Top 5 Ways to Advocate (While Not at Advocacy Day)

This is the first year, The ART of Infertility will not be at Advocacy Day (which is today)! However, despite our absence, it does not mean our advocacy efforts are mute. Here are 5 easy ways to advocate for infertility and family-building rights.

Maria and Elizabeth at Advocacy Day in 2016 at the Capital.

  1. Call Your Congressional Representatives about National Issues Impacting Family-Building. Here is a list that RESOLVE: The National Infertility Association will be tracking.  You can also utilize their easy 3-step instructional with a script to assist you.
  2. Get To Know Your Local/State Bills That Impact Family-Building. Here is a list for you to consult.
  3. Get to Know How Your Employer Supports Alternative Family-Building. You can request insurance coverage and improve access to care from your employer by downloading and filling out this letter. 
  4. Ask Your OB/GYN, Reproductive Endocrinologist, and Urologist to Get Involved on Issues 1-3. Share with your care provider more information on all the issues that impact family-build!
  5. Use Your Voice and Tell Your Story to Your Reps, Family, and Friends. Remember, you are not alone! 1 in 8 couples struggle with building their family around the U.S. If you are interested in sharing your story, you can do that with us here.

Join us in pledging to take these 5 actions throughout this coming year, until we meet again at Advocacy Day 2019!

Experiencing Infertility as a Woman of Color: An Asian American Perspective

When I started working with The ART of Infertility organization, I knew very little about infertility and even less about how it affected women of color. As a black woman I wanted to change this, confront my own ignorance and attempt to represent the voice of marginalized women within a marginalized topic. But I wasn’t exactly sure how. When I read stories from occasional anthologies or on my Facebook newsfeed (no doubt due to algorithms hard at work in my Google searches about infertility), I repeatedly found that the people described were white women or white couples who were pursuing medical treatment options.

ART of Infertility intern, Juliette.

While I strongly agree with Audre Lorde in her claim that “there is no hierarchy of oppression,” I firmly believe that representation will always matter. Infertility affects people of color and our storytelling should create a space to expose and discuss these stories. Where was the discussion and aid for people who looked like me? For people who couldn’t afford medical treatment options or had no community to fall back on for support? Where were the women of color in the narrative of infertility, and what were their stories?

My questions began to get answered the day I got a call from Elizabeth, who wanted to see if I would be interested in conducting an interview with the amazing Annie Kuo, an Asian American woman who resides in Seattle, Washington. I jumped at the opportunity.

Annie is a mother to a six-and-a-half-year-old daughter, an activist that trains RESOLVE advocates to rally for family-building legislation on Capitol Hill, and a great source of information on the different options for women dealing with infertility. She’s hosted a RESOLVE support group for three years and done research on third party reproduction, adoption, foster care, and egg freezing.  

The following is a brief excerpt from a conversation I had with Annie focusing on how race affected her journey in the world of infertility. – Juliette


Juliette: As a woman of color, have you been able to get the quality of care you deserve? Have you ever felt like you’ve been denied certain things because of your ethnic identity?

Annie:  I haven’t personally noticed any difference in the level of care. But I am American who is the child of immigrants. I speak fluent English and live in a very progressive major city on the West Coast. I do know, however, that cultural factors impact people of color in terms of infertility awareness and the right time to consult medical personnel. For example, Asian Americans are less likely to seek medical advice within two years [of not conceiving] which wastes precious time. Due to the denial of their situation or distrust of a medical professional, they often will consult a friend or family member instead. If my Asian American sisters who are suffering silently can feel a closer identification with me when I speak about infertility, that’s worth speaking up for. One reason I’ve been so willing to tell my story is because I feel like it helps remove some of this social shame around something that affects a lot of people.

Annie Kuo, an ambassador and family-building advocate with RESOLVE: The National Infertility Association.

I’ve heard women of color in support groups talk about fertility stereotypes that weigh upon them, the expectation they face if they don’t have their desired family size, the shame that they feel. There’s a cultural stereotype of Latino and African Americans that they’re very fertile people, so there’s an extra stigma (and lack of community understanding) within certain communities of color about infertility. A lot of what we’re doing is a movement; it’s a movement to remove some of that shame and stigma.  

When we’re out there on Advocacy Day to help Americans struggling to build their family, that’s fighting for everybody. For the people who have money to afford IVF, or at least take out loans to do it, but also for the people with infertility across the socioeconomic spectrum who pursue family-building options through means that cost less money—like foster care.

According to the National Institutes of Health, infertility affects 1 in 6 people. It’s an equal opportunity disease. It doesn’t care what race, color, or class someone is. It strikes people at random. The lower income folks, which let’s face it, do include people of color, struggle to build their families too. They can’t always afford IVF… a lot of times they can’t. These are the ones we fight for on family-building legislation around foster care, because often they will turn to foster care to expand their families. I want to get adoption tax credit refundability on Capitol Hill so people of color who are fostering to adopt have the option of adopting more than one child into their home, many of whom are siblings. There is a highly disproportionate number of foster children who have siblings.

Annie, with other Washington state advocates, at the 2016 Advocacy Day hosted by RESOLVE: The National Infertility Association.

In regards to third party reproduction, I definitely think there is an issue in finding the right match for you. It’s limited by who is in the donor pool. A couple years ago, our support group took a tour of the local sperm bank. There was an Indian American woman in our group and at the time, only one Indian sperm donor available. She wanted an Indian donor and that was her only choice at that bank.  In the Asian American community there are fewer women who are willing to donate their eggs, so there are fewer choices. Women even get recruited from Asian countries to donate their eggs because intended parents want to find the right match. When there are limited options, recruiting donors outside of North America expands the pool selection. Asian egg donors are paid higher in some places as well.

