Category Archives: parenthood

Living the Dream (Or, It Takes a Village)

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Every now and then, like when it’s well past midnight and I’m setting my alarm for 4:45 so I can get some work done, or when we’re trading notes on how many loads of laundry and changes of clothes Norovirus necessitated, my husband and I will mutter “Living the dream,” and smile (smirk?) at each other.

Of course we always say it in jest, and because sometimes a little levity can make another pre-dawn computer session or raging case of toddler vomit a bit more manageable.

The thing is, though, we really are. Living the dream, that is—our particular notion of what a dream should look like, anyway, and all the lack of sleep and crazy juggling and contagious viruses and daily minutiae pale in the face of that.

I don’t like winter. The days are too dark, everyone is sicker more often, and this winter there are just too many variables to manage—teaching, side projects, book launch, merit review, household maintenance, chest PT, and of course, the really heavy stuff, like watching my father’s kidney failure progress and working on the logistics of a transplant and medically complex post-op care plans. I am tired, and I just want it to be spring.

The irony that spring represents hope and renewal is not lost on me. (But really, I’d be happy with weather warm enough for a trip to the playground, or possibly a nap.)

Anyway, as we claw our way through this snowbound February (and yes, it really is starting to stay lighter later on), I’ve taken to re-framing how I think about nineteen-hour days and the often overwhelming nature of the here and now.

Living the dream. We have a happy, healthy, joyful little girl. When she is at school, she is in a wonderful place where she is loved and where she is thriving. I get to spend so much time with her every day, a lot more time than I would in other professions, and I try not to take that for granted, ever. We go to the library and playspaces and gymnastics class, we do playgroups and playdates. We read books on the couch and hide treasures in her tent and I try to say yes to finger paints more often than not—“Just throw me in the tub right after, okay, Mama?” All the other stress and sadness and obligations of life fade away.

Part of this is because higher education is a bit more flexible schedule-wise, part of this is because I am willing to work late nights and early mornings, and a huge part of it is because I work for a wonderful institution with accommodating superiors and administrators. They support me and allow me to do what I enjoy with students I enjoy. There is room for professional growth, and innovation and initiative is rewarded with responsibility and recognition.

I have an agent and a publishing team who have been equally accommodating, and whose guidance has really helped my writing career. And lately (stay tuned) some incredible writing opportunities have come my way, things I wouldn’t have thought possible if I had sought them out myself, and all I can do is be grateful and give them my all.

My husband is almost two years into starting his own business, and while the hours are long for all of us, the benefits outweigh the (many) stresses. Seeing him get great press or expand his production facilities to meet increased demand is nice, of course. But knowing he is doing something he believes in, and something that while grueling, allows him the flexibility to come to her doctor appointments, drop her off at school, and be present in so many aspects of her daily life, is even better.

Along the way, we’ve been blessed personally and professionally with mentors and cheerleaders, those whose encouragement, advice, and enthusiasm have helped us to take risks and fight for the life we want.

Way back in the day, I wrote this post on how it takes a village when it comes to having chronic illness and raising children. And it absolutely does—when she’s sick or I’m sick or we’re both sick, we need helping hands. But unsurprisingly, my pre-child understanding of that village was a bit narrow.

The village stretches far beyond those who can help out when we’re sick, or watch our daughter so I can go to the hospital. It also includes the cheerleaders and the mentors, the bosses and the schedulers and the administrative staff, the professional colleagues who go out of their way, the doctors, nurse practitioners, and nurses who manage our conditions, my physical therapists, the daycare staff, and so many more. It’s the family and friends who are a constant, and those who understand when life gets complicated and we fall off the radar.

If I’ve learned anything in the months since we started looking for a living donor for my father and we’ve witnessed the amazing outpouring of support and sacrifice, it’s that the web of people who care is intricately linked and stretched out beyond our immediate circle, and beyond the circle beyond that circle, even.

I won’t deny this is a hard season we’re in, in every sense of the term. As is always the way, it seems like there are so many exciting things going on right when so many tough things are. I know things will get easier soon, when the book is launched and I’m feeling better and the work winds down a bit. I also know that things could get much harder before they begin to get easier. I can’t wait for spring, but the enormity of what could happen between now and then is hard to translate.

For now, I am keenly aware of all the scaffolding that exists that supports us and enables us to live this dream, in all its imperfections.

