Weekly Grace 3

Weekly Grace 3

(Also known as the better late than never edition):

1. So I mention deadlines a lot but the deadline is approaching in just a few days, and as I am in the thick of it, my husband has been super awesome about picking up the slack with other things around the house and in our lives in general so that whenever I can squeeze a few hours in, I can really focus. It is greatly appreciated.

2. It always takes a few weeks to get into a groove in a new semester—the new schedule, the new faces, the new rapport. It’s a professional adjustment but a personal one, too, because it means a new routine for the household. Happy to be settling in and finding that footing these days….

3. When babies are very young, play dates are clearly more for the mothers. But the toddler stage is so much fun, and part of that is watching my daughter interact with other kids, learn how to share, and pick up new tricks and breakthroughs after seeing new faces. Since she doesn’t have siblings to model, I love that through classes, playgroups, and play dates, she gets regular interaction with kids older, younger, and right around her age.

4. Note the deadline mentioned in #1. So as usual I am totally behind where I want to be and have just a few days to finish a massive revision of my book. And I’m teaching more than a regular full-time course load. And I do most of my writing at night….which means coffee is a big thing in my world. I know this is a very small thing, but sometimes finding just the right coffee cup, one that makes you want to wrap your fingers around it and just makes everything taste better, is a small but significant joy. Thanks for the awesome glass mugs, N!

5. It’s been pouring rain all day. It’s January in Boston, so I’ll take it without complaint. We’ve had such a mild winter thus far and while I don’t mind snow, it’s been so nice to not have to deal with the crazy commutes, the snowed-in streets, the sky-high heating bills, etc.

Have a great weekend! I’ll be back with some longer posts soon—after Feb. 1, to be exact.

Weekly Grace 2

Fridays feel like a good day to take stock—the grind of the week is behind me, the promise of the weekend and all I want to fit into it is just ahead. So, small things that have an impact today:

1. Posts that make you think. I’ve seen Glennon Melton’s post Don’t Carpe Diem all over the place lately, and I love the idea of Kairos moments. I am a fan of Momastery, and actually have my own post in response to another one of hers percolating.

2. CaringBridge. It’s awful when families and children go through serious illness and trauma. But it’s wonderful that CaringBridge exists and offers them a free, easy, reliable way to keep family and friends informed so they can focus on what’s most important: the patient. It’s been around for awhile but right now I know several families using it so it’s a good reminder.

3. My iPhone camera. We have a fairly nice camera that I wish I used more, but I have to say that having a quality camera built into my phone makes it so easy to capture little moments throughout the day I’d miss otherwise. I’m constantly snapping funny pictures of Baby Girl on the run.

4. The Daily Show. We don’t get a lot of downtime at the same time these days, so having one half-hour where we’re both in the same room and laughing at the same stuff is nice. And Jon Stewart during the campaign season? On fire.

5. Independent bookstores.The one near us is really supporting of local authors (thanks, Newtonville Books!), has an awesome children’s room, and is starting a drop-in playgroup for toddlers under 2. How cool is that? We’re definitely checking it out next week.

Have a nice weekend!

Weekly Grace 1

Taking the lead from Rachel, I thought I’d try doing Grace in Small Things. Realistically I can probably only do it weekly, but it’s a start, and it’s a nice way to be appreciative of the smaller things that can get lost in the shuffle of everyday life.

1. Long weekends. Even though we just started a new semester, I am so looking forward to the upcoming three-day weekend. More time to hang with Baby Girl, to work on the book, and to prepare for next week’s classes.

2. Time Machine. I love this back-up feature on my Mac. It takes the thinking out of it for me, and means I always have a recent version of all my work saved.

3. Pho. Baby Girl and I are both a bit under the weather, and the thought of steaming, fragrant Vietnamese broth (cooled off a bit for her, of course!) is lovely.

4. Hand-me downs. Baby Girl has a lot of just-older cousins, and we’ve been lucky to get so many bags of beautiful clothes. It’s much colder than it has been, and I pulled out a great winter coat for her today that is brand new to her. Love! Plus, it’s always neat to see her in things I remember my nieces wearing—lots of good memories.

5. Libraries. Our town has a wonderful, spacious, vibrant library. We just started a weekly Story time there this month, and it’s been a lot of fun hanging out after and looking through all the books. It’s a good way to while away a winter morning, and to socialize with other babies the same age.

Have a great weekend!

On the Working, Parenting, and Chronic Illness (Take 2)

Spring semester starts tomorrow.

My syllabi and rosters are printed, my lesson plans are set, my work clothes are ready and my bag is packed. A meticulously detailed schedule for completing my book revisions during the semester is open on a Stickie note on desktop, and my January Google calendar is updated with deadlines, reminders, Mother Goose Story time, playgroups, and meetings.

I spent last night making a huge batch of homemade chicken vegetable soup for lunch for my girl, and several dinners’ worth of a roasted vegetables/turkey/GF pasta dish for her, with extra to freeze.

I always start the new semester with such good intentions of getting it all done, of sticking to the very detailed schedule. I know going in it probably won’t happen, but I’m learning to prioritize so that the most important tasks get the best of me.

