Wednesday, August 28, 2013

choices

Maybe I was a little harsh to Anonymous Mom. Calling her pathetic. Assuming she should be happy. Calling her worse behind closed doors. After all, I have no idea who this woman is. I don't know her from Jane Doe. She could be as sweet as my next-door neighbor.

Blame my hormones?

I was angry reading the article and yesterday's post was my instant reaction. It was hard not to get angry about it as someone who went through so much to become a parent and who still has many friends still fighting to get there. It was hard not to get angry as a parent whose child had medical issues at birth - who would have given her left arm for her baby to experience something as simple as colic instead of the pain she endured in the NICU.

I'm still a little angry. I don't think that's a wrong emotion for me, or anyone else in the ALI community, to experience. When you put your story out there, you open yourself up to the reactions of others. As bloggers, many of us understand this first hand. There is a reason that I screen all comments on my blog before approving them - because some are too harsh to live forever in my space. You have to accept the bad feedback along with the good. There will always be both.

Regardless of this woman's intentions, whether it be venting or seeking sympathy, it's the tone of her piece that puts me off. She sounds incredibly self-righteous, and her husband sounded the same way. Perhaps they should spend their time focusing on trying to change their attitudes before these babies arrive. Immerse yourselves in therapy instead of writing negatively about your family on the Internet (where it will live forever). Learn how to accept the responsibilities of your actions.

But as much as the content of these posts angers and upsets me, I think they are important for us to read. We need to understand the choices that we have on this journey.

I've watched so many people make what they consider mistakes in their path to family building. They spend too much money cycling that they didn't have enough left when they wanted to pursue another path later to parenthood. They went for that second, third, or fourth baby without thinking about the stress on their family. They adopted a child, even though they hadn't truly grieved the "loss" of having a biological one. The list goes on.

When people ask me about the adoption process and filling out the paperwork regarding what they would accept/not accept in a child, I always say the same thing: be realistic about what you can handle, because this is forever. The same mantra could be said for EVERY aspect of infertility, for every avenue of family building.

I hope that this couple gets the help they need before their babies arrive. I wish the best for them and their children. And I hope that all of us take this as a lesson in control. We may not be able to control the hand we were dealt with infertility, but we can control how we choose to play that hand.

Choose wisely.

Tuesday, August 27, 2013

my response to "anonymous mom"

(Some of you may remember this article from a few months back - an opinion piece written by a dad who was expecting twins and who wasn't happy about it. Some of you may also remember my response. Yesterday, the wife of Anonymous Dad wrote a reply of her own to all of those who criticized her husband for what he wrote. Here's my response.)

Congratulations, Anonymous Mom. You finally got what you wanted: someone to feel sorry for you and your husband.

I'm guessing it's not in the way you expected. You see, I don't feel sorry for you in that I feel badly about your situation. I don't sympathize with your blatant lack of respect for your children or family, or your lack of responsibility for your actions. I don't feel sorry for the fact that you are in therapy or that you struggle financially.

Instead, I simply feel sorry for you because you're pathetic.

When I first read your husband's post and responded to it, I thought maybe it was a maturity issue. Part of me said to myself, "Oh, I bet he'll come around and feel differently as her pregnancy progresses or after the babies are born." Now, after reading your version of the events, I realize that this probably won't be the case.

After all, your version of the story isn't much different than your husbands. Every line desperately screams "woe is me."

Believe me, I get it. Wanting kids and not being able to have them is hard. Wanting a sibling for your child is tough, too. Yet, we all make choices. Every day, people in this community choose their next steps in their journey. They mark "twins" as an acceptable choice on their adoption paperwork. They transfer three embryos instead of two to increase their odds. They go for that last IUI, even though they have more than one follicle ready to go. Because they have nothing else to lose.

Some of them do end up with multiples. I'm sure that's terrifying in a sense. It's a huge responsibility. However, there are many others who end up with nothing. An adoption falls through. Embryos don't implant. There is no pregnancy. There is no happy ending for them.

There IS for you. Yet, you don't see it. Instead, all you see is what a burden these children will be, on top of the burden of your existing child.

