One and Only; One and Everything? (Or, Parenting after Infertility)

First there was Frank Bruni’s NYT essay on the gift of siblings, which was quoted, linked to and shared all over social media. It’s a lovely piece, and one that made me pause and really consider how much of my life experiences were and are shaped by having siblings, in my case, older brothers.

Bruno quotes writer Jeffrey Kluger, who observed that ““Siblings are the only relatives, and perhaps the only people you’ll ever know, who are with you through the entire arc of your life.” That shared history and familiarity can be a tremendous gift, and source of comfort.

Next came Lauren Sandler’s Op-Ed on being an only child and being the parent of an only child, a precursor to the release of her new book, One and Only: The Freedom of Having an Only Child, and the Joy of Being One. (It’s next up on my reading list.) In her article, Sandler takes on the misconceptions attributed to only children—that they are spoiled, selfish loners—as well as their parents, who must also be selfish, or care more about money or material goods than parents who have several children. She uses research to beat back these assumptions, and urges readers to consider the numbers:

“In hundreds of studies during the past decades exploring 16 character traits — including leadership, maturity, extroversion, social participation, popularity, generosity, cooperativeness, flexibility, emotional stability, contentment — only children scored just as well as children with siblings….only children are, in fact, no more self-involved than anyone else. It turns out brutal sibling rivalry isn’t necessary to beat the ego out of us; peers and classmates do the job.”

Lately, it seems like conversations about family dynamics and the decisions we make regarding family size are everywhere, and I find them cropping up all over the place in my own life, too. At two and half, my daughter is at the age where many of her classmates and friends now have younger siblings. All her cousins have siblings. Sweetly and innocently, she’s already asked me why she doesn’t have brothers or sisters. “Some families and bigger, and some are smaller,” I tell her. “What matters is that families love each other.”

When we’re in line at grocery stores, when I’m pushing her on the swings at the playground, or chatting with other moms, people ask me if she’s my first, if we’re going to have more. It’s a totally natural question, but if you’re parenting after infertility (and high-risk pregnancies) and/or parenting with chronic illness, it isn’t an easy or automatic question. It’s one I’ve been fielding since I was still pregnant with her. My response then was that I was focused on bringing this baby into the world safely, not future babies.

My response now echoes a similar sentiment. “We’re enjoying where we are right now.” After the long journey to get here, the fact that we have this happy, healthy little girl still blows our minds. Everyone responds to parenting after infertility in different ways. We never thought we’d be here, and some days it feels almost greedy or presumptuous or lacking in gratitude to assume lightning would strike twice like this. That might sound strange, but I wonder if some of you out there can relate.

What is a normal conversation for many other families, what is a natural progression in size for many families, is anything but for families with infertility or chronic illness (not that these are the only variables that make this complicated, of course—these are merely the ones that shape my perspective.) I wish this conversation was different for us, but that isn’t our reality. A few years ago, I wrote that the responsibility involved in making a decision like this—to embark on this high-risk road—was staggering. But really, the responsibility of being a parent in general is staggering, the competing considerations don’t get easier: We owe her the best of us, emotionally and physically. Siblings can be so enriching and wonderful. So are healthy (relatively speaking) parents.

It’s not an either-or situation, clearly, but what our responsibilities are to her as a toddler and young child and what she might want or need later are sometimes hard to navigate.

If she is an only child, I admit I sometimes worry about the misguided assumptions about only children as being spoiled or expecting the world to go their way, but I also know that her friends, relatives, and her experiences being in school, existing in groups, and generally learning to be social and empathetic. We’ve worked consciously to find a community, and communities within that larger community, where she will be supported and where she will feel connected to people beyond just the two of us. She calls her extended family and her gaggle of cousins “my people” and those bonds are incredibly important, and will be her shared history, too.

As I read Sandler’s essay and some related interviews with her, one thing that really struck me were all the negative labels attached to parents with only children—that their choices reflect selfishness or materialism, that they chose a small family so they wouldn’t have to deal with the chaos and inconveniences of more children, etc.

Maybe their choices reflect what is best for their individual family unit, and what allows everyone to thrive. Maybe it has always been their plan, their ideal social, economic, and philosophical situation. Maybe it isn’t their ideal choice, and the inability to have more children is a source of immense sadness. Whatever the reason, I don’t understand or appreciate the instinct to judge this choice, to assume negative motivations behind it, or to question the decisions parents make in terms of limiting their family size.