On 2013 (Or, Side by Side)

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It was helpful to re-read my New Year’s post and its emphasis on being more present as I thought about how to approach this first post of 2013. Being present, being mindful, really, involves focusing on the actions and emotions of the moment.

Grief. Joy. Sadness. Happiness. Side by side.

A couple of years ago, once we were through initial trauma of my mother’s brain injury and could focus a bit more on issues of rehabilitation, the losses stretched out in ripples, and the fear and sadness also mixed with gratitude and anger. After so many years of struggle we were finally expecting a baby, and here I was, in my third trimester, on bed rest and fighting to keep that baby safe. I wanted my mother. I wanted my daughter to know her grandmother. I wanted her birth to be free from all this heartache and upheaval, not just for me or for her, but for all of us. I was angry that we wouldn’t be able to just have the joy.

But I didn’t realize then the heart and mind’s capacity for preservation and compartmentalization. I didn’t know that I could weep for mother’s situation and yet hold my daughter in my arms and feel pure, all-encompassing joy. That even when it felt like things were crashing down around us—mother in rehab, father in the hospital, maternity leave that ended early, sickness for baby, sickness for me, plus all the normal newborn, breastfeeding, sleep deprivation woes—I could feel so utterly content, that even as my hold on all the other moving parts of my life slipped through my fingers, I never felt more solid, stable, or sure.

Over the past two years, I’ve often thought about this dichotomy: How I’ve never been happier than I am when I am with my daughter, how this always-cheerful, adaptable, chatty, precocious little girl has changed us, changed everything. How I gain so much every day I get to be her mother, even as more and more slips away. How I’ve re-calibrated to an ever-shifting sense of normal, where I watch people I love suffer, where we all shed more tears than we used to. Guilt lingered—did the many tears I’ve shed somehow take away from my gratitude for her? Did the joy and the love somehow mean I didn’t appreciate the gravity of all the stresses around us? Could I feel both so completely and simultaneously and have each one be true, be real?

Yes. If there is anything I have absorbed from the past few years, it’s that.

I remember so clearly the day this fall we found out my father’s lone remaining kidney was indeed failing. I called my husband but couldn’t get all the words out to tell him, there simply wasn’t enough air. Heart-ache, I repeated the word in my head as I battled my way down busy Huntington Ave, the traffic lights blurry through hot tears. This is what it feels like when your heart aches.

I picked my daughter up from school later that same day and listened to her chatter away about her day and who and what she played with. We went to the library, where we played with trains and picked out books. She held my hand in the parking lot, and helped me empty the dishwasher. In the moment, in the middle of our normal activity, I found the air I needed. I laughed. Again and again the pieces threaded back together.

Watching my father deteriorate these past few months has been a series of chest-clenched moments, where I know what I see but don’t want to see it, where I can’t talk about it so most times, I don’t. I’ve been conscious of creating time where my parents can be with my daughter. No matter how terrible he feels, when he is with his grandchildren, when they run to him with their arms outstretched, when my daughter climbs onto his lap and says, “I love you so much,” nothing else exists for him but that moment.

Waiting for his transplant and watching him get worse and worse while at the same time, having so much hope and optimism that he will have a good outcome…again, we have grief and joy, sadness and hope, all mixed up.

I won’t say that the heart-bursting gratitude we have for our daughter, for this life we’re living with her, is sweeter or more appreciated because of all the difficult stuff that exists right along with it, because I can’t imagine feeling any less than this, regardless of what else might be going on. No one ever gets just the joy, that’s not how life works. But if we’re lucky, even with the sadness, we still get joy. We can feel both so completely and simultaneously and have each one be true, be real. Side by side, each a measure of love.

So that’s my hope for 2013. I don’t know how much of the tough stuff the year will bring, but I want to be mindful and fully present in the joy wherever we can find it, to not let it slip by without squeezing every ounce out of it.

Invisible Illness Week

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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!

Letting Go

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“I love you! Bye bye!”

And with that, she was too engrossed in arts and crafts to give much notice to our leaving. I spied a glimpse of her through the window as we crossed the parking lot: earnest, happy, comfortable.

As far as first days of school go, it was a success. (She’s not quite two so it’s a daycare at a school, but she likes calling it school and feeling like a big kid.)

