Category Archives: adoption

Why I Hate Push Presents

Posted on by
12

Parts of this post have been in draft form and swirling around in my brain for months, literally. Sarcastic and quippy wouldn’t cut it. The right jumping off point lest it sound too rant-y or judgmental slipped through my fingers over and over.

And then this: I recently heard about another devastating late-term loss. And it became so clear.

Life, survival, is a blessing, not a guarantee. Motherhood is a privilege.

And besides all the snarky, quippy reasons I absolutely, positively loathe the whole concept of “push presents” this is at the core. The privilege of delivering a live baby? That is the gift, no?

Let me break down my argument a bit. First off, on a semantic level I find the term itself extremely tacky, not to mention offensive. Perhaps I am being contrary me again, but from my perspective, it is exclusionary and implies that only women who have endured childbirth (you know, that process women have gone through since the dawn of humanity, usually without the benefit of pearls or diamonds?) warrant recognition or have sacrificed.

After all, there’s no “You-survived-the-emotional-heart-choke-known as adoption” present, right? Or “your-gestational-carrier-was-successful-in-delivering your child” luxe item?

And as for the mothers who must deliver babies far too soon, or babies who were on time but not okay, I truly have no words because my heart does choke and my stomach coils up involuntarily.

Please don’t misunderstand me. It’s the attitude of expectation that is repugnant to me, not the presents themselves. This isn’t an indictment of people who get gifts for having babies. If someone’s partner or spouse wants to commemorate the miracle of birth with a gift, that’s great—and it’s also none of my business, or my place to judge.

No, it’s when it goes too far, it’s about the build-up around it, the speculation and prolonged discussion over the merits of some gifts over others, and the belief that a woman is “owed” something elaborate for having a baby that can sometimes occur that is problematic.

Again: the ability to conceive a baby, carry a baby past viability and into a safer range, and have both mother and child survive the birth process, that is a gift. And the ability to come home with a baby or child, regardless of what process made that happen, the ability to be a parent and help another human being develop into his or her own person? That is a gift.

And really? We must commercialize our lives so much that even birth has its own subset of recommended gifts? Not surprisingly, I feel much the same way about elaborate Mother’s Day gifts but I am sick of my own soapbox so I will leave you with some comments on Mother’s Day from the infertility trenches. Sprogblogger writes,

“This year, I’m feeling overwhelmed with appreciation – for my own mother and my grandmothers and all of the women who have ‘mothered’ me in one sense or another throughout the years. But do I feel like someone should be appreciating me, and the work I do? Not so much – because I feel like I’m the one who’s been given the gift of being allowed to mother, so wanting a pat on the back for essentially eating a cookie someone handed me just feels like the grossest kind of greediness –the cookie is reward enough, and thank you!”

The Rest of the Story: Children and Chronic Illness

Posted on by
36

In some ways, I’ve been drafting and revising this post in my head and heart for almost four years.

I first touched on chronic illness and infertility in August of 2006, with this post on numbers, statistics, and hope. Since then, we’ve talked about can versus should, the tough decisions potential parents with chronic illness face, and other universal aspects of having a family. But the behind-the-scenes story? That was never fodder for this blog.

It’s been 44 months since we first started trying to have a family. That’s three years, eight months. Not as long as some, I know, but too long. About eighty percent of our marriage, in fact. Forty-four months later, I see this long journey as characterized by moments of awareness, a series of changes in thoughts and assumptions that challenged our perspectives.

There were moments of realization:

Along the way, I fell completely in love with other people’s children, and realized emotionally what I knew intellectually: unconditional love does not adhere to boundaries of biology or relationship. Parenthood does not depend on pregnancy, something I knew but didn’t really know until I knew. With that, we both realized that no matter which path we took to build our family, we would do the right thing for us and it would be our first choice, not a fallback plan.

I’ve realized no matter how hard we try and how much they really do care, there are people who will not understand, who cannot give us what we need or speak the words we are desperate to hear. I’ve realized that this is okay. I’ve learned to let go.

Similarly, no matter how many consults and additional opinions we’ve sought, no matter how meticulous and deliberate we have been about our decisions, there will be people who judge. And while hard, that too is okay. I’ve realized that doing right by each other and our potential child is all that matters—with that realization comes some freedom.

