another

So you have this friend. And she has a child. Maybe she has a few. Perhaps her kids are a little older. Maybe they're still really young. But here's the thing. She wants another.

And it's just not happening.

Maybe she's been acting kind of strange - withdrawn, sad, distracted. So you asked her how she was doing and she started to cry...explaining that she's afraid her son will never have a sibling or that her dreams of a big family won't come true.

Or maybe she emailed you out of the blue, mentioning that she and her husband are starting fertility treatments and she's wondering if you'll pray for them.

It might have been a quick text - Sorry I have to cancel our plans for Friday. I have an appointment with my reproductive endocrinologist.

So now what? You're a good friend and you want to support her through this trial. But maybe you're not sure how, not certain what she needs from you.

I hope I can help you. Although I don't know what it's like to have secondary infertility (trouble getting pregnant again after having a child without the help of fertility drugs or assisted reproductive technologies), I do know what it's like to pursue fertility treatments when you already have a biological child. Plus, I'm in touch with lots of women who've experienced secondary infertility and have shared their hearts with me. Also, many of you who keep up with my blog have been there or are there right now. So whatever I miss or mess up in this post, I know you'll help me out in the comments section. Thanks in advance, friends.

But back to you - the support person. Here a four things you need to know in order to walk with your friend as she faces into this emotional, financial and physical trial.

One.   Please don't take lightly the fact that she invited you into this journey. She's taking a big risk and showing that she really trusts you. Oftentimes people who haven't been through it themselves really struggle to understand secondary infertility. A lot of people will call her selfish and ungrateful, probably not to her face but definitely behind her back. Many will question why she's willing to spend all kinds of money to have a child when she already has one. Others will judge her for not pursuing adoption.

Maybe that last paragraph has you sweating because you've been thinking those same things and getting all judge-y yourself. You know? It's okay. She's probably judging herself too. I know I was. I had this beautiful, perfect, longed-for child in my arms...but I still wanted more. It made sense and it didn't. I tried to dampen that desire, shut out that voice that was telling me that our family wasn't yet complete...but I failed every time.

The thing about building a family is that it doesn't always take the practical path. It doesn't always make sense. Because families are about love, something that's neither practical nor sensible. Your friend may try to explain why they want another child. She may list reason after reason to assure you (and herself) that the goal they're pursuing is a worthy one. You know what? You have the power to be her lifeboat in a sea of self doubt by saying the one thing she doesn't even know that she needs to hear. Put your hand on her arm and speak these words straight into her heart - "It doesn't even matter. This is your family and you get to pick."

See that look in her eyes? Yeah, she needed that.

Two.   If your friend is like me and has gone through fertility treatments before, know that this time around, it's going to be easier for her...and it's also going to be harder.

It will be easier because she already has a child. When she gets bad news from the doctor or a has another failed cycle, she still gets to tuck her little boy into bed that night or play at the park with her daughter. Probably nothing you can do or say is going to be more healing than snuggling with that child or those children. Kind of a relief, right? Delegate that stuff to the kids.

But it will also be harder because she already has a child. And fertility clinics frown on bringing kids to your appointments. So in addition to timing her cycles around her doctor's surgery schedule, her husband's travel schedule and her body's hormonal schedule, she also has to factor in child care. If she works outside the home, it's probably killing her that she has to spend even more time away from her kids. And fertility treatments are spendy, so paying someone to watch her children might feel like an incredibly heavy burden.

So if you are able to help her out, do it. I had several friends and family members who were more than willing to hang out with Harriet while I attended my frequent appointments. They'll never know how much Andrew and I appreciated their generosity and the kindness they showed our daughter. So if you can, be one of those people.

Three.   Your friend is going to be very, very, very tired. The fertility drugs will exhaust her. The constant appointments will wear her down. The hope/defeat roller coaster will drain her. If she's pursuing adoption, her days are filled with paperwork, home studies, phone calls with social workers, and the sort of waiting that only adoptive parents can understand. And she still has to be a mom to her kids. And probably lots of other things to lots of different people.

So if she doesn't want to join you for girls' night or takes forever to reply to your texts, please give her grace. I'm not saying that she gets a bottomless excuse for being a crappy friend. I'm just saying that for now, she might need you to stretch yourself a little further in her direction. She may prefer movie nights at home to loud parties because most of your friends have lots of kids and she hates that she feels jealous when she sees them. She may prefer conversations via text to in-person lunches so that she can stay in her pajamas. She may not be able to do those Saturday morning walks around the lake that you love so much because her ovaries are really angry with her right now. So again...grace, my friend. Grace.

