NIAW #StartAsking What do you wish others asked you about your struggles with building a family?

The theme for this year’s National Infertility Awareness Week (NIAW) in the United States is #StartAsking. RESOLVE, the National Infertility Association, is encouraging people to talk about the myths that surround infertility and how people build their families. They are focusing on two main questions:

  1. What do you wish you had asked when you first realized that you might be struggling with infertility?
  2. What do you wish friends and family asked you about your struggles with building your family?

For today’s post, we asked members of the Rainbows & Unicorns online community what they wish they had been asked at the beginning of their infertility journey:

I wish just one person, other than my Mom, let me just cry. Infertility hurts. If you see me on a day that the test showed negative, please don’t tell me next month will work. Please just let me mourn for a few minutes today;that this sucks and that it didn’t work again this month. No one knows the future and I am an eternal optimist, but just sometimes embrace the suck. I know it’s hard to watch other people hurt. Remember to say, “You are right, this hurts and I am sorry this sucks.”

I was so lucky that I had a great support team both IRL and online. But a simple “How are you holding up” was so valuable!!

I wish I had asked more about my fibroids and how much of an issue they really were. I ended up having 2 procedures and one major operation because of them and always felt like that could have been condensed more.

It’s so great that you’ve found a solution to have a baby, and I’d love to learn more about egg donation and what that means for you.

Our community faces continued issues with our infertility and struggles to come to terms if we are going to try to keep building our families. Just because we have a child(ren), it doesn’t mean that we are “cured” of our infertility or that our feelings around our diagnoses and family-building options have changed.

The following responses are what the RainCorns Tribe community on Facebook want friends and family to ask and discuss with us now:

As for #2, I would be happy with the obvious questions, like “how can we support you?” “how are you coping with this challenge?” “what is your thought process?” A lot of the time people say nothing, gloss it over or try to give advice. I don’t know why anyone would try to give advice without first asking what you are already doing to deal with the problem. But, people.

Just how I am doing and how I may be affected now, instead of just assuming everything is perfect because I have [my daughter]. It doesn’t end just because you have a baby and there are many other issues we struggle with after.

I would like to them STOP asking if we can conceive on our own now that we have had [our son]. 😩

I want friends and family that know that we are considering doing another FET to ask me about if we will transfer one or two embryos and if I am scared of having twins again. I need to remember what it was like the first year. I need to be smart about my decisions – do I take my chances with one embryo or two? Do I want to spend $5000 or potentially $10000? I need people to help play devil’s advocate with me.

One question friends have asked me about that I have loved answering is how I talk to my daughter about her genetic origins.

It sounds weird, but sometimes I wish people asked me about egg donation. Or even talked about it. Like, Are you in touch with your donor? Can I see a picture of her? What did you like about her? Does it bother you that you’ve never met? In some ways, the people in our life have been SO accepting that it feels like they’re maybe sweeping things under the rug. (Well, that did happen with a friend recently, which I suppose intensifies these thoughts for me.) I guess I wish people in our lives were more curious. Or, if they are, found the courage to ask me about it. I guess they’re worried about upsetting me. Another reason we need to talk about our struggles!

It’s frustrating when you have a child/ren & people think that since it was such an ordeal that you aren’t allowed to vent or stress about them.

How are you doing? I wish people understood that what makes many women infertile are conditions that don’t resolve or disappear because you have a child. I still have a unicornuate uterus & stage 4 endo. Seems like I can’t take BCPs to suppress it any longer because it caused mega endo pain. I have been taking progesterone which has its own issues. I’m still infertile and literally feel it daily.

NIAW #StartAsking What do you wish you had asked about infertility?

The theme for this year’s National Infertility Awareness Week (NIAW) in the United States is #StartAsking. RESOLVE, the National Infertility Association is encouraging people to talk about the myths that surround infertility and how people build their families. They are focusing on two main questions:

  1. What do you wish you had asked when you first realized that you might be struggling with infertility?
  2. What do you wish friends and family asked you about your struggles with building your family?