There is so much I am excited for her to learn. Now, she’s known all her colors, numbers, and letters for a really long time, is good with self-care, and says “please,” “thank you,” and “bless you” when people sneeze. Those aren’t the kinds of lessons that matter to me right now. Instead, I am eager for her to socialize. To learn to share, and to cultivate an awareness of others and their needs in relation to her needs and her wants. To learn how to situate herself and her personality within a group of peers, and to remain confident in her ability to play and discover independently, too. I am excited to see how she grows and changes from these oh-so-important life lessons.

It’s a big change for our family, out-of-home care, and we love the place—dedicated staff, part-time hours that meet our needs, and wonderful activities and opportunities. It’s a good change, and she is thriving there, so it is time to give her the space to do that. But it represents the beginning of so much: the little world she has known so far is getting bigger, and for the first time, people beyond our relatives and our close friends will have direct influence on her. This is all natural and normal, but letting go…it is not easy.

I tend to think in semesters, an inevitable byproduct of twenty-one years of schooling and now several years teaching in universities. September always feels more like a new year than January 1 does, so it is fitting that so many things are transitioning right now.

The final copy edits are done on my book, which is now with the typesetter. I should see proof pages soon. Obviously I feel an enormous sense of relief to be at this stage, but it’s also unsettling. Maybe this is a normal part of writing, but right now, I am overwhelmed by the idea that this is final, there is nothing more I can add or change. Right now, as it turns from a marked-up manuscript into an actual book, I am plagued with what isn’t there, the themes and ideas that I didn’t delve into. Scope is incredibly hard to manage, and while intellectually I know I can’t include everything that’s ever interested me or is somewhat related to my topic or I’ll have a thousand pages, I can’t quite silence the little voice that asks, “What about…?”

I tell myself I’ve done the best I can, I’ve put in the hours and the revisions and asked the right questions and now it is out of my hands. Soon these pages will be out in the wide world, and so many more eyes will see them beyond the tight little circle of readers and editors I’ve had. The words will have to stand on their own, and it is time to give them the space to do that.

It is normal, it is natural, it is the progression of things.

But when pieces of your heart are out there, the letting go? It is not easy.

Gifts, Not Wars

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So I am way late in writing about the now-infamous Time cover story “Are You Mom Enough?”

I’ve read lots of responses to it, including this thoughtful Boston.com blog post, but every time I tried to compose a post, life (work, infection, moving,) and, well, mothering, pulled me away. So here it is, 3:30 am, and I just finished up some work and can begin drafting my thoughts.

More than anything else, my initial reaction after reading the article on Dr. Sears and attachment parenting (and the extreme some parents can take it to) was to ask, who cares? I’m not being glib here. I am too busy getting through the day and doing the best I can for my kid and for everyone and everything else in my life to care what other mothers and families are doing. Formula or breast milk? None of my business. Pacifiers or thumb sucking? Again, not my call. What’s it to me if you co-sleep or Ferberize or Baby Whisper your way through the night? I’ve got my own sleep to worry about. I have my preferences and my data and evidence for my own decisions, and a pediatrician I trust to discuss things with, but my choices don’t need to be yours.

Before my daughter was born, I read Dr. Sears’s Baby Book. And I read What To Expect the First Year, and the American Academy of Pediatrics’ Caring For Your Child, Birth-5 Years. I read books on breastfeeding and sleep habits and baby-food making. I bought a baby carrier and pacifiers and washed the sheets for the hand-me-down bassinet.

And you know what? Then I had my daughter, and I quickly realized the best information about raising her came from her, that if we paid attention to her cues and adapted as her needs changes and listened to our instincts, we’d figure it all out.

Turns out she hardly used the bassinet because her reflux and other health problems meant she needed to be upright. Turns out she loved napping with her head on my chest and her legs tucked up under her, and that the old adage I’d read was true: Babies don’t keep, so hold them as often as you can. Focus on the moment.

Turns out she loved her pacifiers but gave them up without much fuss. Turns out she didn’t really need that 4am feed and just wanted to hang out, and that sleeping through the night came naturally for her when she wasn’t waking up to socialize. Turns out she didn’t use that baby carrier nearly as much as she did in my pregnancy daydreams because even as a tiny infant, she always wanted to be upright and on the move. Turns out my husband was right, a baby food maker is unnecessary if you have a couple of pots, a blender, and the desire.