Four.   You can't be everything to her. She's going to need a team. She has her doctor. Probably a partner (but maybe not). She is going to need people who have firsthand experience with secondary infertility. Encourage her to seek out a support group. Help her start a blog and get plugged into the online infertility community. (If she doesn't know how to find the community, send her my way. I'll hook her up.) Put her in touch with another friend who's fighting a similar battle. If she's having a really tough time, she may need someone to strongly encourage that she see a therapist or talk with a pastor, mentor or spiritual leader of some sort. Do not attempt to be everything to her. You'll end up bitter and your friendship will suffer. Instead, help her brainstorm ways that she can add people to her team.

That's all I have for now. But remember that online infertility community I talked about? They'll comment below and fill you in on everything else you need to know. The fact that you've made it through this whole post tells me that your friend chose wisely when she decided to share her heartache with you. I'm wishing you grace and courage and perseverance as you enter into the sacred heart of true friendship, a place where only trials can take us.

Grab her hand and go there together.

----------

Stay tuned for a guest post from a dear, dear friend of mine who walked this infertility road with me. I'm so excited for all of you to read her perspective on what it's like to be the support person. 

Also, this post is over on Momquery today, titled Four Ways to Support a Friend Through Secondary Infertility. So if you have some ideas about how friends and family can support those going through secondary infertility...or regular ol' infertility...copy and paste your comment there too! 

forgetfulness

I delight in my daughter. Being her mama is the most precious privilege I've been granted. But parenting can be stressful. Physically exhausting. Emotionally draining. It can bring out my insecurities and drowned me in guilt. It can raise the stakes for seemingly innocuous decisions. It can dampen romance. It can hammer out a cleft in a rock-solid marriage.

When I spend time with my friends who don't yet have kids, I often find myself wondering what it's like. Granted, it wasn't long ago that I was in their shoes. They may be perfectly content in the pre-parenting stage of life, but I wasn't. I was unhappy, pining for a baby, wishing away my childlessness. My current vantage point is so different, and I have to admit that...at weak moments...I even find myself fleetingly envious of friends who still have the freedom to travel Europe...or even just see a movie. I find myself wanting to trade places - just for a day or two - with those ladies who can wear bikinis without having to subject themselves to a three-week juice fast in preparation. I find myself imagining what it would be like to sleep in...like they get to do...twice a week. 

The friends that I'm talking about aren't struggling with infertility (as far as I know). But I have many friends who are. And here is the crazy, shameful, painfully honest part. I have to admit that their are times when I - even I with my history of loss, IVF and now secondary infertility - have to bury the impulse to encourage these women to savor their child-free days. In those clouded, worn-out, desperate moments, I forget that becoming a mother didn't take away the freedoms and privileges of child-free living...infertility did. My life changed long before Harriet came into it. Like a ruthless sniper, infertility took out freedom after freedom, privilege after privilege, years before my daughter was in my arms. And the same is true for my infertile friends.

When I long to have a figure that's ever-ready for swimsuit season...I must not forget that many of them have already lost the thin, fit bodies they were used to. Their tummies bloat and pooch from the medications, prompting strangers to ask when they're due. Their breasts sag and leak as a result of late miscarriage. Their arms and legs go soft due to exercise restrictions. 

When sex was excruciating for six months after giving birth and a doctor had to burn off scar tissue to prevent permanent damage...I needed to remember that intimacy can be nearly unbearable for infertile women. A doctor is deciding when and how sex happens. It becomes scientific and unfeeling. Something that is meant to be so private has gone public, and they are mourning that loss...lying with their husbands in beds that might as well be housed in procedure rooms, feeling so alone.

When my love for my daughter literally steals my breath and makes my heart feel like it's going to explode, when the fear of something happening to her rises to the level of spiritual warfare...I remind myself that my infertile friends do know that love and that fear. Many of their worst fears have been realized. They love their miscarried and stillborn babies every day of their lives. Many others know the agonizingly ambiguous loss of their dreams. They love the children in their imaginations. It is a real, powerful, mama bear love that should never be dismissed or minimized. 

When I find myself fantasizing about having the freedom to go on vacation, have a nice dinner out, or sleep til noon...I cannot forget that infertile women lost those freedoms long ago. The money, time and energy that should be spent on fun and entertainment is now being used for appointments, procedures and medications. They can't take trips because they need to be close to the clinic. Their diets are restricted in order to maximize their fertility. Early morning appointments steal much-needed hours of sleep.

When mommyhood creates distance between my friends and I, when I feel I can't fully focus on them because I have a toddler vying for my attention...I must never forget that the friendships of infertile women suffer as well. Girls nights are replaced with baby showers and birthday parties. Except these events are always about other people...and other people's children. Friends struggle to know how to help so they offer platitudes and unintentionally minimize the struggle of infertility. Infertile women then close in around their pain and their once-dear girlfriends pull back for fear of saying or doing the wrong thing. 