In today’s post, we asked members of the Rainbows-Unicorns community and the closed group, RainCorns Tribe, on Facebook the first question. Here are their answers:

“I just wish I had asked for a second opinion before I did. Instead I listened to the OB/GYN, who wasn’t specialized in infertility. Based on my creeping age and my history, she SHOULD have sent me straight to the RE. She didn’t. It wasn’t until a relative going through IF too questioned me, “Why was I still following this OB/GYN blindly down a path that wasn’t working?”

“I wish I would have asked earlier about my irregular cycles. I was constantly told I should be lucky my periods didn’t come often but really, that was a huge warning sign of my fertility!”

“I wish I had asked more about my fibroids and how much of an issue they really were. I ended up having 2 procedures and one major operation because of them and always felt like that could have been condensed more.”

“I wish I had asked for an earlier confirmation of my endo – at that point, that was the only issue I thought I might have. It is probably unlikely, but I always wondered if my 6 Clomid cycles ruined my only functioning tube. I wish I had insisted my first RE had attended my HSG. He thought based in the radiokogist’s report that I had a spastic left tube. Turns our I have a major uterine anomaly that was easily diagnosable after a few seconds of looking at my films by RE #2.”

“I am not sure how to answer #1, because we found things out gradually and so there was time to ask questions. I can’t think of anything in particular I didn’t ask.”

“I honestly don’t know as I found out as a child that I would have issues conceiving. I guess that’s a major difference between an adult finding out and a child finding out.”

 

In asking this question, Bex realized that she still had questions regarding her infertility, after having twins, as she restarted her journey to have more children. She had questions for both her healthcare providers and herself.

“I now have totally different questions I would ask…because I realize I am not new to infertility and I have children, but the issues don’t go away.

  • If I have embryos someplace else and move, will the new clinic do an FET (frozen embryo transfer) once I relocate the embryos to a new place? (For one of the clinics I talked to today, the answer was no.)
  • Did my fibroids come back? Oh god, I forgot about those!
  • If they did come back, am I willing to have another hysteroscopy?
  • How do I ship my embryos over 6 time zones?
  • Should I transfer one or two? They aren’t as good quality as the embryos that resulted in my girls. How much will that matter?
  • Could I deal with another set of twins? triplets?!
  • How much does my age matter now?
  • Will I be okay if the embryos don’t result in living children?

The issues of infertility never truly go away. Whether it is being haunted by the shadows of the past or the void of the future. It sticks with us. We can’t go back in time to ask those initial question we had – but we can help other people know where to start. If one thing is sure, for all of us struggling with infertility and loss, we will always have questions and we know that we need to #startasking those new questions now.

What questions are you asking?

National Infertility Awareness Week (NIAW) 2016

This week is NIAW (National Infertility Awareness Week) in the US, and this year’s theme is #StartAsking. We have some awesome Facebook cover photos for you to show your support.

Right click to save the image to your computer, then upload it to Facebook.

NIAW 2016 Facebook Cover Photo
Use this if you have been affected by infertility.
NIAW
Use this if you want to support someone affected by infertility.

Let’s start asking questions about infertility! Here are some ideas from Resolve on what we should #StartAsking:

#StartAsking

• Employers for insurance coverage.
• Your lawmakers and legislators to support issues important to the infertility community.
• Friends and family to support you.
• The media to cover infertility and the real challenges we all face.
• Your network to make a donation to the cause.
• Your RE, clinics, OBGYN or adoption agency to support RESOLVE.
• Your partner to get involved.
• Those who have resolved their infertility to stay involved.
• OB/GYN or healthcare provider to talk about YOUR reproductive health.
• For affordable care for treatment of a disease.
• Legal access to all family building options nationwide.
• About men’s reproductive health

What do you want to talk about this week? What questions will you be asking? What do you hope you will be asked?

The Grass is Always Greener: Dealing with Anxiety as a Stay-at-Home-Mom

Social media can be a bit of a minefield, especially since I struggle with anxiety, depression, sensitivity, and an overactive imagination. Some responses can easily be read by me through a different lens than they were originally intended when I am drowning in anxiety.

I posted a picture of my girls at the park, on a weekday, and one of the responses was, “…so jealous.” What was the person jealous of? At face value, I was doing something they wanted to be doing—being outside, enjoying the sunshine with my children, while that person is working outside the home, away from their child, five days a week. Rationally, my brain—even initially—completely understood.