A few months ago I wrote a post on working, parenting, and chronic illness and promised a follow-up on the more practical aspects of getting it all done. The fact that it took me about three months to do so should tell you I don’t have a ton of credibility in that department right now, but here’s what I’ve been doing when I haven’t been blogging.

For the most basic stuff, let’s start with the fact I make lists—daily, weekly, and monthly. I can’t go to sleep without my to do list for the following day set.

It is really important to me that my daughter eat healthy, whole foods—no junk food, no processed food, no baby food—so I spend a lot of time on the weekends (Saturday or Sunday night, usually) making a bunch of different meals (homemade stock/soups, pastas, risotto, roasted vegetables, stir fry, etc.) I put a lot of them in the freezer so that if we don’t all eat together before her bedtime, or we’re out doing an activity and then we have to squeeze chest PT in right around dinnertime, I always have something healthy and flavorful for her. She adores spicy and sour foods, and her favorite right now is hummus—she loves it so much we’re going to try and make our own next weekend so we can add extra spice to it.

I take advantage of any available work time. For example, her naptime is automatically my work time, seven days a week. (Not housework time, but writing, editing, or evaluating student papers, etc.) She goes to bed around 7:30pm, so typically six nights a week I plan to work at least a few hours between her bedtime and mine.

I am a lot more flexible with my notions of when things should get done. Laundry? I fold it at 11pm, when I’ve closed my laptop and unwind with The Daily Show. If I happen to be home for an extra hour in the morning and know I will be busy late in the day, I’ll throw a bunch of chicken pieces in the oven while I make my morning coffee. (Not appetizing, but I might as well use the time while I have it.)

Like pretty much all of us, I multitask—but I’ve gotten a little better about having more discretion about what things are appropriate for that. Cleaning the kitchen or cooking dinner while returning a phone call is one thing. Trying to conduct an interview while juggling projectile vomit or doing a bottle feed never worked out that well for me.

For better or worse, I have a sort of tunnel vision, particularly during the academic year. I don’t expect free time, and I don’t want to squander any time, either. I usually know I will need to work at least one weekend night, and I am okay with it because it is more stressful for me to have things outstanding than it is to just get it done. This time when she is young won’t last forever, and I don’t want to miss any of it. When the deadlines and the course work and the chest PT and the appointments and the laundry and the scheduled-ness begins to feel like there is never a single moment to just be, I know that the hard stuff is temporary, too.

And well worth it. (What is that famous quote? “I never said it would be easy; I only said it would be worth it?” I’m a fan.)

But there are some things I am going to try to do better this semester. I mentioned wanting to be more presentin more aspects of my life. I am hoping to bring home less work from campus (physically and mentally) by using office hours more productively. I’m going to try going into campus much earlier in the morning to work on the book then, so I meet my revisions deadline. I am going to try and keep my laptop upstairs in my office more, so that when I finish at night I am truly done and whatever I am doing—talking with my husband, watching something on DVR, etc—gets my full attention. Little things, but hopefully things that will make me feel like I have more space to just be.

I know a lot of this is obvious stuff, but somehow putting it down gives me more accountability. What about you? What things do you do to manage working, parenting, and chronic illness? What strategies have helped you be more present, or helped you save time?

On New Year's

Happy New Year!

I didn’t write a 2011-in-review post, but I do think my first post of 2012 will cover that anyway.

Just before New Year’s last year, I wrote that 2010 was the year of the baby, and all that entailed.

Looking back, I’d have to say that 2011 was the year of figuring out where to place everything else in my life, since my baby comes first.

I remember writing Bring It, 2011 , so vividly. I was sitting at our breakfast bar late at night, and I could see my reflection in the kitchen window as I hunched over my laptop. I was days away from starting my first full-time semester, though I’d gone back to work on a more flexible schedule a few weeks after she was born. I wrote how my biggest concern was figuring out how to balance it all—a young infant, a job, a book, health needs, family health needs, etc.

I wrote about working and chronic illness, and discussed another huge change in our lives—my husband’s company, The Well Fed Dog.

I savored every morningspent with my giggling, wriggling little baby, who quickly became a a signing, walking, talking, exploring, pointing, dancing, chair-climbing, fork-wielding toddler. No matter what else was going on, how many stresses and anxieties, obligations and expectations the year presented, as long as she was okay, nothing else mattered.

And as the year progressed, and after some successes and some misfires, I came to the conclusion that sometimes, balance isn’t possible and knowing how to prioritize is much more important than that ever-elusive notion of balance.

I’ve come a long way since that night a year ago when I was nervous about making all of this work. When I think about what I want for 2012—for my daughter, for myself, for my family, for the rest of the roles in my life—I want to be as present as possible.

Sure, I have more concrete goals: finish my book revisions by February 1; implement some new strategies in my courses; be more consistent in attending playdates and playgroups with my daughter; getting back to more regular group classes at the gym; keeping in better touch with friends, etc.

But the larger theme that ties all of those smaller threads together is being present. It is something I have done well with my daughter—each day, the time I spend with her is hers, whether we’re playing in her room, at music class, or at a playgroup. No laptop, no television, no scrolling through Facebook updates on my phone. The time with her is precious and hard-fought, and she deserves the best of me.

