Some time ago, my 2 year old daughter threw an unexpected temper tantrum over dinner at Disneyland. This may not sound like an unexpected thing to you, after all this is a a 2 year old we are talking about, a 2 year old being forced to interact with actual food at the happiest, tantrum capital on Earth. So you're right, the fit itself was absolutely to be expected, it was the impact it had and what it taught me that was so surprising.
It all started with a carrot. Snow Pea was dining on peas and baby carrots quite happily during dinner, carefully chewing each bite in hopes of scoring dessert at the end of her meal. Then, just as she was opening her mouth and about to tip the last carrot in, it fell to floor. She lost it. Completely melted down. "My carrot! I need my carrot!" Doing what any well-meaning but absent minded parent would do, I explained that the carrot was gone but it would be ok. Look! You can have dessert now! You didn't finish the last carrot but you get chocolate pie! But she didn't want chocolate pie. She only wanted that carrot. That last bite she was so ready for, but that had been taken away by an unfortunate combination of gravity and unrefined motor skills, was all that mattered. It was the first time I saw my daughter truly sob. Big, fat tears rolled down her face as she bawled, "my carrot! my carrot!"
I did not know what to do. I kept trying to comfort her, calm her down, but nothing helped. Until finally, I picked up the poor, lost carrot and let her hold it in her hand. I explained that she couldn't eat it and she just looked at it, took a big sigh and then put it on her plate. She stopped crying and asked quietly for a bite of the pie. And then I realized, it wasn't the carrot itself she needed, it was closure! My 2 year old reminded me, in what may seem like the silliest way, just how crucial of a need that is to all of us when our heart is set on something that we no longer get to have.
Since our third failed FET at the end of last year, I have struggled with my emotions and the unrest at not being able to decide what our next move will be. Chad and I had originally agreed that if December failed, that we would be done with trying and just live as a family of 3. But when I met with my RE we discovered that I had a uterine polyp that was a very likely culprit for the previous failures. After that I was very quickly scheduled for surgery to remove it and have my also potentially damaging tubes removed.
That was in January and my brain has been a yo-yo ever since. To cycle again or not? To be focus solely on my one, wonderful child or to do this just one more time? That last failure left me feeling so broken, so defeated, I really haven't wanted to go through it again. But then there was the surgery and with it that possibility that my body actually is capable of doing this again. I have gone back and forth a million times. More than anything, I want to be done with this phase of my life. I want to be out of the limbo that infertility creates and move forward to something else, whether that is with one child in my arms or two. But what I learned from the carrot is that I need closure to do that. And I know deep down that with the surgery success and embryos still in the freezer, that closure will never come unless I take the plunge again. I will always wonder "what if?" and I can't truly move forward with that in my head & heart. I have no doubt that I will be crushed if this still doesn't work. I will cry, I will hurt, I will mourn but I will find peace knowing that I can allow myself to let go. I can pick up that carrot that is my dysfunctional body, heave a big sigh and grab a bite of chocolate pie instead.
Most anyone that with access to social media the past day or so, has no doubt seen the heartwarming headlines about the birth of comedian Jimmy Fallon's daughter, Winnie, via surrogate. The infertility community in particular, is buzzing with the hashtag #thankyoujimmy and celebrating the celebrity's openness about the struggle with infertility that he and his wife endured for five years before finally welcoming their child.
With infertility still a taboo and misunderstood condition, and the treatments for it often even more so, it is the rare celebrity that speaks out so candidly about having struggled to become a parent. And anytime an actor, musician or public figure is willing to share this personal part of their lives, I am grateful. Grateful because their voice is frankly more public and therefore louder, than mine. I can blog all day long about how it feels to long for a family that you fear you may never have, how emotional and exhausting the treatments are, about the heartbreak of trying and failing or succeeding only to lose what you worked so hard for- but I will never have the reach of someone like Mr Fallon who has thousands of fans across the globe and a recent Emmy nomination. So when he shared the real, honest and emotional things about his and his wife's struggle it really meant a lot to me and other infertile men and women across the country.
Every time a celebrity "comes out" about their infertility, the rest of the world gains just a bit more understanding. Ordinary people who may have had no trouble conceiving, are able to see that infertility really can affect anyone. It also opens up conversation and I often have friends and family become curious and ask questions about what infertility really means, how a treatment actually works. Walls come down and silence is broken. Celebrity confessions take the disease itself out of the shadows. They encourage those of us that have been suffering in silence to share our stories with friends and families.There is so much good that comes from speaking out and celebrating all of the ways families are made. For that I am and always will be grateful to Jimmy and have respect for him.
