We Are Strong Women

No matter who you voted for, waking up last Wednesday morning morning it was clear: the world has been changed. For Elizabeth and me, this took on particular meaning as we finalized our presentation for Merck KGaA’s As One For employee education day, an event devoted to Merck staff understanding the perspectives of patients using their products.

We made the trip to Switzerland with six suitcases and two backpacks full of art and supplies.

We made the trip to Switzerland with six suitcases and two backpacks full of art and supplies.

Sitting in our Coinsins, Switzerland L’Auberge Salon (aka – our small but quaint hotel room) – we decided to devote this presentation to all the infertile women who have had to struggle to fight for their dreams, fight for their passions, fight for a child. In honor of all of you who have graciously shared either your time, resources or both to The ART of Infertility – we dedicate this to you – the infertile but ever strong woman.

Here is a bit about our own personal stories and how we have found strength in our infertility.

-Maria

Elizabeth’s Story.

My husband Scott and I met on New Year’s Eve 1999, married in May of 2004, and five years later, decided to add to our family by having a baby.

I went off the birth control pill in March of 2009 and started charting my cycles. My chart was a mess. Definitely not what you want your chart to look like while trying to conceive. By fall, my chart was looking better but I was finding that the time between ovulating and starting my period wasn’t long enough to be optimal for implantation and to sustain a pregnancy.

My first chart off birth control.

My first chart off birth control.

Right around that time, Scott’s sister, Shelley, got sick. She was the recently divorced mom of three little girls. The girls began spending Shelley’s custody days with us. Suddenly we were thrown in to sleepovers, play dates, homework, and bath time. We were the ones to tuck them in at night, soothe them when they woke up from nightmares, and nurse them back to health when they were sick. The circumstances were terrible, but having them living with us was one of the very best experiences of my life. Sadly, Shelley died in January of 2010.

That March, their dad moved them to Minnesota. With the girls nearly 600 miles away, we were devastated. This was made even worse by the fact that it had been over a year since we started trying to conceive and we were officially dealing with infertility. I wondered if the time that the girls lived with us would be the only time we’d ever parent. We needed to see a doctor to get started with testing and treatment but took some time to heal first. Well meaning friends and family, not knowing we were trying to conceive and unsuccessful, suggested that having a child of our own might help us heal. While we wanted a baby, it was no replacement for the precious nieces that we were longing for.

By the end of the year, we were ready. At Thanksgiving, I was headed to testing and my sister she announced she was pregnant her second month of trying to conceive. We spent Christmas of 2010 with the girls in a hotel in Minneapolis. The entire trip, I was receiving test results and scheduling more appointments.

Between the end of 2010 and the end of 2012, I was diagnosed with Luteal Phase Defect, Endometriosis, and Diminished Ovarian Reserve. We endured five rounds of oral meds with timed intercourse, four intra-uterine inseminations with oral and injectable drugs, I had a diagnostic laparoscopy, and I joined a RESOLVE: The National Infertility Association support group and then became the group’s host.

What I personally found hardest about infertility was being stuck in limbo as my friends and family had children, all the decisions that infertility forces you to make, and the fact that it’s an invisible disease. In order to make my infertility visible, I started creating artwork.

roses

The first piece of artwork I made during my IF journey.

The first piece created out of my infertility journey, made while on medical leave after an exploratory laparoscopy to remove polyps and endometriosis.

I learned that others were also using artwork to deal with infertility and in fall of 2012, pitched an “infertility art exhibit” to the Ella Sharp Museum in Jackson, Michigan, where I live. The exhibit would provide educational info on infertility, display the environmental portraits, artwork and stories of those living with infertility, and offer an art workshop.  They said yes.

Early 2013 brought our one and only IVF cycle. My retrieval led to complications (internal bleeding and ovarian torsion) for which I needed emergency surgery. After I recovered, we transferred two of our three resulting grade 5AA blastocysts. I got pregnant, but miscarried twins early on. This all happened between the middle of February and June 1st and I needed a break after all we’d been through.