I know firsthand the many benefits of siblings. As a parent in a potential only-child family, I’m hopeful the benefits and opportunities of this path are enriching, too. I appreciate Sandler’s work and that she’s using research to speak back to these stereotypes—I wish she didn’t have to, though.

Invisible Illness Week

This week is National Invisible Illness Awareness Week.

Normally, I write lengthier posts to discuss living with invisible illness, but this year I did something more interactive. Check out my virtual conference on Pregnancy, Parenting, and Chronic Illness, which is now archived so you can watch it anytime.

Definitely check out the other speakers, too, who covered topics ranging from employment, relationships, communication, and other issues related to balancing life with invisible illness. It’s great to see some familiar faces and colleagues in the mix, and get to know other speakers and advocates, too.

Many thanks to Lisa Copen for her tireless advocacy for people with invisible and chronic illness.

Have a great week!

On Books and Babies, Part 1 (Or, Where I’ve Been)

So, here’s a funny story.

My second book and my first baby were due on the same day.

The short version?

The former came a little bit early (but oh how she hung in there) and the latter was inevitably delayed, but in the end, they both came when they were ready.

The longer version? Stay tuned.

Because I think I might actually be able to resurface now.

Thanks for waiting for me.

(And let’s not mention the major revisions in store, m’kay?)

On Anniversaries; or, What is Necessary

Last spring and summer, before things got more complicated, every time I walked by the baby’s room I would stop and enter. I’d walk in and touch something—the side of the crib, a stack of bibs that had been washed and folded, the small pink bunny we bought at the hospital gift shop the day we found out she was a girl. The room gets a ton of sunlight all afternoon, and that’s always how it seemed to me—quiet, peaceful, and full of streaming light.

While an amazing, incredible journey, pregnancy wasn’t always comfortable for me, and I am not talking about all the physical stuff of a high-risk pregnancy. I was awkward in maternity clothing stores, awkward about letting people know I was pregnant (if waiting 16 weeks to tell people beyond the inner sanctum is any indication), awkward even saying the words “I am pregnant.”

It wasn’t because I was waiting for something bad to happen, for that other shoe to drop, or anything like that. It was more that it was hard to believe it was really happening, and if I said it out loud, if it became so very real, I would wake up from the dream. So it was a learning curve, letting go of this safely guarded secret, meshing the real world and all the risks and variables with the dream world.

But her room was different. I know many people, those who have been through infertility and loss and those who haven’t, who wait on decorating and setting up just in case, and I totally get it. I was convinced I’d be that person, too. Instead, there was something comforting about getting it ready early, about the trappings of a baby having a place in our home. (Plus, I had a feeling the third trimester would be…challenging, so I wanted to be prepared).

Her room was my compass, my private act of rebellion and hope. Every time I went in there I smiled, every time I rocked in her glider I felt peace. I needed it to remind me everything would be okay, and to remind me it was not just okay to have hope, it was intrinsic to this whole experience.

Now, I walk into her room and there is a peaceful, sleeping baby or a smiling, wriggling baby read to play. The sunlight streams in just like it did last year and I catch my breath as the two worlds collide, the world of waiting and the world of living, and I exhale.

All of this is on my mind a lot as we near the anniversary of the call that changed so much. Of course I know from firsthand experience that such calls do not just happen at 3am; they happen as you are making dinner quite often, they happen as you’re doing errands, they happen as you are about to have lunch, like this one did. We’ve had lots of calls, but this one I remember in visceral detail.

It was this time last year I learned that it is possible to have your heart literally feel like it will stop beating from fear at the same time it wants to explode into a million pieces with happiness. That grief and sadness and joy and gratitude can co-exist—not easily or gracefully, but they can, and we need them to. Becoming a mother will be forever linked with being my mother’s daughter, and there is a lot to be said for that.

Sometimes, it is hard to believe how much has happened in one year, how much life has changed from last summer to this. It is not just good to be hopeful, but it is a necessary part of being.

On Being a (Chronically Ill) Mother

The next installment of the ChronicBabe blog carnival is all about motherhood and chronic illness, and given my recent post on trying to balance work, parenting, and chronic illness, this theme is certainly on my mind these days.

