Breastfeeding after IF – Natalie’s Story

August is National Breastfeeding Month. Breastfeeding may not be the first thing you think of when you hear the word infertility. However, there are a variety of ways that barriers to breastfeeding/breastmilk and the disease intersect. Throughout the month, we’ll spend some time exploring the topic. In today’s post, Natalie Higginbotham shares her experience with breastfeeding after infertility, including the challenges that she encountered due to polycystic ovary syndrome (PCOS). This post does contain a picture of a baby and parenting. Thanks, Natalie, for sharing your story! 

Breastfeeding After Infertility
by Natalie Higginbotham

Soon after my son Atticus was first born, I remember a flurry of nurses and medical staff trying to help him breastfeed while I was in the recovery room. I had just come out of a cesarean section, and was very loopy from the medicine I was given to help relax. A nurse held an oxygen mask to my face telling me to take deep breaths since my blood oxygen level was taking longer than normal to come back up. All I could focus on was my new baby boy, trying to make sure he had the opportunity to breastfeed. One of the biggest concerns I had going into my c-section was the possibility of it negatively affecting my ability to nurse.

After I settled into my private room, one of the first nurses to visit us was a lactation consultant. We’d met once before in the Breastfeeding and Baby Basics Class. She came in and congratulated us. She proceeded to say how she was just in another mother’s room who was in the same boat as me. Apparently, polycystic ovarian syndrome  (PCOS) and c-section births do not coincide with an easy breastfeeding journey. Due to hormonal imbalances, some women with PCOS have difficulties maintaining an adequate milk supply. With so little going in my favor it was important she visit often during my hospital stay to give me the help I needed. She instructed me to pump after every feeding, and to pump every couple of hours – even in the middle of the night.

Luckily, my body responded well to all that pumping. My milk supply came in after I got home, and I seemed to have no issues nursing. I have a few friends who needed to stop nursing early on, due to the pain or other problems. I was so happy that overall, I didn’t really have any excruciating pain or issues that kept me from nursing Atticus.

Natalie and Atticus - Breastfeeding after InfertilityFor me, breastfeeding was about so much more than just feeding my baby. After years of not ovulating and abnormally long cycles from PCOS that led to failed cycle after cycle; breastfeeding was my opportunity to let my body do something right for once. As it turns out, my body finally knew what to do and did it well. I found it very rewarding to be able to nurse and bond with my long-wished-for baby. His conception and birth didn’t go as planned, but at least I was able to provide him with nourishment like I hoped for. I went from being angry at my broken parts to proud and happy with my body’s ability to do something right for once.

Coming up on fifteen months of our breastfeeding journey, infertility’s influence is still present. I am trying to wean my reluctant toddler. Nutritionally speaking, it is perfectly fine and he doesn’t need to nurse. However, he still very much relies on it for comfort. In a way, so do I. Breastfeeding my long-fought-for baby has been such a reward. The bond we built breastfeeding provides solace and mends all the brokenness infertility caused.

We want to begin another frozen embryo transfer (FET) cycle in hopes of giving him a sibling. I am not allowed to breastfeed while on the many different injections the cycle requires. Understandably so, I don’t want him pumped up with residual in-vitro fertilization medicine any more than I want to feed them into my own body. The pressure is on now to wean him.

I enter the end of our breastfeeding journey with some uneasy feelings. I worry that we will wean and go on to do our FET only for it to fail and weaning be all for not. I worry that he is the only baby I’ll get and I’ll regret weaning him sooner than he was ready. In a way, I don’t want it to end, because that means my baby isn’t a baby anymore. Watching my baby grow up is a strange mix of pure joy and heartbreak. Joy in seeing him thrive and heartbreak in missing the tiny cuddly newborn that is grew up way too fast. I’m savoring these final moments of nursing and my baby wavering into full on toddlerhood. Either way, I know I’ll look back on our breastfeeding journey with joy, happiness, and comfort in all it has meant to me after a three year long battle with infertility.

Read more about Natalie’s story at http://www.ivf-mama.com

Do you have a story of breastfeeding and infertility that you would like to share? Please contact us at info@artofinfertility.org.

Rising Ever Upward

Today’s guest post, by Justine Brooks Froelker, is another example that there are all kinds of ways to find success after infertility. Thanks, Justine, for sharing your story!

Rising Ever Upward
by Justine Brooks Froelker

My alarm goes off at 4:14 am. I am one of those people, it must be set on a 4. Just one of my things I suppose. Admit it, you have at least one of those too.

I do the affirmations of my morning routine despite it being so early and my early flight looming. I figure I can read and meditate on the plane. My eyes feel heavy and my stomach is already growling, both quickly combining in me becoming one hangry person.

“You got everything?” my husband Chad asks as I am sitting on the floor getting as many puppy cuddles as I can before I leave for 5 nights on this first leg of the my tour.

“I think so,” I reply as tears fill my eyes.