It's his fault, right? He was a difficult baby, and you don't know how you'll handle that all over again (potentially), times two. Colic is tough. You know what else is tough? Having a child born prematurely. Having a child with special needs or medical issues. Having a child who you WISH would just have colic.

I feel sorry for you because you can't see beyond your own skin to realize that this isn't the end of the world. I feel sorry for you because you are too selfish to understand that what you and your husband are feeling and have written will affect your children for the rest of their lives. And I am sad for your children - that they will grow up and someday learn that you feel "remorse" over their conception. That you blame them for your problems. (Soon, you and your husband won't be the only ones in therapy.)

You ask yourself toward the end why "the universe, God, karma, whatever, whomever think it was a good idea to bring forth twins" into your lives.

Honestly? I think the rest of us are wondering the same thing.

Friday, August 23, 2013

fresh air

Sometimes, you just need a change. This week is was time for me to make that change.

I cut off all of my hair.

I'll be honest: I was very nervous about doing this. It's just hair and it grows back, but I had no idea how I would look with a pixie cut. The last time I made a drastic change to my do, I got bangs and that was a huge mistake. For years after that, I sort of played it safe, but over the past month or so, I felt like it was time to throw caution to the wind and go for it. Go big (or short, rather) or go home.

I was worried that my stylist would try to talk me out of doing it. I mean, I have a LOT of hair. Had.

She was all for it, though. She didn't ask me if I was sure; she just started cutting with confidence.

As I watched my hair fall to the floor in chunks, I no longer felt fear. Instead, I smiled. It felt liberating. From what, I'm not sure. I'm still figuring that out, but I can tell you one thing:

It feels good to be free.

Tuesday, August 20, 2013

13/14 months

I promised to discontinue my regular, monthly updates of K after her first birthday. However, I didn't promise that I would never update about her, and it's been quite some time since I've written about how she's doing.

I've always struggled with this a bit, whether writing about my child on a blog about infertility is "right." No one has seemed to mind, though, and I don't update constantly, so I think I'll leave it this way for the time being. Unless you, my readers, would prefer otherwise. So, straw poll: do you want a separate blog with occasional updates on K? Or would you rather I keep them here? More like: do you mind that I keep them here?

Let me know your thoughts.

***

K continues to wow us with her growth and development. Sometimes, I forget that the start to her life was fairly rough, until I look back at pictures and the NICU memories make their return. Other than her size, you would never know that she was early or that her medical situation was challenging. Even her size seems to be improving. She jumped from 17 lbs. 4 oz. at her 12-month appointment to over 18 lbs. just three weeks later at a visit to check on her ears - which have been fine, by the way, since getting tubes. Talk about night and day.

She's still growing vertically more so than horizontally. I notice this more frequently lately, how tall she is. It feels like she shoots up another half inch each day, and I only notice this because she's trying to reach EVERYTHING. She succeeds in most cases. She's incredibly curious and adventurous. She's not walking on her own yet, but will walk with the support of almost anything she can get her hands on. This includes chairs, the coffee tables, the dog crate . . . you name it. If she can grab it and move it, she's gone.

A small part of me misses when she was tiny and snuggly, but if I had to choose, I would say that I prefer this age. It's a challenge, don't get me wrong. There are nights when I feel like the only word I use is "no." (No hitting. No biting me. No biting the dog. No biting, period.) There are moments when I think she knows she is pushing my buttons - and she enjoys doing so. Yet, the good times far outweigh the tough ones. Every time she learns a new word, I feel pride. Every time she dances to music (her favorite artist is Macklemore), I smile. And every time she blows me a kiss, I tear up. She's becoming such a fun, spectacular little person and I'm loving every minute of it.

Friday, August 16, 2013

the problem with statistics

A few days ago, the National Survey of Family Growth released the latest statistics on infertility. I'm sure most of you have seen it by now, that the percentage of married women who are infertile dropped from 7.4% in 2002 to 6.0% in 2006-2010. I'm sure you've also seen discussions across blogs and social media about the validity of these statistics - their inability to take into consideration a variety of circumstances, such as unmarried individuals/couples, the economy, the decrease in the number of individuals/couples trying, those living child free, etc.

