Normal

What a beautiful weekend it’s been, sweet Flicker.  Illuminated by copious sunlight we kayaked on the Charles River, barbecued with dear friends, walked the tree-lined Minuteman path and read on our shaded porch.  A quintessential New England summer weekend that makes enduring the brutal winter months almost worth it.  Kicking off this lovely weekend was a visit to the doctor on Friday afternoon, a now weekly ritual in which we get to check in with you.  I will be honest, sweet Flicker, that I have left many Friday afternoon appointments in tears over the pictures that sometimes haunt me and the plans that are so difficult to acknowledge.  Plans that involve consultations with the NICU and documentation for the anesthesiologists and medical codes for insurance and on and on and on.  But this Friday, everything just seemed so normal.  You were moving all around for us, showing off your dexterity despite the physical limitations we all know to be present. That I can now sometimes feel these movements makes it all the more surreal.  Your heartbeat, as always, was fast and consistent and strong.  We arranged plans for a glucose test, checked my blood pressure and weight gain and did the routine things that all pregnant women do at the end of the second trimester.

Your dad and I left that appointment and couldn’t help but ache for normal; deeply affected by the brief taste we were offered on Friday afternoon. But as soon as we left the office the weight of your prognosis cruelly entered back into our realm, bitterly reminding us that while there is very little that is normal about you, Sweet Flicker, living with you for the brief time we have together has become our new normal.  We have now lived with this new normal longer than we lived thinking all was well with you, but truthfully I hardly remember those ignorant days.  I sometimes wonder if I would have rather never learned of your diagnosis, enabling us to exist in a false, yet joyous, sense of security.  No doubt we would be spending these next few months arranging your nursery, reading parenting books, planning baby showers, and folding your tiny sets of socks all under the false guise that the movements and heartbeat and growing belly indicate your thriving march toward an October debut.

No.  I wouldn’t have wanted that.  Or maybe I would.  No, it would be harder.  Wouldn’t it. Wouldn’t it?

While I struggle to remember the good days, I distinctly remember the days that immediately followed “incompatible with life.”  Unable to piece any semblance of life together for us, sweet Flicker, I took the remainder of the week off from work to allow myself to simply sit at home and Be Sad.  While those days were absolutely necessary in order to process the rawest form of my grief, I came to realize, sweet Flicker, that I had to create a life for us that was about more than just Being Sad.  For my own mental health, which directly impacts yours, I needed to carve out what this new normal for us would be.  So the following Monday I dipped my toe in the water by returning back to work, then back to cooking dinner, then back to church, then back to attending social functions, then back to exercising, on and on in a continuous pattern until my life to the outside world looked largely uninterrupted.  You and I and your dad, of course, know better.

Every single day I question my decision to integrate so much of my old normal into our new normal, sweet Flicker, often feeling guilty that you are spending so much of your short life in meetings and on conference calls and making small talk.  Maybe we should be out adventuring every day, traveling the world and documenting its beauty.  Maybe we ought to be spending all of our time with your grandparents, aunts, uncles and cousins who so much want to be a part of your everyday life but are separated by great distance.  Maybe we should be writing a book or spending all day in counseling or seeking out other area moms going through this or….

But let’s be real, sweet Flicker.  There just isn’t any emotional capacity for “should be’s” or “ought to’s” or “they are doing, so should I’s.”  For you and me and your dad right now, it’s about living among the world each day that allows us to care for you in the only way we know how.  For us, that means living much of our old normal with added weight of this new normal, requiring additional routines of prayer, submission, resolve, vulnerability, exhaustion, hope, love, and the seemingly infinite range of emotions that hit us each day.  I know that our new normal will look different from the others who have, are and will suffer a similar paradigm shift driven by infant loss, and that is absolutely OK. We are all in this together as compulsory members of an exclusive club that none of us want.  All we can hope and pray for, sweet Flicker, is that all of us feel the abounding love that you, me and your dad feel each and every day from those who care for us so.