4 am alarm.

Hungry.

Goodbyes.

A dream full of risk and knowing realized.

All making for me feeling all the feels.

I have been in the mental health field for 18 years, the last 10 of those spent in private practice. Just a few weeks ago, I all but closed my practice to head out on tour to 8 cities nationwide over the next two months offering my Rising Ever Upward workshops and intensives based on the research of Dr. Brené Brown, shame and vulnerability researcher.

I have been a Certified Daring Way™ Facilitator (CWDF) for over 3 and half years, meaning I am one of only about 1500 CDWFs worldwide who are trained and allowed to do Dr. Brown’s curriculum. For the first two years of the work I guided my individual clients through the curriculum. For the last year I have held small group intensives in my office. And now, I am taking the work on the road in what many would call the biggest risk of my career. Risk or not, to me, it is my calling and an obedience to my truth, God’s plan, and the power of this work.

It is also only the beginning.

Justine Brooks Froelker

The work of Brené Brown is all about living, loving, leading and parenting in an authentic, brave, and wholehearted way. In other words, it is the engaged life we all yearn for but aren’t quite sure where to start. This work saved me five years ago after my own failed infertility journey of tens of thousands of dollars spent, three lost babies, and an ending no one wants, dreams of, plans or paid for. This work has given me the language and the skills to dig my way out of a darkness I never thought I’d see the light of day from. This work lives in me, has settled into my bones, and is in every cell – modeling it and teaching it to others is an honor, privilege, and something I simply cannot not do, especially in and for the infertility community.

Most of all though, this work is in honor of my story and of my three.

Last week, I kicked my tour off in St. Louis, and already, the ripples of people showing up, being seen, and living brave are changing the world. See for yourself in Michelle’s testimony:

IF you’ve ever struggled with feeling stuck, or on the cusp of something good or even great, but unable to take the next step, unsure of how to muster the courage to move forward;

IF you’ve struggled with shame or been frozen in place because of fear of what others will think, or fear of failure, or fear of rejection;

IF you’ve let your past define your present or limit your belief in your future;

IF you’ve ever played a tape in your head that says, “I’m not good enough, thin enough, smart enough, young enough, strong enough.

IF you want a new story for your life and you’d like to be the author of that story;

Then Justine Froelker’s Rising Strong Workshop is for you. It’s life-changing, transformative – the real deal.

Like millions of people, I’ve read Brene Brown’s work and listened to her renowned Ted Talks on shame, fear, courage, vulnerability and living a whole-hearted life. And each time I did, I thought: I would love a blueprint to implement those ideas and that research into my life. And then I quickly went back to my old ways of thinking

In this workshop, Justine takes Brene’s work and helps you apply it through a process that you can implement immediately to your own life, and then apply it over and over again. You literally write a new story.

Within days of finishing the workshop, I stepped out of my comfort zone and took action on my novel in progress. I pushed through the fear of what others will think and pulled the trigger on some things that will help me bring it to fruition. And I’ve implemented some simple (not easy, but simple) daily actions that are already changing how I interact with friends and family.

Those self-limiting tapes, that crap playing in my head, keeping me from chasing my dreams with all I’ve got and limiting my connection with others? They’re not completely silenced (yet), but now I know where the damn mute button is. 

~Michelle C.

If you are ready to live more wholeheartedly, love more deeply, be more engaged in your relationships, and more brave in your business, come see me on tour this summer, I still have 5 cities left.

And, make sure to follow at www.daringinstl.com and www.facebook.com/justinebfroelker for future St. Louis dates.

Finding My Inner Warrior

Today’s guest post is from Taylin Beechey. Taylin says, “I found your website and found the idea of sharing pieces of our stories from our infertility experiences to be a beautiful idea. Along my journey I have kept a lot of writing about my experience as a young woman having been born with a rare birth defect leaving me unable to conceive with out IVF treatment. Four years later, I am pregant and I would love nothing more then the opportunity to share my story in hopes that someone, somewhere will find comfort in knowing they are understood, That they are not alone. I have attached my story in hopes you could read it. Thank you so very much in advance.”

So, we’re sharing Taylin’s story with you today.

Finding My Inner Warrior Through Infertility

Taylin Beechey

It took me a long time to decide if this was a story I ever wanted to share or not. For me, sharing wonderful beautiful things in my life has always been easy and I am sure it makes many assume I am a completely open book. Sharing the hard stuff though…that’s my real struggle.

The stuff that leads you to that dark place that we don’t like to talk about. For me, it’s mostly because of how uncomfortable it might make someone else feel. What if they don’t know what to say? What if they feel awkward around me after? No… I better keep it locked up to myself.

Taylin and her husband, Josh, in 2015. Photo by Devon C. Photography

That was then, this is now!!! I have come to realize that although there WILL always be people who it makes uncomfortable, maybe there will be one woman, one man, one couple that feels understood in a way that I didn’t. For me, that’s worth it.