I spent the rest of the year working on the exhibit, compiling facts, making artwork, and photographing exhibit participants. I wanted to show them participating in activities other than infertility that defined them.

What I personally found hardest about infertility was being stuck in limbo as my friends and family had children, all the decisions that infertility forces you to make, and the fact that it’s an invisible disease. In order to make my infertility visible, I started creating artwork.

In February of 2014, we transferred our last embryo and I didn’t get pregnant. My husband and I had reached the end of our journey in attempting to have children that are genetically ours. We needed time to grieve and regroup with the idea that we may eventually move on to living child free or adopting from foster care. Two and a half years later, we’re still working on healing from all we dealt with. We need a bit more time to come to terms with what we’ve been through, and rebuild our relationship. However, I am starting to feel the pressure of time and the need to make a decision about how we will resolve our infertility. We are still considering living child free, especially since we have such a close relationship with the nieces we parented for a time. We are also considering using donor embryo, an option that I started considering after hearing the story of Noah and Maya, who I interviewed for the project.

In March of 2014, The ART of IF: Navigating the Journey of Infertility opened at the Ella Sharp Museum. Along with raising awareness about infertility through the art exhibit, I began lobbying for infertility legislation on Capitol Hill with my first trip to Advocacy Day in D.C. that May, where I met Maria Novotny.

Maria’s Story.

This is where my infertility story begins – at yes, believe it or not, the age of 15. I met Kevin, my now husband, at this age. Throughout high school and college, Kevin and I dated on and off. Ultimately, upon graduation we decided to get married. Both of us came from big families. In fact, my family was so large that my parents actually had my brother when I was 18. So the idea of being infertile NEVER crossed my mind. In fact, I was often warned that I would be “too” fertile. This was a joke at the time, but now is all too ironic.

Kevin and Maria with family on their wedding day.

Kevin and Maria with family on their wedding day.

After marrying at the age of 23, we moved to MI for Kevin’s job and bought a house. Soon we began nesting, adopting dogs and shortly after decided to “try”….

Months passed and nothing. No success. A year passed. And we knew something was wrong. I booked an appointment with my OB/GYN. Tests came back and it was suggested we go to our local fertility center.

We attended a consultation and left feeling completely overwhelmed. We were 24 and grappling not only with the numerous options available as well as financial cost – but also with the fact that we were trying to understand our new infertile identity. We felt paralyzed. We were living in a new state. We had no family near us. And we had few close friends. So, we decided to look for support…

But couldn’t find anything. Desperate just to meet someone else who was infertile, we turned to the internet and “came out” with our infertility. We shared our story on our local city’s newspaper and asked others if they too needed support. Slowly but surely, we began to connect with others looking for a safe space to deal with issues in a city that was rated by Forbes Magazine as “the #1 place to raise a family.”

infertility-support-grand-rapids

At this time, I found myself needing to document my infertility journey. I felt a deep desire to capture the complex and confusing feelings that I was experiencing. So I began to write. Doing so, I wrote several pieces. One of which is titled The House, a piece now in The ART of Infertility which reflects on the house my husband and I bought prior to learning about our infertility.

As I began to do more creative writing pieces, I felt an increasing connection to return to school. As a college student, I majored in English. Learning how writing could help with emotional and physical healing, I started a Master’s program focused on writing and the teaching of writing. Graduate school became a place where I could escape the pressures of not conceiving, of not becoming a mom.

We attended a consultation and left feeling completely overwhelmed. We were 24 and grappling not only with the numerous options available as well as financial cost – but also with the fact that we were trying to understand our new infertile identity. We felt paralyzed. We were living in a new state. We had no family near us. And we had little to few close friends. So, we decided to look for support…

Today, I am in the last year of my schooling – finishing my PhD in an area that I call “rhetorics of infertility” which explores how writing and art are composition practices communicating the challenges women and men face when diagnosed with infertility.

