Going the Distance for Infertility Coverage – Reflections on Advocacy Day from Brooke

Posted on March 3, 2016 by admin

Today, Brooke Kingston shares why she travels 2000 miles from home to Washington, D.C. for Advocacy Day each year. Thanks, Brooke, for sharing your story!

Elizabeth

Brooke after sharing a portion of her story with ART of Infertility during our mini interview sessions before Advocacy Day, 2015.

Two years ago this May, I boarded a plane in Phoenix, Arizona destined for Dulles International Airport in Virginia, a place I’d never been. I picked up my rental car and drove to a home in Sterling, where I would be staying for the next week. I was about to meet someone I’d been online friends with for 3 years, but had never met face to face. Our plans were to get pedicures, eat good food, and spend a day in Washington, D.C. talking to members of Congress.

You’re thinking I’m crazy, right? Maybe a little.

When I think back to the leap of faith I took flying across the country, meeting (and planning to stay with) someone I’d never met and committing to walk the halls of the Capitol, I’m still a bit surprised with myself. I’m a homebody. I hate public speaking. Why would I do something like this? To explain that, I need to back up a little more.

Five years ago this summer, my husband and I were diagnosed with joint fertility issues. We were given a 2% chance of ever conceiving on our own. Having agreed ahead of time that we wouldn’t do IVF, we spent the next year coming to the decision that we would choose a childfree lifestyle as our resolution to infertility. It was the hardest choice we’ll ever make as a married couple, but we made it together and committed ourselves to each other and began to heal.

Part of my healing process is creating. I took up new crafts and converted what would have been the nursery into an office and craft room. I learned to knit and returned to painting, something I’d enjoyed in high school. I baked and decorated cookies and cakes. I dabbled in photography and sewing. My Pinterest boards grew exponentially. When our first nephew was born in the summer of 2014, I learned to quilt and made 7 quilts in as many months, gifting them with love to friends and family. I poured myself in creating to fill the void.

The fifth quilt Brooke created.

The other part of my healing process is taking action. Infertility left me feeling helpless, and then angry at that feeling of powerlessness. To face that anger, as well as to find community and support, I became involved with RESOLVE: The National Infertility Association. I started as a support group attendee shortly after our diagnosis and eventually became a group leader. I became involved in fundraising through the Arizona Walk of Hope, and eventually became the chair of the event. Later, I would become an Ambassador and assume the responsibility of being a positive face of RESOLVE in the community.

Brooke with fellow Advocacy Day attendees at the welcome reception in 2015.

In the midst of this volunteer work, I heard about Advocacy Day. In 2013, I remember posting on Facebook that I would be there in 2014. I didn’t know what all was involved, but that was my goal, and I would not fail. Those were my words: “I will not fail.” I spent the next year saving for airfare. A friend who I’d met through infertility message boards and become close with – thanks to our spectacularly matched wit and diagnoses – offered her home as my place to stay and agreed to join me at the Capitol. I was beyond excited and nervous, but on May 7^th, 2014, the day of my first Advocacy Day, I achieved the goal I’d made over a year earlier.

Brooke at Senator McCain’s office during Advocacy Day 2014.

It’s hard to describe the exact feeling of being at Advocacy Day. It’s awe-inspiring: from meeting the staff of RESOLVE, to hearing the empowering speeches of the event chairs at the morning training, to being in the Capitol building amidst the hustle and bustle of staffers and trams and security points. It’s intimidating sitting in front of a congressional staffer (most of whom were younger than me – you kind of want to ask if their parents know where they are), telling them you’re there because you’re infertile and you want their boss to support legislation that will make life better for people like you. It can be difficult to remember all the statements you carefully rehearsed and the facts about the bills you memorized when you’re nervous and your mouth feels dry and your palms are sweaty. Their political philosophy may be wildly different and you may feel like you’re talking to a wall.

But your voice is HEARD.

Whether my congressperson agrees with me or not, my voice was heard, and it was heard on behalf of 7.3 million Americans who weren’t there in that room that day. That’s an incredible sense of accomplishment. Even if they don’t agree to co-sponsor a bill, when we tell them that we’re there with a group of over 150 people from all over the country, that makes an impact. That tells them that we are a force, and that we matter. That’s the incredible feeling that drives me to attend Advocacy Day, to set aside my fear of public speaking for the greater good of my community. This May will be my third consecutive year attending, and I have no plans to quit.

Brooke and her online turned in-real-life friend getting pedicures before Advocacy Day 2015.

As for the friend I stayed with that first year, I’m doing that again, too. We’ve become the best of friends, and this is something we’re committed to doing together, along with the growing number of advocates we meet each year. Advocacy isn’t only about the message we deliver directly to congress. It’s about our community and how we foster it and make the environment better for those who can’t speak out. It’s about being with other people who understand the emotional complexity of the disease and using those emotions to drive action.

It’s about taking a leap of faith and believing that you can create a difference, start a conversation, and make things better for others.

Please consider joining Brooke at Advocacy Day in Washington, D.C. on May 11 this year. You can learn about how to get involved at resolve.org.

New Social Media Member: Danielle Bucco

Posted on February 3, 2016 by admin

I’m very excited to start my work as the new social media and communications intern. I am a senior in my last semester at Michigan State University, studying Professional Writing. I first heard about the ART of Infertility from an email that an advisor sent. When I read more about what exactly it was and did further research, I knew that I wanted to be a part of the unique experience in some way. I immediately thought it was interesting how people going through infertility issues could not only have an outlet to vent their frustrations and pain, but to also have a support group of people who are going through similar situations. As a Professional Writing major, I am also very interested in learning about people’s struggles and how they deal with and overcome those struggles.

I grew up in a small town in New Jersey, about 45 minutes from New York City; so many different types of people always surrounded me. I love getting to know their individual stories and learning more about them. This is one of the reasons that I enjoy reading so much. You are able to learn all about someone’s life, either fictional or non-fictional, which couldn’t be more exciting for me. This is one of the reasons that I hope to be a part of the book-publishing world in some way in the future. Whether it is editing books or working as a marketer for a publishing company, I would love to be able to help people get joy from reading.