There are some moments in life that we will always remember as vividly as the second they happened. For me this will always be the moment I was told I wouldn’t have children. Well the exact words were… “You have a rare birth defect and if you where my daughter and had XXXXX amount thousands of dollars I would do IVF today! Otherwise it would be advisable that you explore other means of starting a family.” Divine intervention must have taken over as I will never really understand how I even made it home that day. That 45 minute drive from my clinic is one I have no recollection of.

I can say for my 28 years I’ve lived and learned through my fair share of pain. I lost a parent, I’ve loved people who struggle with addiction, dealt with my fair share of mean girls, had more than enough heartbreak to last a lifetime.  Nothing on this planet has rocked me like those words coming out of the doctor’s mouth. The loss of a dream of a child you haven’t even met yet is a pain I cannot express to you on paper. It’s your whole life’s dreams wrapped up and tossed in a waste basket. A million thoughts go through your mind as a woman.

Wasn’t I born to do this? Am I not good enough to be a mother?
Is this punishment for something wrong I have done?
Maybe I could be that childless lady, the one with the really nice white furniture instead!
Why me? Why us? Will my husband still love me?

It is a spiral of thoughts, questions, and blame.  Trust me when I tell you that the level of CRAZY, we women are capable of, would scare most men ha ha. Nowhere else in life would a person be expected to experience this amount of pain and hide it. We mourn death, we rally around victims of disasters, we start interventions and support groups for addiction.  Infertility though, it’s in its own category. One that makes us feel we should be quiet. God forbid we make someone else uncomfortable due to our sadness.

Perhaps we keep it so quiet because the response to our pain can be so hurtful. I have lost count of the number of times I was told to stay calm. “STAY CALM IT WILL HAPPEN.”  CALM YOU SAY? How about I fire you from your job, rob your home, kick your car. “Now just stay calm.” How does it feel for you? Light or heavy? Those are all replaceable things. This child that I will never have and am mourning is NOT REPLACEABLE!!!!  So NO I will not be calm!

In fact, if your reading this do yourself a favor and be the complete opposite of calm. YELL! THROW A PILLOW AT THE WALL. USE A COUPLE OF WORDS YOUR MOTHER WILL DISAPPROVE OF! HA, HA, but really it’s true because I’ll tell you this pain, it’s deep and the only way to survive it is to let it all OUT! When you say this to us it’s actually insulting, and trust me when I say I know you meant it with so much love. I really do, and I’m thankful that you care enough to say anything at all. It’s not helpful though and it truly isn’t kind.

Taylin with her friend, Melissa Holman, at the cottage. Taylin says of Melissa, “My rock. A friend who spent weekly teas with me and was there for the years of finding out I was unable to have children and through all of my infertility treatments & later success.”

We don’t share our pain because we would hate to have it dampen your joy. We worry that maybe next week you won’t invite us to that baby shower, or Johnny’s first birthday. This also is not helpful. I do understand the logic and there were days when being near a child’s birthday would have done me in, but let me make that call. As there were also hundreds of days that my friends’ and family’s children were all that kept me going. I would look into their big glassy eyes and think, “I’m not giving up because this face is so worth everything I will have to do to get there.” So if you’re looking to do me a favor, do this. Let me hug your child a little longer, let me hold their hands when we all cross the street. Let me feel the magic that is a child who looks at you like you’re the coolest person they have ever met. I was blessed in this category by my friends and family who allowed me to love the hell out of their babies. I know you know who you are and am I soooo thankful. Your children saved me in ways I can never thank them for.

1 in 8 couples will experience infertility issues. This means someone you know right now is struggling. So please be kind don’t ask the newly married couple when they’re having babies. Don’t ask the partner who already has children if their spouse is the issue. Do not tell your friends how amazing it is that you just decided to try for the first time ever on Friday and BOOM had a positive test the following Monday. But do tell us your pregnant. Trust me, behind the pain we are so joyfully happy for you.

Do show us how much you love your children. it gives us something to keep fighting for. And, do as my friends did… hug me on bad days and celebrate with me when my day finally comes.

Infertility is a long and mostly dark road full of financial stress, needles upon needles upon needles, ultrasounds, and more doctors’ appointments than I can count. Sleepless nights of worry and prayer, tears, and breaks to catch your breath.

There is no right way to grieve a child that will never be. To mourn. To struggle and to face getting through each day. All I can say is feel every wave, the ones that have you unable to breath and the ones that allow you to float for a little while.

I don’t have the answer for why this is happening to you. I only know that the person who comes out on the other side will be the most bad-ass version of yourself you have ever seen. I know this because my biggest struggle as a mother came before my child had even been born.

You have a warrior inside of you that will blow your mind. I have done things in the past three years I would have never believed possible.  My husband and step-daughter look at me some days like I may be Wonder Woman and then I stop and think, “Hell, I kind of am!!”

Taylin, center, with husband Josh and step-daughter, Claudia.