Like most members of this community, I worry that this kind of surface-level research and subsequent reporting may lead people to be less concerned about the disease of infertility and the ways in which it effects the population. Will people believe that infertility is no longer an issue? Will this prove to be a setback in the strides we've made to fight the stigmas associated with this disease?

These fears and concerns became tangible as I read article after article about the statistics, and then - finally - they came to a frustrating halt at this opinion piece posted on Time magazine's website yesterday.

Problem #1: "We live in a world in which infertility storylines unfold in reality shows and IVF ads greet commuters in train stations. And while it's encouraging to hear celebrities share their baby-making woes, the openness can make it seem as if everyone from Hollywood stars to your sister's former college roommate is having problems."

The Real Story: It may seem like society is inundated with stories of celebrities using ART or adopting, but the truth of the matter is that for every Jimmy Fallon or Giuliani Rancic, there are dozens of others who are getting pregnant with medical assistance don't speak about how they got there. There are others living child free in Hollywood or who've adopted, who don't share why they made those decisions.

Hollywood aside, what about the ordinary, every day people who still don't feel comfortable speaking out about this disease? There is nothing open about infertility. Not 100%. Not yet. Until we are at the level where we can walk around with colored ribbons on our chests and have people recognize what that means, what it stands for, and what we stand for, we don't have an openness to our story in the way others do with different diseases. Essentially, we are still branded with a scarlet letter - outcasts for not being able to do what our bodies were designed to do.

Problem #2: "A 42-year-old body is going to have the same challenges getting pregnant in 2010 as 1982."

The Real Story: Maybe. Maybe not. But does this mean that it invalidates the plight of that 42-year-old woman in her quest to get pregnant? Does it make her experience with infertility any less important?

And what about the not-so 42 year olds? What about the people like me? The 23-year-old who didn't fear the inability to get knocked up. Who thought that she would get pregnant at the drop of a hat and was devastated to find out that not only was this untrue, but that she would never get to experience what it was like to carry a child.

Infertility can affect everyone: any age, any race, any socioeconomic background. This isn't just a struggle that is isolated among women who "waited too long to get pregnant." Let's not downplay the fact that many women who struggle with infertility are still much younger than 40. Not buying it? Check out this post on RESOLVE's Facebook page and get first-hand accounts from those who live with this disease every single day. See how many "older" women are on that list. Not many.

Problem #3: "We live in a different world of reproductive science now and can take advantage of treatment advances that our mothers and big sisters didn't have."

The Real Story: Science is great! Science is fantastic! Science is curing infertility!

Or not.

Science is still science. It's not 100% accurate. Medical intervention doesn't cure infertility. Sometimes, it doesn't even make people pregnant. (Tell that to the journalists who keep writing "implant" instead of "transfer" when it comes to embryos.) Perhaps the processes involved with IVF have improved over the years, but if you look at the live birth statistics, they are hardly dramatic advances. See for yourself, in this figure taken from the Center for Human Reproduction (New York):

More importantly, not everyone can take advantage of this wonderful thing called science? Why? Because it's expensive - and, in most cases, insurance doesn't cover it.

Which is why we need to keep being open about it. It's why we need to keep talking and fighting. If we don't, we will never be combat these issues. If we don't, we will never make strides toward better treatment or more insurance coverage.

If we don't, we will never get the respect that we deserve.

Wednesday, August 14, 2013

missed minivan

Most days, I feel good about having only one child. I snuggle my girl and I hold her little hand, grateful for the opportunity to have these moments. The thought of "baby #2" has been pushed so far down into my subconscious that I sometimes forget it even exists.

And then, I witness something that brings it back to the surface, along with a tidal wave of emotions. This week, it was the pregnant lady climbing into her minivan at daycare.

It's not that I want another child. Okay, maybe I do. A little bit. But I don't think that I'm depriving K by choosing not to go through any of these processes again. In fact, I think it's a benefit to her. Sure, going through infertility treatments or adoption again may bring her a sibling - if it works. But who is to say that she and this sibling would get along? Instead, I tell myself that I'm saving her the pain of when it doesn't work. Or rather, I'm saving me the pain and her the side effects of having to deal with my depression - the devastation that goes along with the failure. It's not fair to her, for me to have to put my body, our bank account, and my psyche through these struggles again. (More on this in a moment.)