And so, while I currently am not in treatment, nor am I pregnant – I still am very much in limbo. Very much in a place of not knowing what my next move should be. I am 30 now. I have lived the past 6 years knowing that I am infertile. But the need to make a decision about what to do next is so overwhelming that I am secretly hoping it will work itself out, that my husband and I won’t have to make a decision. This hope is what we call “limbo” – the not knowing of infertility and the sheer exhaustion that comes with its disease.

***

While we both have decisions to make about further growing our families, through ART of IF, Elizabeth and I have found more happiness, and peace than either of us has had in years. The connections that we have made with other infertile individuals and families, the work that we do in helping them along their journeys, and the awareness about the patient experience that we are able to raise, has given us fulfillment. For both of us, this project turned organization has become the baby that neither one of us could have.

We shared these stories with Merck employees, followed by a Q & A. Upon doing so, our co-presenter, a fertility specialist in the UK, concluded the session. She reminded all of us that while infertility can be difficult to learn about – both in terms of its sadness and depressing nature – we need to remember that infertility can make those dealing with it stronger. She spoke to the fact that The ART of Infertility is a testament to this. That when women face adversity, they can create beautiful things. We – the infertile – are strong (and powerful) women. We were very touched by her words and the important reminder that is especially relevant in this post-election time that we are now living. Let us not forget that our challenges have the potential to make us stronger and, through the lives we live and the work we do, we have the ability to make a positive impact on our own lives and the lives of those around us.

How have you found strength in your infertility journey? We would love for you to share it with us.

After traveling all night, we arrive at Merck to drop off the exhibit supplies.

After traveling all night, we arrive at Merck to drop off the exhibit supplies.

 

 

 

The Truth Behind Combat Related Infertility

As we celebrate #MensHealthMonth, we share a story from Crystal who describes the day her family’s life changed forever. Her fiance, Tyler, was injured while serving with the US Army’s 173rd Airborne Brigade. She shares their inspiring story on how they have fought not just for better Veteran’s care but have fought for their own family.

We salute Tyler and Crystal who remind us that infertility does not discriminate. It can impact anyone – men, women, veteran or civilian.  

***

Tyler at National Mall

Tyler, pictured outside of the National Mall in Washington, D.C.

May 3, 2005 was a day that changed our lives forever. Tyler was serving with the US Army’s 173rd Airborne Brigade when his Company was called into the Arghandab River Valley to rescue their Battalion Scouts. After arriving in the valley, the Company’s Weapons Squad, where Tyler was serving as an Assistant Gunner, headed to a high point to provide support by fire. While on the hillside Tyler’s squad came under fire and within minutes Tyler was shot four times. The first bullet lodged in his spinal canal, which left him instantly paralyzed from the waist down and unable to move out of the line of fire. Tyler’s Squad Leader, SSG Matt Blaskowski and SPC Clover recognized the danger Tyler was in and despite continuous fire ran to Tyler’s aid to pull him to safety. Tyler was already paralyzed, but the second bullet was what threatened his life as it ripped through his left lung and lodged in his liver. Tyler was left fighting for his life, and without the intervention of others and a will to live he would not have survived.

Little did either of us know May 3, 2005 would set our paths to cross and ultimately lead to another big fight. Tyler and I met in 2013 when he decided it was time to move past his paralysis and return to the things he loved, sports and outdoor recreation. This is where I came in; I worked in adaptive sports for Veterans and together Tyler and I were able to rekindle his love for all that Colorado has to offer and ultimately fall in love with each other!

Shortly after Tyler and I started dating we began discussing a family and how that would be possible with his injury. This is where the biggest fight we have ever faced together began. Due to Tyler’s paralysis we quickly discovered that IVF was our only option to have a biological child of our own. Soon after, we discovered that due to a 1992 “ban” Congress put on the VA there was no coverage for this medical procedure. We were heart broken, devastated, disappointed, the list goes on, after discovering that Tyler’s wounds received in combat would present a $40,000 barrier to us fulfilling our dream of having a baby of our own and Tyler’s last step to fully reintegrating into civilian society.