When my husband and I deliberate over discipline issues or public vs. private schooling...I must remember that infertile couples are agonizing over impossible decisions as well. Should they do IVF? Should they donate their extra embryos? Should they increase their medication dosage and risk multiples? Should they switch clinics? Ask their parents for money? Pursue international or domestic adoption? Foster care? Should they just stop all this madness and try to find happiness elsewhere? Their minds are exhausted. The pros and cons lists litter the kitchen table. They feel stuck in a land of maybes, ifs and shoulds.

It takes only a moment for me to remember what it was like to be traveling that same road. And that's when a sincere prayer - a head thrown back, fists clenched, begging prayer - sprouts in my soul.

Lord God, hand them their dreams. They have already earned their parent wings. They are fully mothering the children they're waiting for. Fill - oh, fill! - their empty arms.

a good patient

I'm kind of a good girl, a rule follower, an overachiever. Besides a rough patch in junior high, I have always worked hard to be a good student, a good friend, a good employee, a good wife, a good mom. But lately, another role has joined the list.

I want to be a good patient.

Really though, what does that even mean? What makes someone a good patient? What are the characteristics that increase an infertile person's chances of pregnancy while allowing her to maintain her sanity, life balance, and the respect of her medical team?

Hmmm...

Is it positivity? Confidence? Hope? When we first started trying to conceive our second child, I was a confident patient. Maybe even overconfident. I was at a healthy weight and my PCOS felt under control. I was coming out of a fairly easy pregnancy, a blessing of a birth, and a year of nursing. Hadn't I proved to the world that I was meant for this? That all of that infertility stuff had just been a misunderstanding? I really, truly thought I could get pregnant on the first try. I felt like we'd done our time in the infertility wilderness and now it was our turn to walk down easy street. Well, after sixteen months of trying to conceive and two medicated cycles, that overconfidence turned into...underconfidence. (Just go with it.)

Lately, I tend to be more of a skeptical patient. I question whether these treatments will ever work. I question whether we'll have another child. I question whether I'm even willing to do in vitro fertilization again. I wonder about our clinic, our doctor, and especially our lab. I wonder if books, websites, alternative treatments and other resources are just gimmicks. Can a good patient be skeptical? Negative? Doubting?

A good infertility patient has to be knowledgeable, right? She has to really know her stuff - drugs, diagnoses, tests, acronyms, clinic statistics, all of it. I often feel self conscious about my level of knowledge about my own body and infertility in general. I've read lots of books and I've done research online, but I'm not a science/numbers person, so I have a hard time remembering lab values, hormone levels, all of that stuff. I honestly can't even remember how many eggs successfully fertilized during our IVF cycle. I greatly admire my fellow bloggers who are rockstars when it comes to the science behind the drugs and procedures. I want to be more like them. They're good patients.

being a good patient by wearing this goofy outfit

I think a good patient probably needs to obey doctor's orders, but maybe compliance has a dark side too. I get nervous about coming off as annoying or demanding, especially since infertility clinic staff members often seem kind of jaded...like they expect us to be anxious, crazy, angry and pushy before we even open our mouths. I don't want to call my clinic all the time, asking about this drug or that test. But it's also hard to sit down on the infertility treatment conveyer belt and stay silent. I want to be the type of patient that advocates for myself. That's why I insisted on trying femara instead of continuing clomid (excellent choice) and also asked to be put on metformin (no clue whether it's helping).

But I'd like to be doing more. It all goes back to the knowledge thing. I just don't know what questions to ask or what protocols bring to the table. Here's a question I have for you - how much contact do you have with your reproductive endocrinologist? We haven't seen Dr. C since June of 2012 when we had a consult. We weren't even ready to start medicated cycles at that point. We just wanted a plan in place so that we could prepare financially. Not only have we not seen Dr. C for a year; we haven't even spoken with him since July of last year when we were starting the embryo adoption process.

We could ask for a consult with Dr. C at any time. But we'd have to pay upwards of $200 for it, and the truth is, I don't even know what we would ask him. I could also request a call from Dr. C, but I just imagine myself saying something like, "So you're sure we're doing the right thing with this femara/trigger/insemination protocol?" And he'd say, "Yep." And that would be it.

I'm also considering asking for copies of my medical records so that I can study my body, my condition, etc. The thing is - I'm pretty sure my hormone levels have always been within normal ranges. Well, I guess there was that one time when my prolactin was high and a nurse asked if I was engaging in excessive nipple stimulation. Um...no. And excessive? What does that even mean? But anyways, it  may be helpful for me to use my medical record as some sort of personalized textbook. Both my husband and my mom are nurses, so they could probably help decode some of the medical jargon.

I think another thing that keeps me silent on the infertility conveyer belt is the fact that when I've asked questions in the past, I've often been given really lame answers. I'll ask about diet, exercise, guys keeping cell phones in their pockets, caffeine, vitamins, complementary medicine...and 90% of the time, I get a wishy-washy, often patronizing responses.

