Bittersweet Hours

Oh sweet Flicker, you are so loved.  So loved by your dad and I when you came to meet us on Wednesday night, sleeping so peacefully.  So loved by the God you met in Heaven who wrapped you in His arms whole and restored.  So loved by a great many people on this Earth who miss your presence here deeply.  So loved.

In the bittersweet time we spent together in the wee hours of the morning on Thursday, your dad and I told you over and over and over again just how much you are loved. We kissed you and squeezed you and wrapped you up tightly.  I know in my heart that you know that, but I am so grateful we got the chance to tell you in person.

I would be insincere to say that I am not angry and devastated that your dad and I don’t get more time with you here on this Earth.  The what could have been is just too much to process right now.  But sweet Flicker, you were just not for this Earth.  You didn’t deserve the pain that you would have suffered as a result of your condition.  You didn’t deserve the heartache that would have come upon learning that your time here was going to be so limited. So your dad and I take on this pain and heartache here on Earth while you watch over us from Heaven.  I guess that’s what all parents want for their children – to take on their burdens.  Though it isn’t easy, we are up for the challenge knowing that your dad and I have each other, our memories with you, the love of our God, the support from our wonderful community, and the promise that we will be reunited with you in a much better place than here. But wow, does this sting.

Thank you, sweet Flicker, for teaching me new ways to love. Now go and be well up there, we’ll hold you again someday.

The Gift of Movement

Let’s keep this short and lighthearted, sweet Flicker, because this could be a scary week. Or it could be a perfectly normal week. All to be revealed in due time.

I simply love feeling you move inside of me. The feeling is indescribable. It is the unequivocal highlight of each day. I only wish your dad could experience this gift with us, but I guess it is something special that you and I will always share. I first felt you move on Sunday, June 8th while I was in California wrapping up a work trip with a weekend visit with a childhood friend. I was rolling out of bed on a foggy San Francisco morning to watch the French Open tennis final when I felt your flutters, which admittedly startled me. In the weeks prior I had asked several friends what your movements might feel like, and they all described this not-before-felt sensation that was more often communicated in hand gestures than spoken word. In that moment – our first moment – I completely understood why. It was not a a sensation that could be bound by words. But it was definitely you.

As we grow together each week your movements have become ever more present, something which I promise to never take for granted. After all, your doctors originally were not sure the extent to which I would ever be able to feel you move. I am so grateful they were wrong about that. I wish they were wrong about so many other things, but I will celebrate this small victory.

You are not a morning person, sweet Flicker, a trait to which I can absolutely relate. But in the afternoons and evenings your movements become my focus, and for those brief seconds I get to celebrate your life in a very tangible way. What an honor that is, because I know it is probably hard work for you to move. Visualizing your persevering movements gives me the strength to keep moving forward. Thank you for that, sweet Flicker.

When your dad and I saw you this past Friday afternoon your heart, as always, was beating strongly and you had your hands up in front of your face. Camera shy, I suppose. However one of your doctors expressed some concern about amniotic fluid levels, which could be nothing or could be everything. First thing tomorrow we get to go see your all-star team of maternal-fetal medicine specialists who will shed more light on what might be going on in your world. But we will worry about that tomorrow. Tonight we celebrate your movements, celebrate 26+ weeks, celebrate our lives together and pray that we have many, many more nights where your movements help power my world.

Showing Love

You come from a family of do-ers, sweet Flicker; natural pragmatists who actively work through problems and puzzles each day.  This I’ll-solve-it-based orientation has been one of the most challenging things about living with your diagnosis each day.  If you were sick or injured outside the womb, we would take you to the best doctors and nurse you back to health.  If you were hungry, we would feed you whatever it would take to satisfy and nourish.  If you were scared, we would wrap you up in safety and reassurance.  But with you in the womb sick and injured, we simply cannot do a thing.  No doctor can fix you. No nutrition can fortify you. No physical touch can comfort and re-assure you.  Sweet Flicker, this absolutely slays us.  On so many of these days I feel incapable and helpless knowing that the physical conditions that limit you were hardwired into your development so early on, and there is simply nothing that your father or I or any doctor can do to reverse what has been done.  There is no do-ing outside of a miracle from God that will un-do your prognosis.

Let’s daydream for a minute, sweet Flicker, that all was perfectly well with you.  In the first months of your life outside the womb I would demonstrate my love to you in so many tangible ways – snuggling, feeding, soothing, swaddling, bathing – without any expectation for reciprocation.  As you age into your toddler years I would expect you to challenge and disobey me even though my commands to listen and be aware of your surroundings and be kind to others would be keeping you safe and teaching you how to love.  When you approach the tween and teen years I know you would disagree with me and push boundaries and react without reason despite my efforts to guide you into making sound decisions.  Through all of that, sweet Flicker, I would love you unconditionally. That’s the crazy thing about being a parent – agape love without reciprocity.  My biggest hope would be for you to then take this model for love once you are mature enough to understand it and continue the cycle with the family that you raise.

When I think about all the ways that people can show love to one another, it’s generally through some combination of action, word or in our culture, gift.  Your dad and I are not big gift people, typically choosing instead to communicate love through everyday word and action.  Your dad is a big fan of food, so a well-cooked meal prepared with his favorite ingredients is one way that I show love.  Meanwhile he knows that I am not a big fan of doing dishes, so after the meal is cooked your dad springs into action to clean up the mess, a definitive showing of his love to me.  It is not the stuff of storybooks, but it’s how our love works.