I am 1 in 8. A soon-to-be mother, an IVF Warrior, a woman who will never be willing to take no for an answer. I’m surrounded by some bad-ass women and a wise step-daughter, a loving husband and some strong men, supportive family and one talented fertility doctor. And let’s not forget those above me, clearly sending down some love from the heavens!

I pray that if the moment ever comes and you’re in that doctor’s chair, that you know it’s ok to be weak. It’s ok to be scared. But, mostly importantly, it’s ok to let people in. This is where we find out what our relationships are really made of. At the end of your journey you’re going to want the people standing next to you to be the ones who weathered the storm with you. I have found my people through this pain and I have found some real beauty in this world along the way.

xox
Taylin

Waiting for Babies

Today’s guest post is from Steven Mavros, L.OM, the Founder of the Healing Arts Center of Philadelphia, and the producer of a new podcast called “Waiting for Babies.”

Maria and I met Steven when he came to check out our exhibit, SEA-ART-HEAL, in Seattle a couple of months ago. The three of us immediately connected over our shared desire to make infertility more visible by collecting and sharing oral histories. So, Maria and I were thrilled when he invited us to Philadelphia to partner on an art exhibit this fall. The exhibit will run November 3 – 28 at the Old City Jewish Arts Center.

We’re working hard to outline all the programming and the event dates and times, including a film screening and art and writing workshops. However, we’d love to start by introducing you to Steven. We’d also like to extend an invitation to you, to share your story of infertility through visual artwork and writing you have created. You can learn more by checking out our Philly event landing page.

Read Steven’s story of creating “Waiting for Babies” below. Then, give his podcast a listen. We’re particularly fond of his recent episode about Jessica (A).

Waiting for Babies
by Steven Mavros

15 years ago, when I first started practicing acupuncture, I never set out an intention to work with couples or individuals struggling to bring a child into their lives.  In my first month, a new patient brought me a study done in Germany detailing how using acupuncture before and after the embryo transfer of an IVF procedure raised its success rates.  She asked me to come to her fertility clinic and replicate what was in the study which I was happy to do.  When you’re first starting a practice you say yes to everything of course.  Thankfully, her physician was amenable and open minded enough to let us take up space in their office for something that was brand new in their world.

That study spread both among patients and the fertility doctors and suddenly I found patient after patient asking for this type of help as they’d heard I’d done it before.  Interestingly, there was also some evidence that acupuncture would be helpful for those who were just trying on their own or doing things that were less complicated than IVF like IUI or artificial insemination, so a lot of patients started coming in before they made it to IVF. Still, almost every week I would get a phone call (always the day before because they never got more than that amount of notice) and I would wake up earlier in the morning then I normally would and go to one of the fertility clinics and do some acupuncture.

Steven Mavros is an acupuncturist, founder of the Healing Arts Center of Philadelphia, and the creator of the new infertility podcast, “Waiting for Babies.”

Here’s how it would go: at the clinic I’d meet my patient and often their husband or partner.  The three of us would sit together in the waiting room until one of the nurses would come and tell us that they had space for us to do acupuncture and the woman and I would go back to do the treatment.  Afterward, I would sit in the waiting room for what could’ve been twenty minutes or could have been three hours for the procedure to be finished.  Then I would go back into the room to do a slightly different acupuncture again.  Needless to say I spent a lot of time waiting in clinics.  I often read both a book I brought and every magazine possible.  There was no handy internet in the pocket then.

This was such an intimate moment I was privy to. It was also extremely intense as the procedure they were about to have was in some ways the culmination of a lot of effort, time, money and emotion that they have been putting into trying to conceive.  At these treatments I would get a first-hand view as to what the couple’s relationship was like.  Some were what I’d consider healthier than others.  Sometimes they fought on the morning of and sometimes it was the most loving and caring thing I’ve ever seen. Sometimes there was no relationship because it was a single woman trying on her own or her partner didn’t show up or didn’t want to show up for reasons I didn’t always get to know.

To add pressure to everything the woman had to have a full bladder for this procedure. This always lead to a classic scenario.  I’d be sitting with my acupuncture case, the woman sitting next to me with her legs crossed three times around like eagle pose in yoga and the partner sitting next to her just twiddling their thumbs waiting for everything to be over. The nurse would come out and tell us that they were running a little bit behind and the woman would squeeze her legs together even tighter because she already had to pee and was both nervous and getting even more uncomfortable. Then, almost without fail, the partner would stand up and say “Ok, I’ll be back, I have to go to the bathroom.” To which the woman would always just roll her eyes and laugh and I would look incredulously at someone who clearly didn’t understand the concept of solidarity.