My emotional reaction, however, was ugly, fueled by my anxiety and resentment at what, many days, I don’t have. At first, a comment that seems so benign and fragile hits like a rock to the heart. The almost painful energy radiates from the solar plexus down to the stomach, and up to my brain, almost blackening the thought process that started out so clearly. The following anxiety-fueled thoughts aren’t rational. Of course they aren’t. Anxiety can take a simple comment and blow up my response to it to the size of a fire-breathing dragon in as little as just a few seconds. Here is what the dragon said:

  • “The picture of my children playing isn’t about you!” (Many times though it feels like society sets primary caregivers up to be in competition with each other, regardless of their choices and working decisions.)
  • “Are you also jealous of the three hours of screaming, shoving, hitting, and hair-pulling they did this morning while I was losing my mind?” (There is so much that I don’t share about our days on social media and there is a reason for it. I don’t want people to see all of the negative things that go on during our day—the tantrums as they start to navigate their world as autonomous little human beings, the judgments I would open myself up to about feeding habits or how my children behave.)
  • “What about the guilt I feel about not using my doctorate? The one that cost me well over $100,000? The fact that I don’t have my own money? That I have worked for 25 years of my life and now I am not getting paid for what I feel is more work than I have ever done? There are no guaranteed lunch breaks. There is no time to gather my thoughts as I circle between the girls, redirecting them to the best of my ability before it deteriorates to shouts of, ‘NO! STOP THAT!'”
  • “How envious are you that I struggle with my identity and who I am every day while my vocal form of communication is repeatedly saying ‘ball,’ ‘dada,’ and ‘book,’ and my only form of communication with other adults is via the internet?”

Once the rage is extinguished, I look back on these thoughts and wonder who I am.

And yet, when I come down off the anxiety, I am not complaining. This was my choice. My decision. I wanted to stay home with my girls. We had such a journey to have them and my husband has worked hard in his career, one that requires us to move around and makes getting licensed in each new location a challenge for me. We have the opportunity for me to stay home with the girls. I didn’t want half my salary going to daycare and the majority of my time to work and commuting, if it wasn’t required. This was the price I could pay, though, for finding my husband later on in our lives, having children when we were older, and being more established in our careers. Our families are thousands of miles away and my family, in particular, is not able to afford the time and/or money to come visit us.  If we could rely on family more, maybe I would have pursued my career again in our new location.

I know this person had no idea of what the stormy response churning around in my head would be and meant absolutely no ill will, nor would it occur to them I would take it like that. How could they? I don’t talk about these things on social media because the response and reality are that, “the grass is always greener on the other side.” Well-meaning, older parents chime in that “they are only young once, you are so lucky to be home with them, and appreciate this time while you have it.” While completely true, and the perspective is appreciated, it also simultaneously devalues what I am feeling. Rationally, I already know that I need to appreciate and be thankful for what I have, but there remains this yearning for what I don’t have, what I could have. Perhaps humans are set up this way to always be striving, always aiming for something more, in order to survive. Even though the physical elements and environment are not as treacherous as our prehistoric days, our brain still requires this drive to want more, to do more, to prevent complacency—something that would get us killed in times past.

The decisions that any primary caregiver needs to make always seem to be about sacrifice. These are the choices I personally have to choose from:

  • Sacrifice of who I am, or time given up with my children.
  • Sacrifice of adult interaction and external validation, or missing out on yet another “first.”
  • Sacrifice time where children are socializing with others and building trust outside of just their parents, or dealing with exposing my children to multiple colds and illnesses in daycare.
  • Sacrifice losing the potential to advance in the career I had prior to children, or personally helping my children advance in their skills.
  • Sacrifice having my body be “touched out” at the end of the day, or missing the closeness and touch of my children throughout the day.
  • Sacrifice my sanity after listening to a child throw a 30-minute tantrum, or a paycheck that my family could rely upon.
  • Sacrifice a paycheck, or hand over most of that paycheck to daycare.
  • Sacrifice people assuming I don’t have a brain because I stay at home with my children, or all the mental acuity that is dedicated to working outside the home.