Traveling is also something that I am quite passionate about. Whether it is just to a new town I have never been to before or a new country, I find that not knowing exactly what to expect can be exciting. My best college experience was my study abroad trip to London. I knew when I first came to Michigan State that I wanted to study abroad, but it was so much better then I had ever expected. Instead of being stuck in a classroom all day, my professor wanted us to go out and experience what London has to offer. We also each had internships during the 5 weeks that we were there, giving us some real world experience instead of class work.

As the social media intern, my job will be to not only help manage all the many different forms of social media that ART of Infertility uses such as Twitter and Facebook, but to also further develop some other channels that are not already in use. Throughout my internship, I hope to work on creating a Tumblr, along with creating a larger presence on our Instagram and Pinterest pages. I am looking forward to working on this and hopefully see these pages grow.

When I graduate from Michigan State, I hope to use the skills that I have learned, both in the classroom and from internships such as this one, to help people share their incredible stories with the rest of the world. I believe that art and writing are some of the best ways for people to express themselves, no matter what they are going through, and I hope that I can take that belief with me as I enter my post-college life. Being the newest member of the team, there is a lot to learn but I am excited use my love of communications and help out the rest of the team, hopefully making their lives a little bit easier.

2015 Year in Review

Posted on January 26, 2016 by admin

In January of 2014, I was gearing up for my final frozen embryo transfer and curating ART of Infertility’s first exhibit at Ella Sharp Museum in my hometown of Jackson, MI. A month later, my reproductive endocrinologist transferred a gorgeous, grade 5AA blastocyst into my uterus. Unfortunately, it didn’t implant and our final attempt at a pregnancy, at least one using our own biology, was unsuccessful.

At a time when I wanted to curl up on my couch and ignore the world outside my front door, I was forced to finish interviews, write exhibit labels, and coordinate artists dropping off artwork. I was both resentful and relieved to have something to do and had no idea then that it was just the start of a project that would bring so many amazing people into my life and save me time and again.

2015 was an amazing year for ART of Infertility. We wrapped up a large scale exhibit in Michigan in January and did 8 pop-up art exhibits across the country. We held 7 art and 3 writing workshops and presented at 3 national academic conferences. Events were held in Michigan, Iowa, New Jersey, California, Arizona, Illinois, and the District of Columbia.

Creating art at our event at Busboys and Poets in Washington, D.C. in May.

The ART of Infertility blog was launched during National Infertility Awareness Week and Maria and I have used it to share our own reflections on infertility along with stories and artwork from the project. We also welcomed 16 guest bloggers.

We conducted 39 interviews of 45 people, lobbied for infertility legislation during Advocacy Day on Capitol Hill, collaborated with Professional Writing students at Michigan State University, and hired our first intern!

Our team of Michigan delegates at Advocacy Day 2015. Left to right, Elizabeth’s mother, Judy, Elizabeth, Maria, and Maria’s husband, Kevin.

35 new artists participated in the project, contributing 94 pieces of artwork, and we now have 122 pieces of art in our permanent collection.

The Smallest Things by Leanne Schuetz. First displayed at our pop-up in Arizona, this piece is now part of our permanent collection.

We are incredibly grateful for those of you who have shared your stories through interviews and artwork and to our many volunteers and sponsors. The project would be impossible without you.

Infertility Objects by Lauree Schloss.

This year is already shaping up to be every bit as fulfilling and exciting. We have many possible projects and collaborations in the works but here are some of the items that are definitely on our calendar for 2016.

We’re working this month to digitize the art in our collection, making it more accessible to the public. We’re also getting our paperwork around and officially filing for our 501©(3) non-profit status. Next month, we’re teaming up with the University of Michigan Center for Reproductive Medicine, Author Robin Silbergleid, and the Ann Arbor District Library by holding a book reading and art and writing workshop.

We’ll be in Houston in early April to present an art workshop at an academic conference and collecting oral histories for the project while there. Of course, we will have something special planned for National Infertility Awareness Week. We are working on our schedule and hope to have an exciting line-up to share soon.

Our event in Calabasas, CA during National Infertility Awareness Week 2015. Photo by Chrystal Starr Photography.

On May 11, we’ll once again be on Capitol Hill for Advocacy Day with RESOLVE: The National Infertility Association and, in October, we’ll travel to Salt Lake City for the American Society for Reproductive Medicine’s Annual Conference and events with the Utah Infertility Resource Center.

Maria and I are excited to see what the third full year of the project brings and hope you’ll join us for the journey. We’d love to share your story through the project via your artwork or an interview. If you are interested in sharing your story, or in hosting an ART of IF exhibit or workshop in your community, please contact us. We’d love to work with you!

-Elizabeth

Water, the President, and Infertility

Posted on January 21, 2016 by admin

You’ve probably heard of the water crisis in Flint, MI. In case you haven’t, here’s the gist of it. While the city of Flint was under emergency management by order of Governor Rick Snyder in 2014, a decision was made to discontinue sourcing the city’s water from the city of Detroit.

As a cost saving measure, Flint’s water supply would instead come from the Flint River. The river water was so corrosive that it broke down the city’s lead pipes, leaching toxic levels into the Flint residents’ water. Lead poisoning in children can cause developmental delays, vomiting, hearing loss, and more. In adults, it can cause memory loss, high blood pressure, reduced sperm count, miscarriage, the list goes on. In addition to lead poisoning, an outbreak of Legionnaire’s Disease, which is possibly the result of the contaminated water supply, has killed 10 people. This is all completely horrific.

In October, Flint’s water supply was switched back and is once again sourced from Detroit. However, the damage to the pipes has been done and the water is still unsafe. It wasn’t until January 5th though, that Governor Snyder declared a State of Emergency and on January 16th, President Obama declared the situation in Flint a federal state of emergency. Obama was visiting Detroit yesterday and spoke about this disaster.