"There's no evidence to support or refute that."
"If _______ helped, we'd recommend it to all of our patients."
"Just keep doing what you're doing."
And my ultimate favorite - "It depends on the person." I want to say, "Well, we are talking about ME here. Can you answer the question based on ME? And if you can't, just make it up. Whatever."

On Sunday, I even called into the "Gyno Show" on the radio and asked Dr. So-and-so what infertile people should be eating. I asked if there were any good books or plans for us to follow. His answer? "Each individual should eat whatever she needs to eat in order to stay healthy."

Quite the aha moment.

When I pushed a little bit, he recommended a Mediterranean diet and suggested cutting carbs, so at least I got something out of him. And off the air, the producer recommended I listen to another show, called Dishing Up Nutrition. The whole show was focused on infertility and diet, so I appreciated her sharing that with me. And it was also kind of cool to be on the radio talking about infertility.

being a good patient by braving the twice-daily shots for eight months

I'll venture to say that good infertility patients probably do a combo of Eastern and Western medicine. They're probably doing acupuncture, taking supplements and herbs, and getting Mayan abdominal massages. I used to do this stuff. I got acupuncture. I took a few herbs. I saw a naturopathic healer. But it is so expensive, and since I'm not willing to give up my meds, ultrasounds and inseminations...western medicine wins the money war. Also, sometimes it seems like once you open the door to complementary medicine, it's hard to stop. There's always another supplement to take, another specialist to see, another yoga position to try. It's exhausting. It's too much....which is ironic because with western medicine, it feels like it's never enough.

So again...what makes a good patient? Is it fortitude? Serenity? Being on time for appointments? Cutting out sweets? Mental toughness? A strong support system? Unshakeable faith? A willingness to take risks? Lots of money? Good veins?

Usually my posts are more about flinging my thoughts into the universe than about getting something back, but this time, I would love feedback.

How would you describe a good patient?
What would you do about the lack of contact with Dr. C if you were in my shoes?
Have you ever requested your complete file, and if so, was it helpful?
Do you have any stories about times you felt like a good patient or a not-so-good patient?
If you're smart about the science of infertility, what should be at the top of my "to learn about" list?
If you're into complementary medicine, what supplements or treatments would you recommend?
Do those of you in the health-care field have any thoughts about what characteristics make patients (of any type, not just infertility) more successful?

If your comment starts to get long, feel free to abandon ship and create your own post on this theme, then comment here with a link to your post. I have been thinking about this stuff so much lately and would just LOVE to hear what you wise, dear people have to say. Thanks in advance for joining the conversation!

--------------------------

Quick update: Today was a good day. I started by listening to the nutrition radio show I mentioned above. It was actually really helpful. Listen to it if you have time. And if you don't, maybe the quick little lists I made while listening will do the trick.

Eat:
butter, cream, yogurt, cottage cheese, ice cream and milk (make sure they're all FULL FAT)
wild rice
quinoa
steal-cut oats
black beans
lentils
fish
grass-fed beef
avocados
spinach
kale
broccoli
brussel sprouts
12-16 oz protein/day
nuts
olives
coconut oil
olive oil
almond butter
eggs
sweet potatoes

Don't eat:
soy
protein bars
lowfat anything
frozen yogurt
canola oil and other refined oils
sugars
trans fats
soda
pasta
cereals
cereal bars

I also had a baseline ultrasound today, and while I was there, I requested a copy of my chart. I'm looking forward to diving into it and seeing what I can find out. The nurse who attended my ultrasound was wonderful. She thought it was a great idea to get a copy of my chart, and she answered several other questions as well. She also told me some specific things Dr. C had mentioned about this cycle, so even though I didn't connect with him directly, it was good to hear from him through her. It looks like we will likely reconvene with him after this cycle or the next...but I'm really hoping there isn't a next cycle.

church

If there's one thing I've done a lot of in my life, it's church. 

I’ve fidgeted through seemingly endless elementary school chapel services.

I’ve caught the short-lived fever of confession and spiritual renewal at youth rallies.

I’ve sung from my soul in the darkness at Vespers in college.

I’ve sweated through my sundress at four-hour gospel services.

I’ve joined my spiritual family to worship under a tent the week after our beautiful church burned to the ground.

I’ve worshiped in whispers with an underground church community in Turkey.

I’ve tucked my head around the thick curtain of a Tibetan Buddhist monastery in Nepal and reveled in the intoxicating chants.

I’ve stood silently and breathed the wet, sacred air inside a ramshackle leper colony church outside Kathmandu.

I’ve visited the Vatican three times and have marveled at the mystery and majesty of that space.

I’ve spent many nights sleeping in the choir loft of a dear old London church.