There were moments of isolation:

Not surprisingly, my ongoing fascination with language spills over into this journey. If you take the adoption route you become fluent in terms like open adoption, or the semantics of birth parents, first parents, adoptive parents, etc. If you look into surrogacy, you’re flooded with euphemisms: at our hospital, the preferred term is “gestational carrier,” and the recommended agencies have all sorts of feel-good names. If you pursue assisted reproduction you start speaking in code: IUI, IVF, 8dp3dt, BFN, BFP, PIO.

But either way, you no longer speak the same language as most of the people around you. You speak the language of “if,” when so many others take for granted the “when.” And some days, surrounded by the “when’s,” the easy talk of when pregnancy will happen and the carefree assumptions about when siblings will arrive, is a lonely place to be.

In another twist of language, I learned that putting the words “very early” in front of “miscarriage” does not mean it is not sad. I wondered if anyone could see the shadows of that loss when I wrote about disappointment. Private sadness is indeed isolating, however necessary it is.

Of course, there were darker moments:

I remember one particular day last spring. It was the first bright, sunny day that thawed winter’s slush, and after a terrible doctor’s appointment it was the first day we truly felt, however fleeting, there was little hope. What good were all these options people kept talking about, I kept talking about, if none of them seemed attainable?

“You know the hardest part of all this? Waking up and going through the day and acting normal when it feels like the world is crashing down,” I said to my husband. For many weeks, when I woke up and realized the situation had not changed, I felt I was in a living nightmare. I hated people to hear or see me cry, so I simply didn’t talk to many people.

Another sunny spring day we all waited in a hospital waiting room, anxious for the arrival of a much-loved baby. I kept jumping up to take cell phone calls in the hallway, re-scheduling consults and high-risk assessments. I was angry, not because I was being told I might never carry children while hanging out in the maternity ward, but because even on this happy day when I wanted to be fully present in the joy, infertility was literally stalking me. It had already taken so much.

We made a cocoon for ourselves so we could filter out the white noise and weigh what we wanted versus what is most fair to a child. Anytime you bring the “can versus should” element into a conversation about children, the responsibility inherent in that is staggering. We take that responsibility more seriously than anything else in our lives.

In these moments, I, we, have learned sadness and grief, frustration and disappointment. But we’ve learned much more. As hard as it was to hide what weighed us down, it is even harder to hide good news, joyful news, especially when it has been such a long time coming and has exacted such a toll.

And so I am pleased to share what is truly a moment of joy: This fall, we are expecting a baby.

It still feels strange to type those words. Despite the many ultrasounds, the many doctor appointments, the talk of showers and strollers, sometimes it is hard to believe this is happening, this thing that happens for other people.

I am incredibly grateful and excited. When I first found out I cried so hard my poor husband thought I had yet more disappointing news for him and instantly went into consolation mode. I simply did not have the words to explain happy tears.

We have pictures proudly displayed on our fridge and multiple teams of doctors monitoring every breath, doctors who never forgot to say “congratulations” amidst all the precautions and variables. What a beautiful word.

We kept this news to ourselves for a long time. It’s high-risk. I’ve already been hospitalized. We’ve lived through loss. I have jobs and policies and details I needed in place. We are fiercely protective of this little one. But at 16 weeks I am getting comfortable telling people, and I love sharing news that is actually good.

And through this all, there were (and still are) moments of relativity:

Infertility was merely the starting point. Infertility with a guaranteed high-risk pregnancy and chronic illness? It’s a tough combination to contemplate, but everything is relative. We have to focus on the tough road ahead of us, and I know we can do it.

Baby showers and pregnancy announcements never bothered me, and seeing babies always brought me joy instead of reminding me what I did not have. I pretended I was immune to a lot of the emotional fallout from infertility, that I was focused solely on risk analysis and decision-trees. Not true.

Now that I am pregnant, I feel the aftershocks of infertility. I see the many bits and pieces it chipped away, and the bits and pieces the high-risk nature threatens. The first time I checked out the maternity section of a clothing store, I couldn’t relax. I was in a cold sweat; I felt like a trespasser. Now that I’m closer to needing new clothes, it’s getting a little more real, a little easier.

