inside, outside.

...and just like that, it's spring.

I knew I did this for a reason.

I went in our back room the other day--our catch-all guest room/storage/sewing/playing Room of Requirement--and I saw this sweater hanging there. It's the little cardigan I started for Imogen way back when.  Before we knew about her heart defect, before we knew she was a she.   Just as soon as I was able to trust, after no small wait, that this pregnancy would stick, I cast on.  The knitting got me through those early days after we learned of Imogen's diagnosis, through rounds of appointments to confirm the worst, and again was at my side as I started to share with friends and neighbors our family's uncertain future, our great hopefulness.



Right now, when moments of hope are sometimes harder to come by, it is so good to find little signs of the future lying around the house.   I'd say the cardigan (from this pattern) is about a 12 months size, maybe more for my tiny wisp of a girl.  I chose the buttons after we looked at the gender card we'd saved from the sonogram, a sweet scalloped pattern on wood circles that makes the sweater just a little more girly than not.  I hear that some older toddler and preschool girls start to form all-pink or -purple opinions in this princessy day and age... I have nothing against princesses, really, or pink, but then again I think I will take my chance to dress Imogen in some more offbeat colors while I still have a say. 

Do you hear me?  Going on and on about toddler fashion.  What I meant to say was--making things helps.  Both to take my mind "off it all" and to bring me back to it.  I look at this sweater and it reminds me that there is a time beyond this struggle.  Not a time without struggle, necessarily, but a time past this one.  The stitches I made to mark the steps toward Imogen's birth are now the fabric, tight-woven against fear, that reminds me to keep walking through this dark valley toward whatever tomorrow holds. 

Even (especially?) if tomorrow is all pink polka dots and glitter. 

views.

{the view from Imogen's hospital room--early morning.}

I walked in the door the other day and Owen hugged me and said, "You smell like the hospital, mama."

We are there for the long haul, we now know. And so I guess that's something we are all getting used to--hospital smell.  I could make this a post about what, exactly, "hospital smell" might mean (some combination of medicines, antiseptic cleaners, and BO from days without showering, I imagine), but I think I won't.  It's OK, really.  Not the worst part of all this.  Still, I must have made some kind of face when he said it, because--sweet, perceptive boy that he is--Owen immediately backpedalled and said, "I don't mean it's a bad thing, mama.  I like going to the hospital sometimes."  Yes, he does.

Imogen is so fragile and so needful right now.  We are working hard for the boys not to be eclipsed, but it's a tricky balance.  When I started this post, looking back through my photos of recent weeks, I found I did not have a single one of Owen *not* at the hospital.  I needed to fix that.  Even though we have had some sweet times there--him holding Imogen (when we could), us reading his book near her bed, him and Elliott changing her hats each time they visit--the hospital is not his world, not his burden to shoulder. 

We are reconsidering what balance means in this time.  I made a three-part list: Priorities; Things That Would Be Nice If Possible; Not Important Right Now.  An interesting exercise--pumping and showers made list one, "sleep" landed on list two.  I am looking for ways to get the most out of "Time with Boys as a Family (with One or Two Parents)," list one, and think about small ways to create "One-on-One Time with Boys," list two.  Crisis forces you to define boundaries, to consider what's truly needed, in a way that ordinary time does not.

As you might have guessed from my silence here for a few weeks, "Blogging For Fun and Catharsis" didn't find a natural spot on any of the lists, though we have been keeping up with Imogen's blog once a week or so.  I am glad to be finding my way back here today, to finish this post that has lingered for a while, because I started it with an intent of taking note of the world beyond hospital walls--a world to which I still belong, even as I sit watch by patient Imogen's side.









All these spaces--hospital, home, backyard, blog, even the bowling alley--they all have a place in this moment.  My heart, my schedule, must stretch to squeeze them in--and so even when I am tired and drawn thin, I try to keep it a loving squeeze, a warm embrace.

her.

I've been thinking about the detail that gets, sometimes, overlooked in the midst of all this medical ado: we have a new baby.  A girl.

 

I am not sure yet how I feel about having a daughter.  Intimidated.  Excited.  Overwhelmed.  In awe.

 

A few days after Imogen's surgery, a nurse--she was one of the traveling contract nurses on for the holidays--pointed out two purple marks on Imogen's chest.  Ones I hadn't noticed in the tangle of wires and tubes covering what seemed like every centimeter of her tiny chest.  "See those?" she asked.  "The surgeon made those before the operation, to make sure he got her nipples lined back up--for later.  I've been in other hospitals, and they don't all do that."  That statement took my breath, as in one sweeping moment I realized not just a worry I hadn't even known to have, but also the weight these surgeries--these awful, necessary surgeries--will carry for the rest of her life.  Girl and woman.  The perpetual "later" in which a scar will always mark the space between her breasts, well-aligned though they may be.  The Later when having children of her own will not be a simple choice. 

 

For now though, for now, I just want look at her and marvel.  This girl, my daughter.   How strong she is, and how lovely.

worst second honeymoon ever.

cafeteria window reflection.

One of the unexpected silver linings of this experience has been the amount of time my husband and I have been able (forced?) to spend one-on-one, not doing much except talking.  The boys have been with family or at school, and there have been many stages of Imogen's treatment where there's not much we can do for her except keep her company.  So we spend a lot of time together, stroking her forehead and feet, grabbing a snack in the cafeteria, or just sitting on the sofa near her bed--communicating.  We make dark jokes and try to wrap our minds around the details of Imogen's care.  We hold hands and wait out procedures--the Big Surgery and all the smaller interventions that keep Imogen stable.  We talk about how we're feeling.  I'm reminded that even though I am not the kind of person who would say I married my best friend (I dated that guy and things didn't work out), I can say with some surety that the man I married has become my soulmate.

