Wednesday, April 23, 2014

NIAW: Resolve to know more . . . . about the emotional impact

As always, late to the party, but still intent on participating. To all members of the ALI community, I wish you a wonderful and fruitful National Infertility Awareness Week. For those new to the community or participating for the first time, here's a bit of background.

National Infertility Awareness Week (NIAW) is a movement that began in 1989. The goal is to raise awareness about infertility as a disease and encourage the public to become more informed about reproductive health. As our society is historically very squeamish regarding all things having to do with sex, this week is incredibly important as it only directly counters a lot of the myths and misinformation surrounding this disease, but also allows for an opportunity for members of this community to break their silence and step out of the shadows.

This movement is founded by RESOLVE: the National Infertility Association, which is a non-profit organization established in 1974. You can find more information about RESOLVE and all the amazing work this organization is doing here.

This year, the theme for NIAW is "Resolve to know more....," with bloggers being challenged to write posts based on this theme. There are already a number of amazing posts, covering everything from the facts about treatment, advocacy/educating others, family building options and even about infertility as a disease.

I'm taking a bit of a different spin.

Like many, one of the hardest and unexpected realities of a diagnosis of infertility was the emotional turmoil caused by this diagnosis. Coming from a family with no known history of fertility struggles, I immediately felt damaged as I was not following in the footsteps of every other woman in my family and conceiving within a couple of months of trying. This failure to connect ultimately lead to me distancing myself from them as they failed time and again to offer support and instead assumed that either I needed to calm down or accept that my situation was "deserved."

As Grey and I began our journey down the rabbit hole that is fertility treatments, we found ourselves becoming more and more isolated from others in our lives. With each surprise pregnancy announcement from others on the heels of another BFN or miscarriage, stealing ourselves became survival mechanism. Granted, there were moments people tried to reach out and support us. But time and again their attempts were either sloppy, as they felt the need to offer quick "fixes," or support waned fast as they found our situation too depressing. After all, everyone loves a happy ending and as time went on it seemed like we were doomed to never get ours.

I've talked before about how this community became my shelter from the storm that is this disease. Though I have not meet most of those who I've connected with here in person, the continual support and love I received became a lifeline and this space became a safe haven. Even now, as the road to resolution has become very clear, I find myself continually drawn back, trying to repay in what ever manner I can that love and support in any way I can.

There are days I most certainly fail. Saying the wrong thing or offending when it was the last thing I ever wanted to do. But I also know that silence can be so much worse.

Over the last few months, since the Beats have arrived, I've been allowing myself to rejoin the "fertile" world, interacting with those who are seemingly and blissfully clueless that infertility even exists. And during that time, as we've shared our story, a funny thing has happened: those who are not reproductively challenged have begun telling us their stories about friends or loved ones who have fallen out of their lives because of infertility/loss. They confessed frustrations about being cut off and feeling left out when they were "trying to help." One woman in particular broke down as she shared about how her BFF no longer is speaking to her after an incident where she assumed a day out with her new daughter would help ease the pain of her friend's recent miscarriage. After all, her little girl brought so much joy to her life; why was it awful to assume that joy couldn't be transmitted?

What's been interesting as we talked with people time and again is how there truly is this disconnect with understanding how emotionally distressing infertility/loss is. While most have been thoroughly educated on how to handle news of other life changing diseases like cancer, heart disease, Alzheimer's and even diabetes, with infertility and loss your average person is ignorant if not completely mislead. Time and again, I heard accounts from those battling this disease about platitudes like "just relax," "G_d's plan" and even "wasn't meant to be" offered, of suggestions of "have you tried X" recommended, of people suggesting that a couple should "just adopt" or "just do IVF" when they themselves have zero idea about the complexities of these processes. And most destructive, loved ones turning on these couples, lashing out at them in frustration, because they should simply "get over it."