After 44 months of this, my gut response to the topic of so-called “push presents” is, isn’t the baby the gift? My mother asked me recently if I had a preference for a boy or girl. “Alive,” I told her. All I want is a baby as close to full term as possible and for both of us to come home from the hospital and be okay. That is the gift. That is everything.

Lastly, there have been moments of growth:

We often sit at night in my husband’s office, soon to be the nursery. He uses the desktop computer, and I sit on the bed with my laptop. We talk about paint colors, and even well into the first trimester I would stop, mid-conversation.

“Are we allowed to talk like this, to plan a nursery?” I ask.

“You are pregnant. We are having a baby. It is okay,” he reassures me.

So I exhale and smile and think about meeting this little person whose waving arms and bent legs on the screen make my husband smile from his eyes and put all the oxygen I need back in the room as if by magic. And I allow myself.

And when I get overwhelmed by the realities of this high-risk pregnancy, when I worry that everything I am doing to keep us both healthy will not be enough, I think of this baby squirming around, a baby who is thriving. This is the only type of pregnancy I will ever know, and I embrace it fully. I allow myself.

I am proud of us, proud that we came through this journey intact, a better team than we started. We always told ourselves that somehow we would be parents. Only a few months into dating, we knew this was what we wanted for each other and with each other. We had no way of knowing just how long a journey this would be or how it would end, but we wouldn’t change any of it.

So I am working on a new lexicon, one centered on “when.” We talk about the baby’s library or imagine walking him or her to school up the street and talk about the kind of parents we want to be, and it is no longer strictly hypothetical. We imagine new moments, new possibilities, and we are buoyed by the one word that started this whole conversation 44 months ago, the one word that is important than ever: hope.

Color Me Riled Up

Posted on by
23

My mother always said she could tell when I was feeling better because I had the energy to be riled up about something. Well, I’ve been free of acute infections for a whopping two and a half weeks, which is actually a December-January record for me, and it’s time.

I’ve written about pregnancy and chronic illness several times, and from different angles: can versus should, the waiting game, etc.

The decision to carry a child, use a surrogate, pursue adoption, or remain childfree is intensely personal and depends on so many variables: disease progression, diagnosis, finances, health insurance, religion, culture, etc.

I completely understand and respect women/couples who, given their particular health and life situations, decide pregnancy—and perhaps parenthood itself—is not for them. (I am focusing on this in relation to chronic illness; I realize these family-building decisions are incredibly complex absent chronic illness, too.)

But what bother me are the blanket generalizations that people with chronic illness shouldn’t have children because they will pass on their bad genes and/or because that child’s quality of life will not be what it could (should?) be if a parent is sick. I made brief mention of this in my Dear Thyroid post, but didn’t get into detail.

You wouldn’t believe where I’ve heard/seen these types of comments: cocktail parties, wedding receptions, blog comments, etc. Usually, the people talking don’t know my situation; they’re just making sweeping claims in passing about things they really don’t know much about.

Internal monologue #1: It’s easy to be a smug 20-something guy two beers into a party and say you wouldn’t marry or have children with someone who’s sick, but let’s just hope for both your sakes that your fiancée isn’t one of the millions of healthy young women who will go on to develop autoimmune or other chronic conditions during peak marrying and child-bearing years. Internal monologue #2: You are only reminding me how incredible my husband is, so thanks for that.

Inheritability is a very serious issue, but there’s a huge spectrum of diseases, from those with a definitive test for direct inheritability (eg Tay-Sachs) to diseases with a genetic component (eg celiac disease). Medical experts have told us if we decide to have children, they are not at risk of being born with PCD. As for the other diseases floating around in my family’s genetic pool, yes, there are many. But considering 130 million Americans live with some sort of chronic condition, are there really that many people who can say things like heart disease, cancer, diabetes, or arthritis, which often have a genetic component, aren’t in their family history?

Want more on this? Please read an older post I wrote on genetic ignorance.

As I think about the second point, the quality of life issue, I am sidetracked by this NYT article on surrogacy. I found the article sensationalist and unbalanced, and was not surprised by many of the vitriolic comments that followed.

I don’t want to get too bogged down in a pro-con discussion of surrogacy and IVF, or the spectrum involved: one couple trying to have their biological child; egg donors; third-party arrangements, etc. But I’d like to point out that just as the majority of people undergoing fertility treatments are not Octomom, most people going through surrogacy are not 60-something, unmarried men who think it’s acceptable to bring bird feces into NICUs. (Confused? Read the article.)

