Thinking Through my IVF/RE Experiences: Part 2

This is the second part of my coming to terms with my IVF/infertility treatment experiences, picking up when I switched doctors.  Read Part One here.

I’ve written in a Q&A format, mostly because that seemed easier than trying to form this as one narrative piece.

What was the difference between the first and second RE?

I switched because my second RE was the doctor who “officially” diagnosed my miscarriage.  He was kind and compassionate through that awful moment and promised that he would *personally* talk to my OB/GYN to help arrange the D&C.  I was super surprised the next day when my OB/GYN told me that 2nd RE had, in fact, actually called and talked to OB/GYN.  It was probably one of the first times I’d been promised something in that office and it actually happened.

I mean, that was the biggest difference.  2nd RE actually followed through on his word consistently.

I also appreciated the fact that 2nd RE wasn’t nearly as uncomfortable with the really strong emotions that come with IVF as 1st RE (2nd RE was a lot younger than 1st RE, so I wonder if that played a role).  After my ectopic/miscarriage (following my FET), I walked in for the follow up appointment loaded for bear, so to speak.  I cried for pretty much an hour plus, and I really appreciate that he didn’t try to cut me off or tell me that it was okay, we could try again.  He told me that it made total sense that I was upset, that we did need to take a break at this point.  Also, he was in favor of limiting the number of IVFs – 3 fresh was his personal max in my situation, and as he put it, that was only if we wanted to go that far at all.  It was helpful to hear that he wasn’t advocating for more and more and more and that it was okay to say enough.  In that follow-up, we decided we’d do one more round of fresh IVF, but if that failed, we were probably done.  He supported that decision.

2nd RE also was willing to try things that helped me get through.  I asked, prior to my FET, if my embryos could be grown out to blastocyst stage (they were frozen at 3-day) prior to transfer – and if they couldn’t get that far, then at least I’d be spared the 2 week wait.  Even though this wasn’t clinic protocol, he was fine with that.  He also would call me personally if things were changing/not going well/etc.

Did things go perfectly after that?

No, I mean, there were still communication issues at times between staff in the clinic, but it was better.

What helped?

I mean, honestly, it’s amazing how far listening and basic compassion goes.  Don’t sell false hope.  Follow through on your promises.  Keep in communication with patients.  Respect limits and boundaries.  None of this is reinventing the wheel – it’s stuff clinicians should be doing.  Unfortunately, it’s time consuming, and I think this is where problems come up.  My clinic offered a complimentary session with an infertility counselor with IVF, but it’s not really enough.  It’s not something that can be entirely outsourced – the doctors and staff at clinics have to be involved.

One thing 2nd RE did that I found helpful was that he gave me his personal work email – the one that went directly to him.  Funny enough, I never wound up using it.  But it took a HUGE load off me mentally to know that if I had one of those questions that wasn’t serious enough to call the on-call physician at 2am but was bothering me, I could send an email.  It also helped to know I could contact him using my own words and not have to rely on someone else passing the message along.

Also, when 2nd RE had bad or mixed news, he would sit down with us – I mean, physically, sit down.  I know this sounds sort of strange, but it helped because he wasn’t sort of “standing over” us and could make eye contact that way.

What are some thoughts on clinics and the experience?

I think one thing I would say to infertility clinics/staff is that even a single failed cycle, whether that’s IVF, IUI, whatever, can represent an enormous loss to the patient.  It’s time lost, emotional endurance lost, and as crass as it feels to mention money, it can be a big financial loss.  I mean, a single cycle of IUI or TI with injected fertility meds for me cost around $800-$2500, plus the time and emotion that goes into it.  Even clom.id or fem.ara, with timed intercourse, while cheaper, still ran about $150-$300 including the ultrasounds.  That’s not impossible, but it’s not an inconsiderable expense either.  By the time my husband and I got through infertility treatments, we had spent >$40,000.  For perspective, we spent about as much on a down payment for a 4-bedroom house + some new furniture + some new flooring.  We don’t live in a super expensive area, admittedly, but it’s still a boggling comparison.  Having a cycle fail doesn’t just mean all the emotional losses (which are considerable as well) but also a sickening amount of money and financial stability in many cases.