What bothers me most about not trying for baby #2 is not "depriving" my child of a sibling. It's the lack of choice in the matter.

We didn't make a conscious choice to stop at one because we just don't want more kids or we don't like them. We didn't say, "Well, the early months were hard. I missed sleep. I'd rather not go through that again." It wasn't a decision that we made out of lack of want. It was the decision we made because there was no other decision.

There is the financial burden of having another. It's not like we can wake up one day and say, "Let's start trying again." No. When you're infertile, it involves far more thought and planning. There is the question of how. Would we try again to get pregnant? Would we adopt again? Would we pursue a completely different avenue, like surrogacy or donor embryos?

I think back to the weekend, when I watched Love It or List on HGTV with my mom. The woman who couldn't decide whether she wanted to love or list her home decided to list it because the renovator couldn't give her an extra bedroom. And she needed that extra bedroom because they were going to have another child. She wasn't pregnant. In fact, they'd just had baby number two. Yet, they still knew that a third would happen. They weren't dreaming about it. They were for certain.

It must be nice to have your family decisions under such control. To not have to pick up the phone and call the RE, to see if you can get your husband's sperm shot up into your uterus this cycle. To not have to send an email to your social worker and ask about renewing your home study. I think of all of the things we would have to do, just to start the process for another child. If we decided to do IVF, we would need to go back to the RE, redo all of our fertility testing, make sure we had the time off of work to do a cycle, and travel 90 minutes each way to every appointment. If we decided to adopt again, we would need to get back on the waiting list with our attorney, redo our home study, and redo our profile. And regardless of the choice? We would need to make sure that we had at least $20k in the bank. At least.

That doesn't even take into account how your finances should look after you get that match or after your embryo takes. Then, you have the "ordinary" money issues that come with having a second baby: more diapers, more formula, a second kid enrolled in daycare, another nursery, more baby clothes, and the list goes on. (You can add the minivan to that list, too.)

And let's not forget about the emotional burden.

There is the waiting game. Will it work? Will it take? Will I ever get a phone call? What's wrong with us? Will someone ever pick us? When it works, it's great. I know first hand that it's worth every moment that you worry and second guess. However, when it doesn't, it destroys you - only it's not just you anymore. It's a tiny person, too, who depends on you to take care of her. The sun rises and sets with you. You are her emotional rock, yet you can't be her emotional rock when you can't even be a rock for yourself because your cycle just failed or your match fell through.

All you can do is be emotional.

Even when it does work, there is still fear. There is the worry that it won't stick. There is concern that the paperwork won't be signed. Will you have a child with medical issues again? Could you live through another 5 weeks in the NICU? Longer?

I sat in my car and stared at the mom at daycare. I watched her walk to her minivan, her hand placed gently under her belly as she pulled herself into the driver's seat and took off, the stickers that represent her family size mocking me from their place on the back window.

Or maybe they were just reminding me that I was lucky once, and to enjoy that. To think about my little one sitting inside of that same daycare - healthy, happy, defeating the odds stacked against her. I remember that I don't want to be pregnant, and I don't want to adopt again. I just wish we had the option. I wish we could say that maybe it would happen. I wish that it was my choice, instead of someone else's - my body, the universe.

Instead, that idea - that notion of having another - is long gone. It disappeared along with my fertility into some deep, dark place. And it will never return.

Tuesday, August 13, 2013

#thankyoujimmy

Thank you to Jimmy Fallon, who spoke out this morning on the Today Show about his experience with infertility and became a voice for all of us who struggle with this disease.

Visit NBCNews.com for breaking news, world news, and news about the economy

"If there's anyone out there who is trying and losing hope, just hang in there. . . . You'll get there. You'll end up with a family, and it's so worth it."

Friday, August 9, 2013

words

"Think before you speak."

This is the phrase that many of us heard growing up - from parents, teachers, mentors. We start off like this, with no filter, because we're young and innocent. We don't know any better. We don't know that it's inappropriate to point out someone's physical differences in the grocery store. We don't know that it hurts people's feelings when we tell them we don't like them. Our minds haven't quite grasped that concept yet.

