The Space

If you have ever spent time in a hospital, you will detect a rhythm.  Under all the bustling of the doctors, the nurses, the respiratory therapists, the entire infrastructure of acronyms that keep the thing running, there is a quality of silence, stopped time as people wait.  Even in the direst moments when everything is moving at full speed, there are pauses – waiting for lab results, specialists, OR rooms to become available, 30 seconds here, a breath there.

I didn’t really understand that rhythm until I became a patient myself, an object of all the bustling as opposed to performing it.  Sitting in the space, waiting, is hard, especially when you know that the result, the consult, the surgery, could change everything.  I often filled the spaces with books and blog posts and articles.  It’s strange how book or words can become a sort of friend in those places, buoying my spirits or just holding the space with me and affirming the mixed emotions in those moments.

Waiting was what I was doing in spring of 2014 after an unexpected result from my FET.  Pregnant but with far too many worrisome signs for confidence, Arthur and I had to decide whether or not to go ahead with a long-planned trip to attend a writer’s festival at our alma mater.  Several authors I admired were on the schedule to speak, we’d shelled out the money for tickets, hotel, and time off.  My RE gave his blessing to go ahead since we’d only be a few hours away and I knew where to go if the symptoms became more concerning.  So we went, hoping for a distraction from the seemingly interminable wait.

It was definitely the right decision, as hard as it was to make at the time.  I listened to lectures by James McBride, Ann Lamott, and so many others.  I went to the English department reception where I smiled, listened, reconnected with people, and shared stories.  All while simultaneously gritting my teeth as I’d feel the blood seeping out and the panic rising, then be blessedly inspired and challenged by new words, new books to read.

That’s how I wound up in a session with an author named Rachel Held Evans, who wrote a blog (and books) on faith, Christianity, and wrestling with (and eventually leaving) evangelicalism – a process both Arthur and I were going through, though in different stages -as well as a heartfelt and surprisingly funny second book on the meaning of “biblical” womanhood.  Arthur and I had read the book and had some good discussions.  After the session, there was a meet and greet and I told her how much I had enjoyed the book and admired her openness writing about faith, life, and menstruation.  I came closer than I want to admit to bursting into tears and confessing that I was really excited to be here but also probably going through a miscarriage and that I was really grateful for some of her writing, that the presence of her and these other authors had made this waiting just a little better.  Thankfully, my sense of manners and decorum kicked in to save me from serious awkwardness and oversharing, but I also suspect she would have been very kind.  The moment ended, we moved on.

One of her books kept me company a year or so later in the NICU as I waited beside my daughter’s incubator.  Arthur and I read it aloud as we put our tiny baby on our chests, sleep deprived, and needing healing words.  Her words kept me company in the empty space when my brother died.  Her words again encouraged us when we walked away recently from the denomination that married us and baptized both our children and were there for us during infertility and the NICU after a decision made at the denominational level to further exclude our LGBTQIA+ brothers, sisters, and non-binary in faith that Arthur and I found cruel and wrong.

Rachel Held Evans died on Saturday, May 4 after a sudden illness that led to complications at the age of 37.  It is for the people who actually knew her in her real life to mourn her in that intimate, deep way that comes with relationship and they are the ones that are truly bereft in this moment.  My heart aches for them as they move forward without her daily presence and grieve her great loss.

As simply a reader of her books and not someone who knew her personally, I’m just grateful for her words and quite sad that the lovely and luminous person behind them is gone from this world.  Those words held my hands and abided with me in some awful spaces.  They are and were a source of presence and balm.

While the many articles and obituaries have quoted Rachel’s final blog post on Ash Wednesday that is unexpectedly apt and poignant in the wake of her passing, the words from her book Inspired: Slaying Giants, Walking on Water, and Loving the Bible Again are ones I remember now and as a fellow reader they resonate deeply: “I know I can’t read my way out of this dilemma, but that won’t keep me from trying.”

#BecauseofRHE

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Coffee-Mug Philosophy

In my offline life, I’m in the process of some new stuff at my job that changes my workflow and sort of upends my established routines there.  It’s fine, positive even, and it’s something expected/planned but it’s amazing how much energy goes into change and re-configuring my habits.

The other day, these words fell out of my mouth: “It will be fine!  All this upheaval and hard stuff is going to make us stronger, right?”

Ironic, because I really hate that particular cliché.