I’ve been forever changed by witnessing Sabbath at the Western Wall in Jerusalem.

And now…I attend a massive church with several campuses and thousands of attendees. A church where I couldn’t name more than fifteen friends and most weekends, I attend services without seeing a single one of them. A church with stadium seating and its own coffee shop.

It’s a far cry from some of the other places of worship I’ve visited, but I love it. I love taking Harriet there and entrusting her to the kind-faced grandmother in the nursery. I love the loud music and that irresistible urge to not only sing along, but to dance a little too. I love gleaning the wisdom of the Word and of those who faithfully study it.

But there have been times in my life when church is the very last place I want to be. When I was small, sunny days tempted me into praying that the pastor would forget his last few points and let us out early. But as an adult, I’ve dreaded church the most on Mother’s Day.

I’m not sure why but churches make a big deal out of these parent holidays. They give flowers to the moms, candy to the dads. They share messages about how wonderful mamas are and how men need to step up to the plate. (I’m not sure why this is, but it just is.) Women and their little daughters dress in coordinating outfits while guys don shirts declaring “#1 Dad” and “World’s Greatest.” And all the while, men and women who are in the throes of infertility sink deeper into their seats and hide their broken hearts behind bulletins and Bibles.

So the year after Ethan died, I sent an email to my church leadership. I got the main template off of the Resolve website and then altered it a bit to make it more personal. 

Dear Pastors and Staff,

My name is Em. My husband and I are church members and have been attending and volunteering for about four years now.

As you know, Mother’s Day and Father’s Day are quickly approaching, and I’m sure you’re busy preparing your messages.

  

Please consider the fact that 1 in 8 couples of childbearing age are struggling with infertility. My husband and I have been personally touched by this issue. We became pregnant with our son, Ethan Andrew, as a result of infertility treatments. Sadly, we lost him at about five months gestation. We started treatments a few months after his death and ended up losing a second baby very early in the pregnancy. We are still undergoing infertility treatments and after much prayer, discussion, and research, we are currently in the middle of the in vitro fertilization process. I never would have guessed that nearly two years after we first started trying to conceive, we would have two babies in heaven, and none here on earth with us. Infertility takes an incredible toll on families - emotionally, financially, relationally, mentally, and spiritually.

Infertility has stolen so much from us - financial security, relationships, even aspects of our personalities. Infertility affects couples for years after their infertility journey, even if they are able to have children on their own. 

Unfortunately, church can be one of the most difficult places to be when you have lost a baby or are struggling with infertility. Walking by the nursery, listening to announcements about kids’ programming, seeing children everywhere, hearing pastors tell stories about kids, listening to a message series on raising children, attending parent/child dedications...it all can be painful and can make church feel like an emotionally dangerous place. Many religious and social events revolve around children, and couples without them sometimes feel uncomfortable or left out of activities altogether. Because the topic of infertility involves reproduction, it is an extremely personal problem that couples face. For this reason, it is often a very difficult topic to discuss, even with a trusted pastor.

Although infertility is rarely physically life threatening, it can be devastating to a person's sense of hope. Couples often endure monthly cycles of emotional roller coaster rides, ranging from optimism and excitement to despair and depression. Infertility sometimes lasts for years and people often go through this experience in isolation, as their desire for a larger family remains unfulfilled.

I ask that you keep these points in mind, particularly during worship services, and that you remember couples with infertility in your prayers just as you honor all the mothers and fathers in our congregation. Especially as you prepare your Mother's Day and Father's Day messages this year, please know that these particular holidays are two of the most painful days for those struggling to have children and those who have lost children. These days can also be incredibly painful for single people who have never had the opportunity to have children, parents who have lost grown children, and those who are estranged from their families.

One quick word about child dedications: Please always remember to announce them ahead of time so couples facing infertility and baby loss can either choose not to attend that service or can at least be prepared for it. Being surprised by a child dedication service is incredible painful. Our son Ethan would have been dedicated at the most recent child dedication service. Sitting in that service and seeing all of the other babies who would have been his peers brought me to tears. I am not sure if it would be possible to have flowers up front on child dedication days to recognize the babies who would have been dedicated that day if they would have lived, but I thought I'd throw the idea out there. I know that child dedication is a joyous time, and I do not want to take away from that. But up to 50% of pregnancies end in miscarriage, so chances are, there are many, many families in the audience who would be blessed by a simple gesture or recognition of their children in Heaven. My husband and I would be more than happy to contribute some money if that is an issue. 

If you would like more information about infertility, please visit the RESOLVE website at www.resolve.org.  