There are so many moments and so many little things that are both hilarious and heart wrenching sitting there with all of these patients and I realized that their stories are so intense and emotional and yet no one outside of that room knew what they were going through. So I thought the best idea would be to write a book and to try and tell their stories the best way I could.  I’d add along some anecdotes and things that had happened to me along the way.  But after hitting so many walls writing, I realized that I was trying to tell a story that wasn’t mine. I was trying to tell their story and that would never work because I didn’t have all the information. I don’t know what came before and what was to come afterwards. I didn’t always know how things turned out as sometimes I only got to see them in that one intimate moment and never even found out if the procedure worked.

So I decided the best place to hear that story was from the patients themselves. Waiting for Babies was born.

Pregnancy and miscarriage, IVF and artificial insemination are not actually new concepts to our American society, but given how little is talked about it you would think that it was. When it comes to medicine, we are so intensely private.  Did you know that in America there’s really no ritual or common healing practice for someone who’s had a miscarriage? Many other cultures have them to give you at least a playbook as to what to do when this happens but we miss that in America. And most of the time people bottle it up and keep it within the partnership which often doesn’t help either of them.  And it’s so much more common than you think as is this whole field. One in eight couples or individuals trying to get pregnant are having difficulties like this.  Most likely someone you know has either been through it or is going through it right now. I want to open that conversation and get all of this information out there to show just how human this whole process is and what some people are going through. I was to shed some light on how hard it is when something that for everyone else takes a very quick momentary interlude in life, but can take those struggling years and years.

It’s time someone shared their stories as there are so many more who are still waiting for their babies.

Launch Point

Ben Holladay-McCann shares some of the challenges he and his husband face as gay men building their family. Read how they decided which option was best for them and how creating art is playing a role in their quest to become parents. Thanks, Ben, for sharing your story!

Launch Point
by Ben Holladay-McCann

From a young age, I knew that fatherhood was something I aspired to. The fact that I’m gay never phased me or stood out as an obstacle to achieving that dream. Sure, I knew it would be a challenge — the scales are tipped in favor of heterosexual people – though I’ve always been of the mind that any journey worth dreaming about is a journey worth taking, no matter the odds.

Ben (right) with husband Erik. Photo by Kendra Stanley-Mills.

Erik, my husband, shares my dream of raising children together. At first, we had explored the idea of adoption, which, though an awesome and noble avenue to take, can prove hugely challenging for LGBT folks. Most countries outside the U.S. will not adopt to gay parents. In a strange twist of happenstance, the governor of Michigan signed legislation permitting faith-based adoption agencies to discriminate against LGBT parents not long before we relocated to Colorado. Our home state is not unique in that regard, as several other states allow the application of the petitioning couple to be denied based upon nothing more their sexual orientation.

Though adoption was quickly removed from the table, we uncovered a new and more fundamental truth that lived deep within us; holding a genetic relation to our child was of greater importance to us than we had first known. With that in mind, having a child through IVF via gestational carrier as the path to parenthood was the only logical option for us.

Making the decision to pursue that route was the easy part, though it is not without its own unique set of challenges. Like so many others, our biggest roadblock was attached to the price tag. I remember staring slack-jawed at the full sum once everything had been tallied up. The total cost of IVF treatments is positively eye-watering. Resources to lighten the load do exist, though the majority are geared towards heterosexual couples. Most applications for grants or financial assistance list “husband” and “wife” on the form, rather than “partner’s name”. Even “Parent 1” and “Parent 2” would work in a Suessical pinch.

To complicate matters further, information about LGBT-inclusive adoption agencies can be tricky to find. Surely you can understand our sheer joy when we found an aptly named organization that exclusively helps gay men who want to have a child through IVF – “Men Having Babies”. Using the tools on their website, we poured over all available information and researched many different organizations nationwide before selecting InVia Fertility, out of Chicago. With that important line crossed off, we could turn attention back to the elephant in the room: how make this happen financially. As money savvy as we fancy ourselves to be, our piggy banks wouldn’t provide enough of a springboard on their own. We had to broaden our sights to help make this dream real.

Ben and Erik, surrounded by loved ones. Photo by Kendra Stanley-Mills.

Education is an important component of any fundraising effort, and we are not unique in that regard. As a part of this process, we have sought to bring awareness and information to our friends and family. Try as we have, however, some have made the assumption that adoption, rather than IVF, is the end goal. On more than one occasion, well-intentioned people have asked “what country will you adopt your child from?” or “have you met the birthmother yet”? We are surrounded by people brimming with excitement for us to become fathers, though some may be unaware of the complicated nature this road holds for us. Launching a crowdfunding site hosted by YouCaring.com has provided an effective platform to keep our loved ones up-to-date on our journey while serving to dispel any mysteries surrounding IVF and what that looks like for us.

Ben’s passion for knitting is helping build his family. Photo by Erik Holladay-McCann.