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When Words Fail Me

There are some days when words simply fail me, sweet Flicker.  I am generally not accused of brevity, but when trying to explain you – to dignify your life beyond your diagnosis – I just don’t know what to say.  So many conversations are had in passing – between meetings, at the grocery store, crossing on the bike path – places that seem inappropriate to detail the weight of your abbreviated life.  Instead, I mostly find myself going through the motions of vaguely answering the questions that incredibly well-meaning, caring people ask upon seeing my growing belly:

     “We’re due in October.”

     “It’s our first.”

     “Yes, it’s a boy.”

     “Physically I’m feeling very well, thanks for asking.”

     “We call the baby Flicker, but don’t have a name picked out yet.”

And on and on and on.

But you and I both know that’s all a facade, sweet Flicker.  I can’t ever find the right moment to say:

     “But we’re likely not going to be bringing him home.”

     “He has a very rare condition.”

     “His prognosis is very, very poor.”

     “We need lots of prayer.”

I feel like I’m being dishonest; of hiding some of the major details of your life in order to protect myself from an uncomfortable conversation and shield others from your tragedy.  I apologize for that.  Please know that I’m not ashamed of you, sweet Flicker.  I am just at a loss for words and timing.  So I retreat to this space; a place where the written word can create a degree of separation between us and the rest of the world.  This may be a cop out, sweet Flicker, but it is all I can do to get through the days right now.

At the end of these hard days, when the exhaustion of keeping up appearances takes over my brain and body, I lay in bed and listen to you.  You don’t yet have a voice, can’t yet form words, lack the capacity to muster out primal cries.  But you have this:

The frenetic, galloping beat yours; the slower, steady beat mine.  When words to the outside world fail me, sweet Flicker, it gives me comfort to know that my heatbeat is your soundtrack, always with you in your world, saying just the right thing.

The Paradox of Context and the Promise of Light

You are now 22 weeks old, sweet Flicker, which candidly speaking is an age I never thought you would achieve.  I realize it is uncommon to consider gestational age in this way, but we are in an uncommon situation.  Our situation mandates that we count each week of this life-in-progress as the only life you may live.

Context helps to bring me sanity on the hard days, while on other days the context that I invite breaks me in two.  We are only 18 weeks away from the 40-week benchmark that most families circle on their calendars in anxious anticipation. For us, these 18 weeks tell two contradicting stories:

Story 1:  18 weeks, in the grand scheme of my life, is actually quite short.  When I find myself questioning how I am going to survive this season of sadness, I try to focus on the notion that this specific breed of sadness – what I would consider the anticipation of deep grief – will not last forever.  By no means am I asserting, sweet Flicker, that once you go on to meet your Maker that my season of sadness will end.  In fact, it is almost guaranteed to deepen; morphed into a new season of grief over missing you.  I truly cannot process how I am going to survive that breed of sadness; a mystery which will reveal itself in due time.  You and me and your dad. Day by day. That is all we can live right now.

Story 2:   18 weeks, in the grand scheme of your life, is just not long enough.  As humans we are hardwired to hate death, to fear it and mourn it and prolong it as long as possible. It gives me some comfort to know that you will likely never have to consciously confront this fear, but rather its cause will take you before that time comes.  However the realization that your death could come at any time (which is true for all of us, I suppose),  but at maximum 18 weeks from now, (which is true for none of us, I suppose) leaves me paralyzed.  So we end up in the same place –  you and me and your dad. Day by day.  That is all we can live right now.

In speaking with one of our pastors about you, sweet Flicker, we were given some very sound advice.  Though right now is certainly a dark valley, one day, some day, we will be living in light.  This promise of light is asserted over and over again in the Bible, and is something that your dad and I promise to each other every day.  But we were cautioned against establishing specifically what form this “light” will take in the future, as failing to reach such an inflexible definition could cause significantly more darkness. Bitterness. Hopelessness. Anger.  So against all temptation we are trying not to put pressure on ourselves or God to fulfill our parameters of light. To make you whole.  To give us a biological family.  To take away this pain.  Rather, we are clinging to this ambiguous promise of light as the destination of this tough journey together.