I’m working on a piece about Mother’s Day, infertility, and parenting, (and hey, did you know this week is National Infertility Awareness Week?) but I think it’s important to look specifically at the chronic illness aspect of things, too…and as the daughter of a chronically ill person, a patient myself, and the mother of a child with some health issues, I definitely have fodder.

The biggest thing that living with chronic illness has reinforced in my parenting is this: trusting my instincts. Our instincts. We bought all sorts of books and guides before she was born, but once she arrived, we quickly realized that getting to know her and paying attention to her cues was the best guide of all. We trusted her to let us know what she needed, and trusted our own intuition, too.

As a rare disease patient with a history of missed diagnoses, I have learned to be an advocate—to speak up when information is incorrect, to ask questions even when it is uncomfortable or awkward, to make sure my voice and my knowledge of my body and my symptoms are part of the dialogue.

As a parent, my job is to advocate for my daughter and to always work for what’s in her best interest. From firing her pediatrician when he continued to ignore her worsening symptoms to fine-tuning the balance between keeping her away from sick crowds during the winter season since she was very susceptible and also allowing her to socialize (she’s an outgoing girl!), I have more confidence saying “I know what is right for my kid”—and, more importantly, “I know when something is not right for my kid”—than I might have had I not lived through 30 years of illness.

I also think we are both more risk-tolerant than we might have been otherwise, especially me. She was such a tough little survivor all the way through this long journey of ours, and through her own health problems (which are under nice control these days), that it is easier for me to let go of fears and anxiety. I joke when I say it, but there is a lot of truth to the fact that if she could survive 37 weeks inside this body of mine, she can handle what the outside world throws at her.

It’s so easy to get bogged down in the labels and categories that come along with becoming parents (and I don’t mean Bugaboo versus Uppababy): Are you an attachment parent? A co-sleeper, a CIO-er, an E.A.S.Y. parent? Are you a breast feeding mama? Do you give your baby a pacifier, do you wear your baby, do you swaddle? Are you a working mom, a SAHM mom, or some variation of the two?

Parenting is never as black and white as these choices. They might contribute to the much larger picture of who we are as parents, but they are only as defining or absolute as we allow them to be. At least that’s how I feel, and how I feel about the possible implications of being a chronically ill mother. Or rather, a mother who happens to have chronic illness. Just as illness was never what I wanted to define my relationships or my career, it certainly isn’t what I want as a defining element of my daughter’s life.

And it isn’t.

But some days, making sure that isn’t the case takes more work than others.

There have been days where I have been really sick and run down and couldn’t imagine getting out of bed, but a certain squealing, chuckling little girl needed to eat whether I felt well or not. There have been days, especially earlier on, when trying to be the mother of a breastfed infant with health problems and the daughter of chronically ill parents who had their own needs left me flattened. There have been nights where, after another 18-hour day, staying up most of the night to watch her and hold her upright when she wasn’t feeling well was difficult if I wasn’t feeling well, either. But you do what you need to do in the moment and get through it, like any parent. Her needs come first.

Living with chronic illness already showed me how important it is to ask for help. Admittedly, this is much more difficult with my daughter because I want to be the one to do things for her and with her, but this is perhaps the greatest negotiation of parenting with chronic illness: I can’t be what she needs me to be if I am too sick.

It’s a line I am always balancing, and it took me many months to be able to start to make some of those choices—some days, that means she has to wait while I have my chest PT, some days her father does the morning shift, some days I abandon my word count to get some more rest so that the next day, I can give her all the energy I have.

I’ve come to see that those days where I have to shift things a bit still mean her needs come first—it’s just an alternative way of making sure she has two happy, (relatively) healthy parents who can give her what she deserves.


I do plan to post something coherent about work, chronic illness, and parenting very soon, but right now, while I am limping across the finish line of the semester, indulge me in some more unstructured thoughts on being a parent.

Time. As I taped my daughter’s Easter picture to the refrigerator this week, I realized a few things: this was the first time my own child’s holiday picture kept her cousins’ pictures company up there; this time last year, we already had three (of many) ultrasound pictures up there to greet us every time we went into the kitchen; it was this week last year that I finally went public about being pregnant. A year ago April 16, I felt my daughter move for the first time, and this year, almost to the day, she cut her first tooth and balanced on her own standing up for a few seconds. It is hard to wrap my head around everything that has changed in this past amazing and challenging year.