More creative means of capital generation are also supplementing our crowdfunding efforts. I have been a knitting hobbyist for years, though this new adventure of ours provided me the push to begin selling finished works and patterns of my own design, under the brand “NoahNoa Crafts”. Though a seemingly unusual brand title, it was born from the love that my husband and I have held for the name, Noah, for years. When translated from its original Hebrew roots, it embodies “comfort”, while its feminine variant, Noa, signifies movement. It only seemed a natural fit, as those are two qualities I love most about knitting, and hope to model to the children we bring into the world. While getting a small start-up such as this off the ground can be time-consuming and occasionally stressful, it is ultimately rewarding, which is not entirely different from parenthood.

Follow Ben and Erik’s family building progress on You Caring and shop NoahNoa Crafts.

Persistence in the Age of Resistance

Today, May 18, is Infertility Advocacy Day. This year, RESOLVE: The National Infertility Association, is teaming up with the American Society for Reproductive Medicine. Nearly 250 constituents have gathered from around the country to fight for improvements for those living with infertility. Long-time advocate, Risa Levine, is among them and shares this message with us as today’s guest blogger.

To my fellow advocates,

We are at a strange place in our history for women of our generation.  After the dormancy of the post Viet Nam war era, we are finally seeing a reawakening of political consciousness, a resurgence of social activism in an era when most public engagement has been reserved for Super Bowl ticker tape parades. We are seeing people take to the streets outside government offices, we are seeing hundreds of thousands of women marching all over the country. And we are seeing crumbs of response. Bill O’Reilly is history. That’s something.

Most of us don’t remember the sixties, a time of anti war protests, suspicion of government, overthrowing of a well established social order. A time when “burn your bra” was not just a symbol or catchphrase, but a revolutionary, engaged act of actual resistance to social norms that far eclipsed the message attempted to be sent by wearing knitted pink pussy caps.

But for the most part, the resistance agenda has been reactionary, one of anger, fiery Roman candles in the night. An affirmative legislative agenda has not quite yet been identified and the methodology has been murky. This era of #resistance was triggered by one man, and the mistreatment of one woman. But there are myriad inequities that have been brewing for a long time. Occupy Wall Street reflected those divisions but failed to achieve meaningful change beyond sloganeering. Similarly, the signs at all of the recent marches range from reproductive rights to immigration to LGBT rights to guns – while all require respect for people, the only proposed solution, dump trump, doesn’t address the underlying problems.   “Resistance” alone, is not solutions-based.

Risa wth Gloria Steinem, her first role model, getting out the vote in PA

Anger – when properly directed – is good. Anger can be motivating. Anger can spur people to turn off the TV and take to the streets. But that “fight or flight” adrenaline response to anger without proper outlets, a cogent agenda and a clear end goal, can become unhealthy. And unrequited. The problem with resistance, like the mantra of the 60s, “never trust anyone over the age of 30,” is that it will, by definition, fail, as the aging process is scientific fact.

While our efforts to address the fundamental unfairness that is experienced by infertility patients should be – and because of some of our advocates’ efforts sometimes is – an issue for #resistance, it is more an exercise in Persistence. A diagnosis of infertility IS a pre-existing condition that could bar one from obtaining health insurance if the House legislation were to pass the Senate, but even the most liberal outlets neglect to include infertility on their comprehensive list of diseases that would bar infertility patients from coverage: we have much work to do to educate even our natural allies. Let’s not forget that.

However, when we hit Capitol Hill, we aren’t coming only from a place of adrenaline-producing anger. Anger at the unfairness, sure. But we aren’t acting merely in opposition to the current zeitgeist. We aren’t seeking confrontation. And we aren’t simply fighting a misogynist agenda. We are promoting education, family values, long term protection and science.  We are seeking to right a wrong practiced by both parties for decades. We are in it for the long game.  We are fighting for families. For traditional values reinforced by modern scientific advances. Love and Science, hand in hand. We must be above partisanship. We are above the divisions in this country. We personify Persistence.

Risa with Hillary Clinton in New York City: Discussing Matters of State.

Whatever your personal feelings about where we are at this very, very historical juncture, on May 18, stay focused on the positive. We are advocating FOR something. For more rights for ourselves and for our families. For future families.  For our military. For the safety and integrity of our bodies. We come in peace – we simply need to know that our health concerns are being addressed. We do and we will exercise our voting rights if we aren’t heard, but we come as constituents with problems that Congress can address. Ask them for their support. But don’t leave without their understanding.

 

 

The Art of Balance: Loss and Love

Today’s post is from Maria’s Mother, Therese. Thank you, Therese, for sharing with us.

The Art of Balance: Loss and Love
by Therese Novotny

When Maria asked me to write a blog post for Mother’s Day, I gladly agreed, but the task was thornier than I thought. As her mother, it is difficult to talk about infertility because I never know what to say. My words get mixed with love, longing, and loss.

The day after Maria was born, her Aunt Joanne brought a small bouquet of Brown-eyed Susans to my room. Those yellow petals always remind me of Maria. Nearly 25 years later, she planted some in her back yard in Grand Rapids. When I helped her move from that house for Kevin’s new job, she left the flowers behind, but more seriously, she left behind a dream of raising children there. That dream had not been fulfilled, despite all their painful, heartfelt efforts. It was a loss.