I was really grateful when the fertility clinic I used took down all the baby collages that patients could see.  I’m fine with clinics having stuff like that in strictly staff-only areas, but I remember really clearly passing the “baby board” with my miscarried fetus still hanging out in my uterus and feeling like someone had kicked me in the face.  I did not find it “hopeful” or helpful to have those out.  It made me feel like a defective failure.

It would also be nice to see “success” and “failure” re-defined when it comes to infertility.  I’m not a “success” because I had kids – I have absolutely no idea how I managed to pull that one out.  In other words, it’s not because I did something “right” or “wrong”, it’s just how things worked out.  Likewise, I wasn’t a failure when my cycles weren’t working and I miscarried twice in a row.  I would love to see clinics be much more mindful of patients as whole human beings who have intrinsic worth and dignity regardless of whether or not they have children.  I view success – when it comes to infertility – to be comprised of having a life one considers full and meaningful no matter what that looks like.  Basically, coming out on the other side is a huge victory.

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Thinking Through My IVF/RE Experiences: Part 1

Over the years, I’ve sat down more than once to try to write about my experience with my first RE and IVF in general.  It’s proved trickier than I thought.  Some of it, I’m sure, is that women are socialized not to express certain (negative) emotions.  Some of it is that it seems like something I should be over.  A big part of it is survivor’s guilt.  I mean, I have kids at this point, so it seems sort of ridiculous to complain.

And yet, parts of this story still bother me because they should not have happened.  In real time, I was so deeply invested in the process, I couldn’t really dig into considering them, even in my own head.  I was all about acknowledging that something had happened, but also sort of glossing over at the same time.  At this point, it’s not so much about my personal stuff as entering a conversation about how to improve care for infertility patients in fertility clinics.

I’ve written in a Q&A format, mostly because that seemed easier than trying to form this as one narrative piece.

What went wrong with the first RE?

I’ve mentioned before on the blog that at the first consult with him, I expressed that I understood with PCOS that wasn’t responding incredibly well to drugs like Clo.mid and Fem.ara, it could take some time to get to the point where I was pregnant and that I had a wedding in June (this was in March) that we’d need to work around.  He sort of smiled and went “Oh, I think I can have you drinking water at that wedding instead of wine.”

I hate to say this, but while the rational part of my brain was going nope, nope, nope, the sad, worried, fearful part of me really wanted to hear that.  Because here was a guy who was confident and felt good about the whole situation.  He brushed away my concerns about being able to come in for ultrasounds during cycles because of my work schedule (“We deal with that all the time”).

Things escalated a little when I got a cyst after my first cycle on injected fertility medications, which I hadn’t realized could happen.  So I had a cancelled cycle and had to rest on birth control for a month.  The next cycle resulted in a huge overstimulation for TI/IUI and was cancelled as well.  I was getting concerned because I was going in for ultrasounds quite a bit – which hugely negatively impacted my work schedule, contrary to my doctor’s reassurances at the initial visit.  I then did a cycle with Fem.ara + injected meds, which was cancelled by a different doctor in the practice due to under-response (my doctor was on vacation) and told to consult with my doctor when he got back.  It was late June by this time.

My doctor was hard to schedule with because he was “so busy” according to the clinic.  We agreed to a phone consult.  My doctor told me he wouldn’t have cancelled that cycle, would rebate my clinic fees (which we appreciated) and would personally supervise my next cycle.  “Good,” I told him, “because my period is starting.”  We booked the next cycle and I started shortly thereafter.  A week later, I was told by the nurse at the clinic that one of the other doctors would review my lab/ultrasound results because my doctor was on vacation.  I was furious.

The July cycle went wonderfully, a really good stim, but I didn’t get pregnant.  I asked to talk to my doctor again, was able to get another phone consult, and expressed that I was a bit upset he hadn’t personally monitored my cycle as he had promised.  He basically told me that he got to go on vacation and implied that my expectation that he would personally monitor my cycle was expecting far too much.  He was so convincing, I remember doubting my memory and asking my husband if he too had heard the doctor promise to monitor the cycle personally.  My husband was certain he’d heard the doctor say that too.

We decided to move to IVF because we were losing a *lot* of money on drugs, fees, and lost work for cycles that were being cancelled.  It was obvious that my ovaries were super touchy and didn’t necessarily respond predictably.  I was going in a lot for monitoring.  We figured that if we did IVF, we’d be able to do one cycle with all the monitoring and have a higher chance of pregnancy.  I again phone consulted with my doctor in late August, explained to him that I had started a new job, and that we were thinking IVF.  I had planned to possibly do the IVF in February or March of the next year and settle into my new job.  “We could get you in this fall,” my doctor told me.  Because I really, really wanted to be pregnant, I agreed.  I explained what I did at work and asked if there was anything I should know about IVF that would affect my job differently than any other TI/IUI cycle with injected meds.  He told me to plan to take one day off for egg retrieval and two days for transfer.