Turns out the world didn’t end and I didn’t feel any less bonded when I had to stop breastfeeding at six months (this, after eliminating dairy, soy, and eggs; after lactation consults and digital scales and hospital grade pumps; after mastitis and supply issues and multiple supplements every day and Oh My God I am spending far too much time pumping for so few ounces when I could be spending time with my baby!) Plenty of other mothers nurse much longer, and some never do, and we’re all doing the best we can with the variables we have. The learning curve of motherhood is steep enough.

So why does this idea of “mommy wars” persist? Jenn at What The Blog?, wrote, “Mommy wars aren’t created by magazine covers. They’re created by moms who doubt their own choices then attack others who are different just because they’re threatened by self doubt. Mommy wars aren’t against each other. They’re against ourselves, and that’s why no one ever wins.”

To an extent, I agree with this. With some time and distance to move past my immediate reactions to this dialogue, and as I watch my daughter grow into more of an independent little person every day, it occurs to me that parenting is an opportunity not to be better than, but simply to bebetter: better versions of ourselves, because our children notice everything we do, because just as we take cues from them, they take so many cues from us.

If we want our children to be compassionate, to be open-minded, to be the ones who stand up for the misfit on the playground or speak respectfully to elders, that starts with how they see us treating others, speaking to and about others, and speaking to and treatingthem. If we want them to have confidence in themselves and in their ability to make decisions and act independently, then we need to model that confidence in our choices—our parenting choices, our work choices, our lifestyle choices.

Maggie May at Flux Capacitor writes, “We are given this gift in our children, the gift to be stewards of the making of their brains and souls and bodies. We are watching a supernova be born, we are watching something as breathtaking and fragile and combustible and miraculous and beautiful as a star being born in the few first years of our children’s lives.”

I am not a patient person, not naturally inclined to be carefree or completely engaged in the present. When I am with my daughter, those things come much more easily. That is a gift she gives me.

In some ways, I am in a little mothering bubble—not quite a SAHM but with an unconventional schedule that allows me lots of time with my daughter, and despite a full course load and teaching overload plus a writing career, not a traditional working mother, either. It’s hard to find a real sense of community when you straddle different worlds (a longer post on this is coming), but it also insulates me a bit from whatever competition or judging might go on (mostly).

But what I’ve taken from the newborn classes and infant music sessions and the playgrounds and library storytimes is this:

Look for the mothers who, despite the blowout diapers and missed naps and toddler meltdowns, despite the lack of sleep or downtime and the stress of the daily grind that motherhood entails, have joy. Joy in their children, joy in the visceral, physical act of parenting. I’ve seen them, I’ve witnessed their ease and confidence and comfort in their own mothering skin, and I’ve learned from them. Whatever Mommy Wars might be going on don’t seem to touch them. That is a gift they give to their children.

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Changing Spaces

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It’s been an intense spring, one marked by necessary cuts. Some are exciting and liberating and others are more raw, but all are ultimately for the better.

Like many of you, I suspect, I often write and blog to process, to work through decisions and reflect on experiences that have already happened. A couple of months ago, when I wrote this post that started as a rumination on the writing and editing process, it really did begin with writing itself, and slowly stretched to ideas about living with illness. Still, it was primarily retrospective.

But I thought about the idea of “necessary cuts” constantly after I posted, and a couple days later, I had a life-altering epiphany. The writing informed the decision, not vice versa.

We should sell our house and move.

A few weeks after that moment of clarity, our house was thoroughly scrubbed, streamlined, and staged, and went on the market. We scoured neighborhoods in new places, comparing schools and commutes and spaces, and driving by listings. Just a couple of weeks later, our house was under agreement, and a few weeks after that, we signed an offer on a house in a much different place.

For the past four and a half years this has been a wonderful home. It’s got character and a good layout, and is in an active area with many urban amenities: public transit, coffee shops and restaurants and playgrounds in walking distance, proximity to highways and hospitals and so much else. Yet many of the things that were attractive to us then don’t necessarily reflect our reality now. Just as suddenly as we fell in love with this place (and it was immediate—we weren’t even looking for a new house), we knew it was time to move on.