Nearly seven years into my experience with infertility, it’s rare that I have those moments that anyone with an infertility diagnosis knows well. They come out of nowhere. The hit by a truck, breath knocked out of you, heart breaking into a hundred pieces moments when someone asks you if you have children, you see a young child reach for his father’s hand, or a pregnant woman lovingly rubs her belly. I’ve come a long way in dealing with the emotions that come along with this disease. However, listening to coverage of President Obama’s speech on my local NPR station, Michigan Radio, while sitting in traffic during my commute last night, I nearly burst into tears. The reporter quoted the president and then followed up with audio from his speech, reflecting on the crisis in Flint.

“I’m very proud of what I’ve done as president, but the only job that’s more important to me is the job of father. And, I know that if I was a parent up there, I would be beside myself that my kids’ health could be at risk. That’s why over the weekend, I declared a federal emergency in Flint to send more resources on top of the assistance that we’ve already put on the ground.”

Obama went on to say that he’s designated a federal coordinator to make sure the people in Flint get what they need from their country, that he’s met with Flint’s Mayor, Karen Weaver, and told her that he’s going to have her back, and all of the people of Flint’s back, as they work their way through this terrible tragedy.

My heart broke when I heard those words. My heart is racing now, after listening to Obama’s speech again to transcribe his sentiments. The President says he’s proudest of his role as a parent, a role that millions of Americans long for, yet are unable to achieve, because they have the disease of infertility. The federal government has the city of Flint’s back, as it absolutely should, yet there is no federal mandate for health coverage for the diagnosis or treatment of infertility.

Most Americans don’t have infertility coverage and many have to pay completely out of pocket for their health expenses due to this disease, a disease that is recognized by the Centers for Disease Control and Prevention (CDC) as a public health concern. The federal government doesn’t even have the backs of veterans who are infertile as a direct result of injuries sustained in the line of duty. There is currently a Veterans Administration ban on coverage for in vitro fertilization, a procedure that could bring the dream of parenthood to thousands of veterans of war who can’t become mothers and fathers without it. Parenthood. The role which their commander in chief values above all.

The people of Flint are worried about their health, scared of what their futures might hold, or might not hold, as a result of the public health crisis of contaminated drinking water. People are outraged so they’re raising their voices and they’re being heard.

This is why I raise awareness through infertility art exhibits, art and writing workshops, and conference presentations with ART of Infertility. This is why I lobby on Capitol Hill each year on Advocacy Day for legislation that, if put into effect, will help those with the disease of infertility build their families through treatment or adoption.

11258027_10153382892881742_8366723738360121719_n

Maria and me on Advocacy Day 2015.

My infertility diagnosis affects my health and well being and alters the possibilities for my future. It makes me outraged that my loved ones and I don’t have access to the care we need to treat our disease. So, I write my members of congress, meet with them on Capitol Hill, align myself with members of the infertility community so we can support each other. I shed light on the trials of infertility through portraits and interviews of those dealing with the disease and curate exhibits of artwork created by them so the public, our insurers, and legislators can better understand why it’s important that we gain the health coverage we need.

Like the president, I’m proud of the work I have done. However, my job won’t be finished until every person who wants to be a mother, or wants to be a father, has access to the resources they need to achieve their dream.

-Elizabeth

Advocacy Day is on May 11 this year. Please join me in Washington, D.C! Click here for more info.

Infertility Greeting Cards: Hope and Comfort via the Mailbox

Posted on December 2, 2015 by admin

This is a guest blog post written by Kristy Koser who is a Licensed Professional (Clinical) Counselor. After trying nine rounds of IVF with no luck, Kristy decided to channel her frustrations into Trying to Conceive Greeting Cards in order to help herself, and others, find the right words to say. You can follow Kristy on Instagram at @ttcgreetingcards or find her work on Etsy.

As with most things in life, we have an expectation of what’s to come, at least an idea of where we imagine our life to be. I accomplished most of my personal and career goals by my late 20s, with two degrees, a thriving private practice as a couples therapist, several publications, a house, two cats, all while being married to my best friend. When it came time to think about children, I assumed starting a family would be within reach just like all the other challenging, but doable things I tackled in the years past. Much to my surprise, having children or should I say “making” children was and is much harder than we ever dreamed of. After nine rounds of IVF (and loads of medicated and IUI cycles before that), we are still in the midst of wondering what’s next, and will this ever work? We wonder if we are legitimately going insane for continuing to embark in yet another IVF round? Could this be it? Will this be it? The conundrum with IVF is that often there is always some lingering, hope, maybe it’s possibility or curiosity, whatever you want to call it, at the end of each failed round–tempting you and your doctors to tweak something and try again. Maybe now, we finally have the magic mix of suppression, estrogen, uterine receptivity and progesterone that will miraculous allow that embryo to implant. The key word here is “maybe,” a five letter word that holds all the hope and optimism. It propels you into thinking just one more injection, pill, retrieval, patch, or transfer will be it. I think we all need those “maybes” in life, it keeps us motivated, curious about what’s to come. Somehow the “maybe” brings forth hope that would otherwise get lost in the fear and the unknown.

I’ve spent years of life in the “maybes” in the hope that something new will finally emerge. I’ve fought off doubt, grief, jealously, and fear of the unknown, hoping that somewhere underneath it all I’ll find that “something” to renew my heart to try again. Infertility challenges you to face feelings on so many levels it’s often to hard to process them from day to day and depending what medication you’re on, really it’s more like hour to hour. I’ve been swallowed up in emotion and have felt paralyzed at times, not knowing how to feel or even wanting to reach out. I knew living in the black hole of infertility was not going to cure my sadness or anger, it was instead going to propel me farther from the things that really matter.