A couple weeks later, I called the clinic to finalize some details and the nurse mentioned in passing that I would have a 25 lb lifting restriction and restrictions on bending.  My job involves a lot of lifting and bending.  I just about hit the roof.  But my doctor was out of the country on a 3-week mission trip and I had to make decisions right then or delay the cycle.  We had already scraped together the money and I was desperate.  I made a poor choice and went ahead.

The cycle proceeded, I was very anxious, and 15 eggs were retrieved.  The day after my egg retrieval I went back to my job, where I would be on my feet for 8 busy hours.  I had to leave partway through the shift because I was in so much pain.  Two 3-day embryos were transferred, 2 were frozen, and I went home to wait.  I had my beta a day early because my husband and I were both off work that day.  Though the clinic nurses called me to tell me I had a positive beta and was pregnant, my doctor also called me personally to congratulate me.  I appreciated that enormously.

Of course, I got googling (ugh) and realized that even for the day it had been done, my beta seemed…low.  But it doubled appropriately, then exploded.  Even so, I could not shake a nagging feeling that I didn’t “feel” pregnant at all.  Nothing.  No tender breasts, no nausea, nothing.  When I went for my first ultrasound with a different practice doctor, the doctor found that I had 2 gestational sacs, both with something inside but only one with a heartbeat.  The next week I went for another ultrasound with my doctor to check on the one with no heartbeat to see what was going on.  Still no heartbeat in the one, but a beautiful, perfect heartbeat in the other.  He was effusive, excited, and told me to send him photos.

The bad feeling never went away.  Finally one weekend, I found myself almost hysterical with anxiety.  I knew something was wrong.  I called the clinic Monday and they scheduled me for a scan to reassure me (with one of the other doctors in the practice, my doctor wasn’t at my location that day).  I remember feeling the cold wash over when I saw the baby come into view.  I knew there was no flickering of a heartbeat, and the ultrasound tech’s immediate “I need to go get the doctor” told me everything I needed to know.

My doctor never called.  Never said a word.  Never told me how sorry he was that I’d miscarried.

Do you blame your first RE for the miscarriage?

Not at all.  I had known in my gut something wasn’t quite right from the start and unfortunately, miscarriages aren’t particularly uncommon.

In hindsight, are there some things you would have done differently?

I would have changed doctors after the situation where he told me he would personally monitor my cycle and then didn’t – particularly after he tried to play it up like he never would have said such a thing.  I work in healthcare.  It is totally good for healthcare workers to take breaks, vacations, etc.  I absolutely support that need.  I also totally understand that emergencies happen, but based on what the nurses said at the time, they specifically said vacation and he later confirmed that.  There is absolutely nothing wrong with taking vacation.  But I had/have a huge problem with the dishonesty.  The truth is, I suspect that he just completely forgot what he said to me and really didn’t care.

I really regret not putting the brakes on that first IVF cycle.  It made things much more stressful at work (even though I had an extremely supportive boss and coworkers, thankfully) and once I realized that my doctor (again) hadn’t been 100% forthcoming with me, I wish I had insisted on waiting until I saw him to talk about the situation to do something as major and expensive as IVF.

I wish I had listened to the part of my brain that threw up the red flag in our first consult instead of playing it off as a bit of a misspeak and proceeded with more caution.

One other thing that, in hindsight, would have been good would have been getting a second opinion from a different RE before going for IVF (it’s worth noting that my first RE did not push IVF for us – we were spending so much on TI/IUI cycles that by the time we’d gone through a few, we were getting to the point where we couldn’t keep doing those for the lower chance of pregnancy, so we brought it up).  I was really intimidated by the idea of finding someone (the clinic I went to was the only one that had a local satellite office).  But even if I’d needed to go to the city where the main office was located or somewhere else entirely, I wish I had had someone review my chart/tests/treatments to that point just to sort of double-check things.

What are some things you would have wanted to see from your first RE?