For the first time since I was eighteen, I can see myself living somewhere where espresso, Thai food, and the subway are not within steps of my door. There are many reasons to leave that make sense to us, just as there were many reasons to live here when we bought it. But this house, as much as we love it, and the lifestyle this house represents, simply aren’t the right fit for us anymore.

It’s a necessary cut, indeed.

We held our breath a lot in this house, and did a lot of hedging. We were drawn in by the spacious, quirky bedrooms, eyeing the sunny front bedroom as a possible nursery someday, yet in the same breath we told the then-sellers to take their swing set with them because we knew there was a real chance we’d never have a child to push on those swings.

We are living in the after, not the “if,” and we have a lot more clarity in terms of what we want, but more than that, what we need.

Beyond concrete items like the walk-in closet or the updated kitchen, there are many things I will miss about this house. It was where neighbors became friends. It was where a business was launched over tamales and margaritas with friends, and where Supper Clubs were held well into the night. It was the home where an idea for a second book took root, and where, over several years, the stack of books and articles somehow became a cohesive narrative. It was where we hosted Thanksgivings and cook-outs and sleepovers with nieces. Its closeness to Longwood Medical Area meant it served as a home base and staging ground whenever my loved ones (or me) were in the hospital (which was far too often, really. Really.)

Our bedroom is where I closed the door and cried quietly month after month (after month), and my home office is where I got the call that finally brought happy tears after so many years. The sunny front bedroom is where we painted the walls a gorgeous pale blue/aqua color because we wanted our little girl to have something other than pink, and on whose walls we stenciled the words “Dream. Hope. Believe,” scarcely believing this was in fact our reality.

The sunshine that streams through the living room window every afternoon was my constant companion during weeks of bedrest, and the hustle and bustle of cars, trucks, and neighbors connected me to the world outside those four walls. The front door was covered in balloons and Welcome Home signs when we brought our baby home from the hospital, and the hardwood floors and living room rug are where she crawled and walked for the first time.

We’ve had so much joy here, and so much tough stuff along with that joy. Things fell apart and stitched themselves back together—not seamless, but stronger nonetheless.

In a few weeks, we’re off to someplace much different. More land, more green, more (mental and physical) space to exhale. I did not realize how much I was still holding my breath, until I wasn’t anymore. We’re sad to leave the house was truly a home, but we’re even more excited for a better fit, a better life for all of us.

Dream. Hope. Believe.

Mother’s Day 2012

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I’ve been pretty quiet lately. I have some updates I’ll post later this week, but today seemed like a great day to look at (Weekly) Grace in Small Things.

–My husband had to work today, so it was just my daughter and me. We did our usual morning eat-play-dress routine, and as we headed out to go to church and to do some visiting, the sun broke through the clouds and “My Girl” came on the radio. What more could a Mama ask for on Mother’s Day, really?

–Every stage is so much fun, but I particularly love the constant narration of daily activity phase we’re in right now. “I did it!” she says, standing up with a huge grin on her face after she completes a task. “All done now. Bye-bye!” she says, shoving her plate of food away from her. “I’m all set,” she says as she’s buckled into her car seat.

–Watching my daughter and all of her grandparents interact and seeing how much they love each other is great to witness. One of my favorite little things? When my daughter walks over to me with the phone in her hand, hits speaker and re-dial, and calls my mother to ask her to sing “Ba Ba Black Sheep.” Asking her who loves her and hearing her say their names? Amazing.

–I want my daughter to feel like part of a pack and that she is loved by and connected to more than just her father and me. She loves her eight cousins and when she asks for them by name, it takes me down the road a few years to sleepovers and bike rides and those all-important bonds you have with the people who have known you your entire life. She woke up and asked to call some of her cousins today. While I wouldn’t oblige her since it was 6:30am, it did make me smile.

–Lately, she likes to take both my cheeks in her hands and kiss my face noisily and earnestly. It makes me laugh, which makes her squeal with laughter and eggs her on, which makes her lean in and kiss me again with even more exaggeration, which makes both of us laugh harder. We just went through several rounds of this before bedtime. It doesn’t do much to settle her down, admittedly, but it’s hilarious and I know she’ll move on to something else soon enough; I don’t need to rush that.

Nineteen months into this, I still can’t believe I get to be someone’s mother, that I get to be her mother. She lights up corners of our world we didn’t even know existed.