~*~

I heard it quite a bit throughout the infertility journey: what doesn’t kill you makes you stronger.  I heard it when Arthur went through job losses.  I heard it in NICU.  I’m grateful no one said it too me after my brother died because suicide pretty much flies in the face of that kind of gritty positivity.  But that statement has hovered in the background of most of the big, tough moments of my life.

I think – as with most “sound bite” or “meme-ready” sorts of statements – the reality is much more complex.  I also think sometimes it’s employed as a quick conversation ender or a way to escape big feelings.

There are hard experiences that I feel have made me stronger, mostly those that are designed to break down before building up.  Nursing school sucked.  It was terribly long hours often (getting up at 4:15 am to drive two hours to a clinical site, being there for 8-10 hours, then going home), the studying was a full-time job, and I have never forgotten my first semester lab where everyone cried at least once except for the two students who had been in the military.  It was also truly worth it and the toughness was incredibly important when I got into real world and took my first assignment on a general medical-surgical/telemetry floor.

Some of the job losses for Arthur fall into this category as well.  It was sort of a surprise to me that after Arthur’s first job loss, the sky didn’t fall and we figured things out.  We were really privileged in many ways, but the experience helped me better hone savings plans and recognize that while it was 100% not optimal, it was survivable.

But as far as some of the infertility experiences go?  Being told there was no heartbeat?  Sitting in a hospital bed being told that I was ruptured and going to lose our very wanted baby?  Waiting in NICU for test results to come back to see if E had NEC?  Losing my brother?  No.

That sh*t broke me to the very core.

I mean, there’s a way in which all these experiences have given me a lot of perspective.  Going through all that reminds me on the days where all the little ridiculous stuff is piling up and it’s frustrating that I’ve survived so much worse.  That I will make it through that day.  I’m much better now at differentiating my small life stuff from what constitutes my bigger life stuff and reacting accordingly.  It’s also made me more able to take some forms of tension or frustration in stride, because, well, I can manage.  In that sense, the adage is correct.  Perspective is valuable in life, absolutely.

What the saying doesn’t reflect, however, is that there are some really ugly broken, jagged edges that are still in the process of being smoothed.  It doesn’t reflect the big ways in which these events changed the course, not always for the better.

I started out in elder care as a nursing assistant when I was 19 years old.  I loved it.  I always envisioned myself as a hospice nurse eventually.  I did some clinical time with hospice and felt confirmed in that calling.  Even when I started in the “real world”, I took assignments that would give me experience.

Then infertility hit and I was just so sad.  Conflicted.  Too many emotions running rampant to step back and be in a high-emotion field like hospice.  I put the dream on hold, mentally, and moved forward with a different path hoping to eventually move back that direction.  Then all the losses happened, NICU happened, and my brother died.

Now, I work in an area where I come in contact with the “hard stuff”, but in far more limited doses than a field like hospice.  It’s a good balance, I’m good at it, and I’m happy.

But I still mourn, a bit, that I had to admit that infertility, miscarriage, prematurity, and suicide loss limited me.  Maybe someday, but it will be years and a lot of therapy if hospice is ever back in my path.  I won’t do it unless I know my stuff is fully handled and integrated.

Empathy is another sort of mixed bag in life after everything.  On the one hand, I know these experiences have made me more empathetic in many ways.  I definitely can identify with people’s struggles and have a better ability to be present in those moments.

But it’s also made it far easier – especially when I’m tired, stressed, overwhelmed, or overstimulated – to fall into a pain Olympics sort of mentality or get really jealous.  I don’t think this is true for everyone by any means, but it’s definitely an issue for me.  I’m ashamed to admit that even while I was very happy for my BIL and SIL when they got pregnant, I was positively green with envy that they had gotten pregnant with twins on their first fertility treatment.  It threw me back mentally into every f*cking failed cycle and miscarrying twins on that first hopeful IVF.  I was happy for them but absolutely overwhelmed also at how sad and angry I was for my own losses.  This resolved with time and things are fine in that set of relationships at this point, but it’s not a great quality and one I’m on close guard against.

All the grief has also exposed the fault lines in some relationships and the Awful Things People Say.  After my brother died, it’s been a revelation how much stigma suicide really carries and also how uncomfortable some people are with grief and strong emotions.  Those secondary losses were really unexpected and the reshuffling of boundaries has been painful.