Before I close, I want to mention that one of the pastors contacted us the day after we lost Ethan, and two pastors came to our house with flowers and prayers. I have also sought prayer about this issue after services from the prayer volunteers and have been incredibly blessed by them. I am now an after-service prayer helper because I want to offer others the same encouragement the prayer volunteers have offered me. We love this church and have no complaints. But because we have been so deeply touched by this issue, I want to be an advocate for other childless moms and dads and those who want children but have yet to become pregnant. Even if you decide not to say anything from the stage or make any changes to the way child and parenting matters are handled, I think I speak for all of us dealing with infertility when I say that we will be very grateful if you keep us in your minds, hearts, and prayers.

Thank you in advance for your consideration in this matter.

Sincerely,

Em

Both times I sent versions of this email, it went unanswered. But a few weeks later, our senior pastor spent some time in his sermon talking about the many years he and his wife struggled to get pregnant. And since then, I have noticed infertility mentioned many times. I’m not in any way saying that this was a result of my email. In fact, they may have always been sensitive to this issue. Perhaps I just missed it when it didn’t yet seem to apply to me. At the time, I questioned whether I sounded whiny or self-focused, but in retrospect, I’m glad that I spoke up.

Feel free to cut and paste portions of the above email if you’d like to share it with your church leadership. But you might be better off visiting the RESOLVE website and using the templates they have written.

To all of my infertile friends out there, may peace follow you on Mother’s Day and Father’s Day. May you find a way to honor yourself and your struggle. And may church someday feel like the safe spiritual home it was meant to be…for all of us.

join the movement...validate

I'm realizing more and more that I am a voice for infertility. I'm not a loud voice or an especially unique voice or a brilliant voice or anything like that...just a voice. Many issues are close to my heart - the education of women around the world, racism, fighting the stigma surrounding mental illness...the list goes on.

But right now, infertility is my focus. Maybe it's because I'm in the procreating stage of life. Maybe it's because at least every other day, I hear from another woman who is struggling through infertility and loss. We are 1 in 8. We are everywhere.

But I've got to be honest. Sometimes, in moments of self doubt, I wonder whether my cause is worthwhile. Don't get me wrong. It's important. That's for sure. 

But it's not cancer.

It's not AIDS.

It's not domestic violence.

It's not starvation or malaria or sex trafficking. 

It's not killing anybody.

And maybe that's true. Maybe deaths directly related to infertility are extremely rare. Maybe it's never even happened. But if that's our measuring stick - whether anyone dies from it - then aren't our standards pretty low?

Infertility may not steal lives from this earth but it does steal dreams, joy and life savings. It steals emotional stability. It steals friendships and even marriages. Infertility can steal our self esteem, our careers, even our faith.

I remember reading a study that states that the rates of depression and anxiety in individuals suffering from infertility rival those of patients diagnosed with other very serious diseases, including cancer and hypertension. Infertility is an excruciating journey, one that seems to swallow our lives whole. It's surrounded by stigma and ignorance. Infertility diagnoses such an endometriosis can cause debilitating chronic pain. Polycystic ovarian syndrome can make it very difficult to maintain a healthy weight, which in turn can contribute to all sorts of physical problems. In certain cases, miscarriages and ectopic pregnancies can be extremely dangerous to the health of the mother. 

I also want to make the point that people are dying from infertility...our children are dying. After miscarrying our son Ethan at 19 weeks, my doctor told us that my specific infertility diagnosis played a role in his death. I've read many definitions of infertility that include "recurrent miscarriage" as a factor. We, as an infertility community, are losing babies every day.

But despite all of this, I know that many of us remain unconvinced that infertility is a big deal. Insurance companies still put infertile people in a category with those seeking breast augmentations. We still hear things like, "You can borrow my kids any time!" and "Maybe you're just not doing it right." Like I mentioned earlier, sometimes even I, as a self-proclaimed voice for infertility, struggle with doubts about whether I should be focusing my efforts on something...bigger. But earlier today, a thought dropped into my brain that will stick with me forever...

Those of you who have children, grandchildren, nieces and nephews...imagine with me for one awful moment what it would be like to lose them...to cancer...or a car crash...or a senseless act of violence. Imagine the devastation of that loss. Imagine the grief that would sink deep down into your soul and just stay there. Imagine the anger. Imagine the loss of joy, of faith, of purpose.

Now, instead...imagine never having had them at all. Imagine that they were never here, that those precious lives never even existed. That you were never able to touch them, talk to them, read to them, play with them. Imagine that they never had names, never had personalities. Imagine never being able to bury your laughter in their hair or see their picture hanging on your wall. Imagine that they were...nothing. But this isn't just a blank, benign nothingness. This is the type of nothingness that leaves a gaping, aching hole in your heart.

That's what it's like to have infertility. That's what it's like for the countless men and women for whom the most expensive, invasive treatments never work. That's what it's like for families who stay on the adoption waiting list for years and never receive a match. That's what it's like for couples who miscarry over and over. That's what it's like for families who know in their hearts that they were meant to have a large family but every evening, they set the table for only three or four.