J: Do you think this lack of diversity within donor pool is because so many people don’t know the real scale of infertility in this country? Is it possibly a money factor?  Why aren’t there more in your opinion?

A: I think there’s a combination of factors, including lack of awareness about ways to help and that there is a need in general that struggles to be met. Part of it is stigma about giving up one’s own genetic material for pay. It’s almost looked down upon, like you sold out, gave up your gametes for money. It can be perceived as shameful to use it on the side of the patient and shameful to give it on the side of the donor. In India using a gamete donor is not mentioned. Often, donor recipients don’t even tell their relatives. Honestly, I think some of the gamete providers, I’m talking sperm and egg banks, they’re also not proactively going after donors of color. They’re not prioritizing this… I don’t know, maybe it’s some tall WASP’y guy making the decisions and they don’t have the frame of reference to get that this is an issue.

J: Do you think that art has a healing capability and a place in this conversation about infertility? Can it be used to represent a marginalized community and bring them into this conversation?

A: I think art is a wonderful way for expression and public consumption. A lot of people can see through creative forms like film, artifacts, and visual art what they are feeling inside. Art and emotion, I feel, are cosmically linked. There’s something spiritual about it. Something that can express what other forms don’t have the power to. I would encourage more people of color to get involved with having a creative outlet for what they are experiencing or suffering, whether that is journaling or creating a vision board or taking brush to canvas. Art, film, and writing are often healing ways to create when we may be limited in our creation of life, speaking reproductively. I think it’s a wonderful outlet to have and I think more people should consider pursuing art as an outlet. Not only to raise awareness and contribute to an exhibit, but to heal.  

Annie, with Maria and Elizabeth at The ART of Infertility Exhibit Opening in Seattle in April 2017.

To read more about Annie’s story, she shares her perspective on living with infertility as an Asian American in the following articles:


My conversation with Annie gave me a glimpse at a different side of infertility, one where the women not only battle their bodies but must also combat communal stigma, lack of donor options, and lack of representation. I think my biggest take away, one that I find myself coming to fairly often in my research on infertility, is that these things need to be talked about with more frequency. Annie’s insight, candor, and willingness to share her story to help other women of color dealing with IF so they don’t have to face what they’re going through alone is not only inspiring, it’s necessary. And it needs to happen more.   

 

Next week, we will feature Madge’s story and experience of navigating infertility as a black woman. Look for it soon!

Sisterly Reflections on Mother’s Day

May 13th is Mother’s Day. In my family, it is also our Mom’s birthday. Last week was a string of texts between my sisters and I discussion how we were going to celebrate my mom’s birthday this year. Realizing that my Mom’s birthday fell simultaneously on Mother’s Day, the question of how we were going to celebrate both events emerged. These conversations made me think about the awkwardness of navigating “celebrating your mom” while also being sensitive and respectful of those in your family without kids.

Maria with her four sisters on a family vacation to Wyoming.

Ever since I was diagnosed with infertility 7 years ago, this feeling of awkwardness has grown. It’s hard to show up at the combo “Mother’s Day and Mom’s Birthday” party and greet everyone with a smile and say “Happy Mother’s Day”. But I do. Mainly because this day isn’t about me — it’s about my mom. I do this also because I come from a big family – 4 sisters and 1 brother. For my sisters, Mother’s Day is still a big deal. It is something they enjoy celebrating with my mom. They also know, though, that Mother’s Day is a difficult day for me. Given that, this year for an ART of Infertility Mother’s Day blog post, I asked a two of my sisters to reflect on what Mother’s Day means to them now as they navigate how to celebrate my mom while also being sensitive to me and my infertility. – Maria

Reflections from Kate:

It’s Mother’s Day and even though I don’t have kids, I find myself thinking of what the day would look like if I did. Breakfast in bed, crisp white and blush roses on the kitchen table and little fingerprint cards lining the refrigerator. I imagine no cooking, no laundry and sleeping in until 7:30 am. I also think of my friends with kids and how they amaze me with their ability to juggle nursing schedules and daycare pickups while meeting deadlines at work and finishing PhDs. I think of my mom, a working mother of six kids, who tirelessly manages the needs of children ranging from thirteen to thirty one. I think of the individuals I know who froze their eggs due to the onset of cancer treatments. I think of the mothers who have lost children and the children who have lost their mothers. I think of my friends who suffered miscarriages and struggled to get pregnant.  And I think of my sister Maria, whose personal experience with infertility has transformed my impression of motherhood.

Maria, with her sisters and mom at Kate’s wedding.

Maria and I are fourteen months apart. If you do the math, that means that my mom was pregnant with me when Maria was just 5 months old. This made us inherently close as siblings, but distinctly unique in personalities. Nonetheless, I remember wanting to be just like Maria as a kid and begged my mom to let me go to preschool when Maria started kindergarten. I also remember Maria telling me what to do as a kid, and me being happily compliant. She enlisted me to paint the kitchen in red finger paint while my mom was violently ill with the flu, she convinced me to play the “ugly” Barbie when we played dolls, and she insisted that I “be her assistant” whenever we ran our imaginary McKay’s Bar and Cafe.

As much as I wanted to be just like my sister, I could never compete with Maria’s clear ambition and punctual nature. Maria always had timeliness in her deliverables and a goal driven mentality to her thoughts. In high school, she ran the neighborhood carpool and if you weren’t in the car at exactly at 3:15 pm, she would leave school without you.  At home, she completed all of her homework from 3:45 pm – 4:30 pm in order to make her closing shift at the local hardware store. In college, Maria was the only person I knew who worked from 9 am – 5 pm in the library so that she could cook, watch tv, and relax at night.

