Let’s Remember Advocacy Day Is Just the Beginning

Posted on May 13, 2016 by admin

Empowering! Exhilarating! Amazing! Awe-Inspiring!

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.

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?

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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.

Reflections on Practicing Self-Care This Mother’s Day

Posted on May 6, 2016 by admin

For Mother’s Day, Elizabeth and I decided to practice some self-care. The past year has felt a bit like riding a rollercoaster (hoping to hang on) in both our personal lives and the ART of IF. Next week, we will be in D.C. for RESOLVE’s Advocacy Day as well as collecting some more stories for the project. In preparation for another busy week and as a way to refuel our batteries, we are posting our Mother’s Day reflections a few days early. On this Mother’s Day weekend, the two of us will be taking time away from social media. This is for two reasons. One, we know how hurtful social media posts can be around Mother’s Day (and Father’s Day). Two, we are both practicing self-care this weekend — taking time to breathe and reflect on where our infertility journey’s have led us. Below we share our reflections on how we are embracing a moment of self-care during, what can and historically has been, a very difficult day for us to get through. – Maria & Elizabeth

Elizabeth’s Reflection:

Scott and I got married on May 1, 2004. I had dreamed of a fall wedding but in order to get the venues I wanted, I would have had to wait nearly two years after our engagement to tie the knot. I wasn’t willing to wait that long. I was ready for us to be family.

We didn’t set out in our marriage to have children. We were both undecided. Five years in, we took the plunge and decided to try for a baby. That was just over seven years ago but can feel like a lifetime. I have a photo of the two of us in a silver plated frame on my desk, embracing on our wedding day. Sometimes I look at the photo and barely recognize the people smiling back at me.

Photo by Elli Gurfinkel

It was May 2013 when I had my first frozen embryo transfer. We’d planned on a fresh a couple of months earlier but I had internal bleeding and ovarian torsion after my egg retrieval, requiring surgery. We’d have to wait. Scott gave me my first ever progesterone in oil shot on Mother’s Day. It was both fitting and horribly cruel. As mothers around the country were receiving bouquets of flowers and home made cards marked with their babies’ hand prints, I was being stabbed with a giant needle, just to have a chance that my future would include being celebrated on Mother’s Day.

Later that month, I was surprised to see two lines on a home pregnancy test. I’d broken down and tested the night before my beta and I’m so glad I did. It allowed me extra time to enjoy finally being a mother. I found out I was pregnant on Tuesday night. By Friday afternoon I knew my beta numbers were going down instead of up. I was experiencing an early miscarriage.

This weekend, Scott and I are traveling to New York City to celebrate our wedding anniversary and, hopefully, give me a chance at avoiding the emotions that come along with Mother’s Day. I hate Mother’s Day. I feel badly because I have a mother and a mother-in-law I love and who deserve to be celebrated but it’s just so hard to do on a day that excludes me. So, we’re mixing things up this year.

Another thing I did differently this year was bought myself a Mother’s Day gift. I’d been admiring some necklaces by Lisa Leonard Designs in my Face Book feed for awhile when the Mother’s Day ad onslaught began. One ad told me that Mom would love a necklace personalized with her child’s name for Mother’s Day this year. I started thinking about how crappy that made me feel and then decided that I deserved a necklace with my “baby’s” name too. So, I ordered Mother’s Day necklaces stamped with artofif for both Maria and me. They arrived last week and we’ll wear them for the first time in D.C. on Tuesday.

I don’t know what the Mother’s Days of the future hold but I’m glad that I’ve learned to take care of myself on what can be such a difficult day. I hope that you are kind to yourself this year as well and would love to hear about anything you are doing to make Mother’s Day a little more bearable.

Maria’s Reflection:

My mom would normally be with Kevin and I on Mother’s Day weekend. Every year, she travelled from WI to MI for the International Congress on Medieval Studies. As a medieval scholar, this was her “big” conference for the year and it just so happened to take place close to my home in MI during Mother’s Day weekend.

Maria’s mom, Therese, helping Maria put on her veil on her wedding day. Photo by Sarah Stephens.

If it were just the two of us, Kevin and I would not venture out that weekend — taking strategic steps to avoid the promotional “Mother’s Day” brunches and “Mimosas for Mom”. But with my mom in town, we always felt obligated to take her out.

This year though, we won’t be celebrating with my mom. Shortly after her visit last May, Kevin got a new job and we put our MI house on the market. Ironically, we ended up back in WI — but not near our parents. As we pondered purchasing a home near Kevin’s new job in Madison, WI, we made the decision to make a different type of purchase — one heavily influenced by our journey with infertility.

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A picture of Maria’s dog, Gia, standing on the dock at her cabin.

In September 2015, Kevin and I signed papers for a small cabin in the woods of Northern Wisconsin. This had been a dream of ours for years, yet we never thought we could actually make this move until we were nearing retirement — not nearing 30. But sitting on top of the hill overlooking a small but pristine lake with our dogs wrestling around in the yard, we looked at each other and new this was the best decision we could have made.

The thought of moving into a suburb filled with young families, the thought of continuing to feel not quite normal because we didn’t have kids, the thought of being judged as “dog parents” — deeply influenced our decision to buy a place that could nurture ourselves, nurture our relationship and nurture our path towards the future (whether this is with children or not).