Truthfully, sweet Flicker, I think that this current season of darkness will always leave a mark on my soul.  And that is OK.  What the promise of light tells me is that while the darkness today can be nearly all-consuming, that will not always be the case. Slowly but surely, some darkness will be replaced by uncertainty.  And uncertainty by optimism. And optimism by light.  Your infinitely talented father created a drawing to reflect this progression, which I study with you each day.  I have re-created it as the backdrop for this space, sweet Flicker, in hopes that it can serve as a visual reminder of the promise of light to others who find themselves in the dark.

The Promise of Light

You and me and your dad.  Day by day.  That’s all we can live right now.

Rippled. Ruffled. Eliminated. Resurrected.

I wish I had a grand romantic story to tell you of your conception, sweet Flicker.  But let’s face it – no kid wants to hear that kind of thing.  We tried for several years to bring you into this world, and with the help of the kind people at Boston IVF and a little magic from God you came to be this past February.  I will never forget that day.  You were put into my womb on Super Bowl Sunday, and your dad and I joked that we would have to name you after one of the players on the winning team.  The Seattle Seahawks were victorious, so there began our list – Russell, Richard, Marshawn.  Marshawn D’Elia.  Has quite the ring to it.

We first met you when I was just four weeks pregnant (which is really only two weeks – this fertility business is pretty confusing, sweet Flicker).  You were tiny – no bigger than a grain of rice – but very clearly we watched your mighty heart flicker rapidly on the ultrasound machine.  There are simply no words to describe the emotion of that experience; watching a beating heart inside of my own body that will one day power you.  Power you while you chase the cat or do cartwheels in the front lawn or take a nap in your sunlight nursery. Beat strongly as you walk to your first day of kindergarten or fall for your first crush or marry and have children of your own.  That little flicker will be there through everything.  After we left the doctor we could not stop gushing about that little flicker – our little Flicker – and thus your nickname was born.

We saw you again at six and eight weeks, each time in awe of how fast you were growing.  From grain of rice to lentil to kidney bean all in the course of a few weeks.  Miracle.  Each time we met you, sweet Flicker, we fell more in love.  We weren’t the only ones to fall in love with you. Your grandparents, aunts, uncles and cousins all heaped love upon you.  Your de facto Boston family were simply overjoyed.  You were gifted with tiny onesies and shoes with the Canadian flag on them and a pretty stylish set of striped pants. Part of the beauty of this time was that only our most dear friends and family knew about you, like a perfect little secret that we loved to keep.  There would be a time when we would announce you to the world, but for now it was just us.  You, me, your dad and our best friends.  The community who would help raise you. It was just perfect.

You were merciful on me, sweet Flicker, in terms of causing morning sickness.  I never felt sick, and was only slightly more tired than usual (who are we kidding – I need few excuses to take a nap).  From what I could understand and feel, everything was going perfectly with you.  If only you could have been telling me what was really going on.  What did it feel like when everything started to rupture?  Please, please tell me that there was no pain.  No heartache.  No sadness.  Please tell me that you felt warm and safe and loved amidst the chaos that was happening around you. It kills me to know that you were being harmed and I didn’t know it.  I don’t know how I will get over that.

It was at our 12 week doctor’s appointment, sweet Flicker, that our whole world crumbled.  That we were shaken to the core.  That your father and I cried together.  That we couldn’t believe the words we were hearing. “Something’s just not right.” “Severely abnormal.” “Not how it’s supposed to be.” We went home that horrible afternoon and questioned everything.  Questioned God.  Questioned what we did wrong.  Questioned whether the doctors could possibly be right.  They had to be wrong.  This had to be a mistake. It was just one ultrasound. We talked with our families and pastors and friends over that weekend. We prayed and talked and speculated during a long walk around Walden Pond.

Sympathy with the fluttering alder and poplar leaves almost takes away my breath; yet, like the lake, my serenity is rippled but not ruffled.
      – Henry David Thoreau, Walden

Coming out of all of our conversations from that surreal weekend it seemed that everyone had a horror story of their own or of a one-degree connection in which they received a bad pregnancy prognosis, only to point out their beautiful son or daughter playing in the next room.  While your dad and I weren’t counting on the doctor we would see Monday saying “just kidding, you are perfect,” we had come to terms with the possibility of raising you with special needs or having to manage a high-risk pregnancy.  Hope rippled, but not ruffled.