So when I found out that Maria and her husband Kevin had been trying to get pregnant for over a year without success, I was surprised. I imagined Maria applied the same punctuality and determination to getting pregnant as she had throughout other areas of her life. But as the years passed, the objective of becoming a mother and having a child was confronted with the diagnosis of infertility.

We as sisters rarely talk about Maria’s experience with infertility, but this Fall it came into focus while we were together in Philadelphia. Maria suggested that my sisters and mom come see the ART of Infertility exhibit she had curated and celebrate my 30th birthday. Over lunch and plates of dumplings and dim sum, my sister threw out a question none of us were ready to answer. Some may say, she has a gift of being direct.  “Do you think my infertility has influenced your decisions to have kids?” Silence.

I watched  one of my sisters choke on her pork bun as the other burnt her tongue on jasmine tea. Our eyes met in silent desperation as we waited for one of us to speak. This moment of hesitation was resolved by our own mother’s intervention. We didn’t talk much about this moment until after we returned home from the weekend. Motherhood is a personal decision and that question felt thrust upon us. Choosing when or even if we want to be mothers is not an open conversation in my family.

Growing up in an Irish-Catholic family of six, it has been an assumption and an actual vow made within the marriage ceremony to welcome children into your life. I know that for myself and my sisters we do eventually want to have children.  Maria’s loaded question called us to consider the influence of her infertility on our personal decisions. While it made all of us uncomfortable to discuss in public, I’ll do my best to honestly answer it now.

Maria’s  infertility has influenced my ability to understand the complexities in the very definition of “motherhood.” Before Maria was open about her struggle to get pregnant and the pain and stress it brought to her life and marriage, I had a very narrow framework on how I thought about motherhood. Growing up in a seemingly fertile family made it difficult to identify with the  hardships that so many women undergo to become pregnant. Yet, in witnessing  Maria’s journey  and hearing the stories of couples though the Art of Infertility, I have adjusted my assumptions around motherhood.  It has afforded me much needed sensitivity and compassion when having open conversations with friends who walk similar, difficult paths.

I can’t say that Maria’s infertility has directly influenced my decision to become a mom, but it has shaped how I think about embracing motherhood in the future. Seeing Maria apply her dedication and purpose to build a supportive community for couples struggling with infertility is inspiring. Watching her walk at MSU as a PhD candidate made the kindergarten Kate want to be in school too. Witnessing the reaction of couples at her curated art exhibit in Philadelphia made me proud of how she has channeled her creativity and inspired others to come forth with their stories.

Maria with her sister Julia, Kate, and her mom.

In light of the struggles to become a mom, Maria has continued to “mother” us as we embark upon new chapters in our lives. She’s been the support as we have moved to new cities, taken new jobs and opportunities, welcomed new brother-in-laws and said goodbye to family members who have passed. She has reminded us that motherhood is not an entitlement, but a true gift worthy of celebration. I now have a broader sensitivity to the struggles of those with infertility, those who have suffered loss as a mother, and new mothers in need of postpartum care.

Maria’s experience has also reminded me that there is no set timeline to motherhood. As my thirtieth birthday approached this year, I could almost feel my biological time clock start ticking. While my sister’s struggle with infertility presents looming questions of my own ability to have kids, I recognize that there are other ways I can be motherly within my life.

By honoring my mom, my aunts and grandmother, I celebrate the gift of life that they continue to nourish. In visiting new moms, I can help tend to postpartum needs. In listening to a friend after her most recent miscarriage or encouraging a mom-to-be with an unexpected pregnancy, I can lend my comfort and support.

As I begin embrace the idea of becoming a mom, I know that I will need Maria’s recognition and support. I also acknowledge that our dialogue around motherhood will shift if I do become pregnant. That’s why it was so hard to give Maria a concrete answer when she asked us about the influence of her infertility this Fall. Her inability to become pregnant has not adjusted my desire to become a mom, but it has required me to deconstruct my concept of motherhood and embrace a framework that is much more inclusive, honest and forthcoming about the challenges of fertility. Maria has forced me to conceive of motherhood on new terms and in a new spectrum. And if I’m lucky to celebrate Mother’s Day with my own kids, I can only hope that Maria will be there to help mother me through all the pains and celebrations that come along with it.

Reflections from Martha:

Mother’s Day is here again. Although I am not a parent myself, this holiday is one of great significance to my family members and me. Not only is it a time to appreciate those women who are closest to us, but also a time to be reflective and humble in the midst of those who face infertility.

Maria’s mom and Martha viewing an ART of Infertility exhibit.

I can recall spending Mother’s Day as a girl surrounded by friends and family. This day usually aligns with my mother’s birthday, so we would frequently host many individuals that day and celebrate Mom, aunties, grandmothers, etc.

When Maria got married, people frequently asked her “…so when are you going to have a baby?” As a newlywed, she would shrug and smile, assuring them it would be soon. As months turned to years, that optimism faded and Maria changed her tune. The smile and assurance switched to an uncomfortable laugh and the answer, “I don’t know.” Soon, we learned that she and Kevin were struggling with infertility.

As an outsider to their relationship, I do not understand all that they have gone through. I’ll admit that to this day, I still do not fully understand. I have never walked a mile in their shoes. I don’t know the words spoken behind closed doors. I don’t know the feelings of loss for something you’ve never held. I don’t know their sadness. I don’t know their pain. But, I do know it is valid. Their pain is real.