The other day, Mel at Stirrup Queens posted a link to a project about the worst things people said to women who miscarried or had stillbirths.  I know, unfortunately, exactly what my chalkboard would say:

“Not one %$#%& thing.  Absolute silence.”

It still makes me really angry that my doctor could take the time out of his “busy” schedule to call me and congratulate me on being pregnant but when I miscarried, he couldn’t be bothered to take three minutes to say “I heard.  I’m so sorry for your loss.”  This is basic.  It’s not an onerous request, and I would argue that it’s an essential part of reproductive healthcare.

I also would have appreciated it if he had been much more careful when he was advising me what to expect from IVF.  He did not tell me about the lifting/bending restrictions, which were incredibly relevant to my job that I had told him about (I think he figured the nurses would go over IVF instructions and didn’t think it was his job).  I am also really frustrated that he didn’t encourage me to take a day off after the egg retrieval, especially since he knew I didn’t/don’t work a desk job where I might be able to take time to sit down.  I was in a lot of pain as a result.

Confidence can be a good thing, but I felt like his statement about water at the wedding instead of wine wasn’t a helpful thing to say.  It gave me some unrealistic expectations for the process/timeline and honestly, I felt horrible – like I had done something wrong – when I wasn’t pregnant by the time of that wedding.

He also came across as pretty dismissive when I would ask about how the various treatments would affect work or my life.  These were reasonable questions on my part and should have been treated/answered seriously.

 

Planning to have Part 2 coming soon…

Returning Home

Big time spoilers for The Lord of the Rings – especially the ending – ahead.  

It’s no secret that I am a huge fan of The Lord of the Rings.  There aren’t too many things in my life that have stayed constant since age 14, but these books continue to inspire, motivate, and comfort me.  As I’ve grown, aged, and lived, the meanings have changed, the understandings deepened, but every time I pick them up, I find something new.  When I first read the books, I was thrilled by the exciting adventure, the battles, and, oh yeah, Aragorn.  These days, it’s a different part that I keep turning to read.

One of the things I love about The Lord of the Rings now is the ending.  The movie version leaves out part of the original ending, and I understand that choice at some level.  The original ending is messy, hard, and complicated in a way that’s difficult to translate to the screen.

For those who aren’t familiar with the book ending, it looks initially like a very traditional storybook ending wrap-up.  Then the movie and book part ways: there is evil waiting in the Shire for the returning hobbits.  They have to fight yet another battle to get the Shire back – their home is ugly and changed by that evil.  The book and the movie return to sync when Frodo departs Middle Earth.

When I initially read The Return of the King, the scouring of the Shire irritated me a bit.  It seemed…unnecessary.  The major task was fulfilled, the ring destroyed, the epic showdown at the gates of Mordor fought, and the hobbits returned home triumphantly.  Then Tolkien throws in this seemingly discordant sadness and destruction.  It’s no wonder Peter Jackson left it out of the movie.  It feels unfair that after everything the hobbits have done and the horror they’ve been through they don’t come home to a hero’s welcome, that there’s still more to do.  This isn’t a Harry Potter ending.

Now, though, I get it.  Tolkien has captured the reality of life after being touched by struggle and tragedy, in whatever form that comes to particular people.  You don’t walk through Mordor and remain untouched.  Even once the main event is over and evil seemingly vanquished or at least survived, it’s coming home to find more work to do and reminder after reminder sitting in your front yard.

We walked through Mordor the days my daughter nearly died.  We walked through Mordor when my brother so inexplicably left us.  The days when nothing made sense.

I hoped when we finally came back, naively, it would still be mostly the same.  I knew better.  But I hoped.

Instead, it’s been the weariness of battling back what those journeys took from us.

It’s no longer the epic battles of life and death.  It’s the bitterness at the bottom of the glass, the sh*ttier stuff, but battles that are no less for their smallness.  It’s fighting those unwelcome triggers and reclaiming home.

It’s knowing when to lay down the swords and begin the peaceful work of planting and bringing green life back to damaged land.  It’s showing mercy.  In some ways, this is almost harder.  It requires vulnerability, patience, honesty, kindness, and diligence.  Qualities that some days are tough to muster.