Neither Tyler nor I were ready or willing to give up on this dream. He fought with everything he was to survive after May 3rd, despite all odds we found each other, were building a life together, and as a stronger team we would fight for this together. There have been so many “bad” days where anger and disappointment feel as they are taking us over in the journey to have a family, and at times complete disgust that our country, a country that you can’t walk down the street without seeing a yellow ribbon, “God Bless our Troops” sticker, or hearing “thank you for your service,” could let this man down so completely. To cope with the spinal cord injury is difficult enough, to fight for your life is enough to ask of Tyler and every other Service Member in his situation, to ask them to give up on the opportunity to pursue a family simply because politics gets in the way is absolutely unacceptable.

I have seen this man struggle through enough already; to get through life as a paraplegic is not an easy task, but he has NEVER ONCE complained about anything or regretted his service to our country until this. To ask him to give up on something he has wanted his whole life, to be called “Dad” simply because he answered the call to Duty, served honorably, and happened to be wounded in a way that prevents him from being able to pursue this dream without medical intervention is this country, this Congress, truly turning their backs on those men and women who have given so much of themselves already.

These reasons are why Tyler and I have chosen to not only find any way possible to pursue this medical treatment on our own, but to also stand against this gap in coverage and fight to both bring awareness to the issue and change policy to ensure this never happens again. The bad days are no longer consumed with anger and no where to place it, disgust and no way to overcome it, but instead we have taken this opportunity to advocate on behalf of Tyler and every other Veteran in his seat, to stand in front of Congress and give them a face to remember when they vote on the proposed legislation that would reverse this “ban.” It has become our mission to ensure Congress no longer vote on statistics related to this issue, but instead vote on faces, on families, on those men and women who they sent to war with a promise to provide health care to those who came back wounded, ill, or injured.

Tyler and Crystal training for the Ride the Rockies tour.

Tyler and Crystal training for the Ride the Rockies tour.

Tyler has done an amazing job at living life from a wheelchair, we have built an amazing life together full of support and a promising future, but this wheelchair, this bullet in his back, that should not be an excuse for Congress to deny him or anyone else in his position what Congress cherishes most themselves. When we were in DC at Advocacy Day 2016, there was a majority of Congressmen and Congresswomen that had family pictures strewn throughout their offices. This became our platform and will continue to be our motivation for change. We have a wall full of medals Tyler earned in combat, we have a wall full of pictures with us and our dogs, but what we are missing is what Congress already has, what war did not take away from them, we are missing Baby Wilson’s birthday.

If you would like to follow-along with our journey to Baby Wilson, IVF Advocacy for Veterans, please see our blog at http://www.pushmeeveryday.com

News Round Up: All About Veterans

senate

CSPAN announcing HR 2577 passed.

This week’s News Round Up is all about veterans because a historic vote just took place and passed! The Mil-Con Bill, now named HR 2577, passed yesterday in the full United States Senate by a vote of 89 to 8, with Senators Corker, Crapo, Flake, Lankford, Lee, Paul, Risch, and Sessions voting against it and Senators Boxer, Cruz, and Sanders not voting. Confirmed: it *included* the Amendment providing funding for IVF for Veterans. It will now move forward to a conference committee to reconcile the bill and then go back to both the House and Senate for a vote.

Kuddos to all of you who called Congress this past week encouraging your local Senators to support this bill. Citizen advocacy does work!

Today, we localize the importance of this bill by sharing a recent news story of Michelle Wager, a MI veteran who has been facing her own infertility journey.

michelle wager

Michelle Wager, a MI veteran facing infertility.

“A roadside bomb blew off one of Wager’s legs, badly damaged the other and broke her back. Doctors say she coded three times. Her recovery was long and painful. Military health benefits covered the cost to get Wager back on her feet, but there was another problem. Her menstrual cycles had completely stopped, doctors say her injuries threw her body into early menopause. She was just 31 years old and her chances of having a child were slim to none.”

You can read more of Michelle’s story here.

We invite you to learn more about the challenge veterans face when pursuing family-building options and to contact your federal representatives asking them to co-sponsor S 469, the Women Veterans and Family Health Services Act. Find your representatives here.