Then, at some point, we get it. We understand that we can't just say whatever comes to mind. It might offend or upset someone else. It might damage or ruin relationships. We learn the power of words.

Or at least most of us do.

For some, this phrase becomes more difficult to live by. People become frustrated or mad, and they simply let go of their words without understanding the repercussions. I've been guilty of this. I think we all have. We reach our breaking point, and we snap - unable to restrain ourselves from the overwhelming emotion inside of us, whatever that emotion might be. Social media only amplifies this. It gives us an outlet through which to convey these emotions. We hide behind our computer screens, and we type out whatever is on our mind. We hit "Tweet" or "Post," and we close our app or our web browser, feeling a sense of relief that we've gotten something off of our chest.

The question is, do we truly think about what we've written before we post it? Do we think about the consequences of those words? Do we think about the ways in which they might affect others or our relationships with others?

I understand that social media is a personal outlet. My Facebook page, my Twitter feed: these are for MY thoughts. I am entitled to my own opinions, as are you. Yet, it's also a medium for engaging with others, and I think this fact alone should compel us, not to think before we speak, but to think before we post. Even worse, unlike speaking, social media keeps a permanent record of those thoughts and feelings. Not even hitting "delete" or "hide" can erase the words you've chosen.

And I know . . . we're also told growing up that sticks and stones can break our bones, but that words will never hurt us.

Sadly, I've watched words do far more damage than throwing a punch. Our skin protects us from those blows. The physical wounds heal. But words? They are the more powerful weapon. They cut through our skin and go straight to our heart. We can forgive them eventually, but we will never forget them.

Words can leave scars that last a lifetime.

Wednesday, August 7, 2013

beyond the rainbow

I treasure every moment with my child.

Yes. Every moment. The ones that make me laugh. The ones that make me cry. Even the ones that make me want to pull out my hair, and there are plenty of those with a pre-toddler who loves to get into the trash can and slam dishes on the tile floor.

I treasure them because I know that, even if it was a day filled with screaming, or plate slamming, or tears, there will still be tomorrow. I will wake up, and I will have everything I hoped, wished, and dreamed for. I will wake up and be a mother - a role I once thought I would never hold. I will wake up and my daughter will be healthy and happy - something that once seemed impossible on those days in the NICU, when doctors and nurses warned us about development delays and disabilities.

Some parenting days are incredibly hard. But I've said this before, and it's worth repeating: every difficult day I experience as a parent is a million times easier than the days I experienced while waiting to become one.

Monday, August 5, 2013

circumstantial infertility

Friday was the first time I'd heard this term, when my boss sent me this article.

The author, Melanie Notkin, defines circumstantial infertility as "childlessness due to being without a partner." It's certainly an interesting and valuable concept: the idea that there are individuals who aren't living child free by choice; instead, they simply haven't found the right partner with which to parent children.

I feel for these individuals, because I understand what it's like to want to become a parent. Badly.

But this isn't infertility.

Not having children because you haven't found someone to help you procreate or haven't found an individual you want to raise children with isn't infertility. It doesn't mean you can't have children. It just means that the circumstances haven't worked out in your favor. It doesn't mean you're medically incapable of reproducing.

That would be infertility.

And this is the problem I have with society, the media, and this disease. We still, somehow, haven't gotten past the stigmas. That it only happens to couples who are older, because they waited too long to conceive. That IVF is a one-way ticket to a baby. That having a baby, regardless of how you do it, will "cure" your infertility. That it isn't a romance problem or a financial problem or a sociological problem. It's a MEDICAL problem.

By calling it "circumstantial infertility," we're doing a disservice to people who've actually been diagnosed with this disease. The people who've gone through the testing and who were told they are medically incapable. The people who've been through cancer or who have endometriosis or PCOS or the people who have blocked tubes or no sperm. The people who know for certain that their bodies are unable to produce or carry children.

I don't have any suggestions for an alternative term, but I do know this much: using the term "infertility" in this context is perpetuating the idea that it is NOT a disease - after we've spent years fighting for it to be recognized as one.

And I won't stand for it.