That's why it's so important to know that infertility is a disease and that our struggle matters. So if you have someone in your life who is weathering the storm of infertility, please validate their journey. If you don't know how to do that, here are a few ideas to get you started:

• Say something like, "I'm so sorry that you have to go through this. I don't know what it's like to be in your shoes, but I would like listen if you feel like talking."
• Do a little bit of research on your friend's condition. Sometimes infertile people feel overwhelmed by having to explain their disease over and over and over, so it helps if you start out with even the most basic knowledge.
• Vow to never give advice unless your friend specifically asks you for it. Oftentimes, suggestions like "maybe you just need to relax" or "you can always adopt" end up doing more harm than good.

Please, join the movement. Validate the infertility journey and come alongside the ones who walk this path.

What is infertility?

About National Infertility Awareness Week

join the movement...smile courageously

I have been sitting here for a while now, staring at this smudged computer screen, trying to decide whether my idea is over-the-top crazy, borderline worthless, or downright life-changing.

Well, maybe every powerful movement starts out that way…so here goes nothing. This little dream was born a couple months ago as I wrestled with my thoughts and wrote these words…

I sat in the waiting room at the fertility clinic for 50 minutes. Fifty whole minutes. I was getting annoyed. Maybe I'm crazy, but there's a weird vibe in fertility clinic waiting rooms. When you sit in a regular doctor's waiting room, the people around you are there for all kinds of boring reasons - sore throat, ear infection, ingrown toenail...but at the fertility clinic, we're all there for the same exact reason. We want a baby. Really, really bad.

I try so hard not to stare at the people sitting near me, but I can't help it.

There is a woman in scrubs. She is my age and has a kind face. There's no way she's infertile, I think. She looks way too normal.

There's a really tall guy sitting behind me. His wife shows up and they talk quietly together. I want to give them some privacy, but I also kind of (okay, more than kind of) want to hear what they're saying. Are they doing IVF? Is it her issue or is it male factor infertility? Maybe both? How is their relationship holding up under this stress?

Another woman walks through the door, checks in and sits nearby. She leaves her coat on. She looks tired. I wonder how long she's been at this, how many cycles she's done, what meds she's tried, whether she's miscarried.

This happens to me every time I go to the clinic. Give me more than thirty seconds in that waiting room and I get this urge to start talking to the people around me. I want to ask the woman in scrubs how her treatments are going. I want to ask her if she has PCOS, endometriosis or low ovarian reserve. I want to ask about her husband's sperm count and whether they have any friends who have been down this road. I want to ask if they've considered IVF, whether they've gotten second opinions. I want to ask about their insurance coverage and how she's doing with all of this. Like really, how are you doing?

And I want her to ask me.

I want it to be a conversation. I want us to sit next to each other and laugh about the crazy places our men have given us shots and all of those birth control pills we religiously took way back when. I want the tired girl with the coat to hear us and move to where we're sitting, join in with a story about a pregnancy test she was sure was going to be positive...and wasn't. I want to put my hand on hers and tell her I'll say a prayer for her every time she comes to mind. I want to stand up when the nurse calls my name, turn back toward them and smile as I walk away. I want to say, "Nice talking with you."

But none of this happens. We just sit there - on our phones, in our magazines, sinking deeper into the collars of our shirts. We keep our mouths shut because we've heard of HIPAA and there's that sign ten feet from the front desk telling us to stand back to protect each other's privacy.

For some reason, all of this reminds me of the time I ran a marathon. The first thirteen miles were a breeze. Thousands of people lined the streets, cheering for us until their throats were sore. The spectators' roar mingled with my adrenaline to create the sensation that my feet were barely even hitting pavement. It was like I was floating. But then mile fourteen hit. It got really hard. The crowds lessened a bit. The day got hot. And I wanted more than anything to give up.

But there was this lady.

Her race badge said she was in the 70-75 age category and she ran with a limp, almost like she'd had a stroke. She passed me, and as she did, she spoke a word of encouragement that kept my feet moving. I passed her later on and made sure I returned the favor - just a "you go girl!" or "you're doing great!" to lift the spirits of a fellow runner. She passed me again. And again, she used a bit of that precious, fleeting energy to keep me going.

She wasn't the only one. There was a middle-aged guy, a couple of teenage girls, a group of moms. All of us runners were finding the strength to look past our own journey and speak words of encouragement to those who were struggling beside us. This is the reason I ran that marathon. It wasn’t just some crazy idea or something I wanted to check off my bucket list. Looking back, I know I was supposed to run that race so that I could feel that camaraderie...with total strangers.

And maybe this fertility stuff is kind of like a marathon. We're all running the same race with the same finish line. Some are young. Some are older. Some run with partners. And some run alone. Some run a little more smoothly and others really struggle. For some of us, it's our first race. And some of us know what it's like to cross that finish line. It can be exciting at first, even fun.

