Saturday, March 15, 2014

In Memoriam

This is the post I've been wanting to do for a while.  The words have been in me forever, the feelings are with me daily.  I'm doing it a couple of weeks in advance of the date I will publish it, not sure I will actually go through with it, knowing I would never be composed enough to sit down and write on the day it is meant be read.  It has nothing to do with running.

Fifteen years ago today we lost our first baby.  To this day, I can hear the disbelief in Sean's voice when I called him.  Stunned, hurt, and sad, we carried on with life.  And then it happened again about seven months later.  All the same emotions, with confusion mixed in.  One miscarriage could happen to anyone, but two.... We weren't clinically eligible for reproductive endocrinology testing at that point, but my ob-gyn recommended that we not get pregnant again unless we were sure we could handle the possibility of another loss.  We knew that we couldn't.  So I immersed myself in my job and grad school, and Sean was consumed with the demands of residency.  Every once in a while we would talk about the worry we shared: would we ever have children?

In fall 2001 we decided we were ready to try again, and we got pregnant quickly.  We breathed a sigh of relief after making it through the first trimester, but that security was short-lived.  An early placental abruption at 16 weeks landed me flat on my back in bed for a month.  How quickly elation disappears when your doctor tells you, "I'm sorry, there's nothing we can do except hope for the best."  I wasn't even allowed to move unless Sean was home.  But Baby George hung in there, and the tear sealed.  We learned it was a boy the same day we learned that that the pregnancy had a good chance of remaining viable.  Again, the relief didn't last, and soon contractions began way too early.  More bedrest, more bleeding, lots of monitoring, but  a healthy Rhys was born on October 1, 2002...ten days late, which was kind of funny after all that worry that he would be so early.

Certain the first two losses were nothing more than sorrowful instances of unfortunate luck, we began to think about a sibling for Rhys.  Sadly, nature had other plans.  Another loss in August, and yet another a few months later in January.  Rhys was 15 months old at that point, and I had just lost my grandmother, the strong woman who helped my single mom raise three kids, a few weeks before.  Officially branded a "recurrent miscarrier," I began to wonder if it was Rhys who was the exception, not the little ones we never met.  Our world was shaken, and it got to the point one day when, as I was holding my toddler close, I asked Sean what constituted a nervous breakdown because I was pretty sure I was having one.  I ended up with a prescription for Zoloft and we both were handed lab orders for an infertility testing.  I still remember sitting in the chair, staring at the imposing stack of vials.  I learned years later that the answer wouldn't be found in any of them.  An appointment with a REI specialist led to daily progesterone and baby aspirin.  As our blood tests revealed nothing, it was simply a shot in the dark.  Soon enough, we were pregnant with Wes, and Gwen and Max followed closely behind.  Three kids in 27 months.  Once we had Wes, the amazing REI doc we trusted and loved bluntly said to us, "You don't have any time to waste if you plan on having more kids."  So, to anyone who knows our family of Irish triplets and has wondered why we had them so close together, there's the answer; we didn't really have a choice.

But the pregnancies were difficult and complicated: more abruptions, more contractions, retained placentas, amniotic issues, growth insufficiency, blood loss, transfusions, weeks and weeks spent in the hospital, months of bedrest at home, c-sections.  And, out of the blue, I developed a heart arrythmia, SVT, compounded by a near-constant sinus tachycardia.  Sean was in fellowship at the time, and the embarrassment of one of his attendings, my cardiologist, calling him during his workday to say, "Lori is sitting here in my office with a heart rate of 140" was mortifying.  In my mind, growing a baby was something women were built to do, and I couldn't understand why I was failing miserably when I was so healthy.  I was lonely and scared during the hospital stays, and when I was home it pained me to see other people tending to my kids in a way that I wasn't able to.  Of course I was grateful for the help of family and friends, but it was my job to take care of my kids, and I couldn't help but to feel responsible for the incredible amount of added stress for Sean during his hardest training years when he was working the most.  Our children were worth everything, of course, but to date, those years still rank as the most difficult of our lives.

So why am I sharing this lengthy saga on a blog about RA?  Because as it turns out, it's all extremely relevant.  At my initial appointment with my rheumatologist, after reviewing my pregnancy loss history, she sighed and remarked, "Well, now you know why.  That's too many for a mom to lose."  Several months later at my yearly ob-gyn check-up, the first since my diagnosis, my doctor told me that about 50% of all RA pregnancies end in miscarriage, and she said that placental issues, like the ones I kept having with all the kids, were considered easily explained complications for a woman with RA.  When I noted that I couldn't understand how the RA wasn't caught in all those blood tests I had done so many years ago, she told me that only lupus tests are included as part of the standard infertility work-up, not rheumatoid factor, even though the consequences are practically identical.  So, in a case like mine, it made a lot of sense; when I had my initial rheum bloodwork done, the only lupus panel test that came back positive was my dsDNA, which is commonly found with RA.

Infertility and pregnancy loss are incredibly difficult topics to discuss, and ones that are often kept very private because it's usually easier that way.  We were no different; only a very close circle knew of our struggles.  And a common thread of frustration in the autoimmune rheumatic community is that the included diseases can be "invisible;" meaning, to look at many of us, no one would be able to tell that anything was wrong.  When these two silent worlds collide, the resulting outcome is a black hole of emotions and unspoken words.

As a woman and mother who has straddled the border of these two conditions, I sometimes find myself impatient with the advocacy groups of both.  Why wouldn't all autoimmune diseases be explored as part of REI testing?  And to the rheum community, please remember this: there are heartaches that sting in a different way than inflamed joints.  There is another kind of fatigue that has nothing to do with disease activity and everything to do with grief that sometimes catches you unaware and keeps you up at night.  There are scars that aren't results of surgeries.  Just as patients may cling to memories and remnants of wellness, there are those of us who treasure a single ultrasound and a positive stick pregnancy test. While there is emptiness that comes with not feeling physically whole, there is the type of void that surfaces when your arms feel like they should be holding an infant...all these years later.  As I feel the symptoms of illness or the side effects of meds, I also vividly feel the presence of our four other children...every single day. RA is just as responsible for these things, too.

I don't know when or why I started referring to each of these days as a "Baby Day," but I guess it's my way of acknowledging the potential happiness that once existed with our little ones: March 15, October 7, August 2, and January 16.  They are always rough, and they always feel like it just happened yesterday.  We buy flowers on these days, in remembrance.  Sometimes I do it, sometimes Sean does it, sometimes we do it together.  Our kids don't know why, and it has never occurred to any of them to ask.  I always buy pink ones in January because I am as certain as can be that baby was a girl.  I know it, in a way that a only a mom could.  I think of her every time Gwen tells me she wants a sister.

We have come to terms with our family's history, and find so much joy in the kids we have with us.  I had an thought not too long ago: it's common knowledge that RA, like most autoimmune illnesses, go into remission during pregnancy.  While mine may have caused some bumps in the road, at the same time, I was probably in some sort of remission after having Wes that allowed me to get and stay pregnant with Gwen, and likewise for Gwen and Max.  In their own way, I think my kids kept me healthy...healthy enough that they all allowed each other to come to be.  I'm not sure how medically sound that theory is, but it's one that gives me a lot of comfort.

Thanks for reading.

1 comment:

  1. Beautiful and moving…your writing heals…it helps me, thank you, David