With each of these conversations, Grey and I have tried to explain why the myths and misconceptions have been so destructive. There are the "ah-ha" moments, where people tell us that they had never considered that point of view or told us that they didn't realize what they were saying would be so hurtful. But many times there's been this unwillingness to accept our viewpoint, with those individuals firmly adhering to the misconceptions and myths as not doing so somehow negatively impacts them.

As a global community, it is time that we change the conversation about infertility/loss. Take away the stigma and allow those who are living with this disease to break there silence and share their stories. Knowing the facts about this disease and how complex and poorly understood it is. How difficult treatment is and the truth about success rates. Debunking the myths and misconceptions surrounding adoption and the process. And knowing that choosing to resolve by not parenting is NOT giving up but actually an empowering decision to reclaim one's life and live it fully instead of living in the darkness. All these things are so important.

Equally important is having the conversation about the emotional aspect. How the uncertainties and fears impact the daily existence of those living with this disease. And how important it is for loved ones to not fall into patterns that are know to exacerbate grief, instead focusing on being willing to listen, offer unconditional support and even educate themselves about each part of the process all while understanding that each journey is a personal one.

It's time we push for society to resolve to know more about the emotional devastation caused by infertility/loss.

For more information, please follow these links: (Basic understanding of the disease of infertility.) (About NIAW)

Friday, April 18, 2014


Sitting on a brightly colored mat covered with a white sheet, the physical therapist proceeded to set up a small table in front of She-Beat. On the table, she began placing objects: first a red cube, later a second, then a red hoop with string, next two Cheerios and finally a bell. After placing each object, she watches as She-Beat reaches for it, observes how she inspects it, grasps it, passes it from hand to hand. Grey is sitting behind her, giving her encouragement, asking her what she sees. All the while I sit apart and observe, holding my breath.

For the past 9 months I've though a lot about this appointment. I thought about it the day the Beats were born, which was 6 weeks too soon. I thought about it during our time in NICU, as the physical therapists there assessed them while in their isolettes, observed their growth progression and made note that we could be dealing with torticolis in the future. I thought about it again following She-Beat's frenotomy and then during the sessions with the cranialsacral therapist to correct for prematurity and the effects of the submucosal tie. And I thought about it during their first day of daycare, when I left them in the care of their teachers to interact with other infants, worrying if they were reaching the appropriate milestones and if all the work to overcome the effects of prematurity had simply been in vain.

Yesterday, Grey and I took the Beats in to the local children's hospital and had an appointment with a physical therapist. The purpose of the appointment was simple: how were they doing? Was the fact they were born premature hindering them in any way? So, like many parents with premies, we took them in. All the while running the worst case scenarios through our heads and wondering how we would survive the weekly PT appointments that we saw in our future. How would we afford this? How would we handle the schedule?

As the therapist worked, she noted that I was quieter than usual. Making small-talk, she commented on She-Beats new teeth (which she has happily shown off) and asked questions about what we were observing at home. After a few minutes, she turned her attention to He-Beat, who was sleeping. After switching babies and allowing He-Beat to orient himself, the whole process began again. The whole time, the therapist commented on how different they were from one another, how impressed she was with their ability to grasp objects. She noted their weights, their movements, their responses to their environment and us. And she laughed when it became clear He-Beat was flirting with her. "He's going to be trouble" she announced. Grey chuckled and responded "he already is."

In all, the whole appointment took 90 mins. Both babies were feed, played with and repackaged while she calculated the results of the assessment. Finally, the therapist turned her attention to Grey and me. And just when I thought my heart would jump out of my chest, she smiled broadly and spoke the word I worried I would never hear.


They are well within normal development range. The only prescription is tummy time and play. But there is no need for them to be seen again.

9 months ago, I held two tiny babies in my arms and cried while apologizing to them for failing them. I whispered between tears how much I loved them and promised to do all I could to help them overcome this. 9 months later, they showed Grey and me how incredibly strong and resilent they are. What fighters they have always been.

We've been cleared.
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