Relief. I was back at my (our) hospital for an appointment of my own this week. I’ve done my very best to avoid going back there, having spent far too much time there during the pregnancy. Anyway, it is such a different experience evaluating pulse oximeter results and medications without worrying about the impact of the numbers on a growing baby. Knowing her welfare is no longer tied so wholly and viscerally to my own health is reassuring, yet the relationship between my health and what is best for her is still a regular negotiation: to be the best mother I can be for her, I need to feel as well as I can. (See also: upcoming post on balance….)

Gratitude. “Every morning is kind of like Christmas morning.” We agreed about this the other night. It was almost 1 am and we’d both had a very long week, but none of that mattered, or matters. Knowing there is a wriggling, giggling little girl waiting for us every morning often makes it hard to sleep.

And, in lighter terms…
Humility. I was getting a bit cocky last weekend. In one day, I’d managed the logistics of swimming class, a play date, and a birthday party with nap time and meals (and final papers! And work deadlines! And a nasty, plague-like virus thing, oh my!) and everyone was intact and smiling. Clearly, I was too confident.

As I went to fold up the new stroller and head to our final destination, I could not figure it out. Like, 10 minutes into it, sweating and exasperated, I still couldn’t fold it up. I pulled tabs, I pushed bars, I moved wheels. I may have sworn a few times, and I may have even tried shoving the whole thing in the back still upright. With the guy who was waiting for my spot impervious to my motions to move on, I got more flustered and more inept. Eventually, he got out of his car to help me and he couldn’t do it either, but that didn’t make me feel better because I’d had lessons. Fearing a situation just like this, my husband, who is used to the manifestations of my spatial relations problem, had walked me through it several times. Thankfully, a second passer-by, the mother of twins, hopped out of her car and came to our rescue.

So a good fifteen minutes after I buckled my daughter into her car seat and tried to leave the parking garage, I was ready to go. The only upside is that this time, I hadn’t gotten lost actually getting to my car, which is a routine occurrence in parking garages.

So there’s that.

Let’s hope she gets her spatial abilities from her father….

As Long as Everything’s Okay

It’s a cold, rainy March day and I can’t help but think about this time last year. It was right around now that our basement flooded from epic rains, the infection I’d had since January got worse, and I ended up in the hospital for a few days. It was the busiest point of my semester, and it was when I tumbled down the rabbit hole of work and chronic illness.

And, I was twelve weeks pregnant when I was hospitalized and very worried about the baby, but couldn’t tell you that then.

I can’t speak for anyone but myself, but when you go through infertility and loss you don’t look too far ahead. Just let the baby get through this, I remember thinking. Let us make it to the second trimester okay.

I watched her (of course I didn’t know she was a she then) dart around the many ultrasounds I had that hospital stay, eyes glued to the screen while the medicine floor—charged with taking care of my lungs—consulted with my fetal medicine team, who were charged with keeping the baby safe and evaluating which medicines I could take.

When we were several weeks into the second trimester, and I finally came out about being pregnant, reaching viability (or, 24-25 weeks) was the next milestone. Naturally, people asked me if we had a gender preference, which we didn’t. However, people looked at me strangely when I answered “alive” as my preference, so I learned to say “as close to full-term as possible,” and had conflicted feelings about the familiar old phrase, “as long as it’s healthy.” When we had scares at 28 weeks and I went on bed rest, and more scares at 32 weeks with my lungs and 34 weeks with my lungs and pre-term labor, all we wanted was for her to be okay. Every single day she stayed on the inside was a victory for us.

And then she was born, and I could finally hold this tough little girl who did so well for so long, who thrived even when the circumstances indicated she shouldn’t have been. She was whisked away for a (very short) NICU stay, and all I could think of was, just let her be okay. I couldn’t wait to have her in my arms again.

I’ve thought a lot about the whole “as long as she’s healthy” sentiment the past few months. Thankfully her health issues are not serious, and thankfully they have not impacted her development. She’s a strong little peanut—she’s been sitting up unassisted since she was a 4.5 months old, and is ready to take off and crawl all too soon. I joke it’s from all the steroids I took during pregnancy. We call her a little toughie because she rarely complains, even when not feeling well. She’s known as the baby who loves the doctor’s office, and never stops smiling and flirting with everyone, even when they are poking, prodding, and testing her.