The fall-out also shows up with everything related to pregnancy or conception.  I’m afraid to embrace the idea of this final embryo transfer – even when I know, no matter how things fall out, I will be okay – because the whole thing activates all the panic responses and pushes me back to thinking on all the other memories.  When I was pregnant with M, my OB wound up allowing me to have appointments weekly through the first trimester, until both the risk of pregnancy loss had gone down and I could pick up the heartbeat on my home fetal doppler.  I was having panic attacks I couldn’t get under control, despite knowing I would manage no matter what the outcome.  It was awful and I’m really grateful that my OB was so kind.

And perhaps that’s one other little silver lining to the tough stuff: I’ve had the opportunity to see people step up to the plate as well.  People who have gone above and beyond and helped so much.  It gives me faith in humanity, in the idea that there is goodness out there.  It helps me better identify where I can be that goodness for others.

All this to say: it’s a mixed bag.  What doesn’t kill me has made me stronger and weaker…and panic attacks…and exposed my limitations along with my less than awesome qualities…and brought out some of my good ones.  But I guess that doesn’t fit as nicely on a coffee mug.

Meditations on Moving

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One of the few authors I’ll spring for straight up (instead of waiting at the library or until I find it on sale) is Louise Penny.  I’ve written a few (okay, okay, probably more than a few) times about how much I love Penny’s mystery novels here.  She’s one of the authors writing today that I really want to meet, though I’ll admit that I’m a little terrified that if I did, in fact, meet her, I’d just fan-girl all over the place and embarrass myself.

In any case, Penny’s latest, Kingdom of the Blind came out last week and I’ve spent the last few days reading.  Yet again, I’m struck by Penny’s ability to get to the heart of life, living, and human emotions.  One of my favorite parts of the books are the author’s note at the end, where Penny writes so evocatively about her own life and struggles.  For a number of years, Penny’s husband Michael suffered from dementia and died in 2016.  Penny has also been open about being a recovering alcoholic and the incredible loneliness, anger, and sadness she felt for so long as well as many wonderful things she values in her life now.

“A funny thing happened on my way to not writing this book,” Penny notes, “I started writing.”

“How could I go on when half of me was missing?  I could barely get out of bed.” She continues.  “But then, a few months later, I found myself sitting at the long pine dining table where I always wrote.  Laptop open.”

I relate to that in such a big way.  While I’ve never lost a spouse, I have lost loved ones, as well as other, less tangible bits and pieces along the way.

It’s hard, losing, whatever that loss comprises.  Especially at this time of the year, when everything seems suffused with traditions and the place at the table seems all the more empty than usual.  When it’s impossible not to remember and the commercials and pictures and expectations are designed to evoke emotions that often I’d rather leave in the background or unexamined.

Sometimes living, moving, feels a bit like a betrayal.  With an ache that has the sharpness of a gunshot echoing from 2015 and holes that rend the threads to keep weaving it all together, it feels impossible to tie the knots and work to keep creating.  To set the empty place and also hold the feast.

That’s been a struggle for me lately, even though my grief isn’t new.  I’ve reached that sort of half-mourning stage, where the sadness doesn’t seep into every moment or corner, but comes out at both expected and unexpected times with a startling strength.

I’m grateful to Penny for not denying the darkness, but also for the joy she takes in how moving forward encompasses her loss: “Far from leaving Michael behind, he became even more infused in the books.  All the things we had together came together in Three Pines.  Love, companionship, friendship.  His integrity.  His courage.  Laughter.”

In so many ways, that’s what I’m seeking.  Not to leave behind, but to hold the love and live.

This post is a part of Microblog Mondays.  If you want to read more, please head over to Stirrup Queens!  Thanks to Mel for originating and hosting.  

Bangs Head On Desk

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(TW for pregnancy discussion – not mine)

A couple of my guilty pleasures include celebrity gossip and the British Royal Family (I actually took my pen name here from one of Henry VIII’s wives).  Needless to say, I’ve spent some time reading about Eugenie’s wedding (loved the tiara) over the last few days, and of course, the in-the-news-constantly right now Meghan Markle.

Until this morning, when I saw the headline.

Yup.  She’s pregnant.

OF COURSE.

It’s weird how trauma stuff comes out.  Most of the time, I’m fairly at peace with the infertility, IVF, miscarriage and such.  I just don’t react as strongly as when I was in the trenches.