Putting daydreams aside, sweet Flicker, I am constantly asking myself how I can possibly demonstrate love to you without being able to touch you or see you or talk to you or care for you in any active way.  Sure I can take my vitamins, eat a healthy diet, exercise and get rest so that the conditions in your world are as good as they can possibly be.  But I just never feel that is enough.  What else can I do?

Lately I have been driving myself crazy with this line of thinking, sweet Flicker.  But following a church sermon today I have been trying to think about how my love for you in a way parallel’s God’s love.  After all, God is not in my kitchen after every meal physically doing my dishes each night, but that doesn’t mean that I question His love and care for me.  It’s ever-present and unconditional.  I guess that’s how I have to think about you, sweet Flicker.  You will likely never be able to see me actively caring for you, but I pray that you know how much your father and I love you in the depths of your soul, ever-present and unconditionally.

A kind friend sent me a blog post by an amazing woman who unfairly is walking through a similar journey of carrying a child with a poor prognosis.  In response to this post one of her supporters, who used to deliver babies, shared an incredibly beautiful description of what it looks like when all a child knows is the loving sounds and touches of family.  The baby she referenced lived for only a few short minutes on this Earth, but spent that entire time in the arms of the people who loved her most.  While absolutely heartbreaking, there is something incredibly comforting about knowing, sweet Flicker, that you will only know love.  You will never have to confront bullies or naysayers or doubters.  You will only know the protection of the womb and the love of our arms. Beautiful.

Of course I still deeply wish I could trade this reassurance with the ability to comfort and guide you in the face of adversity as you grow up, but please know sweet Flicker that I love your dad, he loves me, we love you, God loves all of us, and we can’t wait to show you what this love feels like in whatever short time we may have with you on this Earth.

Unconditional Love @ 25 Weeks

Unconditional Love @ 25 Weeks

Walking the Line

Last night, sweet Flicker, I dreamt of you.  I dreamt of your birth, uneventful, greeting this world smiling with lots of dark hair and light blue eyes like your father.  You had a cleft lip in this dream, the only evidence of limb body wall complex which made it into my subconscious.  Otherwise you were perfect. Healthy. Alive.

Surprisingly this is the first dream I have had about your birth, which left me in tears upon waking and realizing that it was, in fact, just a dream.  This type of dream is what my nightmares are made of; a false happiness lived out in the subconscious that I know is not going to be achieved in the tangible world.  As I sit on my porch and write on this peaceful July morning, sweet Flicker, I am sure that you sense the overall unsteadiness I feel driven by my inability to shake the vivid images from last night.  In what bizarro world is such a happy dream the source of so much pain?

When I find myself in a state of melancholy like this, I try not to fight it.  I know, sweet Flicker, that I am going to have some tough mornings, afternoons, evenings and nights processing whatever trigger put me here in the first place.  But I know there will also be bright times within this valley; times where the weight of your diagnosis is temporarily lifted by a joy-filled moment in the present.  [dark] A horrible appointment with the NICU doctors where we are reminded of realities of your diagnosis in cold, heartless medical parlance. [light] A light-hearted beach day on Cape Cod with good friends followed by a scoop of the best homemade ginger ice cream I’ve ever had.  [dark] Waking up on Mother’s Day knowing that this year I am going to be a mom to a boy in Heaven rather than a boy who can make me a hand-drawn card. [light] Spending Mother’s Day afternoon on Spectacle Island with your father, picnicking, reading and resting on a shaded hill overlooking the Boston harbor.  [dark] Canceling our six-year wedding anniversary trip to Paris and Rome,  remembering that we talked about starting our family over dinner in Istanbul on our third anniversary.  [light] Taking an anniversary day trip to Providence where we people watched in a beautiful park and took in the strange but celebrated Fire Water installation downtown.  [dark] [light] [dark] [light] and on and on we go.

When I think about this unpredictable oscillation between dark and light, I visualize myself being drawn back to a narrow line representing the collective average of all of the high joy and high pain moments that knock me off-kilter. Gaining an understanding of what this place of equilibrium feels like in the 12 weeks since we received your diagnosis is what helps to guide my prayers each day.  Please God, give me the highs and lows in this day that put me in balance.  We have to feel the pain, sweet Flicker.  But we must also allow ourselves to feel the joy without any tinges of guilt.  We cannot feel bad about seeking out moments to laugh or creating experiences that we know will lift our spirits.  They are good for you, for me, for your father, for all of us.

Before I met you, sweet Flicker, my idea of balance was more aligned with the notion of steadiness.  That is, not allowing myself to get too low or too high so that I can maintain a somewhat consistent state of general wellbeing.  This trait had been one of much ribbing and confusion among those in my family who have never been quick to attach themselves to the concept of moderation.  Your YiaYia (my mother) does everything unapologetically BIG – talks, laughs, cooks, loves, projects, exaggerates, misbehaves – it’s what she’s known for and what draws people immediately to her.  Let’s just say the apple does not fall far from the tree when analyzing the rest of the family.  Consequently my bent toward practicality and boundaries has always been a source of mystery.

But in this new normal living with you, sweet Flicker, steadiness is simply not possible.  I also do not think it would be healthy for us to repress the urges to feel the extremes. Our day to day is about living in the present; taking in whatever good, bad, or otherwise greets us in the moment.

Matthew 6:34 – “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”  

Amen to that, sweet Flicker, so in this moment of sadness let’s look at some of the good times we’ve had together and try to get back to walking that line.

Dowses Beach @ Cape Cod July 3, 2014

Dowses Beach @ Cape Cod July 3, 2014

6th Anniversary Day Trip to Providence

6th Anniversary Day Trip to Providence

Spectacle Island on Mother's Day, 2014

Spectacle Island on Mother’s Day, 2014

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.

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.