April 14 was the worst day of my life.  “Incompatible with life.” “Less than one percent chance of survival.” “Catastrophic.” Many other words were exchanged through cries of anguish and pain, but none of them matter.  It was just me, you, your dad and this new reality that we would likely not be bringing you home in October.  Cut out all of the doctors and testing and follow up appointments.  It was just us.  I am sorry I could not be stronger for you, sweet Flicker.  That I could not demand that the doctors fix you, reverse their prognosis, tell me everything was going to be ok.  I felt so powerless that I couldn’t protect you; couldn’t take on your pain so that you could live.  Over the days and weeks to come we would get test results back and a more firm diagnosis, but again none of it mattered.  What was done was done and all we could to is go home and try to cherish what little time we will have together.  Hope was beyond rippled or ruffled; it was eliminated.

But human resilience is an amazing thing, sweet Flicker, something you have demonstrated to me in spades by continuing to fight week after week. I draw from your strength as I daydream of bringing you home.  Pronouncing you a miracle.  Watching you thrive in spite of your diagnosis.  Only God knows what the future will hold for us, sweet Flicker, but I promise to you that I will keep a fierce hope from which I hope you can draw strength. My strength is yours, and yours is mine.  Beautiful.

Who is Flicker?

Simply put, Flicker is my son.

At this point it would be appropriate to launch into stories and anecdotes about the nuances of his life – his personality, passions, shortcomings, tendencies, dreams, quirks, style – but these details are unknown because he is still in the womb.   His outwardly life remains shrouded in mystery, a mere point of speculation based on familial traits (and some high hopes, of course).

When I read stories of personal triumph over adversity, regardless of the flavor, there is often the sentiment of not being fully defined by it.  Reducing a life down to one trait – a cancer survivor, a reformed addict, an immigrant – fails to account for all the dimensions that make humans so complex.  We are wives and mothers and sisters and friends and coworkers and runners and pessimists and data analysts and pragmatists and survivors and class clowns and chocolate lovers all in one being.

With Flicker, I struggle because his diagnosis truly is the one dimension of his being that is known; the only one I can verbalize with certainty.  Flicker has Limb Body Wall Complex, a little known congenital condition that leads to series of unknowns:

  • No known cause;
  • No genetic links;
  • Almost no published research or available data based on its extreme rarity;
  • And the most heartbreaking of them all – no known survivors.

The cold words “incompatible with life” are what doctors use to describe Flicker’s diagnosis; words which I am still unable to process.  Consequently I live each day knowing that the child growing inside of me – my son – is only going to know his protected world of the womb and not the dynamic world in which we live.  A realization which is, as you can imagine, soul crushing.

I am not going to spend any time writing about the medical conditions that accompany Limb Body Wall Complex and the profound impact they have on Flicker’s development.  Rather, I hope that this series of writings can serve a few purposes:

#1 – To reduce the alienation that is felt upon grieving infant loss.

While the specific circumstances of my experience may be unique (as are all diagnoses and the context that surrounds them), the loss of an infant is shared through many communities in the form if miscarriage, chromosomal abnormalities, the long tail of rare conditions (that when aggregated become less so), unexpected sickness, and an infinite list of tragic circumstances beyond any bound of reason. I am not alone in this, and neither are you.

#2 – To verbalize a world around Flicker that becomes more than his diagnosis.

Flicker’s world and my world are inextricably linked, so this second purpose is admittedly more for my own processing than anything Flicker will likely be able to appreciate. Thanks for participating in this form of therapy for me.

#3 – To ask for prayer.

The third purpose makes me nervous even to type out because I am generally not one to comfortably share my faith.  But it’s impossible to talk about Flicker and my world with him in it without leaning on my faith in God.  I believe in prayer, and if you do too I’d love it if you prayed for me, for my husband, my family, and of course for sweet Flicker.

With that, I turn this site over to life with sweet Flicker, however short it may be.