In many ways, I see parallels between the mental illness issue in this article and chronic illness: who is qualified to make decisions regarding a patient’s fitness to raise children? Many people countered this article with comments like “Just adopt.” But I’m taking that phrase out of the context of the article, because it’s one people with chronic illness and/or fertility problems hear tossed around so often. (Cue pulse quickening and face reddening here).

See, here’s the thing. It can be incredibly hard for people with chronic illnesses to adopt. I can’t tell you how often I’ve heard that fear echoed by women with all sorts of chronic conditions. Also? Unless you’re considering the foster care system, which is a whole different conversation, adoption is often really expensive. In some states, and depending on health insurance, assisted reproduction is actually more affordable.

But more than that, throwaway phrases like “just go adopt” diminish what an incredibly emotional and difficult experience adoption can be for all parties. Yes, adoption can be a wonderful thing, but I’ve noticed it’s never the people who’ve gone through adoption who blithely proclaim, “just go adopt” like it is that easy, like it is simply a fallback plan. It’s usually the people who’ve never had to consider giving up a child or adopting one who make those comments.

So where are the in-depth, balanced, mainstream articles about adoption, articles that take a realistic (not sensationalist) look at what is gained and what is sacrificed? Why aren’t more people interested in eradicating disreputable or exploitive adoption agencies, the way we’re so quick to excoriate Octomom’s fertility clinic? (And for the record, reputable fertility clinics have this main goal: one healthy baby.)

Check out This Woman’s Work or Chronicles of Munchkinland for honest, insightful writing on the many benefits and drawbacks of open adoption from an adoptive mother and a birth mother’s perspective.

Similarly, there are those (again, usually those who have not lived with infertility) who say things like, “So can’t you just go do IVF?” And yes, many people with chronic illness can choose that route. But it’s emotionally and physically grueling (especially if you’re juggling other medical conditions), costly, and there’s also that little matter of no guarantee it will work. These are the realities patients who choose IVF accept when they make this decision, but to characterize IVF so cavalierly is really irritating.

Check out Relaxing Doesn’t Make Babies or Infertility on the Brain for honest, compelling writing about infertility, IVF, and loss. Religious and moral concerns aside (because they are many and varied, I know), can you read of such struggle and still say “Can’t you just go do IVF” like it’s as simple as getting a flu shot?

I have not delivered a baby or tended to the ever-present needs of a newborn while managing illness, and I am not currently in the process of adopting a child. But I am a person for whom these conversations are anything but rhetorical. I am not naïve, and as I’ve written in Life Disrupted and on this blog many times, I know that chronic illness complicates every single aspect of building a family and parenting a child. It requires a lot of planning, preparation, and yes, realism.

But to bring this full circle, let’s return to that quality of life issue. You see, this one I am qualified to speak about, because I am the child of parents with chronic illness, parents who were seriously ill when I was growing up and who continue to face challenges.

Yes, there were scary and sad moments, and yes, we all made accommodations for illness. But despite their sicknesses and mine, I had a wonderful childhood. When other kids had parents who wouldn’t let them play on travel teams or attend sleepovers because they simply didn’t want to drive them, my parents hauled us to hockey and figure skating, baseball and ballet—even when on crutches or chemo. They didn’t want us to miss out on anything. Even at the lowest points (disability and potentially terminal illness) they somehow made it work—we never doubted we were their priority, and they gave us every opportunity imaginable. Looking at things from an adult perspective, I am even more appreciative because I have a greater sense of the sacrifice involved.

So I’m a little sensitive when the topic of quality of life comes up, when I hear about how hard it can be for people with illness to adopt or hear passing comments about why people with chronic illness shouldn’t be parents. It boggles my mind the hoops people who aren’t “conventional” applicants must jump through in the adoption process, or the ignorance people who live with illness or must undergo infertility treatments (or both) can face. People who are fortunate enough to be healthy or to have no fertility problems don’t have these expectations on them, yet as we know all too well from headlines, simply being able to conceive and carry a child does not a good parent guarantee.