I am a product of my society, upbringing, and surroundings. Society says I need to be the best mother I should possibly be while striving to get ahead in my career. I watched my mom work 70 hours a week while oftentimes being a single mother of three. I saw how tired she was and I lived in a childhood delusion that if she could have stayed home with us, brownies would be made weekly and my life would have been better. As a parent now, I see that she did the best she could with the circumstances she had. I know the sacrifices she made for me and my siblings. I hope to learn to accept and enjoy the decisions that I have made because they weren’t made for me, and I know that isn’t the case for everyone. I hope to no longer read into innocent internet comments and to focus a bit more on figuratively cultivating the grass where I currently reside.

Catastrophising

We asked members of the Parenting after Infertility and Loss Community a question: As a parent and/or individual, what do you catastrophise about? Here are the responses.

“I catastrophise with the best of them. The first time the girls nursed all morning after they turned one, I had convinced myself my milk was drying up and they were trying desperately to up my supply, this was the end of nursing and because of a dairy allergy I was going to have buy and mix toddler soy formula for a year! Five months later… Still nursing.”

“I convinced myself that by going back to work I was going to miss every single milestone. Crawling, walking, sitting up, clapping, everything. Turns out, I didn’t miss any of them!”

“My son’s tongue tie. We took him to an ENT [ear, nose, and throat doctor] at 12 days old. He wanted to put him under anesthesia. I said no. Our breastfeeding relationship suffered and we were done at 5 months. Now he’s 3 years old and I wonder if I should get it fixed. But what if he’s fine? People say they can understand him 75% of the time. But what if he’s not? What if he has speech problems? What if he gets teased? Will he ever be a good kisser (weird, I know, but there you go). What if he has complications? On and on and on.”

“That she’s going to die. And I have terrible anti-fantasies about all the ways that might happen. That having a second child will damage her and/or our relationship.”

“I left the house last night by myself, got in the car, and worried that I would die in a car accident and be abandoning my girls. I keep making them things and putting them in a bag with their names on them so if I do die, it will be obvious I made these things for them. And that I love(d) them.”

“That someone is going to be mean to her because she doesn’t share her mom’s genes. And that their comment will undo all the work I do to tell her her conception story.”

“I catastrophise about something happening to my son, or something happening to me. Last night it was that a bullet could come through the wall and hit him and we might not even know until the morning. (We don’t even live in a high crime area, but there are occasional shootings). And always worried that I’ll be in a car accident to/from work.”

“I’m petrified that [my son] is going to die. My worst fear is that there will be a fire & I can’t get to him (his bedroom is on the 2nd floor, ours is the 1st) in order to be prepared for this fire, I’ve put fire extinguishers in all bedrooms, in the kitchen & in the hallway to [my son’s] room. (I spent $100 on 5 fire extinguishers so I can sleep at night.)”

“As I’ve taught for a bloody long time and in very impoverished schools, I am so hyper anxious about physical, emotional and especially sexual abuse. I constantly replay all the details of sexual abuse cases from the children I’ve taught and am terrified someone will hurt my amazing girl. It’s a bit like a broken record going round and round.

I hope that I raise her to be confident and understand that her body is her own and anything that someone else does to her against her consent is not ok, ever. I hope that I give her voice to say- this is not ok and I am going to haul your ass over the coals.

I do have severe anxiety, and with medication that worry is quieter, but whilst dealing with those poor kids, I’d never realised what PTSD was building up, ready for me to deal with as a mum.”

“As I watch my children run around the house with their forks, stopping only briefly to get a bite to eat before running off again, that I am a horrible mother with ill behaved children that will never have proper manners and it will be the topic of conversation behind my back that I don’t know how to raise my children right.”

“I catastrophized all the time about breastfeeding: that I wasn’t producing enough, that I was producing too much, that what I ate was passing through my milk and was bothering her, that she was allergic to something and I would need to cut things out of my own diet, like dairy. Currently, I’m paranoid about the possibility of her being abused and my not picking up on it. I have no logical reason to be concerned – I think it’s an extension of my guilt over leaving her with someone else for the majority of the day, every day. Conversely, I’m paranoid that her daycare will think I’m abusing her, because she’s always covered in bruises from being an unsteady toddler.”