I do however, have some concerns about his remarks as well. The first and most obvious being the one that comes up in just about every celebrity infertility story- their access and ability to afford treatment. In his interview, Jimmy encouraged anyone struggling to have a child to try every avenue in the quest to become a parent. But as we all know, that just isn't a realistic option for everyone. Infertility treatments are very rarely covered by health insurance and even when they are, often have caps that would prevent many people from ever being able to afford expensive options like surrogacy. I consider myself incredibly fortunate that my husband and I had the resources to assist with our IVF and FET cycles, but for many that option just doesn't exist, let alone more expensive treatments like egg donation or surrogacy. If it were up to me, we would all have the option to "do whatever it takes" as Jimmy encourages, because cost wouldn't be the barrier that it currently is, but we have a long way to go in making that a reality.
The other concern that struck me immediately, even before the cost barrier, is what his message of hope and never giving up must sound like to the childless community. To those who have already tried everything they are financially and emotionally capable of trying and have decided that a life without children is the best resolution to their infertility, the constant barrage of "always keep trying" becomes a dagger in the heart. It seems as if the rest of the infertile community is accusing them of giving up. It unintentionally alienates and discounts a large part of our community and can be very painful. I understand completely where Jimmy was coming from when he said what he did about not losing hope. As someone who has fallen on and off the hope wagon herself, and finally realized her dream when hope was at an all time low, I know that feeling of relief that "one more try" really did do the trick. It's a message that so many of us desperately need to hear when we are in the trenches. Hope is pretty much the only thing that keeps many of us going some days. And often because our own hope is depleted, it is messages of support and encouragement from others that gets us through. Hearing Jimmy Fallon, or anyone that has been through it, tell you to keep going, keep trying because you will end up with a family and that all the work is worth it, it's the most worth it thing, can be powerful, inspiring and give you hope when all seems lost. But it can also feel like a slap in the face to someone who has already moved forward from treatment and onto adoption or to finding other "worth it" things to make their lives complete.
Of course, I don't mean to imply that Jimmy Fallon meant any ill-will or has done anything wrong. He doesn't have any sort of obligation to anyone and I appreciate the way he empathized and showed support for fellow members of this community. I applaud him for his heartfelt openness and congratulate him and his wife on becoming parents. But I do wish to see more conversation and understanding about the concerns I mentioned, as well. I hope that the positive reaction he has received in the media and from his fans encourages more discussion, more education and more change with the way infertility is regarded and that one day this illness is no longer something to "come out of the closet" of. Thank you, Jimmy, for sharing your story and for being a voice. And to all of you who aren't necessarily famous comedians or producers, or even suffering from infertility- thank you for speaking out, thank you for taking the time to read and learn more, thank you for being involved, thank you.
I am proud and honored to serve as the Event Chair for RESOLVE’s inaugural Walk of Hope
in Southern California. It is incredible to have this opportunity to
raise awareness about the disease of infertility, to support those
suffering through it, and to share HOPE with everyone whose life
infertility touches. It is my hope that this first annual Walk of Hope will see not only those goals achieved, but will also pave the way for a future in which infertility will no longer be a walk that anyone is forced to face alone.
Six years ago, when my husband and I decided to start a family, we
never dreamed of the roller coaster of tests and treatments that awaited
us. Not knowing where to turn and being too afraid to reach out for
support at first, I began blogging in order to cope with our infertility
battle. It was through my blog, “Ready to Be a Mom”, that I
found RESOLVE and the wealth of support and resources they provide to
all of the 7.3 million Americans suffering from this heartbreaking
disease. The more I learned and became involved with RESOLVE, the more I
realized just how deeply infertility impacts so many families. Each
time I share my story, I learn about an aunt, brother, best friend, son
or cousin who is enduring the struggle to become a parent. Even if it is not you that suffers from this disease, with 1 in 8 affected, someone you know probably does.
RESOLVE has helped me to uncover my passion to help all of those
faced with infertility and to serve as an advocate for this community. I
want to be sure that everyone that participates in the 2013 Walk of Hope
feels cared for and supported, no matter where they may be in their
infertility journey. I want to reach out and provide support to the
newly diagnosed, the patients in treatment, the families pursuing
adoption, parents who fought to get there, and individuals who resolve
their infertility by living child-free. I want every person that faces infertility to know that they don’t have to face it alone.
On September 29, I will walk alongside men and women from all over LA, San Diego, Orange County and beyond in the Walk of Hope
to honor each one of our unique journeys. I will walk for my daughter,
who would not be here without the amazing advances in reproductive
technologies. I will walk for those who shared their struggles with me
and supported me when I shared mine. I will walk for those still
suffering in silence. I will walk to raise awareness that infertility is
a disease that affects millions of people from all walks of life. So
whether to honor your own struggles or to support a loved one, please join
me at beautiful Aldrich Park on the University of California campus in
Irvine on September 29, 2013 for a beautiful and symbolic one-mile walk
to show support, raise awareness and most importantly, to spread hope.