It's a beautiful thing, really.  But we would rather have done it in Tahiti.

on spending the holidays in a hospital.

It was neither as depressing as I'd feared, nor as glittery-uplifting as some Hallmark special might lead you to believe.  Imogen had a visit from Santa (fake beard, for those who keep track), who left a teddy bear and an autographed photo. Other groups dropped by to distribute donated gifts--more stuffed animals, a book, a crocheted blanket.  Signs of compassion, strange and anonymous, but heartfelt and thankfully received.

My due date for this pregnancy was December 29, and soon after Imogen's diagnosis, we started asking questions: how would the holiday schedule affect her care? The doctors preferred an induction so that the necessary staff would be at the ready. We wanted to wait until the 28th or so, to have a quiet Christmas with the boys before the reality of baby and surgery and general upheaval set in. But concerns about how the baby was growing (she wasn't, much, so better out than in) pushed the schedule earlier.

And thus, to make many long stories short, we found ourselves with a 12/19 baby and a 12/24 heart surgery. There was much of the non-ideal: our social worker, cardiologist, and the hospital's top-billed surgeon were out on vacation.  And just as much of the surreal: the thirty foot lobby Christmas tree we all passed without noticing; the Christmas Eve vigil by the bedside of our swollen, open-chested daughter. 

But in the midst of it, I was struck by all that was unchanging.  Carols played on the radio as we drove back and forth from home to not-home.  My boys' faces as they opened gifts Christmas morning brought me joy even as I ached for their sister, who was no longer safe alongside my own heart. 

Unchanged, too, was the world of the hospital.  The holiday schedule absolutely did not affect the quality of care we had those days.  Imogen's surgeon performed a beautiful repair; he is junior but no less skilled or successful than his better-known associate.  Other care providers checked in on us from afar.  The nurses who watched with us that first night of recovery were gifted and compassionate.  Professionalism reigned--and that, I think, is the dually reassuring and sad reality of hospitals.  Volunteer Santa visits excepted, hospitals operate outside of seasons, calendars, and red-letter days.  They follow regimens, mark time by morning rounds and 4 hour care schedules.  There is not much room for making merry when lives hang in the balance.  On some level I wanted and even expected a Norman Rockwell moment, some doctor bringing in glazed ham and carving it for a ring of nurses and wide-eyed patients, or maybe a midday break for a raucous white elephant swap.  If that happened, I didn't see it; the closest I came was a spontaneous Boxing-Day rendition of a few lines of "Let it Snow," courtesy of one of the attendings.  When I mentioned it to our nurse later on, she shrugged and said, "It's the end of a 3 day shift.  We're all getting a little punchy." 

Our lives intersect like this--my family's crisis is their next day's work.  Our holidays and celebrations (which, I'm aware, we may not even share in common) are set aside at this crossroads of life and death.  And that is, I suppose, as it should be. 

*****

New Year's Eve, 11:58.  Zach rubbed Imogen's head and I helped hold her steady as a nurse cut stitches to remove an arterial line that had been leaking throughout the day.  A small procedure, the next item on the list of to-dos after rounds.  "I'll work fast so you can kiss her at midnight," she said.  We didn't see the ball drop but we heard a couple of cheers from down the hall.  I stared at my husband, this baby, the hospital room.  Breaking routine for just a moment, another nurse brought plastic cups of sparkling juice and we toasted the staff, the new year. 

dear heart.

here she is--sweet Imogen Louise. 

She was born 12/19, at 8:13 in the morning, and weighed 5 and three-quarters pounds.  She is beautiful and calm and wise.  Because of Imogen's heart defect, we've spent these first days of her life in a whirlwind of hospital, surgery, and recovery; we're still in the CICU and will remain at the hospital another week or two.  It's going to be a long process, but so far all is going as well as we could hope, I am so very happy to report. 

I know there are a few who read this page who may not have heard this news elsewhere, so I wanted to share here, and to invite you, if you would like, to read about Imogen's progress over at {dear heart.}, where we are keeping a little news-and-notes blog for friends and family. 

I have always been hot and cold in this space, and I don't expect that to change right now--and yet I've been feeling drawn here over the past week, wanting to record the thoughts that don't quite fit in the other blog.  I find myself writing there in a cheerful/ironic/upbeat mode, which is certainly (partly) true of how we want to keep our mood in this strange Now.  But then again that kind of writing strays into a kind of cuteness that bothers me; I err on the side of safe distance with an audience that includes far-flung relatives and in-laws and colleagues.  This space, of course, is no more private in fact (probably less so), and yet it feels like the better, safer place to explore the more complicated parts of this journey.  Things like the strangeness of being in a hospital over the holidays, or the challenge of parenting with children in two different locations, or the ways this experience, at every turn, both undermines and confirms my assumptions about ideas like bonding and natural parenting and even concepts as abstract and deeply seeded as control.

All that said, I am more certain now than ever that love is very real, as are compassion and connection, and I have felt them from so many sides these past weeks.  Whether you read here because you are a close confidant, or because we are casual internet acquaintances, or because you followed a link about grapefruit peels--thanks for investing a moment of your time in my life.  I know I am not the first person to go through a health crisis--we all will, most likely--but mine is the story I know best.