One of the greatest things I struggle with as being a sister to someone who has been diagnosed as infertile is learning how to comfort her. It is challenging to gauge if I am being supportive in an effective manner. Every Mother’s Day and Father’s Day, I envision myself in Maria and Kevin’s shoes. I wonder what it must feel like to experience an inescapable sense of stimuli centered around fertility. Whether you’re walking through the grocery store or scrolling through your phone, those days are filled with moments of joyful expression from mothers and fathers everywhere. There’s no place to hide: no way to retreat. As her sister, all I can do is reach out. I send a text or give a call, expressing my love for them and sharing with them that I’m thinking of them that day.

Infertility can cause people to close their doors to the outside world and shut themselves off from loved ones who don’t understand the pain, but we need to understand. As a family member, I’m requesting two things: patience and education. Give me what I need to know to be there for you. There’s no manual that comes with this position. At times, I live in fear of putting my foot in my mouth.

I cannot relate to feeling branded “infertile” on Mother’s Day. It must be gut wrenching to look around you and feel teased, taunted, and angered by what others have that you continue to lack. To see something you’ve wanted for so long and something you treasure so deeply and yet, it’s the one thing that you cannot control. That frustration and sense of exclusion on that day must feel awful.

In light of my sister’s infertility, I still choose to celebrate Mother’s Day by taking a moment to honor the women I love. I see it as a holiday that offers a platform for thanking the all the women (not just biological mothers) who have given themselves to me unconditionally. After all, that’s what motherhood is: an act of undying, devotional love. It is a day to be inspired by those who have come before me and appreciate those who walk alongside me.

I’m proud that Maria continues to transform her mourning into an outlet of creativity that inspires others. My hope is that on Mother’s Day we all take a second recognize the strength of the women in our lives and stand in solidarity throughout the journey, not only as mothers, but also as sisters, granddaughters, and friends.

 

 

5 Ways A Barren Bestie Can Help Navigate Infertility

When you are first diagnosed with infertility, you can feel alone. You can feel like the world is against you. Like all of your future plans have suddenly been erased. It feels unfair and you can get angry. Here is the thing: this is normal. Infertility sucks. #NIAW helps make infertility feel a little bit less isolating. But this is just a week. How do you get through the other 51? For us, while some weeks can be great and others hard, really hard (take for example the upcoming Mother’s Day weekend), to get us through we rely on our #barrenbestie. This #NIAW we have decided to #flipthescript and talk about the friends who have gotten us through and are still on this crazy rollercoaster that is infertility

Maria:
Probably a year ago, Liz and I were talking about the importance our friendship has had on our infertility journey. For those who do not know, Liz and I met in 2014 at RESOLVE’s Advocacy Day. We were both from the state of Michigan and running support groups but had never met. As we spent the day together, we felt a friendship forming and not a forced friendship. Talking to Liz was easy. I’m the oldest in my family and never had a close “big” sister. But in the months following Advocacy Day it was feeling as if Liz could possibly fill this roll.

What I didn’t realize or anticipate was that I was actually not looking for “a big sister” figure. I was looking for and needing an infertility friend. Someone who wasn’t my partner going through the exact same journey, but someone who had their own story and their own journey that they were trying to figure out. Liz and I became that for each other, especially as we started collaborating together and creating what is this – The ART of Infertility.

In D.C.

While infertility no doubt sucks, I can’t imagine not going through this because despite all of the pain – I got a great and amazing person in my life: Liz. When I talk about my infertility story, it is hard to not include her in it. My husband, Kevin, frequently jokes that she is “the sister wife” to our marriage. In many ways, she is and she has helped me (and my marriage) grow stronger. My hope this #NIAW is that we don’t stop talking about infertility the rest of the year, but that we find the friends and support systems that can help us continue the conversation and #flipthescript that infertility matters ALL the time, not just once a year. My barren bestie, Liz, has helped me realize that and is helping us create change in this community that has been too often forgotten.

Elizabeth:
I’m not a woman who had always envisioned being a mother. I was always more interested in forging a path of my own, of not following the expectations of society. I imagined finding love and imagined getting married. Sure, maybe we would decide to have children but it wasn’t first and foremost. Until it was. Once I decided I wanted to be a mother, I wanted it fiercely. The trouble was, the rest of my body wasn’t in line with my head and my heart.

There’s that period of time, early on in an infertility diagnosis, when you haven’t found your tribe yet. You’re having a hard enough time trying to make sense of the cards you’ve been dealt, let alone trying to explain the game to others. You feel like your situation, your infertility, isn’t severe enough to reach out to find other people in similar situations because certainly they’ve had it worse. Their diagnosis is more severe, they’ve tried treatment and it failed, whatever the reason is, you find it. I’m here to tell you to that the sooner you find your people, the more manageable your life will become. Infertility friends, barren besties, are a lifeline.

Maria has been that lifeline for me. As she stated above, we found a quick and easy connection. It’s hard to believe that just four years ago, we hadn’t yet met. It’s crazy to me to think of life before her and it’s both exciting, and sometimes scary, to think about what the future might hold. We’ve both been in a similar stage of our journeys for the entire time we’ve known each other. Our relationship has been a safe space for both of us. But, like with many friends through infertility, there may come a time when maintaining a friendship will be more difficult. We’ve grown and challenged each other. We’ve built this organization together, and, together, we’ve accomplished more advocacy work in a short amount of time than I ever imagined possible.

Elizabeth and Maria and speaking at the Utah Infertility Resource Center’s fundraising gala in March, 2018. Photo by Steven Vargo.

My hope is that through this work, and the work that so many others are doing, it won’t be so difficult for those who come after us to find themselves diagnosed with infertility. The silence and stigma will have been lifted and they’ll already know those in their community they can turn to for understanding. That they won’t have to worry about access to care because insurance coverage for infertility treatment will be there for them if they choose to go that route. It’s also my hope that there will be better support and mental health resources while going through treatment and for people who get through treatment without becoming parents, or who choose not to undergo treatment at all. To make sure this happens, we all need to remember that infertility awareness isn’t about one week in April, but is year-long.