Tolkien doesn’t give Frodo a beautiful happy ending in his beloved Shire.  The wounds simply go too deep.  I take a lot of heart, though, from Sam’s ending.  Sam, who also bore the Ring, touched evil, who also walked through Mordor.  Sam, who “planted saplings in all the places where specially beautiful or beloved trees had been destroyed and he put a grain of the precious dust in the soil at the root of each.  He went up and down the Shire in this labour…”  Sam, who receives these words at the last, painful farewell: “Do not be too sad, Sam.  You cannot be always torn in two.  You will have to be one and whole, for many years.  You have so much to enjoy and to be, and to do.”

That is an ending – or perhaps another beginning – worth all of the work.

Reorganizing

I knew when we started the home organization project that it was going to involve a lot of cleaning out.  I started with my closet and clothing.  I was ready to clean out my clothing, tired of having it spill out across the floor, tired of holding on to aspirational pieces, tired of not being able to find the items I actually wear.  The low hanging fruit as it were, and when I got done I felt an immense sense of relief and accomplishment.

Then our organizer came.

Holy h*ll.  I knew, somewhere in the back of my mind, that we had been overdue for a clean-out about three or so years before we moved – right about the start of the whole infertility nightmare.  I didn’t want to buy any new furniture because who knew what we’d need if we managed to have a baby or not?  I didn’t want to throw anything away because I couldn’t deal with sorting through boxes or letting go when I was already struggling with treatments, loss, and so much of life seemed up in the air.

Well, the organizer waded right in.  It’s precisely what we needed her to do, because there was no way I could have managed it on my own.  She gave me permission (essentially) to let go of things that I had some sort of warped, misplaced attachment to but really no longer wanted.  She helped keep me on task.  It was definitely an exercise in asking myself over and over again “why?”  Why did I want this or that item?  Why did I feel guilty letting something go?  Why had I acquired it or kept it in the first place?  It was far more difficult than I’d thought it would be and took longer than I wanted.

Our house is now clean and full of things I actually enjoy, things I actually want there.  The clutter, the items I kept storing out of guilt, out of sadness, out of a misplaced sense of ‘value’ are gone.  I can walk around the house without tripping over things.  I can get out the decorating items that only seemed to add to the mess before.  We bought a few new furniture items that fit our lives and are exactly what I eventually want to add to when we buy a house.  I find that the strict “one in, one out” system we’ve adopted helps me buy less on impulse.

I recently read The Next Happy by Tracey Cleantis about letting go of dreams and the notion that “if you try hard enough, you can do anything”.  It’s an apropos book as I’ve let go of various items in the physical world, found freedom in that letting go, and have realized that it’s time to perhaps start the process on some of the things in my head.  I’m a packrat by nature both with physical objects and emotionally, so I knew this was a bit of a step.

When Arthur and I got married, we always talked about having three children.  I planned a huge chunk of my life around that idea, from schooling to the jobs I’ve taken.  Even the fact that we started trying when I was 29, a bit before I was truly ready was done in service of that dream.  I figured I’d get pregnant within six to eight months, have the baby, wait a year, get pregnant again when the first child was about 18 months, and then if we wanted that third child, I could fit in that last pregnancy all by the time I turned 35 or 36. We’d buy a house somewhere in there and then I’d get my master’s degree.

Infertility, high risk pregnancy, and premature birth shattered what our dream family life looked like in my head.  The house?  The down payment was spent on IVF.  The master’s degree?  Probably much later than I’d hoped if at all, and the money for it also spent on IVF.  Three children?  Only if something truly unprecedented (and largely out of my control) happens.  I can’t do anything more beyond a few natural cycles (unlikely to work) and FET of whatever we have left once the two embryos thaw to make that dream come true.  We are out of emotional strength and money to do so.

When my brother died, I wondered why that situation – seemingly so different and separate from infertility – often tended to trigger strong memories of the difficult losses of the infertility and high risk pregnancy and vice versa.  I figured initially that it was because trauma is trauma, perhaps thinking of one made me think of the other.  Recently, I realized that they’re both linked in one very critical area.

I always thought I had an amazing family growing up.  I really do both love and like my parents.  I don’t call them out of a sense of obligation or family, I genuinely enjoy them.  This isn’t to say there weren’t issues or we were the Waltons or anything like that, but I always felt that my parents, my brother and I made a pretty good bunch, especially in the last few years.

That’s a really sh*tty part about suicide as opposed to a different tragic death – it colors and permeates everything for me.  It taints so many of those memories, leaving me wondering: were we really that happy?  Were we okay?  Were the seeds of this tragedy sown somewhere in all of that?  Where? Basically, it completely dynamites everything I believed about my family of origin and leaves me reexamining all the pieces through a completely different lens.