One of her doctors is on the same floor as the pediatric hematology/oncology clinic and there is nothing like seeing that sign to make you feel simultaneously grateful your kid is basically fine and also heartbroken for the children and parents going through so much worse.

Way back, when I was a teenager and younger adult and babies were merely hypothetical, it was so easy to focus on the things that don’t matter. I’m competitive, and admittedly I can be an intellectual snob, and I remember thinking how I’d want my kid to do well in school, to go to a prestigious college, etc, etc.

That was before. Before facing mortality more than once, before falling in love and getting married, before 4 years of infertility, before people told me I would never or should never have a child, before loss and grief and hope and joy swallowed me up all at once. It was before I saw a tiny flicker of a heart beat at 6 weeks, before the drama at 12 weeks, before finding out “it” was really “she,” before tiny kicks and punches and more hospitalizations and complications. It was before I discovered cranberry juice made her dance inside me, before I held her in my arms for the first time, before I saw my husband’s face in hers.

And of course, it was before she held my finger while eating, or started my day by squealing and laughing in her crib; before she stopped what she was doing when someone said “Mama” and stared right at me. It was before I experienced how scary it is to see your baby sick, and how reassuring her big smile could be. It was before she learned how to give hugs, and big, slobbery kisses, before I realized that her deep belly laugh could make me laugh harder than anything else, ever.

She will be six months old tomorrow, and I can’t believe that. Honestly, there are still days I am in awe this is our life. In the middle of the pregnancy chaos I wrote about taking it one day at a time to stay sane. Now, I find myself focusing on taking it one day at a time, simply so I don’t miss a minute of this amazing journey, this “after.”

If she grows up and loves school, great. If she outgrows her health issues, absolutely fantastic. But in the end, as long as she is okay, as long as she is happy and knows she is loved unconditionally, that’s all that matters. Turns out the refrain that sustained me throughout our pregnancy–just let her be okay–sustains us still.

Rare Disease Day

Today is Rare Disease Day. Check out ways you can get involved here.

Having rare diseases is an enormous part of my experience living as a patient, if not the most defining characteristic. Read a more detailed and well-argued version of my thoughts here, in my official Rare Disease Day post from a couple of years ago.

(Because, you know, were I to attempt something like that today, with work and symptoms and pediatric doctor appointments and awful rainy weather and physical therapy, I’d blink and miss posting today altogether. And that would be a huge advocacy fail.)

I will say, though, that the rare disease phenomenon was never more omnipresent than during my pregnancy and delivery. A high-risk, medically intensive pregnancy is one thing. A high-risk, medically intensive pregnancy with rare diseases? That’s a whole other kettle of fish. Limited data, limited testing available, limited understanding and awareness of the disease(s) on the part of health care professionals, and very limited experience working with pregnant patients like me is a natural byproduct of living with rare diseases. Like so many patients, I’ve found it frustrating when practitioners don’t know what I have, can’t pronounce it right, and lump me in with patients whose diagnoses are not the same.

But when that happens and it’s my baby’s health at stake, too? Much harder.

When you live with disease so few people have, you don’t have the same sense of community. You might not ever know someone with your condition in person, and you will likely never see a disease-specific walk-a-thon or awareness bracelet. Sometimes, I feel like the real community we have is the umbrella population of rare disease patients, where we are united by what makes us different.

Today is a day for all of us to show solidarity, to advocate for the research and awareness so crucial to our health.

What’s Guilt Got To Do With It?


How appropriate I am thinking about the prompt for the next edition of Patients for a Moment tonight, the night before my full-time academic schedule begins. (I’ve been part-time for weeks but that doesn’t make tomorrow feel any less significant.)

But that’s a whole different working mother post.

Guilt is one of the predominant emotions that accompany chronic illness. Certainly it waxes and wanes but it is inescapable. In my experience, it’s the ways in which illness impacts those around me that is the cause of much of my guilt, and from the patients I spoke to when I wrote Life Disrupted and the conversations we’ve had on this blog, I think that’s pretty universal.