So, after sitting with all that uncertainty for years on end I decided to do something with it. I often heard friends and family say “I just don’t have the right words” or “I wish I knew what to say” as we would announce another failed cycle or another early pregnancy loss. This led me to create TTC (trying to conceive) Greeting Cards, which specifically supports those struggling through infertility. They highlight the unique struggles, medical procedures, and feelings that are often associated with infertility. They are meant to provide encouragement, hope, and comfort–just the right words for people who don’t know what to say. Creating these cards was also a way for me to process my grief from the last three years. Knowing these cards were going to be filled with love and encouragement, arriving to someone’s mailbox on one of those dark-doubt-filled days, made me feel less alone in this battle. I felt like I was doing something with all this pain and heartache. I also loved the idea of encouraging and supporting other couples going through this. It’s easy at the beginning to think you can manage infertility quietly or without help, but what soon becomes apparent is the need for others along the way. On social media (Instagram) I often share tips that I’ve learned over the last nine IVF rounds to staying positive, focused and organized through this process. I’ve even created a “cycle calendar” that people can print off at home to help organize medication, appointments, lab results, and other procedures that can often feel overwhelming. Mapping it all out and if you are really ambitious even color coding it can help to ease the panic when trying to remember numerous medications in one day. I’ve often found keeping each calendar in a special folder is helpful to compare your medication and lab results from one cycle to the next. For example, you are able to anticipate how quickly your estrogen may rise or how slowly a follicle may grow. This can help you feel more in control and be a good reminder to wait patiently on your body to show you what it’s capable to doing.

Just one of the many “trying to conceive” cards that Kristy has created.

Over the last six months I’ve created cards that highlight things like egg retrieval and the excitement of embryo transfers. I’ve also created a line of thank-you cards for the nurses, doctors and embryologists who have provided such exceptional care during your most delicate moments. These have been quite a hit with doctors and embryologists around the country.

Kristy’s card apologizing for the whirlwind of hormones while trying to conceive.

I’ve most recently created a line of cards for couples to intentionally stay connected during the struggles of infertility. So often one partner feels at fault for the failed treatment or worse a partner can feel left out of the process. As I experienced both of those at times in my own marriage, I was reminded how important it is for all couples to stay in conversation along the way. As a couples therapist, I’m always looking out for ways couples can improve their relational bond and infertility has an immense power to create very wounding trauma that can impact fertility treatment, our body’s ability to cope with the various medical procedures, and our overall emotional health. It’s usually our partner who sees us day-in and day-out, going to our appointments, injecting mass amounts of hormones, sticking things up all kinds of places, and is left with whatever capacity we have left to be a good partner (which is usually very limited, sharp, sarcastic, or constantly hungry).

A card created by Kristy that helps couples to stay connected through the struggle of infertility.

Next week I’ll be launching a “lucky” socks collection that has been highly suggested by customers. I’ll be introducing various designs to keep your feet nice and cozy during the often cold and sometimes sterile appointments, egg retrievals, embryo transfers, and of course the dreaded two week wait. I love knowing women can look down at their feet and be reminded “I can do this” or feel empowered to stay focused and positive when the doubt creeps in. Also in the shop are “lucky” tees that women can wear at any point in the infertility process to feel supported and motivated to make each day, appointment, medication, and dollar, matter.

My hope in creating these cards and gifts is to help couples, families, and friends start to speak about the pain of infertility and in turn feel empowered to comfort and support their loved ones–with just the right words. So, if you are needing the right words to say to a friend or family member–or if you are needing a little encouragement yourself, consider sending some love through the mailbox. I mean, who doesn’t love snail mail?

A big hug to all those trying to conceive today, tomorrow, and in the years to come. You are not forgotten, friend. You can do hard things.

Kristy Koser, is a Licensed Professional (Clinical) Counselor in Virginia and Ohio and a Emotional Focused Couples Therapist and Supervisor. She specializes in couples therapy, family business consulting, and attachment related dynamics. Outside of her professional life, she’s a sucker for Netflix, flash mobs, and a good piece of cheese. You can reach Kristy for speaking, media or press inquiries at ttcgreetingcards@gmail.com.

Calling all Photographers!

Posted on November 24, 2015 by admin

Calling all Photographers!

A couple of weeks ago, Maria and I were working around my dining room table when I announced that I’m now comfortable enough to start doing some ART of IF interviews via telephone and having local photographers do the accompanying portraits. “Wow! Look who’s giving up some control,” Maria responded. “Good for you!”

It’s true that I’ve been very protective of the interview and portrait process. Maria and I have discovered that the interview and photo session are a part of the therapy and opportunity for healing that ART of IF offers. It’s an opportunity to set aside a time and space to reflect on the experience of life with infertility. Not only for our ART of IF participants, but for us as well.

Elizabeth and ART of IF participant, Kati, on location at a shoot in Chicagoland.

The photography also helps us tell a particular story and it’s nice to do the interviews and portraits during the same session. Although I’ve dabbled in a variety of art forms in order to tell the story of my infertility, I am first and foremost a photographer. It’s been important to me to be the one to capture the project’s images. Maria and I will still be the ones conducting interviews and photos shoots when possible. However, in order for our oral history archive to grow and for us to further fulfill our mission of capturing the diverse voices and perspectives of infertility, it’s important that we let go of some control. We can’t be everywhere at once, after all.

Kati and her husband are living childfree after infertility and are very involved in planning their community’s Founders Day Festival. Here’s Kati on parade day.

So, we are reaching out to you, our community, to see if there are any of you who would be interested in volunteering and helping us with our mission, and maybe experiencing some healing around your own experience with infertility in the process. We’d like to have a database of photographers around the country, and world, who we can call on to do portraits for the project as needed. Additionally, we’d like to have a list of those who are skilled at photographing artwork and documenting events.

Sound appealing? If so, we’d love to receive some information about you, your work, and why you’d like to be a volunteer photographer with ART of Infertility. You can download the application here.

We look forward to working with you!

Elizabeth

Stepping Outside My Comfort Zone – A Post by Elizabeth

Posted on October 9, 2015 by admin

I spent last weekend in California’s Santa Cruz Mountains. I love California. So much, in fact, that it’s gotten to the point where I nearly cry when it’s time to leave. Okay, maybe that’s a little bit dramatic but it IS true that I am always super excited to travel there and sad to leave. I have to admit though that I was really nervous about this trip and while I was happy to enjoy the beautiful scenery, meet up with friends, and visit some favorite establishments, I was NOT looking forward to what I was going there to do. Attend a retreat with Xtraordinary Fertility’s Renee Waggener, to “revive my baby making mojo”.