Pregnancy is my kryptonite, though.  Pregnancy announcements still feel like being socked in the gut.  I generally don’t look at maternity photos.  Ultrasound scan photos actually can get me closer than I’d like to panic attacks (for a very long time, I got a lot of bad news in ultrasound rooms).  Seeing pregnant bellies still fills me with a sort of wistful, slightly jealous longing.  I don’t go to baby showers.  I don’t do pregnancy/labor/delivery stories because, let’s face it, no one wants to hear about infertility/miscarriage/severe pregnancy complications/premature birth.

It’s strange because I can hold newborns or look at baby/kid pictures without any issues the vast majority of the time.  I’m okay once the child is born.  But pregnancy stuff, for some reason, gets to me in a major way.

It’s weird coincidental timing, though, since today is Pregnancy and Infant Loss Awareness Day (in the US).

So I read about pregnancy.

And light the candles in memory of the ones I lost.

This post is part of Microblog Mondays.  If you want to read more, head over to Stirrup Queens!  Thanks to Mel for originating and hosting.

 

Once Bitten…

Content note: breastfeeding

After my experience trying (and failing) to breastfeed E, I was determined that if I was able to have another baby, I was going to breastfeed.  I tried to set myself up for success when I found out I was expecting M, reading books and purchasing a new, high quality double electric pump (I wore out the motor on the one I used with E).  When M was born, I worked on getting milk supply established, making sure she had a good latch and was feeding well.  I was fortunate my body responded this time, and we were happy.

For the last seven and a half months, everything went well.  M loved breastfeeding.  I had a huge supply.  I froze lots, and ultimately wound up donating to the local milk bank when I overflowed the freezer.  I followed all the new guidelines that stipulated exclusive breastfeeding until 6 months.  I loved breastfeeding and figured we were set.

(You can tell where this is going.)

Then, about two months ago, the first little crack in that rosy picture appeared when, out of nowhere, in the middle of a happy nursing session, my adorable baby smiled up at me…and promptly bit down.  Hard.

M didn’t have any teeth at the time, so while I was startled and it hurt, I just let out a little “ow!” and stared down at her.  She, seemingly oblivious, resumed nursing.  I figured it was a one-off and didn’t think much of it.

Until it happened again.  And again.  And again.  Thanks to no teeth, it didn’t bother me all that much, and eventually M quit, right around the time she got her first tooth.

Then, in late October, M started biting again.  The situation escalated over about a week, culminating with Halloween, where she bit me seven times, including once that drew blood.  I did some research, concluded that I needed to keep a closer eye on her when nursing and watched her latch like a hawk.  She bit me one more time on November 1, then we reached a détente.  M nursed.  I watched.  It was no longer quite the carefree, cuddly experience from before.

The peace held until Tuesday.  M bit me once in the morning.  I unlatched her, set her down, and told her “no” soberly.  The next nursing session went fine.  I went to latch her on for the afternoon session, and M bit.  This time, she drew blood.  I yelped, took her off, waited twenty minutes until I could see her giving hunger cues, then I gingerly started to put her onto the other breast.

Within seconds, I was bleeding again.

Because I am nothing if not persistent, I waited until I saw hunger cues again, about fifteen minutes later, and tried again on the first breast.  Before I knew it, she clamped down, leaving behind a pair of bloody toothmarks.

I called the lactation consultant, who advised that I pump and let myself heal.

I went to nurse M again on Thursday morning, and found myself terrified.  I could not bring myself to put my breast in that mouth, which turned out to be a correct instinct as she bit her bottle over and over.  I went and saw the lactation consultant.  We figured out a few things, but the upshot is, as of today, M screams whenever she sees my breast.  She’s on a nursing strike.

It’s like a lock has sprung open on all those crappy feelings from infertility and prematurity and my inability to breastfeed with E.  A representative sampling: This is why you’re infertile.  You’re a bad mother.  You caused this to happen, you reacted wrong.  You aren’t trying hard enough, anyone can breastfeed.  You gave up too soon with E, you know that you could have gotten her latched eventually.  If you can’t breastfeed M until she’s one, you’ve failed and she’s going to have tons of health problems.

I know these are ridiculous, and also?  Totally untrue.  I also know something else from all the past struggles: I can set myself up for success and do the work, but sometimes, the end result is out of my hands.  The problem is, it’s hard to keep reminding myself of those facts.

I have given M eight months of breastfeeding.  I found ways to bond with E that had nothing to do with nursing.  We are all going to be okay, regardless of the outcome, regardless of if I manage to get her back on the breast, or pump and feed for the next four months, or wind up formula feeding.  In the end, fed is best.