I’ve lost both the dream of the family I planned to create with my husband and the family I grew up in.  No wonder the two things twine together so often.

I’m slowly starting to work on letting go of what I firmly believed my life would look like, particularly in regards to family.  The first step has been reaffirming the decision not to pursue further fresh IVF.  I’d said it over and over again, believed it intellectually, but there’s a sense in which I’m finally truly closing that door emotionally.  It means working to ignore the nagging voice that keeps telling me “just one more round!  You could still make it happen!”  Or the other voice that tells me that I am somehow stopping short although objectively I can see that we went through h*ll and had a couple of extraordinary, unprecedented – and out of our control – breaks in our favor to get where we are today at all.

One of the other steps has been slowly letting go of the residual denial that probably kept me functional for a bit after my brother’s death.  I knew, of course, that he was dead.  At the same time, some part of my mind kept imagining him going out for a run along the city streets, going to work, generally living his life.  We didn’t talk all the time on the phone and lived several hours apart, so reality didn’t intrude constantly.  I went about my day, I imagined him going about his.

Over the last month or so, I’ve done that less and less.  The ache of the loss seeps in more and more as I begin to fully acknowledge that he is not in the city, not living, and that he is really and truly gone from this world.  No matter how hard I try or what I do, I cannot make that fact change.

It’s hard.  Really f*cking hard.

At the same time, the anxiety is a little bit less.  Instead of feeling hugely overloaded emotionally all the time, I’m finding that I’m closer to just being maxed out more often and hope that at some point it will reach a reasonable equilibrium.  There is so much good in my life, but needing uncovered and brought out.  It’s what keeps me moving and working, the idea that this massive and painful letting go will eventually be worth it, allowing me to fully embrace the whole of my life as it actually exists.

Out of the Shadows

The other day I couldn’t resist watching the trailer for Miss Peregrine’s Home for Peculiar Children even though the book scared the daylights out of me. I was curious if the characters looked the way I’d pictured them, and I must say, I certainly never pictured Eva Green as Miss Peregrine (I’ve always seen Maggie Smith). At the end of the trailer, there’s a short image of what terrified me in the book.

While it’s not a creature I’d want to meet in a dark alley or, well, anywhere, seeing it on the screen made me go “huh…that was what scared me so much?” It’s interesting that I’d taken the outlines in the book and filled them in with my own terrors, insecurities, and ugliness to make a truly horrifying creature that scared me for good reason.

Finally pulling the monsters lurking in the dark spaces of my own mind out and really getting a good look at them this week has had a similar effect. They’re still formidable creatures and I still don’t want to deal with them, but they’re not as big or terrible as the shadows they cast.

~*~

Mali left a wonderful, sage comment on my last post pointing out that although the media (and social media) portrays family and big events as uncomplicated and happy, the reality is usually murkier. As much as I sometimes know that in the back of my head intellectually, it’s easy in the onslaught of joyful photos and exciting news to forget that this isn’t the whole of reality. I spent some time looking through what I’d posted over the past year or so, and it was interesting to note that after E was born, my Facebook posts take on a decidedly upbeat tone that wasn’t terribly congruent with what I was actually experiencing at the time. It’s also worth noting that I’ve never posted about my brother’s death on Facebook.

This didn’t happen in a vacuum, of course. After E was born, it seemed that any time I’d express concern or get upset (mostly IRL), I often got a variation on this: “But you’re thankful/should be thankful she’s alive! And doing so well!” It’s true that for a 28 weeker, especially with the early PPROM, E has done exceptionally well. She never needed a ventilator, much to everyone’s immense surprise, and at this stage of things, is right on track for her adjusted age of around 9 months. I was and am thankful for E, knowing how close we came to losing her. But it did not take away the reality that it was hard and still is sometimes.

There were days I could remind myself that people say sh*t like this for various reasons, ranging from the fact that outright sadness and suffering makes a lot of people very uncomfortable, to the idea that people often want to ‘fix’ the situation, to simply being ignorant or having their own issues. There were/are other days, however, where it was/is very effective in making me feel as though I needed to put a happy spin on a tough situation or, in many cases, simply ‘suck it up’. After all, someone had it worse than me. Honestly, I think this is a big part of where the pain olympics comes from: people feel they need to justify their pain and the complex feelings surrounding events culture often insists should be purely happy. That’s the pressure I’ve been putting on myself, and the pain olympics is all over my last post.