To create your team visit www.resolve.org/socalwalkofhope,
select “Start a Team” and following the directions. Then send an
invitation to your family and friends so they can walk with you on your
journey.
I have been thinking a lot recently about how amazingly fortunate I am to be a mother. I often think about what I went through to get here and so many other hopeful women and men facing their own struggles with being involuntarily childless. I hate that any of us have to live that term but I love how accurately it represents what the experience is truly like and I am so grateful to the sociologists I referenced in my literary review for coining it. Language is a crucial part of any cause and using the right language can make a world of difference in reaching those in need and enacting change. With that said, I truly think the term "involuntarily childlessness" is an important and deeply relevant term that needs to be used more within our community.
Yes, infertility is still a very important and powerful term. It gives us a medical diagnoses, a definable issue to understand to dissect and try to cope with. But for me and I think for so many others who struggle with "infertility", the term itself leaves us feeling incomplete. It doesn't quite encompass what our struggle is really about. It is the word that isn't quite the word you were looking for, but settle on when the right one never makes it off the tip of your tongue. It's good but not good enough. It acknowledges that those of us unable to easily have children are facing something real and big and difficult but it leaves so much more out. It isolates those of us that can conceive but suffer from tragic losses. It discounts entire groups of women and men who find themselves ready, willing and wanting children but not in a socially acceptable position to have them and therefore afraid to or unable to actually try. It fails to include those feeling a new surge of pain at a disrupted adoption, a failed cycle, a canceled donor or a lost pregnancy. It leaves out the millions of people struggling month after month who have yet to pay a visit to a doctor and receive an official infertility diagnoses. Most importantly, it fails to adequately name what matters most to those who are facing it. Specifically, people with infertility, often don't care about being infertile as much as they care about not having children despite wanting them more than anything. Infertile is second to being involuntarily childless.
At least, that's how it was for me. When I did the research for my paper and found that term, it really spoke to me because that is how I identified myself over just about everything else. I have an official diagnoses. I know exactly why I can't get pregnant on my own. I am medically infertile and it definitely matters to me. I have gone through my fair share of feeling betrayed by my body, being angry at myself, feeling like less of a woman, less of person for being unable to conceive. But conception was always the smallest aspects of the mountain of emotions I felt when struggling with infertility. What mattered to me more was that I wanted to be a mom. I wanted a child to care for, to raise, to clean up after, to spit up in my hair, to kiss, to set curfews for, to cuddle, to love. What broke my heart on every holiday, every weekend outing, every quiet morning wasn't a medical term but the deep feeling of sadness at wanting more than anything a child with whom to celebrate and experience all the wonderful and all of the every day joys of life, but having empty arms anyway.
I know there are so many women and men out there who have felt that pain who might not consider themselves "infertile". Who don't know about RESOLVE, don't attend support groups or seek medical care. Maybe they just aren't there yet or don't want to face something so daunting or scary. I will never forget opening up to a friend about how emotional and difficult it was trying to conceive and how broken-hearted I was about being infertile. At the time I hadn't been officially diagnosed or started treatment yet. Because of this, she tried to comfort me that I wasn't really infertile. I didn't have to do anything crazy like IVF (gasp!). But despite my lack of diagnoses, I still clung to the term because I knew what I was going through was more than just "TTC". I had been on that road for far too long and been through far too much pain. I was involuntarily childless. I wonder if we integrated that term into the discussion on infertility and loss more often if we might be able to reach more people in need of support. I also wonder if we might be able to better reach those who have never had to experience a life of involuntary childlessness and allow them to more easily empathize and understand our experiences. Yes, some infertile people adopt, some have babies through ART and some never have children but what we all have in common is that none of us chose to be faced with those decisions. We all grow up presumptively believing that one day, when we are ready, we will be able to be parents. It's just a given. But for 1 in 6 of us having children doesn't turn out to be something automatic and instantaneous and I think this term helps convey that.
Of course, I don't want to throw the baby out with the bathwater. The term "infertility" is still very real and very needed. Just as infertility does not encompass the entire experience, neither does the term involuntary childless. Secondary infertility is very real, very prevalent and very important. I in no way wish to discount the very emotional struggle of parents facing difficulty conceiving for the 2nd, 3rd or even 4th time. Infertility still matters. I am still faced with it nearly every day and will be swimming in it again when I go back for another FET to hopefully have a second child one day. While I still am and always be infertile, I am enormously blessed to no longer be involuntarily childless. These two terms, while incredibly similar aren't exactly the same and I pledge to do my part to acknowledge and provide support and advocacy for both experiences.