Redwood lodge, on the grounds of the Quaker Center, where the retreat was held.

It was nothing against Renee. She’s fun, vivacious, and as I said, I was looking forward to seeing her again. We met at RESOLVE: The National Infertility Association’s Advocacy Day in Washington, D.C. in May, where she first told me about the retreat. My first thoughts were, “Hey, Renee seems cool, and it’s in the Redwoods, I’m in!”

Shortly after returning from D.C., she asked if ART of Infertility would be willing to present a workshop during the retreat. I couldn’t say no. However, as the time to fly across the country came closer, my anxiety was building. I was going not only to lead the attendees in making prayer flags around their infertility journeys, I was going to be participating in Renee’s Fertilicious Living Program myself.

My prayer flag representing the different paths my life could take and the treasures I hope to collect along the way.

I was finding a few problems with that. One, I’m not currently trying to make any babies. Renee is pretty clear that she broadly defines “baby making”. It could be literal, but it also could be moving on to adoption, or finding and nurturing some other passion, something like ART of IF, which I definitely consider my “baby.” Still, I’m at a weird point in my journey. Not trying to conceive or adopt. Not resolved to live child free. I’m just kind of hanging out. While there are others hanging out in this space with me, it can still be lonely in the broader infertility community.

It seems there are so many resources for those who are shooting up with Lupron and Menopur or dealing with background checks and home studies and not so many for those living without children after infertility or on extended breaks, living in the limbo land of still figuring out where this journey will take them. I was worried about spending a weekend surrounded by people who were still in that world of “trying”. How would it make me feel? How it might make them feel to hear my story, learning that I am 6.5 years in and not yet resolved? I’m often immersed in the world of infertility but this felt different. Almost like I might be invading their space.

Had to throw in a pic of the food because it was AMAZING.

Another problem was that I was finding Renee’s message about the retreat to seem a little too much like a get rich quick message of magical thinking. It seemed to me like I was going to arrive and be told that, if I was just positive enough, unblocked myself, and practice envisioning my spirit baby, I would achieve my dreams. While that’s fine for some people, I’m totally not into that. I’m a realist. I’m into science. I don’t even like the messages, “don’t give up!” and “follow your dreams”. I’m much too practical for that. I don’t think I’ve always disliked those messages but infertility has taught me that there are some things in life that just aren’t possible and sometimes we have to redefine our goals as a result, and that’s okay!

However, the biggest problem is that there are some things around this infertility experience that I just having a hard time really talking about and dealing with. Not only is it hard, I’m totally out of practice talking about it in the infertility community on a deep enough level. I host a peer-led infertility support group and I’ve interviewed dozens of men and women about their own experiences for the project but I’m so used to being the one who is listening that speaking out has become much harder than it once was. I’m now used to being the one, in a group setting at least, who is making sure no one monopolizes the conversation and that it moves along. The one who is silent so that others can talk their hearts out. I knew that, as a participant in the retreat, I would be in a very vulnerable place. A place that, frankly, I’d rather not go at the moment because I’m afraid of what I’ll find.

View of the tree canopy during our hike.

I was pleasantly surprised by how different the reality of my experience at the retreat was than I imagined it would be. While the others at the retreat are still pursuing medical treatment, I felt I easily fit in. They are an amazing group or strong, insightful, compassionate women who made me feel at home, even though I’m at a different point in the journey than they are.

It’s true that Renee’s message is ultimately positive. However, it wasn’t all sunshine, rainbows, and magic like the website made me believe it would be. Instead, it was much more profound. She offered a safe space and really asked me the tough questions I needed to be asked and, not only asked them, but held a space for me to answer them. To really get to the bottom of why it was I didn’t want to answer them, or to understand what my answer meant to me. She’s pretty amazing at what she does, and, even though It was as hard as I thought it would be to go to a space of such vulnerability, maybe even harder, by the end of our time together, I felt more peace and clarity than I have in a very, very long time.

I’m glad I chose to attend the retreat, opening myself up to entering a space that I knew wouldn’t necessarily be fun, or comfortable, or relaxing, so that I could really dig deep, answering questions and learning tools that will help me get closer to resolving my infertility. The experience, and Renee, reminded me that these feelings of pain and discomfort are temporary, and that by allowing myself to feel them, I can find so many paths to, and opportunities for, feelings of peace and happiness.

So, I encourage you to step outside of your own comfort zone to do something this weekend that allows you the same opportunity. Whether it’s something big, or small, you might be surprised by what you find.

From Infertility to Fatherhood – My Journey So Far

Posted on September 30, 2015 by admin

This week’s blog is a guest post by Fred Harlan. We want to disclose a trigger warning, which is something we will do from here on out when we feel it’s needed, that this post does include images of a baby and of parenting. Fred and his wife Andrea are ART of Infertility project participants who we met in Southern California. They shared their story with us via an interview and also attended our pop-up art exhibit and workshops in Calabasas during National Infertility Awareness Week this year. Thanks, Fred, for sharing your family’s story!

From Infertility to Fatherhood – My Journey So Far

I am going to tell you something that I always hated to hear. At least, I used to at a point in time in my life. My wife and I were far along down that lonely path we were traveling in the midst of our infertility journey. The meandering road had become increasingly dark and dank. It was becoming more apparent that the chances of a successful IVF cycle using my wife’s eggs and my sperm was unlikely. Some people in our lives would say the obvious thought to them, and insensitive comment to us, that we could “always adopt.” Even the medical and therapeutic people that we sought out had begun to talk to us about “other options” to parenthood. I simply wasn’t ready to hear it, let alone think about it.

As time passed reality crept in. After many failed procedures, buckets of tears and a ton of soul searching, my wife and I eventually came to the realization that some how, some way, we really wanted to have a child. In order to make that happen we slowly began to look into other possible options. Now, after eight plus years of infertility and 10 months of fatherhood what I want to tell you is this: regardless of how long you have been battling or the reasons for your infertility, that if you are resolved in your desire to have a child no matter what, my message of hope is that there is a way. It may not be the way to parenthood that you envisioned but there are paths that can take you there. Not all roads are available to everyone for various reasons – emotional, cultural, religious or financial. But I know there is a potential path(s) available to everyone. You just have to be in a place along your own journey to be open to consider other possibilities.