Therese with Maria on her first birthday.

The art of balancing Maria’s trauma, supporting her needs against five other children, is difficult.

First, my background is full of big families. I embrace the interests of all of my children, their friends and spouses. Even though my life on the outside looks traditional in the extreme (suburban, white, Catholic, middle aged, mother, wife), I am very curious about how other people choose to live out their lives. I’m very open to other life choices and respect them – and it often gets me into trouble.

Maybe this is the wrong thing to say, but I don’t understand Maria and Kevin’s need to have a child of their own. I enjoyed feeling a baby kick inside my body and giving birth to a new tiny person, but there are other ways to give birth. You can give birth to an organization, or nurture a latent talent within yourself, or adopt a child who deserves loving parents. Many women who have birthed children have severely neglected themselves, their talents, or even others around them… and that is also a loss.

Finally, I feel helpless because I can’t help them change their infertility. I need to find new avenues of support. I can support them in their new home, their upcoming projects, their dogs, and their careers. I have been in situations where I can change some things, where I need to advocate and change and struggle. But some things I can’t change. I need to know the difference. I’ve learned to grow where I am planted, even if I can’t do very much.

After Easter, my father sent me a card of a famous Monet painting. I have always thought of Maria in that painting. She is the child standing in a lush field of flowers, so tiny, she blends among them. She is perfect. Why does she not see it?  She is part of a bouquet prepared for the world to enjoy.

Infertile couples are made to feel they are broken or incomplete. They feel cheated and scammed and misjudged. They are miserably misunderstood. They have a right to feel that way, but sometimes the broken, slashed parts of us are unavoidable.

At the risk of saying the wrong thing, I offer the well-known parable of the broken bucket.

In a small village in China, a man collected his water from the river, which was about a mile from his hut. Each morning, he attached two buckets over each side of a long pole, which balanced over his shoulder like a yolk. The bucket hanging from the left side retained all the water, but the one on the right was cracked and full of small holes.  When he returned home, the bucket on the left had not lost a single drop, but the bucket on the right had leaked half its contents, with half dripping through the cracks.

One day, the sturdy bucket taunted the cracked bucket jeering, “I am the real bucket here. I do what needs to be done, while you are a broken piece of junk. You just cause the man sorrow because you can barely bring back half the water, and still, you make the man carry you. You are mostly a burden to him. You are just a sorry excuse for a bucket. ”

The man overheard this one day, when he was eating his meal.

So the next day, he carried the broken bucket outside to clean it, and the bucket said, “Why do you keep me? You know I don’t carry all the water home. Am I worth all the effort?”

Touching the holes in the bucket’s side, the man said, “Every day when I carry you to the river, I take the same path. Sometimes the heat is unbearable. But, do you ever notice the flowers growing on the side of the path? They bring me such joy. I’ve always known you had leaks and holes. I always carried you on my the right side. That way, I knew you watered the flowers. In spring, the shoots to grow. Eventually, I see the leaves, and then the petals unfold; I smell the perfume of their scent, and I see beetles climb into the leaves for shade. The other pot – he only brings me water, but you – you bring me joy.”

Maria and Therese today.

My hope for my daughter, as she struggles with the raw sadness of infertility, and as she hears the voices of those who make her feel broken, is that she is perfect… she is my joy. She is a flourishing part of our vast family garden. Love has surrounded her for years, and will only continue to enfold her.

Gearing Up for Advocacy Day – Andrena’s Story

Thanks so much to all of you who applied for our The ART of Infertility Advocacy Day grant! We wish we had the funds to help everyone who applied. The staff at RESOLVE: The National Infertility Association, was kind to choose the recipient and chose Andrena King who will be representing the state of South Carolina! In today’s post, we hear a bit about Andrena’s infertility journey and what she’s been doing to advocate for change. Thanks, Andrena, for sharing your story!
-Elizabeth

My husband Chris and I were married October 2013 and we decided to try to conceive two years ago. After actively trying for a year we started the process of getting basic tests done to make sure everything was working fine. One of the initial tests showed that I had a blocked fallopian tube so I was immediately referred to a fertility doctor by my gynecologist. Everything was happening so fast that initially I felt numb. I held my tears in until I went back to work and had a major breakdown in my supervisor’s office. I was heartbroken and afraid. 

We had a terrible experience at our first consultation. It was like we were on an assembly line. We were rushed in and tossed to people we were meeting for the first time who seemed more concerned about signing us up for the next group of couples getting IVF. My husband and I were devastated and no one cared. So, we took matters into our own hands and started doing research. We started our search for other fertility specialists in the area and reached out to friends who had overcome infertility for guidance. I found the RESOLVE: The National Infertility Association website and was blown away by resources available there.