So I’m taking a deep breath and saying it fully: I am really excited and happy to be an aunt. I am really glad that my BIL and SIL don’t need to go through fertility treatment again and that the babies are doing relatively well. I’m sad for them that their lives/pregnancy/birth didn’t go as planned in scary ways. It truly doesn’t matter when it comes to NICU or fertility treatments – no matter the duration of either, they represent some big losses. It’s also not a shame to say that I’m sad and angry for myself at all the losses and the very real fear and sadness that surrounded my pregnancy with E as well as the difficulty of NICU and the subsequent months of taking her to 2-3 appointments a week on average and bringing her home on monitors and oxygen. It’s not wrong that siblings trigger the many unresolved feelings surrounding my own brother’s death and infertility. It’s also natural that all of this brings up difficult memories of messiness that are the events of my life over the past three or four years.

That, I suppose, is reality: some good, some bad, some uncertain.

Just as I knew that we would somehow go on and have lives of beauty and worth if we did not have a child, I know we will likewise have goodness if E is an only child. It won’t happen overnight, and may take years to fully work through readjusting those dreams and hopes but I firmly believe we will get there. I also sometimes have to remind myself that plenty of people are only children – and there is absolutely nothing wrong with that. E being an only child would not be the same as me being one of two and suddenly left alone. It’s easier to project my own sadness and insecurities as I’ve barely scratched the surface of grieving and coming to terms with what happened to my brother or to sublimate the memories I need to come to terms with by playing pain olympics.

I’m impatient in many ways. I wanted the battles with my demons done, you know, yesterday. Then again, I have to remind myself that there’s a reason I have the sign I do hanging over my desk:

DSC01218

It’s something I’m working to remember.

And Somehow, We’re Back To December

As a kid, I loved the holidays, December, and Christmas. It always started with going to my grandparents for Thanksgiving. As we got a little older, then it was Black Friday shopping. We would map out the sales on Thanksgiving evening and plan our route, including a donut break in the middle. My great-aunt was game for braving the crowds with us, and it was often a perfect chance to shop for Christmas presents. There was Hanging of the Greens (decorating) at church, nativity pageants, choir, and volunteer work. Our family would get a live tree and we’d spend an afternoon decorating it with my mother’s extensive ornament collection. We’d set out my mother’s Mexican nativity set, the Baby Jesus hidden until Christmas morning when he’d appear in the manger. There were cookies and cranberry sweet rolls and finally, the candlelight Christmas Eve service at church. Arthur proposed to me on December 21, 2002.

Then on Christmas Eve 2003, my grandmother died. I’d never lost a family member before. For the first time, we didn’t go to church. Christmas morning, we all stared at each other, half-heartedly opening gifts. It was never quite the same again, always that little bittersweet tinge of memory intruding.

Once Arthur and I got married in 2005, Christmas and December felt particularly stressful for a few years. We had very little money at the time and presents became a source of difficulty. I remember clearly trying to find gifts that were heartfelt and yet didn’t break the budget. Finally, by around 2008, we were established, life felt more manageable, and I hoped we’d get back to a less complicated celebration.

It wasn’t to happen. Arthur lost his job at Thanksgiving of 2010 and his grandfather died shortly thereafter. In 2012, infertility became the unwelcome specter at the feast. December was when my doctor told me that my case was too complicated for her and I’d need to see an RE. Exactly one year later in 2013, I had a D&C for my first miscarriage. In 2014, I had been told by the perinatologist that I could continue to attempt to carry my then second-trimester pregnancy but that I was in a critical period where my risk of infection and losing the pregnancy was high. I was bleeding every day. I couldn’t do Christmas decorating, cooking, or shopping. Arthur was without a job again and interviewing. We held our breath, wondering which day would give us more bad news.

I’ll confess, I was looking forward to this year and a chance to exorcise a few of those demons. I got excited about E’s first holiday season, starting with plans to dress her up in a cute little “first Thanksgiving” outfit. We had plans to go visit my parents for the week of Thanksgiving, and Saturday Nov. 21, we’d do the big meal with my whole family. I hoped we’d get our house unpacked enough to get at least a small tree put together for E and take some cute photos she wouldn’t remember but that would be fun for us.