When I’m in the classroom my students are my focus, and when I read their work, I give it my full attention. I’ve started using the full screen option in the latest Word version, which blacks out my desktop and browser windows and allows me to look only at my words when I’m working on my book.

But now I want to focus on harnessing that in other areas of my life. I find myself doing work while getting my haircut, or glued to my laptop till midnight while my husband sits on the other couch watching “our” shows, answering my phone while sending e-mail, and other things less minor and more ridiculous. All of this is to say, it’s the next natural step in an effort towards the prioritization I wrote about in 2011—if I am going to do something, then I need to focus in on that one thing (or person, or interaction), and be fully present.

(And that means being more present in this blog space, too.)

On Holiday Wishes

Another edition of the ChronicBabe blog carnival will be out soon, and it’s about holiday wishes when you live with chronic illness. Jenni Prokpy asks, “What are you asking Santa for? What do you wish for the people who care for you? What wishes have already been fulfilled this holiday season?”

Where to start?

In so many ways, I have everything I need and want: I will wake up on Christmas morning with a happy, healthy toddler who greets every day with joy.

But that doesn’t make for much of a blog post, does it?

For people struggling with infertility, which is even more difficult and heartbreaking this time of year, I wish for them a path to building the family they dream of that is as smooth and expedient as possible.

For the babies and families spending the holidays in the NICU, I wish for them that they surpass all the odds they face and are soon able go home, and that they have compassionate caregivers and supportive friends and family until that happens.

For people living with chronic pain, I wish for them relief, physically and emotionally, and substantive distractions if relief is not possible.

For patients living with chronic illness, I wish for them a sense of acceptance that does not mean resignation, and a sense of balance that tends to their bodies and still nourishes their minds.

For the people who love, care for, and often live with people with chronic illness, I wish for them that they truly know how appreciative we are of their efforts, and that they give themselves permission to take a break.

For parents caring of sick children in particular, I wish for them the grit to advocate, the strength to defer when necessary, and (some) solace in knowing that what might hurt right now often helps their children long-term.

For the doctors and researchers working on rare diseases, mine and so many others, I wish for them continued ingenuity, persistence, and necessary funding.

And for my daughter, among so many hopes and wishes, I wish for her that she experiences as much joy from life as she brings into it.

On Why I Write

Sharon at Bed, Body & Beyond is hosting the next Patients For a Moment blog carnival and asks us to consider why we write.

I’ve posted about writing often here, and how the questions of
public lives versus private lives and storytelling get more complicated the longer we write.

But since it is such a fundamental part of my life, as well as a fundamental part of my experience as a patient, it’s a question worth exploring further.

First, there’s the obvious. I write because as an author, editor, and an academic who teaches writing, it is my job.

I started writing this blog because I knew there must be other people like me out there, young adults living with chronic illness, and I wanted to find them. I’d always been the sick kid, the sick teenager, the sick twenty-something, and while I knew I might never meet someone with my rare set of diseases in real life, I knew wasn’t alone. And I knew that whether we’d been sick our whole lives or were recently diagnosed, whether our illnesses were life-threatening or life-altering, our individual symptom differences paled in comparison to the universals we struggled with: acceptance, denial, balance, guilt, etc.

I keep writing this blog because as my own journey has evolved from being a single graduate student to becoming a married person, an author, and a mother, I continue to learn and be inspired by those I find on similar paths, facing similar challenges. Careers, infertility, chronic illness, parenthood, patient-hood—the perspectives I encounter on all of this from readers and from other blogs are often invaluable.

I wrote Life Disrupted for similar reasons: I wanted to capture the experience of living with chronic illness as young adults. I am writing my second book because I started asking lots of questions about the evolution of chronic illness in American society that I didn’t know the answers to, and I realized I had to keep digging. (Still digging, but getting close to the end!)

But more simply, I write because it is what I have always done, for as long as I have memories. I write to process, I write to clarify, I write to learn.

As a sick child, I wrote because it was something I could do no matter how bad I felt or how many nights I was in the hospital. I wrote because I loved to read, and books kept me both distracted from illness and connected to something beyond myself. I wrote because I couldn’t always run or play, and I wrote because the voice I discovered in writing gave me an identity beyond that of the sick one. It gave me self-esteem and confidence when my body betrayed me over and over. I don’t know that I’d have gone to Georgetown, or interned at Washingtonpost.com, or done a lot of the things being a teenage and college-aged writer allowed me to do had writing not already been such an integral part of my self-concept.

I have no doubt I’d still be a writer even I hadn’t spent my whole life as a patient. It’s the way I make sense of my world, it is my instinct at every turn. But I wouldn’t have needed writing the way I did so often through the years, and I don’t know that I would appreciate its ability to build community and connect people the way I do. Writing is an extricable part of my personal life, but I’m fortunate that having a career based on writing isn’t just good for my spirit. Writing allows me to have a successful professional life despite my health issues, and though I didn’t consciously set out on this path for those reasons all those years ago, I am grateful to be here.