Fred and Andrea during their ART of IF photo session.

Ten months ago my son, Gehrig, came into our lives. He was born of my wife’s womb, my sperm and a donor’s egg. Being his father is a joy that is incomparable to any other, a reality that I still almost cannot believe and an opportunity, considering the circumstances, which I long thought I never would consider. Like I was saying, my wife and I decided that parenthood was what we definitely wanted. However, with each failed IVF cycle the medical opinion increasing appeared evident that the quality of my wife’s eggs was our challenge. Knowing my wife’s heartache and my wanting to always tackle infertility as a team, I suggested to my wife that our future child should be either “both of ours or neither of ours” genetically. Honestly, I couldn’t imagine how I would feel had the circumstances been that of our future child being biologically hers and not mine, so I didn’t want her to have to imagine it either.

Egg donation seemed so unnatural, so complicated and so not us. We didn’t want to be “one of those couples.” Besides, there were so many questions that came along with egg donation. Would my wife be able to completely accept and love a child that was not biologically her own? Would the donor want to be a part of his and our life? What if he doesn’t look like us, and then what would we say when asked, “whom does he look like?” What would we tell family and friends? And what if years down the road our son had a health issue and would benefit from knowing detailed medical history? And the really big question: what would we tell our son? Although we knew several people who had chosen the egg donor route and were very happy with their choice, it just didn’t feel like the right option for us. So we closed the door on this alternative and proceeded in educating ourselves on the different avenues of adoption, including that of embryo adoption. During this time my wife realized that the concept of being pregnant and carrying a child was extremely important to her, especially considering her doctors believed she would be able to carry a child. So it appeared that embryo adoption was the answer that life was steering us toward. At least that is what we thought until a comedy of errors (a story for another day) resulted in my wife’s sister volunteering to be a surrogate or give us her eggs or whatever we needed, led us to think about egg donation one more time. It was during this period that I realized that having a child who was biologically mine was more important than I had allowed myself to think. Another series of events led us to our eventual donor (another story for another day) and the rest as they say is history.

Looking back on everything we went through I have one more thing to say that someone struggling with infertility may not want to hear either, and I understand why – I was in your shoes. But now I need to say it, I have to say it, because it is my truth. I would not change a thing. At least not if it meant I wouldn’t have Gehrig today. If you told me ten years ago, “Fred, I have good news for you and I have bad news. The bad news is that you are going to go to hell and back again and again and again in your attempt to become a father. You are going to doubt yourself as a man, a person and as a husband. You and your wife are going to go through heartbreak after heartache, and you are going to have to be the rock that supports your wife all while you can barely stand on your own. You will doubt your dreams, your wife, your faith and life itself. You will sit in the depths of despair that appear to have no escape, no hope and no resolve. However, at the end you will be given an amazing little boy to love!” Knowing everything that I know today, I would sign up for that in a New York minute.

We have all heard some variation of the motivational phrase, “Life is not a destination, it’s a journey.” I always wanted to believe that was true but some how never found a way to make it work in my life. Stress and frustration seemed to win out more than I would have liked. Then one afternoon, after my wife and I participated in a vision board workshop – an activity hosted and encouraged by our infertility counselor – in order to assist us in visualizing the life for which we hoped, I realized my board was not complete. I had one picture with a saying to represent my life’s journey that simply was not ringing true for me. In fact, it was pretty lame. So decided to scour the Internet for an image that would adequately represent my life’s road. Beaches speak to me and as I scanned many coastal images I came across one. As soon as I saw it I know my vision board was complete. It was the picture of foam-crested waves gently meeting the sand in which were inscribed the following words: “The journey is the reward.” That rephrasing of all those old Successories/Sky Mall posters spoke to me differently somehow. I didn’t know it exactly at the time, but now I do. And as I look at that photo posted on my desk as I type, I can say that my journey is indeed my reward.

Fred shares a vision board that his wife, Andrea, made during their journey at the ART of IF pop up exhibit and workshops in Calabasas, CA during National Infertility Awareness Week in 2015. Photo by Chrystal Starr Photography.

I often speak about infertility as a journey. Each couple, each person who is faced with the disease goes through similar experiences and yet at the same time a journey all her or his own. I did not realize it as I was going through it – how could I, it was just too emotional, too raw – but in retrospect, I realize that I was being prepared for what life had in store for me – not just to be a father, but to be a father to this little boy, here and now. I have always wanted to be a dad, and had I become one earlier in life I’m sure that I would have relished it and been a good one. However, becoming a parent at this point in my life I know that I am so much better prepared for fatherhood than I would have as a younger man. I am more grounded, more secure emotionally and less anxious. I am not missing as much time with Gehrig as I am sure that I would have years ago while building a previous business. I am home more and with Gehrig frequently despite building a new practice. I’m often the lone dad in the “Mommy and Me” new parent classes.

The dad I am today is not solely because of the length of time it took to become one, but also as a direct result from my infertility journey. For example, I am more patient and flexible than I used to be. This is a benefit to Gehrig but also to Andrea as we parent him together. Also, the perfectionist that I am has been able to let go of having to do things in a specific “right” way and being tied to specific outcomes. When Gehrig didn’t nurse right away I didn’t panic (don’t ask me about my wife), rather we sought help. He turned into a nursing machine. When Gehrig didn’t crawl when he should have we enjoyed what he was doing (rolling everywhere) and asked for advice. Now Gehrig is on the move. Had I been a parent years ago I would have been looking at the situation thinking: “what is wrong with my kid!”