But then we hit mile fourteen. Maybe it's the realization that the money we set aside for treatments is running out. Maybe it's the third miscarriage, the eighth negative pregnancy test, the second canceled IVF cycle. And when we hit mile fourteen, we need more than we can offer ourselves. We need that 70-year-old lady. We need each other.

We're running the same race, with the same goal in sight, just an arm's reach from one another, but we're still really lonely.

So maybe someday, I'll do it. I might just speak up, take the risk.

"What are you in for?" I'll say to a woman in skinny jeans, clutching her insurance card. Maybe she'll be offended. Maybe she'll tell me it's none of my business.

Or maybe she'll take a deep breath and talk about it...actually talk about it. Maybe for the first time. Maybe she...maybe we...won't feel so lonely in that fertility clinic waiting room. Maybe I can be her lady with the limp. Maybe she can be mine.

And maybe someday, we won't really care how long it takes for the nurse to call our names.

It started with that dream, with that maybe. And then one day in the waiting room, I gathered up my courage…all of the courage that I’d earned from the infertility treatments and the blood draws and the tough conversations and the financial risks that infertility requires…and I used it to give my maybe a shot.

I decided to talk to someone. I picked a woman who looked really nice and friendly. I sat close enough to her to have a conversation but kept some distance between us to avoid freaking her out.

I took a deep breath and just dove in headfirst. 

"Are you here for blood work or an ultrasound?" I asked.

She didn't speak English.

So I just smiled. A genuine, smile that said both “this sucks, doesn’t it?” and “you’ve got this, girl.”

And she smiled back. A smile that said both “this is so awkward,” and “this is really great…really important.”

That weird, seemingly insignificant interaction changed me. I decided that I was going to begin a personal mission to light up the waiting room. To smile. To gulp down my fear and insecurity and maybe even say something to somebody. To make eye contact with other men and women who are struggling through this journey like I am.

So how many of you want to join the movement? It’s a humble, scary, little movement, but it’s a movement nonetheless. A movement towards making infertility clinic waiting rooms warmer and more friendly. A movement about deciding that advocacy starts by learning how to look one another in the eye and offer a gentle smile, a kind hello, an unspoken commitment to be the lady with the limp.

What is infertility?

About National Infertility Awareness Week

join the movement...tell your story

National Infertility Awareness Week is April 21-27. RESOLVE, the national infertility association, is sponsoring a Bloggers Unite event, centered around the theme - "Join the Movement." So this week, I plan to write several posts inspired by this idea.

Last year at this time, I participated in National Infertility Awareness Week by being interviewed for a local news story about infertility and The Family Act. Here's a link to the video and accompanying article that feature my story.

Less than twelve hours before the news program was set to air, I received a mass email from my former RESOLVE support group leader, asking if anyone was willing to talk to a reporter.  I emailed back immediately. I didn't even think twice. I was a little scared, of course. Would I be able to articulate my thoughts and feelings clearly? How would I be represented after the editing process? How would the story be received by the general public?

But I felt this visceral drive to tell my story, a drive that was much more powerful than fear and insecurity. I knew that by sharing our experience with infertility, late miscarriage and in vitro fertilization, I was also sharing the stories of millions of men and women who have walked, are walking, and will walk the unsteady path of infertility. I knew that I had to do it and I felt honored to be a voice for a group of people who often suffer silently.

I looked up the story a few days after it aired and read the comments. Of course, the comment that stuck out was the mean one. Someone stated that he questions the mental stability of "these people," meaning me and other IVF-ers. He said that wanting a child that badly suggests that we have underlying psychological problems and should see a shrink. He also added that there are lots of kids out there who need to be adopted.

Ouch. I don't even know this man, but his words hurt. I typed and then deleted four different responses to his comment. I'm so glad that I chose not to engage with him. I'm so glad that I chose to keep things positive. I'm so glad that I started a blog instead.

Sharing my story on this blog has changed my life. I have received countless emails, comments and texts from people who have lost a child and/or are having trouble conceiving. Many of them tell me that no one knows their struggle, that this is the first time they've talked about it, that they don't know anyone else who is infertile. I admire their courage in reaching out and starting to tell their story, even if it's just to one person. Even if I'm the only one reading their unborn child's name and sending back a little hope and encouragement. I feel humbled every time I get to share in their journey, even if it's just for a few steps.

So what's your story? It may not seem like much to you, but every story that's shared - whether spoken or written, whether whispered or broadcast around the world - matters. And every story adds an individual voice to our collective song. A song of heart break. A song of dreams unrealized. A song of hope. 

So join the movement. Tell your story.

We're listening.

What is infertility?

About National Infertility Awareness Week