Happy Mother’s Day to all the women who love, nurture, guide, and advocate for children out there.

(And, back to regularly scheduled posts this week. Promise.)

Weekly Grace 4

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I had big plans for Spring Break—fun activities and play dates with my daughter, final round revisions, finishing the drafts of multiple blog posts, spring cleaning, etc. Instead, the week of Spring Break became known as the second week of the Late Winter Plague in these parts, with Baby Girl getting hit the hardest and the longest, so plans changed a little. While I catch my breath and catch up on life a bit, a quick nod to (Weekly) Grace in Small Things.

1. I don’t like the reason why my sick little girl was so sad and needed so many extra cuddles the past couple weeks, but I am very grateful that I could be there to give them to her when she needed me. This unorthodox schedule I keep has some challenges, but the benefits? Priceless. Truly.

2. A pediatrics group who not only responds to calls quickly and books in appointments on the spot but also has nurses and nurse practitioners who call on their own first thing in the morning and just before leaving at night just to check in on Baby Girl because they are thinking of her.

3. Longer days and mild weather, which brightens my mood and reminds me of all the playground and play time possibilities that await us this spring.

4. A Friday night off from any true work, which means time for putting laundry away, blogging, and perhaps even reading a book for pleasure (gasp!). It’s been way too many months since I had one of these nights.

5. I spend so much time commenting on writing and doing so much writing and revising on my own that I have been a bit of a slacker in terms of posting. But I am always reading, and figure it’s worth a shout-out to some of the blogs I frequent these days:

Pop Health

Mamapundit

Flux Capacitor

Aisha Iqbal

Sprogblogger

Necessary Cuts (Or, the problem with outcomes)

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When I was in graduate school, I wrote a novel. It wasn’t particularly good, and it won’t ever see the light of day now that workshop days are over, but there was one section in one chapter I adored. I revised it over and over until each word felt perfect, until the description was just right, the details distinct and evocative. It was one of my better pieces of writing, and for a long time I resisted what I knew deep down was true: I needed to cut it. It just wasn’t working for that section, and keeping it there because I liked the writing threatened the integrity of the project.

A few weeks ago, I was feverishly revising the last couple chapters of my book. They were rougher chapters—big, unwieldy, complex chapters that I threw all kinds of ideas into, knowing they needed refining and chopping. And late one night I realized I needed to cut a whole interview portion I really liked, about a subtopic that was really interesting. As strong as the ideas were, they weren’t essential to the chapter’s narrative. In fact, they prevented the arc I needed from forming.

I knew what I needed to do, but it was still hard. Hard to see that even if that section didn’t make the cut, that it was still valuable, that it was still a part of the process involved in writing and drafting a successful chapter.

I thought about that after I cut it, and looked around at the piles and piles of research stacked up all over my office—not to mention the thousands of electronic resources filed away in Gmail folders. How many of those have I read and forgotten? More than that, how many of those did I annotate and underline, scribbling notes on and tagging for use in iterations of chapters that don’t even exist anymore? I spent years compiling research, and what is staggering to me isn’t the amount that made it into the book, but what didn’t.

And yet it is all part of it, it all contributed to the process that ultimately resulted in a full draft of the book. Whether it led me to another source that proved useful, whether it sparked a question I asked during an interview, or if it just expanded my understanding and fluency on a particular topic, each piece had a role.

For better and worse, I am an outcome-based person. As a child, I cared more about my grades than my parents ever did. I see traces of myself in the students who bemoan a B+, who ask not how they can improve their writing but how they can get an A, who have a difficult time seeing that huge improvement from a rough draft to a final draft is an indication of success. I can empathize with that struggle.

The older I get, the less useful an outcome-based perspective seems. Perhaps it’s because so much of life resists clear-cut outcomes like grades or test scores. I know writing certainly does. Even though I am ranked and evaluated every academic year, I find it is the student feedback I get that is most meaningful to me. Maybe it’s also because the older you get and the more you risk, the more failure you open yourself up to, and sometimes all you are left with when things fall apart is the journey itself.

(Small proof I have evolved? I lose every.single.game of Words with Friends, yet I keep accepting rematches with my husband and (gasp!) still find it fun, anyway.)