 

Myth: Advocacy Day is Over and The Work Is Done

This past Wednesday Elizabeth, myself and several hundreds of other infertility professionals and infertile individuals met with our representatives asking them to support The Veterans Amendment to the Senate Appropriations Mil-Con Bill. This bill would provide funding for the VA to offer IVF to wounded veterans. Currently, the VA does not provide IVF coverage to our Veterans. You can learn more about this injustice hereWe just learned that the Senate will be voting on this issue this week! And so, our #IFAdvocacy work is not over — it is just beginning! Please take time this week to contact your Senators and urge them to support this very important bill! 

Below, we are busting the myth that Advocacy Day is just a one-day event. We provide reflections on Advocacy Day and some strategies to help you encourage those in your infertility support network to continue this important advocacy work all year long.

**********************************************************************************************************

Empowering! Exhilarating! Amazing! Awe-Inspiring! 

Elizabeth and Maria at Advocacy Day's Welcome Reception located in the Russell Senate Building.

Elizabeth and Maria at Advocacy Day’s Welcome Reception located in the Russell Senate Building.

These are just a few words that can attempt to capture the overwhelming rush of energy you feel attending an Advocacy Day.

This year though was particularly invigorating given the day’s partnership with veterans and advocating for the VA to change their anti-family-building policies that provide no IVF care to veterans (click here to find out specifics of these policies). Taking on such an issue opened many doors, both on the right and the left, highlighting to staffers, legislative aides and the representatives themselves the injustice these VA policies have on family-building for military families.

At the opening reception, we were powerfully reminded by a military family the importance of advocating for sponsorship of these veterans bills. A military spouse remarked

“War has changed their family, it shouldn’t keep them from having one.”

Upon uttering these words, you could hear the gasps of emotion from the audience. Energy was filling our lungs.

And on Wednesday May 11th, we took that energy and got to work walking the hill as we wore our orange ribbons and #IVF4Vets buttons.Twitter blew up, Facebook pages blew up, even congressional reps and aids seemed a bit surprised.

Nearly 200 infertile advocates took over the hill on May 11th, changing the conversation.

Nearly 200 infertile advocates took over the hill on May 11th, changing the anticipated conversation.

But now, we are all back home. We have returned to our day-to-day, returned to hosting our support groups, returned to our own personal struggles with infertility. The question that we now need to focus on is no longer, how will I get my representatives to support better infertility coverage? We did that. We got their attention. We even made CNN.

tapper

Jake Tapper of CNN covers our Advocacy Day and push to get #IVF4Vets.

The question is now, how can I continue to remind my representatives that #IFAdvocacy is not just a day – it is a movement for social change, a move towards family-building, a move towards reproductive social justice. How do we do this though? How do we bottle up all of that energizing spirit and tap into it on a consistent basis?

13230315_10154236330306742_2925500788373099402_n

Elizabeth, visiting Rep. Walhberg’s (R-MI) office for the third time to ask him to support #IFAdvocacy.

Think about it as a monthly bill that you have to pay (and doesn’t yet have automatic bill payment setup). Pick a date in your calandar. Perhaps it is the 11th since we met with our reps on the 11th. Give yourself a monthly alert on this date to connect once more with your represenatives. Send out an email, send a tweet. Take those business cards you received and email their aids. On Father’s Day, remind those our representatives of how hard this day can be for those looking to build their families. On Thanksgiving and Christmas, do the same. Be an advocate all year long. This takes work.

We know that it does. But if we want #IFAdvocacy and #IVF4Vets we need to hold ourselves and our representatives accountable. In the words of Rep. Tammy Duckworth, the hill is our house. Let’s be sure to demand to our representatives that infertility coverage is something we are putting in our house.

Rep. Tammy Duckworth (D-IL) speaking at the morning training session about her own personal story with infertility while serving in the military.

Rep. Tammy Duckworth (D-IL) speaking at the morning training session about her own personal story with infertility while serving in the military.

Let’s Remember Advocacy Day Is Just the Beginning

Empowering! Exhilarating! Amazing! Awe-Inspiring! 