While reviewing our health plans, we realized that our benefits included the opportunity to receive a virtual second opinion online. We had our tests and charts reviewed by a fertility specialist. While he couldn’t confirm that my fallopian tube was actually blocked, he did rule out male factor infertility. We found another fertility doctor that was a great fit for us. Our new doctor was recommended by mutual friends. As we talked during our first appointment, we knew we were in the right hands by his compassion and his ability to explain options. He advised that the next step was to have a laparoscopy done to see what was actually going on.

During the surgery, it was discovered that one of my fallopian tubes was severely damaged and had to be removed. The damage was due to a previous surgery I had to have a cyst removed while I was in college. My left fallopian tube was blocked by a cyst so that was also removed.  We felt optimistic after gaining answers from the laparoscopy and decided to move forward by taking fertility medication and trying on our own for two months. The third month, we had our first IUI which wasn’t successful. Month four brought another unsuccessful IUI.

Based on what the doctors said, it was the perfect opportunity for us to conceive because everything was in place. We were very disappointed and decided that mentally, emotionally and physically we needed a break. We are currently taking a break from treatments and have become very involved in raising infertility awareness in our community.

While busy with treatments and doctor appointments, I recognize the limited access to resources and support in my city related to infertility. After seeing the guidelines needed to start a support group, my cousin and I decided to start a RESOLVE Peer Led Support Group in Columbia, SC. Our first meeting was held in August of 2016. The group is one of two in the entire state of South Carolina. When our journey started, Chris and I quickly realized that our insurance plans would not pay for any of our doctor bills or treatments. This set back and financial burden prompted us to advocate to change this injustice, not only for ourselves but for others in our state. After months of meeting with legislators, the S.10 Legislation was pre-filed in December of 2016. The bill requests that insurance companies cover the diagnosis and treatment of infertility procedures. The legislation has some exclusions but this is a big step in the right direction. The legislation is currently in subcommittee waiting to be discussed by the Senate and House. We have great support from our family, friends, co-workers and non-profit organization WREN (Women’s Rights Empowerment Network) advocating with us to get this legislation passed.

I applied for the Advocacy Day grant to bring awareness to the lack of insurance coverage, legislation and support in my state for families trying to conceive. This has to change. I’m looking forward to learning how to properly interact with legislators to advocate for others on their journey to parenthood as well as collaborating with others who as passionate as I am about making a difference in our states. I hope to gain new friendships, guidance and be empowered to continue to advocate for others.

Chris and I remain positive that we will one day become parents as we rely heavily on our faith in God, prayers and support from loved ones.

20 Days After Miscarriage

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

20 Days After Miscarriage

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Man’s IF Holiday Perspective: It’s All Relative

Kevin shares his thoughts on dealing with infertility and the holidays. As a guy, he finds solace in dealing with infertility through his work – whether that is intellectual or hands-on. Read more about the inspiration Kevin took from deer hunting this past year.

This November, I went deer hunting for the first time. While sitting in the woods, patiently waiting for a deer to walk past my blind, I began to read Einstein’s biography.  The book discusses in detail Einstein’s two theories of relativity – general and special. His special theory of relativity is what challenged Newton’s long held traditional concept of absolute space and time. Through a series of mathematical equations and experiments, Einstein disproved Newton and instead demonstrated that space and time were relative to the observer – not an absolute concept. For example, someone moving inside of a train will have a different experience than someone standing on the side of the road watching the train go by.

Kevin, sitting in his blind, deer hunting.

Kevin, sitting in his blind, deer hunting.

Reading this in the woods, I couldn’t help but see how much of this theory also relates the experience of infertility.  My wife and I have were diagnosed with infertility 5 years ago. That moment was life altering and brought upon itself a host of questions we never imagined we would have to think about. Today, we often have to remind ourselves that there is no absolute right interpretation or method of dealing with infertility. Just like Einstein’s theory: infertility is relative to the observer. Every year around the holidays, this topic comes up for us as a couple. Often we may be experiencing things differently, and we may have different ways or methods to make the holidays work in our minds. Let’s face it, this holiday is all about the birth of a child and it’s a tough one for the infertility community.

For me, and I would imagine many other men out there, talking explicitly about infertility is not really our way of coping and channeling our energy into something positive. Personally, over this year I have focused a lot on work and have been afforded some unique experiences to travel and live my passion of being a medical physicist. I have also poured myself into renovating our house that we bought as a symbol of our love and what we share together, even if we never have children of our own. This is extremely important to me.

A garage entrance that Kevin remodeled into a living room.

A garage entrance that Kevin remodeled into a living room.

I do not think we should despair over having different ways to make these holidays doable, but we should rejoice in that we share in this experience together. There is somewhat of a beauty in thinking about Einstein’s theory and that there is no absolute correct way to interpret and cope with infertility. However, it is comforting to know that a common thread is that the infertility community all shares this experience together. I hope everyone else out there can use this as a bit of consolation and uplift as we head move into a new year.