Once we found out that Andrea’s pregnancy was viable I made up my mind that I would “take it all” – I would change every dirty diaper, listen to every cry, dry every tear and wipe up every spit up with a smile on my face. I laugh when I fly Gehrig over my head like Superman and he drools on my shirt, my glasses or even my mouth. I do not care. No, that is not true – actually I care a lot, in fact I love it. He is my son and I waited too long and tried too hard to have him to not enjoy every moment. And I have learned that some of the best moments are the simplest, such as at the end of the day when I am rocking him to sleep. His head lays on my shoulder and has he surrenders to sleep his neck gives way to the weight of his head which nestles into the nape of my neck. I continue to rock him for another ten minutes or so to ensure he is asleep, but mostly because that time is priceless to me. Each and every night I think to myself how life prepared me those moments, and I’m so grateful that I’m not missing a second of it by simply hurrying to get my son to bed.

Fred, Gehrig, and Andrea during their ART of IF photo session.

You may be saying, “well, that is great for you Fred, you are one of the lucky ones, you were able to have a biological child. What about your wife? What about all the people who are not able to have a biological child?” My response is this: those are fair questions and it is reasonable to ask them. It is important to note that during the process of choosing egg donation, I grieved significantly for the child that I always thought Andrea and I would have together. In the end perhaps I am lucky – I am definitely fortunate – or perhaps we made our own luck to opening ourselves up to other possibilities to parenthood. This is not a commercial for egg donation or parenthood, rather it is intended to inspire hope in infertile couples who have definitely decided or are at least thinking they still want to be parents some how, some way. And as for my wife, she feels pretty fortunate herself. She will tell you, what I will tell you, that Gehrig is 100% hers. She carried him in her womb, feeds him from her breast and is a completely devoted mother in raising him and that is what is important to her. Likewise, I know many people who have adopted newborns, babies, children and even embryos, and all without fail will tell you that their child is indeed their child and was from the moment that child entered their lives. At the end of the day it is the emotional bond that matters, not the means by which the child arrived in your life.

I wholeheartedly believe that Andrea and I were meant to be parents, and once we figured out that part, life opened new opportunities for us to become so. I also believe that my son was meant to be and meant to be in our lives at this moment in time. He didn’t come to us the way we thought he would, but that no longer is a concern. Years ago it was difficult to think about, let alone see, that life’s journey was preparing me, actually all three of us, not for the live we envisioned, but the life we were meant to live.¹That’s my journey – so far.

¹A variation of a quote by Joseph Campbell.

Fred Harlan, MA² is a resourceful Marriage and Family Therapist Intern who works with couples and individuals on relationship issues, and men and couples coping with infertility (theirs or their partner’s). Fred holds Master’s Degrees in Clinical Psychology and Speech Communication. Fred@FredHarlan.net.

Infertility is…How I’ve Met Some of My Favorite People.

Posted on September 18, 2015 by admin

At the RESOLVE: The National Infertility Association Tri-State Walk of Hope last weekend in New Jersey, we brought out our “Infertility is…” cards again and asked those in attendance to share their thoughts. When I was looking through them this week, the first thing that popped into my head about my own experience with Infertility is how it’s brought so many amazing people into my life. We had a chance, after corresponding via phone and email with them over the past year or so, to finally meet some of those amazing people in person at the Walk.

There are too many to count, and I don’t get to keep in touch with most as often as I would like. However, each of the people I have met along this journey mean so much to me. There are those who share their stories with the project, reminding me that I’m not alone in my journey. There are late night exchanges of advice with support group friends via Facebook messenger and emails from people around the world sharing art they have created during their infertility journeys. There are the doctors and other infertility professionals who have opened their doors to us to learn more about the project and those sharing their time and talents with the ART of Infertility community by presenting art and writing workshops. I’ve found an amazing network of incredible people, passionate about their desires to build their families, and passionate about helping others do the same.

So, this week, I’m sharing some of the new cards from the walk with you and asking you, my infertility friends, to share with us what “Infertility is” to you. What makes the experience so hard? What are the silver linings? Is there anything surprising that has come out of your experience? One of my favorite, surprising, outcomes of the ART of Infertility project is having the opportunity to connect the friends I meet along the way to each other so they can build a bigger network of support.

Is there anything else you feel you need extra help with or support for that we could help you with? Are there things you would like to see ART of Infertility offer that we don’t currently? We’d love to hear from you, our friends in infertility and art!

Elizabeth

My Infertility Wardrobe – Reflections from Elizabeth

Posted on September 10, 2015 by admin

My mother once told me that she was so excited when she was pregnant with me, in part, because it meant she got to buy new clothes. Her budget for clothing was tight but a changing body meant she’d have no choice but to expand her wardrobe. My relationship with clothing and fertility has been a little more complicated.

I knew, long before I started trying to conceive, or received my diagnosis of Luteal Phase Defect, Endometriosis, and Diminished Ovarian Reserve, that when I got pregnant, I was going to show off my growing belly. No flowing tops with empire-waists for me! I was going to wear form fitting dresses, showing off every curve.

Once I went off birth control, I was reluctant to buy new clothes. It was only a matter of time before I wouldn’t be able to fit into them, right? I needed to save my money for trips to Motherhood Maternity and shopping A Pea in the Pod, and the maternity line of stores like GAP online.

Months turned to years and my clothes were getting tattered and faded. It was a stand off of sorts. I refused to give in and buy something new. Eventually, just after beginning a treatment course of inter-uterine inseminations with a hybrid of oral and injectable hormones, I needed a new winter coat.

My mother-in-law, Beverly, and I took a trip to TJ Maxx on a Saturday afternoon. I picked out two. One was Calvin Klein. Long, black, full of down, with faux fur framing my face on the detachable hood. The other, an Anne Klein of bright red wool. Beverly, an excellent shopping partner because of her excitability over a fantastic find, gushed about how cute it was and asked, “Oh! Don’t you hope you don’t get pregnant right away so you can wear it a little while?”

I didn’t care. The coat would fit after my pregnancy, or it wouldn’t, but at least I’d have a baby in my arms.

In the red coat, surrounded by children on a hay ride on our friends’ family farm.