Elizabeth and Maria at Advocacy Day's Welcome Reception located in the Russell Senate Building.

Elizabeth and Maria at Advocacy Day’s Welcome Reception located in the Russell Senate Building.

These are just a few words that can attempt to capture the overwhelming rush of energy you feel attending an Advocacy Day.

This year though was particularly invigorating given the day’s partnership with veterans and advocating for the VA to change their anti-family-building policies that provide no IVF care to veterans (click here to find out specifics of these policies). Taking on such an issue opened many doors, both on the right and the left, highlighting to staffers, legislative aides and the representatives themselves the injustice these VA policies have on family-building for military families.

At the opening reception, we were powerfully reminded by a military family the importance of advocating for sponsorship of these veterans bills. A military spouse remarked

“War has changed their family, it shouldn’t keep them from having one.”

Upon uttering these words, you could hear the gasps of emotion from the audience. Energy was filling our lungs.

And on Wednesday May 11th, we took that energy and got to work walking the hill as we wore our orange ribbons and #IVF4Vets buttons.Twitter blew up, Facebook pages blew up, even congressional reps and aids seemed a bit surprised.

Nearly 200 infertile advocates took over the hill on May 11th, changing the conversation.

Nearly 200 infertile advocates took over the hill on May 11th, changing the anticipated conversation.

But now, we are all back home. We have returned to our day-to-day, returned to hosting our support groups, returned to our own personal struggles with infertility. The question that we now need to focus on is no longer, how will I get my representatives to support better infertility coverage? We did that. We got their attention. We even made CNN.

tapper

Jake Tapper of CNN covers our Advocacy Day and push to get #IVF4Vets.

The question is now, how can I continue to remind my representatives that #IFAdvocacy is not just a day – it is a movement for social change, a move towards family-building, a move towards reproductive social justice. How do we do this though? How do we bottle up all of that energizing spirit and tap into it on a consistent basis?

13230315_10154236330306742_2925500788373099402_n

Elizabeth, visiting Rep. Walhberg’s (R-MI) office for the third time to ask him to support #IFAdvocacy.

Think about it as a monthly bill that you have to pay (and doesn’t yet have automatic bill payment setup). Pick a date in your calandar. Perhaps it is the 11th since we met with our reps on the 11th. Give yourself a monthly alert on this date to connect once more with your represenatives. Send out an email, send a tweet. Take those business cards you received and email their aids. On Father’s Day, remind those our representatives of how hard this day can be for those looking to build their families. On Thanksgiving and Christmas, do the same. Be an advocate all year long. This takes work.

 

 

We know that it does. But if we want #IFAdvocacy and #IVF4Vets we need to hold ourselves and our representatives accountable. In the words of Rep. Tammy Duckworth, the hill is our house. Let’s be sure to demand to our representatives that infertility coverage is something we are putting in our house.

Rep. Tammy Duckworth (D-IL) speaking at the morning training session about her own personal story with infertility while serving in the military.

Rep. Tammy Duckworth (D-IL) speaking at the morning training session about her own personal story with infertility while serving in the military.

Last Call for Interviews in D.C. Next Week

A week from now, Advocacy Day will be over. However, your story can be shared to promote #IFadvocacy throughout the year and beyond, by recording an interview for our oral history project. Maria and I are scheduling mini interviews on Tuesday May 10 and Wednesday May 11 and would love to hear about your infertility journey.

ART-of-Infertility-ArtifactThe interviews will be short, about 30 minutes in length including a quick photo session, and we invite you to bring along an object that helps you tell your story. Maybe it’s a photo of the embryo that became your child, the journal you kept, a necklace you bought to remember a baby you lost, or a bill from your clinic. You can read a bit about our sessions at Advocacy Day last year at this link.

If you’d like to share your story with us, please fill out the Google Form found here. After today, we’ll be looking at all of the responses we receive and will contact you with your interview time slots. Due to the tight schedule, it’s likely we won’t be able to talk to everyone while we’re in D.C., but will work with you to record your story at a later time if we can’t meet up next week.  We hope to hear from you and look forward to seeing you in D.C.!