But right now?  The whole thing bites.   

Sometimes, You Can’t Run After Them

Content note: parenting, miscarriage

My older daughter loves books.  Upstairs, downstairs, board books and picture books abound.  I periodically go through and put them back in some semblance of order, only to have them joyfully pulled off the shelf a few minutes later for reading.  There are classics and newer titles and everything in between.

There is one board book, however, that doesn’t belong to the girls, that never is pulled from the shelf, that I have never read to either daughter.

I bought it nearly four years ago, one burst of optimism in a lot of nagging fear and doubt.  I never could get into buying baby clothes – that felt wholly overwhelming to me for something so tentative – but I did purchase a tiny set of board books.  The other two I threw away after it happened, I was so sad and so angry, but one I slipped into the box that held a positive pregnancy test, ultrasound photos, the embryo photo, some cards, and a few sprigs from the bouquets I received.

I don’t feel pregnant, I told my doctor at the time.  I’d never been pregnant before, but I knew, knew somewhere deep inside that something wasn’t quite right.  I found out that I’d miscarried the first one on a December morning when the ultrasound screen showed the pooling blackness of a gestational sac with something inside but no flickering sign of life.  The second one though.  The second one had a perfect heartbeat.

I hoped that the feeling of this is not right had been the first one passing, but I still didn’t feel good.  Or rather, I felt too good.  Not a wisp of nausea (but my mother had never really suffered from morning sickness and these things are often hereditary).  No breast tenderness (not everyone gets that).  No reaction to strong scents (well, it doesn’t usually set in right away).  Not overly tired (no more than usual).

But everyone told me that if you saw a heartbeat, your chance of miscarriage was drastically reduced.  I bought the books.  The Runaway Bunny seemed particularly apt.  If you run away, I will run after you, the mother bunny promises her little bunny.  I had run after this child, first with all the poking and prodding, then medications, and finally the IVF.  Right then, it seemed perhaps I had finally caught this baby.

Even then, I couldn’t quite shake the feeling.

I wasn’t surprised the day the ultrasound revealed the absolute stillness in my womb.  Devastated, but not surprised.  The babies were gone, but I could not run after them.  I could not turn into a fisherman or a mountain climber or anything else like in the story to bring either of them home where they belonged with me.

I let go in the end.  I had to.  Unlike the fictional mother bunny, I didn’t get that choice.

I tucked the book into the box a few days later.  A small gift, a book I wanted so badly to be true.

I could not bring them home.  The only thing I could do was send my love.

October is Pregnancy and Infant Loss Awareness Month. 

How Do You Say ‘Thank You’ to Someone You Never Met?

When I’d go for my daily run as I was going through infertility, I had one song on my i-pod that I generally slotted toward the end of my playlist.

Well, I won’t back down
No, I won’t back down
You can stand me up at the gates of hell
But I won’t back down

No, I’ll stand my ground
Won’t be turned around
And I’ll keep this world from draggin’ me down
Gonna stand my ground

I always knew I couldn’t control the outcomes of my cycles or whether or not we ultimately had a baby.  I couldn’t control the suckitude of cancelled cycles, BFNs, or the losses.  Most days, it felt like nothing was in my control.

Well I know what’s right
I got just one life
In a world that keeps on pushin’ me around
I’ll stand my ground

I never heard the song as a “don’t give up on treatment” but rather, not to give up on life when some days, it was hard to get up in the mornings.  The song always rallied me to remember that someday, somewhere, we would make it through.  There was a good life after infertility, whether or not we ultimately had children.

And I won’t back down
(I won’t back down)
Hey, baby, there ain’t no easy way out
(I won’t back down)
Hey, I will stand my ground
And I won’t back down

I listened to that song through so many bad moments – diagnoses, miscarriages, cycles, job losses, hospitalization, NICU, my brother’s death, post-NICU – and it always gave me just that little bit of strength I so often needed to say “I am struggling.  But I will find a way through.  Maybe not the way I envisioned or hoped.  Maybe a different way.  But a way”.  Still does, honestly.

As I was browsing news sites the other day, I heard that one of the song’s writers and singer – Tom Petty – had died.  I’m sad and sorry he’s gone.  But what do you say about someone you never met or actually knew?

I guess, just this:

Thank you for the song, Tom Petty.  Thank you.

Lyrics to “I Won’t Back Down” by Tom Petty/Jeff Lynne.