Some of the best parents I know just happen to have chronic illnesses. When I think of them, that is what comes to mind first: they love their children unconditionally, they put their children’s needs before their own, they give appropriate parts expectation and compassion to their children. I think of them as parents first, and patients second, and I think that reflects the way they live their lives: they are not defined solely by illness, and their children’s lives are not defined by parental illnesses, either.

To reiterate, of course there are situations where people decide their health problems are too overwhelming to add children to the mix. That’s a smart, responsible decision. But my point here is that it is a decision potential parents and their physicians should make, people with actual understanding of the factors involved.

(Cue stepping off soapbox. For now.)

The Waiting Game (and how to play it)

Posted on by
11

(The third in an occasional series about pregnancy and chronic illness.)

A lot of the discussion in the first two installments of this series on pregnancy and chronic illness deals with what happens once children enter our lives: How do we be the parents we want to be with bodies that do not cooperate? In the ever-evolving dialogue of Can vs Should, it is an essential topic, one we need to keep picking back up.

But today I am thinking about the tricky terrain that comes before a baby, the decisions and risk analyses and variables we must weigh when figuring out how it is we will become parents.

For some women, infertility or infertility as a result of other existing illness is the issue. For others, being able to conceive children may not be a problem but due to high-risk medical situations, carrying them is. For others, it is a combination of both.

Regardless of the reasons why things don’t happen quickly, there is still the waiting game, the period of time between when you first realize things will not be easy or quick and when you actually have a child, whether through adoption, IVF, gestational carriers, etc.

Now, I do not claim to be a veteran in these matters and like many aspects of daily life, there are some conversations that will remain offline. Already there are many, many writers and bloggers who speak compellingly about infertility, adoption, and other options. But what I do know is that just like there are so many universals to living with chronic illness, there are many universals to this experience no matter where women are in this wait or why it is they are waiting, namely:

Every decision is deeply personal and should be respected, not judged. In the end, it is your family and your child’s future that matters, not what other people say or think (if only it were that easy!) And of course, the same applies to decisions to not have children after all–only you can truly know what is the best choice.

Each person’s situation is unique and cannot be applied to other couples with other sets of variables (for better or worse). Even women with the same diagnoses can have very different outcomes and different priorities going into things, so do your research and talk to everyone you can, but remember that what works for some people may not be the best fit for you. And that’s okay.

I also think that sometimes the hardest part of the waiting game is interacting with other people who might not know the whole situation or might not know what to do or say. It’s a shifting landscape for everyone involved:

If we want to talk about it, we will. If we don’t bring it up or deflect the conversation, take that cue from us.

Don’t think because we don’t want to talk about this particular aspect of life that we don’t want to talk, or get phone calls, or be the same people we were.

There is a difference between listening to us and advising us. When we want to fill you in but are not yet ready or interested in feedback, respect that. If we’ve brought you into these kinds of discussions it is because we value and respect your thoughts, but know there is a time and a place for your take on the situation. Sometimes we need to figure out how we feel about things before we can productively process what others think or feel. (I’m sounding a bit demanding here, aren’t I? Rest assured these are the same expectations I have for myself and my own personal conversations about this.)

What you may see as a positive may represent a loss to us, or vice versa. What may seem difficult or not ideal to you might just be wonderful news to us. Everyone involved has a right to his/her emotions, but it’s important to remember (or even expect) that there is no guarantee we will respond in the same way.

Please don’t think that people in this waiting period don’t want to hear about other children (or pregnancies), or spend time with other children. Our lives are undeniably richer because of the children already in them, and nothing going on in our lives could take away from that. I can’t speak for anyone but myself but the way I see it, there is no defined quota of babies or good news out there so your good news is just that—good news. It has nothing to do with my situation or my potential to have a family. Why would I begrudge someone else for having the very thing I know is so worth having? So no weirdness or walking around on eggshells, please!

Like I said, I’m certainly not an expert or veteran in all of this, and I know many of you have seen and experienced much more. If you have other considerations, suggestions, or general words of wisdom for everyone involved in this, please leave a comment.

(Editor’s update: I forgot to mention that the best thing you can ask for are these words: “We’re here for you and support you in whatever decision you make.” Fortunately, this is is something I’ve heard often.)

* * *
A totally unrelated PS–Notice the new look at A Chronic Dose? Many thanks to Pink Dezine!