“I want my son to go to daycare 1-2 times a week so he has interaction with other kids his age. Every time I pull up to a daycare to get information I feel really guilty and want to cry so I just leave.
Also, he doesn’t talk much yet and that concerns me even though I know every kid reaches milestones differently.”

“This one doesn’t have to do with my son, but my husband. I catastrophized all the time about him dying while I’m pregnant with twins. He’s perfectly healthy and not at all a risk taker. And the likelihood of me getting pregnant naturally, let alone with twins is slim to none.”

“I’ve been thinking about this and there are way too many things to even list. 😕
I am terrified C will stop breathing in her sleep. Especially now that she has started to sleep on her belly.
When our dog was alive, I would have visions that the house would catch on fire with him in it.
I panic about him having a car accident on the way home with C and keep checking my phone for the text they are home.
The list goes on and on and on. *sigh”

What about you? What strikes fear into your heart?

Choices and Safe Spaces

This is a piece written for us by a member of the infertility, loss, and adoption community.

Due to the nature of the subject matter, she wishes to remain anonymous. 


My husband didn’t know about the elective abortion I had 20 years earlier until I started to miscarry. We had been together a year and it just wasn’t one of those topics that comes up in casual conversation. Since it was so long ago, it really wasn’t on my mind as much anymore. On December 23rd, and my husband and I found ourselves in an emergency room going over my pregnancy history. I was supposed to be 9 weeks along.

How many pregnancies have you had? “This is my second.” How many living children do you have? “None.” What happened to the first pregnancy? “I had an elective abortion, in 1995.”

I looked tentatively at my husband. Shame and fear on my face and in my heart. He didn’t care. He was living in the now, worried about the future.

When we went back for extreme pain and further bleeding the following night, it was determined I had a missed miscarriage. I distinctly remember falling while we were hiking the day before I took the pregnancy test. I always hear, “Don’t blame yourself, there was no way you could have known.” But I did. I knew in my heart I had lost whatever started growing in my body, but my body didn’t know it yet.

From that moment on, I started to play the mind games that tend to arise… Was I currently being punished for the choices I made 20 years prior? Was that the only child I would be able to have?

I had the abortion when I was 20. I had just transferred from a community college to a four-year university. I was taking Organic Chemistry for the first time. I was on birth control, but must have missed a dose. I considered myself responsible enough to have sex and was doing my best to prevent it, but we didn’t. The father was going to a different college; we weren’t really together anymore, but had a long history. Things were complicated. I told him about the positive pregnancy test and he automatically offered to help pay for the abortion. There was no discussion of keeping what we had together, in any form. I knew this was the right decision, despite the fact that there was a part of me that somehow hoped the situation could be different.

I was mortified to tell her, but my mom always made it very clear that I could tell her anything. I drove home from college that weekend and sat around the table with my sister, my stepfather, and my mom and told them. I needed the support and I always considered myself lucky to be supported when I needed it the most. I saw my future: I wouldn’t graduate from college, I would need to live at home, I would be a single mother. I imagined resenting a baby that the father didn’t want. I was young. I wasn’t ready to be a mother. I would have been accused of freeloading off the government from the same people who would shout so loudly for me to keep a fetus that would become a baby I couldn’t afford. In that moment, the mass of cells was important to me, but I knew nothing about it and I determined that I was more important, the life I was already living was more important. Following through with the pregnancy would have meant postponing college. I wouldn’t have been able to let someone else adopt my baby once it became a viable life. I felt that I only had one choice, and I was—and continue to be—thankful that I had a choice to control a situation that would have had such a profound effect on my future.

Even as I started to deal with infertility, I never doubted my decision. The person I was, pre-infertility and pre-marriage, taught hundreds of young adults and helped shape the future in a positive way, and took care of a sick and dying relative with the knowledge acquired in the life I chose. I don’t believe it is fair to punish women for not being perfect, for making mistakes, for facing a decision that no woman makes lightly—but I do believe it is a choice unique to each person’s individual situation. No one else was going to have to deal with the consequences of my decision to have an abortion, except for me. My abortion wasn’t the reason I struggled with infertility—it was fibroids and my age, mostly—with waiting to find the right partner, to raise children in circumstances with which I was comfortable.