Elizabeth

Share Your Story with the ART of Infertility in Washington D.C.

In exactly one week, we will be in the Washington, D.C. area for RESOLVE: The National Infertility Association’s Advocacy Day. For those in the area or those who are traveling to D.C. for Advocacy Day, we invite you to consider participating in the ART of Infertility project. This project will be traveling around the U.S. this year sharing your inspirational infertility stories at a variety of venues and events — some directly related to the topic of infertility and some interested in storytelling from a broader vantage.

Renee, Annie, Elizabeth, Maria, and Jo at the wrap up reception during Advocacy Day.

Renee, Annie, Elizabeth, Maria, and Jo at the wrap up reception during Advocacy Day in May 2015.

These interviews in D.C. will be brief — 30 minutes at the most. And we invite you to bring an object that helps you talk about a part of your story. In the past, these objects have ranged from a tattoo, to a quilt to even a poem. We invite all objects and all stories. You can read and hear snapshots of interviews from last year’s event, here.

If you are interested and would like to participate, we ask that you fill out this brief Google form. We look forward to meeting new and old faces in D.C.!

 

Myth – Infertility awareness is only important for one week in April.

Last week was a big week for us, it was National Infertility Awareness Week. We believe in raising awareness about infertility year round and one of the biggest days of the year is right around the corner. What is it? Advocacy Day. It’s a day when those in the infertility community, and their friends and family, descend on Washington, D.C. and have meetings with their legislators, encouraging them to support the bills that will improve the lives of those with infertility by helping them build their families. If you’ve never done anything like that before, it might sound a bit scary. I’ll admit I was a bit nervous the first year I attended. However, that nervousness was quickly replaced with a feeling of strength and empowerment I hadn’t before felt in my infertility journey.

Maria and I attended our first Advocacy Day in 2014. It's where we met! Here we are with Maria's husband, Kevin Jordan, and one of my best friends, Sarah Powell.

Maria and I attended our first Advocacy Day in 2014. It’s where we met! Here we are with Maria’s husband, Kevin Jordan, and one of my best friends, Sarah Powell.

Advocacy Day is on May 11th this year. The deadline for registration is this Wednesday, May 4th. Have ever felt discouraged by the out of pocket expenses you’ve incurred due to your disease? Ever wished that there was more research being done about conditions like Endometriosis or PCOS that can contribute to infertility? Have you wished that there was more support for potential adoptive families? Have you thought it’s an outrage that there is a ban on IVF for veterans? If so, this is an opportunity for you to tell law makers how you feel and be a part of changing things for the better. Maria and I will be there, along with many of the individuals you’ve read stories about here. Candace Wohl, Judy Horn, Lindsey, Jennifer, Katie Lelito, Cindy Flynn, Brooke Kingston, Risa Levine, Angela Bergmann, and more. If any of these people’s stories inspired you, here’s a chance to meet them in person! I will happily introduce you!

Need more inspiration? Check out the videos below!

Please, meet us at Advocacy Day!

Elizabeth

 

 

 

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

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

Elizabeth

5 Things Infertility Taught Me About Parenting

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

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

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

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

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

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

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

2. Your Child Is Not You

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

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

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

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

 3. All Seasons Of Life Both Grow And Strain Relationships

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

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

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

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

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

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

4. Life is Both Precious And Fragile

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

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

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

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

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

 

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

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

 

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

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

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

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

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

#startasking How can I find support in my infertility journey?

Infertility can be one of the most isolating, lonely experiences out there. It’s essential to connect with others who “get it” but it’s not always that easy to do so. In today’s post, Sarah Powell shares the story of reaching her breaking point and reaching out for support. Several months ago, Sarah approached me about starting the ART of Infertility Pen Pal Project as a way to connect people with similar stories for friendship and support. So, we are happy to launch it today during National Infertility Awareness Week. Read on to hear Sarah’s story and learn how you can be matched with an Infertility Pen Pal who shares a similar path. 