This Mother’s Day, we have opened up our little cabin to some close friends of ours. They recently experienced loosing their child at 20 weeks. Kevin and I were at the cabin when we got this news. It brought us to tears. While we never experienced a miscarriage, we know all too well what that type of lost feels like. Its guttural, its beyond pain, its total and complete numbness.

And so anticipating how hard a Mother’s Day weekend may be for our friends, we invited them up north. Our hope is that this weekend, we can all practice some self-care by taking time to breathe, reflect and nurture ourselves for the future paths we may embark.

Last Call for Interviews in D.C. Next Week

Posted on May 5, 2016 by admin

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.

The 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

Secondary Infertility, and Infertility a Second Time

Posted on May 4, 2016 by admin

ART of IF’s Robin Silbergleid reflects on treatment after parenting.

Secondary Infertility, and Infertility a Second Time
by Robin Silbergleid

The summers of 2009 and 2010, my daughter was five (and then six), and I was in treatment to try to have a second child, the sibling she kept asking for. What I remember of those summers: too many Saturday morning ultrasounds, when we’d race back home for swimming lessons and I waited for a call from the nurse, calls that frequently came at ill-opportune times, like during a playdate at the park or in line at the grocery store.

It’s not that undergoing fertility treatment is really any harder when you have a child. Infertility treatment is always awful. But there are unique aspects to the situation—logistically, socially, and psychologically—that first time infertiles don’t generally encounter.

1. Sometimes you have to be that woman who brings her kid to the fertility clinic. I will confess now that when I was trying for my first, I really resented that woman, especially if she had both husband and child in tow. (Really…couldn’t the husband take the adorable kid somewhere else?!) But as I came to understand while trying for number two, the rest of life doesn’t always stop for infertility treatment, and sometimes the kid who exists in the world needs to come before the kid who isn’t conceived yet. Sometimes you’re racing from the fertility clinic to swimming lessons. Or, like me, you’re a single parent or parenting solo for the moment, and don’t really have much choice other than bring the kid or skip a cycle. And sometimes your RE, who has a child the same age, asks your kid about her plans for the weekend while waving an ultrasound wand between your legs. It’s complicated.

2. Sometimes you have to deal with the sibling question. It really sucks when you’re desperate to get pregnant, giving yourself daily injections in the midst of an IVF cycle, and your kid who really doesn’t know what you’re up to (other than you take a lot of medicine and go to the doctor a lot) keeps asking for a baby brother or sister. You find yourself having difficult conversations about how sometimes even when you want a baby brother or sister, you can’t always have one. Sometimes you need to explain diminished ovarian reserve or male-factor infertility in terms that a five-year-old can understand. It would be incredibly funny, if it weren’t also so painful.

3. It’s harder to avoid babies and pregnant women when you’re doing family-related activities with kids. When I was in the thick of treatment, it felt like everyone around me was pregnant or pushing a new baby in a stroller. While that might have been mostly perception, I’d also venture to say it’s hard to avoid new babies at preschool gatherings and zoos and swimming lessons and pediatricians’ offices and all the places you take little kids, and you can’t opt not to go, the way I avoided baby showers when I was trying for my first.

4. Perhaps the most paradoxical aspect of trying for a second child is that the longing is concrete rather than abstract. This statement is not to lessen the desires of patients struggling to conceive a first, but to point out it’s a different experience to imagine yourself parenting versus already knowing what it means for you individually to parent a child. And if you are part of an infertility community—either online as I was, or through peer-led support groups IRL—you might feel guilt for wanting another. You’ve already had your miracle…are you really asking for another? But the desire to build a family, and the sense that yours isn’t complete, is no less real if you’re trying for two (or three) or number one.

Now I have that much-coveted second child who is now the age his sister was when I first started trying. I think often about how much of her preschool and early elementary school years I missed, not because I wasn’t there, but because my head was often somewhere else…mulling over IVF success rates and donor profiles or in a progesterone-induced fog. Even when I look at photographs of that time, I know what the images don’t show.

My Daughter Asks for a Baby Sister from the Tooth Fairy

In the photograph, she wears a yellow dress with a bow
to her preschool graduation; she stands
with her classmates and teacher, smiling wide.
She lost her first tooth last week. I put it
in an envelope in my nightstand, where I keep
test results and baby socks, good luck charms.
I slipped a gold coin under her pillow while she slept.
Today I stand with the other mothers
with their babies in strollers, in slings, my uterus
a clenched fist. I will not be having a child
in January. I will not be having a child
before my daughter turns six. Yesterday
my doctor scrawled recurrent pregnancy loss,
sent me for a blood draw. This
is what I carry with me. What I want
is to smash glass. What I want is to drink myself
into oblivion. But I take her out for ice cream,
go to the bathroom, change my pad.

Robin Silbergleid is the author of the recently-released poetry collection The Baby Book and the memoir Texas Girl both of which address issues of infertility, pregnancy loss, and single parenting. She has also written two chapbooks Pas de Deux and Frida Kahlo, My Sister; her poems, essays, and scholarship can be found in a number of venues, online and in print. Born and raised in Illinois, she holds both a PhD in English and an MFA in Creative Writing from Indiana University. She is currently an associate professor of English and Director of Creative Writing at Michigan State University. Robin frequently presents ART of Infertility writing workshops, conferences, and serves as a faculty advisor to interns. She lives in East Lansing, Michigan with her two children (and two cats).

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

Posted on May 3, 2016 by admin

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 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.

Posted on May 2, 2016 by admin

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.

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!