I’m so grateful for Maria, and my other barren besties, who have helped me weather this storm. Unlike the early years of my diagnosis, life is mainly good and happy these days. Not because the fact that I’m not a parent is any easier to endure, because it’s not, but because I have them in my life.

5 Ways A Barren Bestie Can Help Navigate Infertility

  1. Feel good about you and your body!
    It can be hard to separate yourself from a body that is failing you. Your barren bestie will remind you that you are more than your broken parts, and encourage you to practice self-care. So, grab a friend and treat yo’self! Go shopping! Get a massage! Go out for a nice dinner! Practice yoga!
  2. Talk about What Sucks in Life (even if it isn’t all about infertility)
    Liz and Maria frequently joke that they talk more to each other than their husbands (shh)!! But we do, with boundaries of course. So on the weekends we tend to take a break. During the week, we have “scheduled times” normally in the morning on the way to work and on the drive home. While the content of these talks can range from ART of IF “to do lists” to our “real” jobs to the niece or nephews birthday party that is happening over the weekend, these talks help us process how we get through the daily challenges and triggers that come with IF. No one understands like a barren bestie does. It also helps us not overwhelm or burden our partners.
  3. Gain Perspective about What Matters
    Okay, so we are lucky that through this project we have been invited to travel, literally the world. From Paris to Seattle we have made time to experience a variety of different places together and hear so many inspiring infertility stories. Traveling has helped us gain perspective on what we want as a priority in our life and helped us realize the impact of sharing your story.

    In France, fall of 2016.

    4. Encourage You to Share Your Story
    A good friend knows you even when you are trying to not know yourself. Sometimes it can be tiring and hard to share your story. Barren besties know this. They also know that sometimes sharing your story can help you grow stronger. Practice talking about infertility with your friend, and slowly, with their help, you can start to share it with strangers –  suddenly you may find yourself as an infertility advocate!5. Learn to Find Silver Linings, even during the worst of times
    We all have our own infertility story. In nearly all of them, there are ups and downs and    unexpected twists and turns. Figure out what your silver lining is, what lesson was learned. Maybe it won’t get you closer to your family-building goal, but you may be able to find unexpected joy in areas. For Liz and Maria – this is certainly the case. Without infertility, we would never know each other. We would never grow to be strong women, using our  voices  to hopefully create change and talk about all the challenges that come with infertility. Despite it all, we don’t regret being infertile. It has revealed too many silver linings in our lives.

 

The Gift of Infertility

Today’s guest post is from Sarah Ivy and Juli Westcott, DC. Sarah and Juli are Barren Besties turned founders of the non-profit, Braving Infertility Together. Thanks, Sarah and Juli, for sharing your story. 

“Thank you all for coming to dinner tonight. It was great getting to meet you. If any of you would like someone to pray with you before you leave, I’d be happy to do that.”

“Hi, my name is Juli. I could really use some prayers. I just found out that my IVF transfer worked and I am pregnant, but I’m so scared something will happen.”

“Hi, Juli, I’m Sarah. Let’s pray right now.”

And so it began. Two women from two different sides of the infertility spectrum, both desperately wanting to become mothers, and wanting to feel like they were not alone in this journey. So, how did things go from acquaintances at a dinner to a true, deep friendship?

Sarah:
A little while after Juli became pregnant with her daughter, my husband and I had the opportunity to do an IVF transfer with a pair of adopted embryos. We were thrilled to find out that we were also pregnant! But unfortunately, when we went in for our sonogram at week nine, there was no heartbeat.

Juli:
At that time,  I was 12 or 13 weeks pregnant, and heartbroken for my friend. I debated on what to do, because I figured the last thing you want to see when you have just lost your baby is a pregnant lady, but I knew I needed to see her. I put on a loose sundress, bought a beautiful orchid plant, and drove down to her house.

Sarah:
This was the turning point in our relationship. Her bravery in that moment, in being afraid to come but doing it anyway, and my vulnerability in loss sparked a deep, authentic friendship that has only continued to grow.

Sarah’s loss was the summer of 2015, and Juli’s daughter, Cady Joy, was born in December. A few weeks after her birth, we decided to get our husbands together for dinner at the same restaurant where we met back in April. When our husbands met, we realized how similar they are – both came from a construction background, and both were fiercely protective husbands that had longed to be fathers. There was an instant connection, and that night brought us all closer together.

Juli and Sarah with their families at their book release party

Juli:
A few short weeks after our first family dinner, I remember sitting on the couch one night breastfeeding Cady, and all of a sudden my phone rang — it was Sarah. Now if you know Sarah, she is much more more likely to message or text than call, so I thought it was a bit strange and answered.

Sarah:
I asked, “Hey, does Cady need a friend?”

Juli:
I thought it was a strange question so, I said, “Sure… you can be her friend?” Not having any idea what she was trying to say.

Sarah and her husband had miraculously become pregnant naturally! We were both beyond ecstatic for this new little life, and secretly hoped that maybe it could be a girl so that our daughters could be friends. By the grace of God, we found out a few weeks later that it WAS going to be a girl!

Juli:
One of my favorite pictures we have together is a candid photo of us at Sarah’s Gender Reveal party. We are sitting next to each other smiling, and I am holding Cady who has her hand on Sarah’s tummy and the biggest smile on her face! It was just a sign of the sweet relationship these two girls would soon share.