Now that I have my children, I always want to make sure that they know they can talk to me about anything, the way I could with my mom. I will always provide them with a safe space in which to discuss whatever choices they need to make in their lives. While I will do everything to educate them to avoid making a similar decision as I did, I want them to have the same choices to make whatever decision is best for them. Only they can decide that.

Miscarriage and Infertility Scars

There’s been some recent talk online about how having a baby magically erases the pain of infertility. I really hope this is true for some people. It’s just not true for my friends and me.

There’s this myth: having a baby resolves infertility. Nope, says I. Having a baby resolves childlessness. Just because I have a baby doesn’t mean pregnancy announcements are suddenly a breeze. I still need medical help if I want to give V a brother or sister, I will submit to the intrusion of multiple dildocam appointments and pay through the nose for the privilege, because I am still infertile.

Speaking of which, we are planning on doing an FET this summer. We met with our RE, Dr. H, a few weeks ago to discuss the logistics. I have only two non-negotiables: 1) we have to move house first; and 2) given my placenta issues, we are transferring only one embryo. As a bonus, Dr. H agreed to let me try a natural cycle, where I don’t take Lupron, estrogen, or progesterone.

Given my complicated pregnancy and delivery, he wanted to know where the placenta accreta was — that way, he could transfer the embryo to the place farthest away from where the accreta was. I told him I thought it was on the left of my cervix, but would confirm at my OB/gyn appointment a few days later.

When I ask my OB/gyn, “Was it on the left? I told Dr. H it was on the left,” she has to think about it and I can see her mind replaying the surgery. “Posterior… left, yes!” She asks how I knew. “Because I could feel it, remember?” I said. “It felt like a drawstring being tugged on.” It was kind of funny watching her jaw drop.

When I leave my OB/gyn’s office, she smiles and says she hopes to see me later this year. She knows as well as I do that there are no guarantees. Nothing is guaranteed even when you haven’t had a miscarriage or dealt with infertility, but parents like me take nothing for granted.

Well, that’s not completely fair to say: until recently I hadn’t considered that plenty of my friends have to go through the trying to conceive experience all over again. They have to start all over again! But, me? My embryos are waiting. The conception part is done and dusted, I just have to choose when I want to do a transfer. And I have eight chromosomally normal embryos to choose from. Nothing is guaranteed, but chances are I’ll get to have a second child. I am one of the lucky ones.

Choosing to try to have a second baby wasn’t straightforward — second child and hysterectomy at delivery; or keep my uterus and not have a second child? — but it was easy: I choose the path of least regret, so let’s take the ole girl (my uterus) out for one more spin! But something tells me I’m going to be just fine. Coming within one minute of losing my uterus makes me think fortune is on my side, and I will have the baby and not need a hysterectomy. (In which case, I will opt to have my tubes tied — because, ironically, although I’m infertile, I can get pregnant. I just don’t stay pregnant because my embryos are incompatible with life.)

Meanwhile, my infertility stares me in the face every day because my daughter doesn’t share my DNA. I see our donor’s large, beautiful eyes set in my husband’s Eastern European face. When V smiles, I see our donor’s gappy teeth flash between my husband’s grandma’s cheeks. And our donor’s long-fingered hands, replicated in dimpled miniature, are the ones that reach for my long, angular face with its crooked teeth and deep-set eyes.

Not only does my daughter look nothing like me, I couldn’t forget my infertility even if I wanted to. I need to own my journey to parenthood so I can raise my daughter (and maybe her sibling) knowing that there’s a kind woman out there who shared her eggs with us. For me, there is no forgetting that I am infertile — to do so would deny my children to know their genetic origins, which are rightfully theirs to know about.

As I keep saying, joy and pain can and do coexist. And whatever residual pain and trauma I have, it is separate from the joy I experience when I hold my girl. Grief doesn’t diminish the love I have for her, it exalts it.

So, yeah, I carry the scars of miscarriage and infertility, and, dammit, I wear them proudly. But on the days where a storm is brewing, my scars flare up the way someone else’s bones ache. It’s neither right nor wrong to feel this way — or not. It just IS.

A version of this post originally appeared on On Fecund Thought and is reproduced here with the author’s permission.