There’s the guilt I feel when I have to cancel on friends yet again, or cannot be there for them when I’d like to, or need to rely on them for more help than I’d like. There’s the guilt during periods of particularly serious illness when it feels like things are so one-sided, and I am taking a lot and do not have a lot left to give.

I’ve written a lot about the guilt involved in marriages with chronic illness, and the toll invisible illnesses take on those who live with us and care for us. I am so grateful for all the ways in which my husbands supports me (physically, emotionally, etc) and all the compromises and accommodations he has made over the years because of my illnesses, but of course I wish he did not have to do those things.

When I was pregnant, I wrote about the anxiety that comes with a high-risk pregnancy, and the preemptive guilt I felt when I worried that something going on with my body would somehow harm my baby. Every non-stress test, every biophysical profile, every appointment and blood test and hospitalization was tinged with that, and literally not a day goes by where I am not grateful that she is here, and she is safe and happy.

But now that she is here and growing more alert and aware by the day, there is yet another permutation of guilt, because I am starting to see the ways in which my illness affects her. So far, the impact is minor, but I hate it when, for example, I am having my daily chest physiotherapy and she is in her bouncy chair next to me and needs me and I cannot give her what she wants. She doesn’t understand why, and I hope she is not confused as to why I leave her there. This is just one small example, and I know intellectually she is fine, but in the moment I hate it so much.

I am sure the older she gets the greater the stakes will be, and the things I might have to miss or might not be able to do are things she will notice even more. But I can’t worry about that now; that is not productive for me and it doesn’t do her any good. All I can do is give her my best on my good days and especially on the more difficult ones.

The closer we are to people and the more they mean to us, the more they shoulder when it comes to illness; the more our bodies’ idiosyncrasies and problems become theirs. It is so easy to let guilt over illness consume us or overly define relationships and attitudes, but my health issues are but one part of me. Therefore, they are only a piece of the relationship I have with my daughter, with my husband, with my friends and family. If I remember that and keep things in perspective then that’s all the better for her.

(It only were it as easy as that, huh?)

Bring It, 2011

I did a brief 2010 year in review last time I wrote, but I can’t let the upcoming New Year arrive without some sort of reflection.

This time last year, we were battered from a long, tough fall but were also incredibly hopeful about the year about to unfold. In fact, in my New Year’s post I wrote:

“It is one thing to say that having hope is important, but it is another to be truly willing to accept things that are out of your control, to have hope things will work out even if in the moment, you can’t see how or when. That is the hard part for me, anyway.”

What a prescient sentiment to kick of 2010, the year of the highest of highs and some truly significant lows. Having hope things would work out even when I could not see or know how was key to making it through some intense moments this year. A grueling pregnancy and delivery and a serious family health situation certainly demanded hope and faith, and the miracles of life and of survival were (and are) truly breathtaking.

I am someone’s mother. I still cannot believe that sometimes, especially when re-reading thoughts from this time last year, when so much was uncertain.

I do not like listing resolutions; I find them limiting. I’d rather work toward a larger goal. So, for 2011, my goal is to work towards finding balance. That might sound really general or clichéd, but my anxiety for the upcoming year is that I will have trouble with balance, so I’m trying to preempt that. I am someone’s mother now, and 2011 will be all about working everything else (full-time job, book to finish, relationships, household stuff, illness stuff, family stuff, etc) around that.

However, 2010 taught me some important lessons that speak to finding balance, namely:

Be flexible with expectations for myself. (Ongoing breastfeeding saga of 2010, I’m looking at you here).

Know that what works today might not work tomorrow. (This refers to baby schedules, body parts, you name it. Roll with it.)

Make those to-do lists a lot shorter and more realistic. (If bed rest didn’t clarify this, a newborn certainly did.)

Remember that somehow, everything will be okay. (I joke that if my daughter could survive 37 weeks in this body, she can take whatever the world dishes out to her and thrive. Kidding aside, sometimes I need to remember this perspective—no matter what unfolds, we’ll find our way.)

And lastly, take nothing for granted. (Then all of the smaller prioritizations, lists of supposedly important things, and conflicting roles somehow work themselves out.)

So while it’s a few days early, happy New Year. Thank you for reading and for following this journey, especially this past year. Whatever your goals or resolutions are, may 2011 bring you peace and happiness and as much good health as possible.