Around that time, I decided to readjust my perspective and started using clothes as my consolation prize for not being pregnant each month. With the arrival of each new cycle, the sure sign that treatment had once again been unsuccessful and the prospect of having to buy maternity clothes was delayed for another month, I would head off to the Limited, or scour the racks at Marshall’s after appointments with the reproductive endocrinologist. I bought sweaters, camisoles, tops, but never bottoms, still holding on to the possibility that it wouldn’t be long before I was pregnant and I would have difficulty zipping and buttoning them.

My dresser drawers started overflowing and I had no choice but to start moving clothes into the dresser in the guest room that was supposed to become a nursery.

At Advocacy Day in 2014 wearing clothes purchased specifically for the occasion.

In March of 2013, we moved on to IVF. I had originally hoped to do it in February, just before 35^th birthday. I liked the idea of using 34 year-old eggs to create my embryos. Everyone knows things go downhill after 35, right? Unfortunately, since I now live in the world of infertility, I know that things can go downhill at any age.

Our IVF cycle resulted in three, grade 5AA blastocysts. They were high quality, hatched, and ready to implant and become my children. They were beautiful. We transferred two in May and waited to find out if they’d implanted meaning that I was finally, after four years of dealing with infertility, pregnant.

On the night before my beta, after we’d had dinner and I’d taken the dog for a walk, I tested. I seriously wasn’t expecting anything. The words, “It’s negative” were already coming out of my mouth when I realize it wasn’t. Positive. The line wasn’t very dark but it was there. My husband and I were all smiles and I made some comment about being his pregnant wife. Still, we were cautiously optimistic. We knew the blood test the next day would give us a better indication of what to expect.

The next morning, I saw a rainbow on my way to have my blood drawn. That had to be a good sign. The nurse called with my numbers a bit later. At 30, they weren’t where I wanted to be but I was indeed pregnant. Suddenly, I didn’t hate the pregnant women I passed in the hall at work. I was one of them. It was exciting but also a complete identity crisis. I was fully immersed in the infertility world at that point and the thought of switching gears and becoming a parent were daunting. Still, I smiled when I thought of raising my child alongside my best friend’s daughter who would be just a bit older. Summers at the lake, sleepovers. After years of being left behind by friends as they moved into parenthood, I’d finally be moving forward and joining them.

On the day of beta number two, my mom and I were shopping in Metro Detroit. I needed some summer clothes and took care to choose items that, as my mother-in-law had said about the red coat, I’d be able to wear a little while. At Nordstrom, I fell in love with a light-weight tweed skirt that, unfortunately for me, a newly pregnant woman, fit perfectly. There was no give, meaning it wouldn’t fit long enough to make it to the “yes” hook in my fitting room.

I paid for my items, we had some lunch, and made our way to an antique store. It was in the parking lot there that I got the news. My beta had gone down. The pregnancy was not viable. I emailed my husband the message, “No more shots.”

I thought I could hold it together but I couldn’t, we hit the highway to head back to the hotel. All I could think was, “I should have bought the skirt”, like doing so would have guaranteed that my pregnancy would have continued. For a moment I panicked and my mom and I considered turning around and going back to Nordstrom. We didn’t.

With my husband on our “IVF didn’t work so we’re taking a vacation” trip. I bought the hat at the resort gift shop after forgetting mine at home.

After my early miscarriage, that skirt haunted me. I looked for it on repeat trips to the mall and it wasn’t there. Months passed and my husband, Beverly, and I were visiting my nieces in Minnesota for their birthdays. We’d been at the Mall of America for hours with a trip to the aquarium, amusement park, the movie theater, and more. The girls were anxious to get back to the hotel to play with their new birthday toys but I wanted to try to take advantage of Minnesota’s tax-free clothing. I said good bye and I’ll see you soon as the rest of my family boarded the elevator to find the shuttle back to our room. I didn’t have much time, but I headed into Nordstrom Rack.

There it was. The skirt. I needed some closure. I took it to the fitting room, this skirt that I hadn’t been able to get out of my mind since the day of my miscarriage. The skirt that I passed up because I was pregnant, then wasn’t. My heart was racing as I put it on and zipped it up. I looked at myself in the mirror and was surprised to see that it wasn’t as fantastic as I had remembered. Relief rushed over me.

Since then, we unsuccessfully transferred our last embryo. We’ve moved on to trying to regroup. To find ourselves after more than half a decade of the turmoil that comes along with an infertility diagnosis. In addition to regular therapy, I’ve indulged in a little too much retail therapy. My recent splurge (a great deal at Nordstrom Rack, yet still not cheap), a Burberry dress. Not because it’s Burberry but because the fabric feels amazing and it’s in a style that I’ve always wanted, but I’ve never before been able to find in proportions that fit me right. It’s hanging in my closet, with the tags still on. I go back and forth between thinking I should return it and imagining myself wearing it to present about the ART of Infertility at an upcoming medical humanities conference.

The Burberry dress. It’s nowhere near that short on me!

Click here to vote on whether I should return or keep the dress.

I’m not yet sure if my journey will take me to a life living child free or to parenthood. I imagine both scenarios and there’s a wardrobe that goes along with each. In one, there’s shopping without the worry of my newly purchased pants suddenly not fitting, neatly folding clothes and then doing my best to cram them into already over-filled suitcases for more travel with ART of IF, carefully chosen outfits for business meetings, a variety of shoes, belts, and jewelry for accessorizing.

In the other, there are also the shoulders of my sweaters soaked with baby drool, the hem of my skirt being tugged by the tiny hand of a son or daughter, urging my attention to his or her level. There’s me in the stands at a ball game in the rain, wearing a wind resistant parka and, eventually, a trip to a boutique to purchase a mother-of-the-bride, or groom, dress.

I don’t imagine that one wardrobe is better than the other. I believe I can be happy wearing either one. But will one make me happier? Feel more fulfilled? More at peace? I’m not sure yet. So, I’ll take this time to work on re-weaving the fabric of my life that’s been worn thin over the past six and a half years, hoping that I’ll eventually know how to cut it up and stitch it back together into something beautiful and new.

ART of IF

The official blog of the traveling art exhibit and oral history project, ART of Infertility.

Tag Archives: ART of Infertility