Left to right, Sarah, Cady, and Juli at Sarah’s gender reveal party

In June of 2016, we had an amazing opportunity to go to a writing conference and do something we had both always dreamed of doing — become published authors. Our plan was to write books to share the stories of our journeys to our daughters, but God had a different plan. By the end of the conference, not only did we know that we were supposed to write a book about our support group (which had continued to meet and grow since that first dinner), but we also felt very strongly that we needed to make the group “official” and file our paperwork to become a non-profit organization, Braving Infertility Together.

Where are we today? Our group has grown from 15 women who met for dinner to over 450 women and their families in the DFW area, as well as over 100 women worldwide in our online support groups. For us personally…

Sarah:
We are at a point where we are no longer seeking medical intervention to grow our family. We are praying and trusting that if God wants us to have more children, we will, and if not, we will treasure the precious gift he has already given us in Charlotte.

Juli:
For us, it has been an emotional road the past year. After much discussion, we decided to do another IVF transfer back in August of 2017, and were so excited to find that we were pregnant again. Unfortunately, a few short weeks later, we discovered that the pregnancy was ectopic, and we lost our sweet baby in an emergency surgery to remove the tube where it had implanted. It took me several months and countless tears and prayers to have the courage to go through another transfer, but in February of this year (with my mom, Sarah, and Ray sitting in the waiting room), we did. By the grace of God, we are expecting our sweet little miracle in October of this year.

Through our friendship and growing non-profit, we have really had the opportunity to live life together. We have brought people into our homes, encouraged people to love each other, and walked with others through some incredibly dark moments, while at the same time loving and encouraging each other.

Sarah:
Juli is the most beautiful friend inside and out. If I had to pick three things about her that I would want the world to know, I would have to start with her hugs. That may sound silly, but I swear her arms wrapped around me and her chin on my head (she is nearly a foot taller than me) give me strength and security, and remind me that I have a BRAVE sister with me in all of this. The look on her face when we asked them to be Charlotte’s Godparents was only rivaled by the look on her face when she held her for the first time. Her genuine love for my daughter is so special. She prays for, loves on, and watches after CC as if she were her own. Lastly, her love for the Lord and her constant encouragement for my relationship with God and reminders of His truths are the greatest gift.

Juli and Sarah at Sarah’s 80s themed, rollerskating 35th birthday party.

Juli:
It’s hard to pick only three things I love about Sarah! She is so creative — she can make something beautiful out of literally anything, and it’s effortless. She is also an incredible communicator. I have so much pride and joy getting to watch her do what she was born to do. She speaks and teaches with such grace and eloquence. I have never seen someone so comfortable in front of an audience! Most of all, I absolutely love her heart. Sarah is one of the most genuinely caring and compassionate people I have ever met. She cares deeply, ferociously, and completely for those she brings into her life, and will stop at nothing to help anyone she has the power to help. She is an incredible example to me and so many others.

How has sharing the journey of infertility changed our lives? In our deepest darkest moments, we always know that we are the only ones who truly get how the other feels. We have a relationship built on incredible trust and honesty, and we have supported each other through so many of life’s challenges, in infertility and beyond.

There have been a few times where we have discussed whether experiencing infertility has been a burden or a blessing, and without hesitation, we both agree that given the option of not going through it but having to give away everything we have gained, we would choose it again without hesitation. The life-long friendship we have developed because of this journey is truly a gift. As we look towards the future of not only our families, but our organization, living without each other is not an option.

We are BRAVE because of each other, and can now help others be BRAVE in their journeys. THIS is the truest gift of infertility.

For more information about Braving Infertility Together, visit www.bravingit.org or, find them on Facebook or Instagram @Braving Infertility Together.

Parallel Selves

#BarrenBesties M’Recia and Brooke collaborated to create the piece we’re sharing today, which we displayed in “Arches in Perspective” in Salt Lake City earlier this year. Be sure to click on the audio at the bottom to hear Brooke talk more about what went into creating the piece.

Parallel Selves
M’Recia Seegmiller and Brooke Walrath
mixed media – photography, graphic design, poetry

I wanted to use my idea of creating images that show what longing for a child feels like and I asked my friend and colleague Brooke to collaborate with me. I told her about my ideas and she shared a poem she wrote with me called I Envy Myselves. I immediately loved her poem and, together, we felt inspired to create a photography piece to go with her poem.

 


Two College Students Connect Over IVF

by Kristen Mahan and Alaina Schepp

Kristen:

When I asked my roommate and friend since freshman year, Alaina, to come to Reproductive Writes – an ART of Infertility event – I had no idea how our friendship would change. Sitting at the workshop with other participants talking about their personal experiences with infertility, I suddenly found Alaina opening up. She shared with the group that she — herself — was created from IVF. Not only that, all of her siblings were also created using IVF.

Kristen, left, and Alaina, right

Sitting there, hearing her story, I was surprised that this had never come up before! Alaina had always been close to her family, she would frequently go home to help out or even just hang out with her siblings and parents. I never really understood why, until she talked about how hard it was for her parents to get pregnant.

Walking back from Reproductive Writes that evening, Alaina shared with me how her parents  decided to undergo IVF after her dad found out he was not able to have kids. Alaina was the first child to be born from their IVF cycle. Shortly after they had Alaina, and desiring a big family, they decided to go through another two rounds of IVF.

As Alaina opened up to me that night about her parents IVF story, our relationship changed for the better. We stayed up for 3+ hours chatting and crying from some of her most prominent childhood memories. Hearing her story explains it all. I cannot even imagine how hard Alaina’s childhood was and what her family went through, and is still going through. Hearing her story made me realize how strong Alaina is and I am so thankful to have such a loving, kind, and genuine friend like her.