Then my brother died. We did have a meal with the whole family on Nov. 21, but it was for the memorial service. I glued a tight half-smile on my face, thanked people for their condolences and presence, and somehow got through it. Thanksgiving was spent having an enormous fight with Arthur about E’s eating issues (a whole post in and of themselves) and driving home so that I could go to work Friday night.

Truth be told, what I want is something that will fill the gaping holes in my life and heart. Something that will take the sting out of all the infertility and loss memories associated with this time of the year. Failing that, I’d just like enough energy to keep advocating for E. It is amazing how much work and patience it takes to coordinate all of her specialists and appointments and keep everyone on the same page. I’d like enough drive to put the effort into navigating the new structure of my family. E’s birth changed things. Life as the only surviving child of my parents is different and I’m not sure how to step into that role or what it even looks like.

I’m bemused, amazed, and at times resentful of the fact that life somehow goes on through all of the losses and sadness and anger. I suppose, however, that in the incredible resilience and endurance of the human spirit there’s some sort of hope for the future. I am grateful for E, my parents, and Arthur.  Even if despite these moments of gratitude, most of what’s keeping me going these days is making rude gestures at fate and the universe at large.

And maybe the fact that I’m still standing tall enough to feel those fleeting moments of gratitude and make those gestures, in and of itself, is a sort of triumph.

Shattered

Over the last couple of months, we slowly started returning to some sort of fragile normalcy. We finally made progress on some of E’s issues with eating, switching formulas and bottle nipples. While there’s still some moments of randomness or frustration, our lives began to fall into a bit more of a routine.

We made plans. It was going to be a wonderful week. Sunday we were going up to see friends and take E to a pumpkin patch. Monday Arthur took a half day off to go to an appointment and then celebrate my birthday. I was looking forward to responding to the comments on my last two blog posts. Thursday, an appointment for E and going to see my brother-in-law and sister-in-law for dinner.

I mildly strained my back Friday night. Nothing too major, and while I wouldn’t be able to carry anything, I was still allowed to walk around Sunday morning as long as Arthur pushed the baby in stroller and took care of the bags.

I work my Saturday overnight shift and Sunday morning dawns beautiful, blue, crisp, a perfect fall day.

About ten minutes before we pull in the parking lot at the pumpkin patch, my father calls me. This is odd to say the least. My parents know my schedule. I know they would not be calling me at a time when I would typically be asleep on a normal Sunday unless something is wrong. My father tells me that he’s gotten a call that there is something wrong with my younger brother. My parents are heading into the city. I tell him to call as soon as he knows anything.

We meet our friends because what else is there to do? Buy donuts. Talk and laugh. Walk around. Head back into the pumpkin patch area to pick out the perfect pumpkin for Halloween.

My phone rings.

And then there are words: “Passed away.” “Shot himself.” “Dead.”

Before I know it, I am screaming at the top of my lungs. No. NO. NO. NO!

Horrified parents and children are staring at me, the beautiful blue sky and sunshine incongruous now.

Our friends are lovely. They give me hugs and say the right thing, the only thing: that they are so sorry. Arthur somehow gets the three of us to the car because all I can think is we need to get to the city. There’s nothing we can do. But we need to be there.

When we arrive, we are led to the next door neighbor’s apartment. This is the man who heard my brother’s significant other’s screams when she discovered the scene upon arriving at the home she and my brother shared and helped her call 911 and notify authorities. This neighbor, in a display of extraordinary, generous hospitality, has vacated his apartment to allow all of us to congregate there and be close. We are not allowed into my brother’s apartment because first the police and the coroner must do their work and then we must wait for the special cleaners to come.

This is what you learn when your loved one commits suicide: that there are people whose job it is to come clean up the physical manifestations of the violence and horror.

There are so many awful details. The services of a funeral home must be engaged. There will be hours of sorting through papers and belongings and legalities. The gun, in a truly inhumane bit of police procedure, must be picked up that afternoon from the precinct.

I will most likely never see my only sibling again. The initial report is that the body is not suitable for viewing.

I am so sad. I am also angrier than I have ever felt before.

E smiles and coos at everyone. I know she must know that something is wrong, but I am grateful that she is happy and will not remember this day. My mother cuddles her close. This is the only thing I can offer.

We drive home.

Now the hardest part begins, the stretching minutes, hours, days of brokenness.