Clearly, being a patient with incurable conditions has shifted my perceptions on outcomes. It’s not a question of the ultimate outcome—a cure—but more an issue of the everyday ebbs and flows of chronic illness. We can take the medications and follow the rules and still experience flares, but that doesn’t mean there isn’t inherent worth in keeping up with the minutia of daily maintenance and preventive strategies to minimize disease progression.

And becoming a parent? That has been the biggest influence of all. After our long journey to parenthood, and the intensity of our high-risk pregnancy, I have seen what is possible when we let go of outcomes altogether and the end result surpasses every expectation or dream we ever had. Watching this little girl grow into her own unique, independent person is a daily reminder that living in the moment, that appreciating the journey and the discovery, is a blessing.

I delight in what I learn she knows, and I love when she bursts out with new words, or recognizes new letters, or figures out how to do something new. But I find that the older she gets and the more she shares with us, I care less and less about pre-school placement, kindergarten readiness, or summer camp enrichment. I want the smile of pride she gets when she screws a bottle cap back on a seltzer, draws a picture, or drinks from a cup without a lid, the earnest smile that lights up her whole face, to follow her—no matter the spilled cups, the missteps, the experiments that don’t pan out as planned.

For an incredibly thoughtful, candid view on outcome-based parenting, I recommend Katie Allison Granju’s post on Babble. In a nod to writing, parenting, and (Weekly) Grace in Small Things, four other posts I am grateful for and suggest you read are
Aisha’s post on being present, Maggie May’s post on being a “good enough” mother, Glennon’s Momastery post on gifts and talents, and Brooke’s post on choosing love again.

Equilibrium

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So often lately I can’t seem to get out of my own way. I have these ideas for posts and write them in my head and know just how they should go, the points they should cover and the links and resources they should include.

And then I sit down to write them (or add to the few lines saved in a draft folder) and I don’t have the mental energy or clarity to do them the way I want. So I get stuck—if I can’t do the stand-alone, substantive pieces I’ve planned, I don’t do anything.

Really, that’s not what writing—or blogging—is about. After all, when I hit rough patches in my freelance work or in the book draft, I don’t stop altogether. I just move to a different section and come back to the problem area when I’ve worked it out.

Even more than that, I find that what I want to write about lately aren’t always the things I am comfortable writing about, or aren’t necessarily what a blog about chronic illness covers.

Aside from days like today, when weeks of feeling sick caught up with me and I am flat-out, heavily medicated, almost hospitalized sick, chronic illness in of itself isn’t something I spend too much time thinking about, and the fundamentals of it—symptoms, treatments, fluctuations—have never been all that interesting to me as a writer. Of course it’s part of my daily life, like when my lungs are so tight it is hard to carry my daughter upstairs, or chest PT happens at a time when she needs me. But family stuff, parenting stuff, work stuff, and, well, life stuff consume most of my attention and efforts.

It is the relationship between chronic illness and all those other facets of life that is a richer source of material, and I suppose it always has been.

Blogs grow, writers grow, interests grow. My life has changed a lot since I started this blog as a single graduate student. My roles are different now—mother, wife, full-time faculty member, published author—and as a result of these changes, I am different, too. Of course—we all are. So instead of fighting this constrained feeling, this writerly need to express the ideas that really resonate with where I am now, I need to work through it. Just write, I tell my students during free write exercises. No caveats, disclaimers, hesitations, or explanations.

That’s my plan, then, to try and find my equilibrium in this space, to be a more engaged writer, reader, and commenter. Some of the topics I’m interested in exploring more include parenting, parenting after infertility, clean cooking and eating (for children, too), writing, and, as a testament to this blog’s roots, how to be a better patient—because that role still matters, and continues to change as everything else does.

As readers, what are you interested in discussing more?

And finally, because it is an important piece of equilibrium for me, a quick installment of (Weekly) Grace in Small Things:

1. Lazy, happy dogs sprawled on the rug, sleeping in the warm beam of February sun streaming through the front window.

2. A giggling, chuckling toddler whose laugh reaches every corner of the house and always makes me smile.

3. Words with Friends, which makes time spent in exam rooms and waiting areas go much quicker, and is a small, silly way my husband and I keep in touch during the day.

4. The ability to say yes, without hesitation, when my worried doctor asks I have anyone who can help me out while I get over these infections.

5. Catching up with a good friend and wonderful writer this week whose continued success and dedication is awesome to watch.