Alaina:

Seeing the exhibit, Reflections of Reproductive Loss and Access to Care, during the Reproductive Writes event was an experience that touched very close to home. I have always been very thankful for IVF for basically giving me my entire life I have today. When my parents explained IVF to me throughout the years I never thought of it as not working, until I saw the exhibit. My understanding was that if you were infertile, most of the time IVF would work. However, seeing the artwork and the stories of others, I realize that is not the case. The process of IVF always amazed me – how it can work and how it did work for my family. However, after the exhibit I realized how thankful I am and how fortunate we were for this to work, not once but three times.

I knew going into the exhibit that I would be able to relate more to the artwork than some of the other people there.  I also felt like I could relate to the pain by seeing IVF put a financial, medical, and stressful toll on my own parents. Being as close as I am with my family, it is a dream of mine to have a big family. With my family having fertility issues and being told they would not have children, it’s a fear of mine that I could be told the exact same thing.

Baby Alaina

I thought I could turn to IVF in a worst-case scenario, but going to the exhibit and hearing everyone’s complications and deeply sad stories, makes my worries much greater.  Seeing others’ heartbreaking stories makes the fear that much more real. However, I believe everything happens for a reason and that I need to trust in the plan that is in store for me. I believe that my family is closer because of IVF. It made my parents value my life, and each of my siblings’ lives, so much more because they truly thought they would never have children of their own, and now they have three. I have IVF to thank for giving me my family and my own life. Without IVF, I wouldn’t have the people who matter most to me.

I thought the exhibit was a perfect time to open up to Kristen about being an IVF baby. IVF is not something that is talked about enough, and that was clearly verbalized throughout the conversation at the exhibit. I have always thought of Kristen as a great friend and someone I could really trust, but it just wasn’t a topic of conversation I knew how to bring up. Sharing at the exhibit that I was an IVF baby brought about more conversations afterward that really shared my feelings, my thoughts, and my journey into what made me. Kristen was the first friend I was able to deeply share that with. With Kristen interning for The ART of Infertility, I knew she was able to understand where I was coming from and could comprehend it more than any of my other friends.

Kristen, left, and Alaina, right, on the first day of their junior year at University of Wisconsin Oshkosh

Kristen and I have had many memories together. Being together the past two years, we have been there for each other during the highs and the lows. We are able to go through school together and spend late nights studying and cramming for exams. Kristen and I love having a good time and being able to spend basically everyday together.

Kristen:

I think my favorite memories of Alaina and I are just staying up late and talking about anything and everything. Alaina is extremely outgoing and talkative so our conversations are endless. She is all around the most bubbly person I know. Like with any college girl, there is usually “boy drama” which Lain and I have been each other’s rock for. We are always up front with each other and try to give our most honest input on certain situations.

Connection

Leanne Schuetz was inspired by her #BarrenBesties to create this piece, which we first exhibited during “Cradling Creativity” in Philadelphia. Leanne’s piece, “Advanced Maternal Age”, is currently on display in our exhibit “Visualizing Voices of Reproductive Loss” at the University of Wisconsin Madison, now through the end of May.

“Connection”
Artist: Leanne Schuetz
Mixed Media on 9×12 Canvas board

I was inspired by the quote that says “When you can’t look on the bright side, I will sit with you in the dark”

This piece is a tribute to the dear infertility friends I have made through out my journey.  Women who never told me that I had to cheer up, or relax but allowed me to feel my disappointments and heartbreak and said, “Me too, you are not alone.”

Connection by Leanne Schuetz

 

 

 

 

Click below to hear Leanne recite her label.

I went to Capitol Hill (for Advocacy Day) and all I got was this lousy best friend

#BarrenBesties, Brooke and Kathy, share stories of their friendship in today’s blog post. Thank you Brooke and Kathy!

Kathy, left, and Brooke, right

B: Kathy and I met on the message boards of thebump.com. We really started chatting when she was undergoing radiation therapy for her thyroid cancer. We have similar diagnoses in our marriages (minus her cancer), so we bonded really easily. She’s also freaking hilarious.

K: One of my first memories of my friendship with Brooke was flipping through a catalog (like the old school paper kind) and seeing this print of a quote- it was colorful and bright and immediately made me think of her. “In the midst of winter, I found, within me, an invincible summer.”- Albert Camus. I ordered it and awkwardly packaged it up and shipped it off to Arizona because she neeeeeeded it. I remember my husband saying you’re sending this to someone you met on the internet?? Yes. Yes I am.

B: One of our funniest moments was Kathy’s birthday gift being spoiled. At our second Advocacy Day, RESOLVE invited us to be Ambassadors and it included a full day training. Because we’re hilarious, we started calling each other Ambaaaaaaaassador in fancy British voices and it evolved into Badassador. And so for her birthday, I ordered her a custom necklace with our made up word on it. The Etsy seller posted a photo of it on social media and Kathy sent me a screen shot like “OMG LOOK.” and I’m like… “uhhh, Happy Birthday!”

K: The best things about our friendship are everything. Literally everything. I can say anything without fear of judgement. I can vent. I can complain. She relates to me in a way that is so rare to find in a friend. And the jokes. SO MANY JOKES.

B: Two years ago, one of our fellow advocates (we’ll call her Becky to protect her privacy) couldn’t make it to Advocacy Day, so we had a giant photo made of her face so she could be there “with” us. And then she ended up being able to come. We posted a selfie with it and she was like, “is that my face?” And then we died laughing.

K: I picked Brooke up at the airport with our flat friend riding shotgun and one of the greatest moments that year was the Flat and Real versions of Becky meeting each other. Flat Becky even got a photo op with RESOLVE CEO Barb Collura.

