope Edited by Jessica Berger Gross

Although only one of the stories in this book deals specifically with infertility, reading it was essential to me beginning to process the grief around my own miscarriage. I had put off dealing with my emotions about losing my pregnancy because I was still dealing with the trauma from the emergency surgery that was required after complications from my egg retrieval caused ovarian torsion and internal bleeding. As I read the stories of other women through the essays in this book, I thought of my own story and how I could interpret my experience and make sense of what had happened to me.

 

The Baby Book

The Baby Book by Robin Silbergleid    

There’s something just so incredibly powerful about the experience of infertility expressed through the format of poetry. For me, sitting down with this book creates a quiet space to reflect on my own journey, and it has helped me come to terms with my diagnosis and how it’s made me who I am today.

 

 

 

 

Infertility and the Creative Spirit

Infertility and the Creative Spirit by Roxane Head Dinkin and Robert J. Dinkin

One of the themes that I’ve been interested in exploring through ART of Infertility is the many ways that we can contribute to our communities and leave legacies without having children.  I love this book because it explores the ways that seven prominent women in history found creative outlets for their journeys, impacting the world we live in today.

 

 

 

Silent Sorority

Silent Sorority: A (Barren) Woman Gets Busy, Angry, Lost and Found by Pamela Mahoney Tsigdinos

While those of us with an infertility diagnosis all have our own unique stories, we experience the same kinds of emotions. I read this book quite early in my journey and felt I had truly found someone who understood me. Pamela was speaking my language! I wanted to make it required reading for all of my friends and family so they would understand what I was going through.