Elizabeth

It isn’t all that often that people who are diagnosed with infertility are brave enough to share their story.  That is exactly how I felt when my husband and I received our diagnosis seven years ago.  At that time, my way of dealing with infertility was going to different doctors, four different clinics in fact, hoping that one would give me a different answer than the last. Then, taking a lot of time to research and process what they told me.  For the first few years, I barely talked to anyone about it, sometimes not even my husband, and dodged questions from everyone left and right.  I tried to put on a happy face at baby showers, birthday parties, family events, and with the pregnancy announcements of what seemed like EVERY. SINGLE. ONE. OF. MY. DEAREST. FRIENDS.  I emailed my closest friends and family and told them NOT to ask questions.  I didn’t know the right path forward and my husband didn’t know what to say and when to say it no matter how hard he tried.  Everyone who has ever dealt with infertility knows that you feel very, very alone and most times responsible with every failed test you get but need to keep forging forward with the rest of your life.  It is an AWFUL, ISOLATING feeling.

A lot of times in our lives, people near what we call our breaking point.  One thing happens and it just pushes you over the edge.  As it relates to infertility, I remember moments of mine, though not all the finite details.  It was a Saturday morning and my monthly visitor had shown up yet again when I would have given anything for it not to.  I woke up that day and was in an awful mood, likely yelling at my husband about everything insignificant, poor guy didn’t stand a chance that day.  Because I was in a bad mood, everything was overwhelming me, laundry, dishes, errands, the list went on – but they were really just daily tasks that suddenly became impossible.  I decided to do some dishes and was at the sink furiously scrubbing glasses, crashing down plates, and almost throwing the pans.  At that point, my husband who was trying to be helpful said something related to infertility or my period coming or something like that and then I BROKE.  I remember almost falling to the floor, sobbing and having him pick me up and carry me to the couch where I just sobbed and sobbed for what seemed like hours.  I tend to not share my feelings, and while my husband was doing his best, he wasn’t the one responsible for my infertility and he wasn’t infertile himself.  I realized I needed to find someone like me, someone who could understand my diagnosis, someone who could relate.
Sarah, top left, on the "Contribution Tree" in the first ART of Infertility exhibit at Ella Sharp Museum in Jackson, MI 2014.

Sarah, top left, on the “Contribution Tree” in the first ART of Infertility exhibit at Ella Sharp Museum in Jackson, MI 2014.

 I searched and searched the Internet.  In a world that has become so electronic and saavy with social media, I was shocked to find there wasn’t an easy way for me to reach out to others with my disease. I wanted a phone number, an email address, something. I tend to be an introvert so it’s not easy for me to connect to people, it was very daunting.  Add the taboo subject of infertility and it made it that much more difficult.   I did find information on support groups in my area – but just kept the information in my mind for several months because I was TERRIFIED.  Eventually, after much coaxing by my husband, I did attend a meeting but lets be honest, meetings and support groups aren’t for everyone.  I realized that there has to be an easier way for those to connect privately from their own homes to people who are like them.
I realized I needed to find someone like me, someone who could understand my diagnosis, someone who could relate.
Sarah and Elizabeth at Advocacy Day in 2014.

Sarah and Elizabeth at Advocacy Day in 2014.

As a result we are happy to introduce the Infertility Pen Pal Project.  This project will allow us to connect individuals on a one-on-one basis who have similar backgrounds and diagnosis. Friendships in the infertility arena can become difficult because while the goal is for people to find success, if you are one of the ones who hasn’t yet, you struggle between being happy for your friend but sad for what you want so badly.  We want to be able to connect you to people who are where you are, and reconnect you with someone else if you just don’t click or your penpal finds success and it’s hard for you to handle.  We are hoping this project will help some overcome the feeling of being alone when talking to a group about your story is too much.  Since this is National Infertility Awareness Week, we encourage you to #startasking for what you need so you can get that support. We hope that the pen pal project will make it a little easier for some of you.

If you are interested in participating, fill out the web form at this link and we will be in touch.