B: We have a million inside jokes. We can make each other laugh with a single word. It’s amazing to have someone who knows me so well.

We see each other – ideally – twice a year. We do Advocacy Day and then try to do a long weekend later in the year. Being from Arizona, I like to go to DC and spend time in cold weather. Two years ago, Kathy came to Arizona for my 35th birthday. Thirty-five was the age that I kind of gave myself to be the limit for freaking out about choosing childfree and pursuing treatment, so it felt like a big birthday. I wanted her with me, and she came! It was amazing. We went on a Selfie Trail because obviously.

K: We tried so hard to meet up this year- planned this great trip to Memphis and two days before- I was diagnosed with the flu. So instead of going to Graceland, she sent me a life size cardboard Elvis who now lives in my dining room. He stares out the window to freak out the neighbors. We have Amazon Primed things to each other that we never knew we always needed. I love her so much that I’ll spend 4 hours in the observation tower of the Air and Space Museum while she tracks the planes that land with an app on her phone. She gets all giddy like the little elementary school kids. We go to terrible spas and eat way too much Mediterranean food. And every single time we’re in an airport together it’s just a big ugly cry mess.

B: I heard about Advocacy Day in 2013 and it was too late to get it together to go, but we started talking about going in 2014. At some point, she invited me to stay with her, so I did what any rational person would do and booked a trip to spend an entire week in the home of a complete stranger. I didn’t even ask if she intended to turn me into a skin suit until I’d landed at Dulles.

Brooke and Kathy at Advocacy Day, 2017

K: When Brooke told me she wanted to go to Advocacy Day that very first year- It never occurred to me that we might not get along and it would be awkward having her in my house. My son, Sam, was just a few months old when she came that year. I remember being worried about if she would be uncomfortable with SO much baby everywhere. But that was all gone when she sat holding him at dinner that night. Now she is a part of his life, which I love. She sends him such thoughtful gifts. Now my 4 year old Sam asks when she is coming back and if he can take her to the trampoline park. And he always requests to see pictures of her dogs. He thinks it’s hilarious that they eat carrots as treats.

B: I never even knew she was worried about me having sad feelings about Sam. Quite honestly, it can be difficult to have a relationship with someone who was successful with infertility treatments while we’ve chosen to be childfree after infertility. I remember so vividly all the emotions of Kathy’s three IVF cycles and was so elated when she found out that the third had been successful. I love Sam deeply and it’s just never been an issue. It’s been difficult with other friends, but never with Sam.

Advocating together has been amazing. We’re both passionate about advocating for family building and ensuring that others have the options to pursue the family they want. The Capitol has become Our Place and we give Capitol themed gifts sometimes.

K: That first year when we met- it was like meeting your person and just knowing that you were going to be together forever. We spent that week laughing until we cried and I was so happy that she came to stay with me. A big part of that was experiencing our first trip to Advocacy Day together. There’s nothing quite like that feeling of empowerment that comes from the first trip to Capitol Hill. It has become just another thing that bonds us together and something we both share a passion for.

B: Well said, Biff. Love you. Mean it.

 

 

Reflections on UURAF

by Juliette Givhan, The ART of Infertility’s Undergraduate Research Intern

This past Friday, the 13th of April, I was able to participate in Michigan State University’s 18th annual University Undergraduate Research and Arts Forum. The forum, which was held at the student Union on State’s campus, was an opportunity for students to summarize the research they had conducted throughout the year and present it in front of a public audience in the format of a poster.

As I arrived at the Union to present a synopsis of the work I have done with The ART of Infertility Project I was prepared to be disappointed. UURAF, while an opportunity to present research, is also a competition… one that I was sure would be dominated by STEM majors who would expertly present posters chock full of graphs, data charts, and ground-breaking findings. I felt that my poster, which displayed art from the project and the reality of a human story that cannot be quantified in the same way that other research can, would be out of place. I didn’t know, as I was clipping my poster to the stock board I had been provided, that I would leave the room after an hour and a half of presenting my findings feeling a huge sense of accomplishment.

I left UURAF wishing I could have stayed longer. The forum provided a space where I could accomplish one of my main goals of working with this project: to spread word of the reality of infertility and to display that art can be used as a means of conveying complex emotions. The poster I presented was broken into five sections: a break down of The ART of Infertility Project and what my role within the project has been, a description of the workshop— Reproductive Writes— held on State’s campus, my own artistic response to the topic of infertility, and a small section for facts about infertility. The last and largest section of the poster was taken up by interviews I had conducted with Annie Kuo and Madge Harris-Rowland, two women of color whose stories built a commentary on representation within the world of infertility. My favorite part of participating in UURAF was being able to spread the narrative of these two women whose varied experiences presented a reality outside of the often-assumed norm of infertility solely affecting white women.

I also really enjoyed interacting with interested passerby as well as the judges who would determine the winner within my category (Humanities and Performing Arts.) Everyone that I spoke to was interested in the project and asked questions. Their eyes widened in alarm when presented with the financial reality of trying to treat infertility, of looking into adoption or egg freezing. I was sharing knowledge with people that they didn’t previously have, and that was really rewarding. I even gave my email to a woman who wanted to know if the project was still taking submissions.

Overall, I really appreciated being able to share the work not only I— but Elizabeth, Maria and Robin—had done on the project. Presenting at UURAF put my research into perspective, it let me see a reflection of the work I had done this semester—work that I am proud of and that I hope will impact those who were able to witness it and spread awareness of the reality of infertility.

We were all excited to learn that Juliette’s poster won first place in her division, Humanities and the Performing Arts. Congratulations, Juliette!