Waiting in Hope

A few weeks back I had the great fortune of attending a dear friend’s birthday party, at which there was pianist playing the birthday honoree’s favorite songs.  The pianist is a member of a band called Shel, comprised of a quartet of sisters who pen and perform original works that are equal parts beauty, spirit and sorrow.  As Hannah closed her set that night, she played a song she wrote while watching birds flutter out her window called First Flight:

 

 

All at once, I saw you and I meeting for the first time in Heaven.  Just seconds prior I was talking about something inconsequential with a friend, but once this song started I was fully transported to this moment, or at least how I picture this moment to go – anticipation, crescendo, exuberance, questioning, sharing, reminiscing, joy – it was just amazing.  A song about birds brought me to you!   I sat in that small living room, closed my eyes, and let the sound envelop me while this scene played out in my mind.  What a gift!  A gift of waiting in hope for this day to come.

Waiting in hope is a concept that has been top of mind recently as we are living these final days of 2014.  In the waning days of 2013 I distinctly remember your father and I projecting how great the upcoming year was going to be, because that is what you do at the close of any year.  You enter it with the hope, even expectation, that in it will store great things.  On this New Year’s Eve I am so much more cautious, which is a little sad if I am being honest.  Of course I have to believe 2015 will be better, but in saying “better” it casts you in the “worse” category.  Sweet Flicker, what happened to you was simply terrible. It was tragic and confusing and surreal.  But those 27 weeks I spent with you in 2014 I would not trade for anything, except of course for your health.  So know that you did not make 2014 terrible.  But losing you did.  Remove that stupid empty verb and it would just be you.

To wait in hope for what will come in 2015 brings me back to that fateful day in April when we learned of your prognosis.  Late that night after I put my head back on my shoulders, I wrote this email to family and friends titled A Reflection on Waiting:

April 15, 2014

Much has been made of our modern inability to be patient.  How our on-demand, binge-viewing, overnight-shipped selves just can’t wait for anything.  Generation Instant Gratification. Generation [give] Me [now]. 

People often laugh when DP and I share our courting story.  We met in August, began dating in March, were engaged by January and married by June.  Why wait? We knew we wanted our lives to be one, so let’s get busy livin’, as they say.

Today I’ve been meditating on the process of waiting, and how it has profoundly impacted our lives in the nearly six years since we’ve been married:

We waited for a few years before we decided that we wanted to start a family.  We both had young careers to develop, wanted to enjoy our early marriage, loved to travel, and felt like we needed to establish our lives in Boston as a family of two. And we did all of those things. This wait was one of empowerment, of self-destined planning where we felt in control.

Then, we continued to wait. But this was of a different form.  The wait of infertility. The opposite of empowerment. Month after month after month after year after year we waited for a positive pregnancy test; one that would never come.

We waited through several failed fertility treatments, each one more difficult and invasive than the last.

We waited as my body prepared itself for IVF, injecting it with hormones and vitamins daily until it was ready for the procedure.

After the procedure, we waited three seemingly endless days until we learned that we had two healthy embryos; one which we would implant and one which we would preserve.

We did “The Two Week Wait” –  what people in IVF circles call the 14 days between implantation and a scheduled blood pregnancy test where you are nearly paralyzed with the nagging question – did it work?

Celebration!  Worth the wait! We were pregnant, due in October right around DP’s birthday. We got to meet the person who we would come to call “Flicker,” a namesake after the flicker of it’s tiny heartbeat on the 4-week ultrasound.  The 40-week wait for a healthy baby, one filled with reading and nesting and shopping and showers, seemed like the best kind of wait.

But caution, they tell you, to really wait to celebrate until you get to that magic number – 12 weeks – where the risk of complications and miscarriage drastically dips and it’s “safe” to share your happy news with family, friends and co-workers.

Thursday, April 10 – 12 weeks!  No apparent complications. Not even any morning sickness.  We had made it! But just to make it official, let’s wait to make our big announcement until we see the doctor tomorrow, hear Flicker’s heartbeat and see the ultrasound.  Such peace we felt. I booked a celebration dinner for Friday at our favorite local restaurant, and we made a list of all of the people we were going to call on the weekend to share our happy news.

Now, friends, let us tell you about a new kind of wait.  A wait that we can neither process nor explain fully in this raw state.  Yesterday we were told by the head of neonatal medicine at Beth Israel, in no uncertain terms, that our baby is not going to live to full term.  Less than 1% chance.  And only because doctors cannot say 0%.  It could be days. It could be weeks.  It could be months.  But this baby, we were told, will not make it.  That means DP and I are now waiting for our baby to die.

We sit here paralyzed in fear, dread and deep sadness as we plan how we are going to navigate daily life with this insufferable burden of wait.  Truly I tell you all that we don’t know how we are going to make it through this, as right now we feel completely defeated. The thought of carrying our baby for possibly several months, looking each day at my growing belly, potentially feeling it move inside me, is a form of high torture.  But the alternative – termination – we just can’t.  We heard the heartbeat – strong.  We saw the brain – developing. What if Flicker is a miracle? What if the doctors are wrong, and that Flicker is the <1%?  What if?

This wait is beyond comprehension. It’s not fair. It’s not how this is supposed to be. But it’s our current reality.

We are sorry to come to you with this heavy news, but as the friends who we love we want to prepare your hearts for likely more sad news to come.  We also come today to ask you for prayers:

  • That tiny Flicker is not suffering
  • For a miracle – make Flicker strong and viable so we do not have to suffer

These next two are very difficult, so again I apologize:

  • That if Flicker is suffering and is not going to live, that the end come quickly and not extend the suffering
  • That the results from the placenta biopsy we took yesterday come back indicating a non-chromosomal condition; one that cannot impact the embryo we preserved for future pregnancy.

We love you all, and will be leaning on you as we work through a potentially heartbreaking end to what was already a very long and painful journey.  We will be parents.  We will have a family.  We might just have to continue to wait.

With Love,
Kari & DP

As I think back to that day, the type of waiting that I wrote about was not the same breed that meets me today.  That was not waiting in hope.  That was waiting in fear and sadness and grief.  The wait that I feel today, on this Dec. 31st, is truly one of hope!  I have written before about the mystery of resilience and the gratefulness I have for my optimistic disposition. Thank God for that!  So let’s move forward from the sorrow of 2014, keep hold of the joy that it brought, and usher in new experiences in 2015, whatever they may be.  Happy New Year, sweet Flicker!

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Neat Little Bows

We humans love our perfect endings, sweet Flicker.  You see, there is this girl who meets this boy and lives happily ever after.  Oh, and the one where the underdog finishes first.  Lest we forget the story of the bad guy who gets exactly what he deserved.

I am quite the storyteller in my own mind.  And let me tell you, sweet Flicker, the audience just loves it.

My inner monologue has been verbose of late; this ill-informed prophet who puts words only I can hear to my innermost thoughts.  Words that make wishful narratives take hold, anchoring to my subconscious and refusing to let go.

You must have heard the story of the woman who lost the son who she loved so much, who then went on to change the world?  Her son was the catalyst for this change, so thanks be to God that out of this terrible calamity came forth such beauty.  Order has been restored.  There is sense in this tragedy.

Oh, and there is the one about the loving couple who tried for years for a family, were giveth a son who was taketh away, but then wouldn’t you know were blessed with new life – twins even – to break up their mourning. Isn’t that just a tender, redemptive story?

My wrongs are righted.  The abstract comes into focus.  All dots are connected.

The problem with this inner monologue, sweet Flicker, is that it is pure fantasy.  It is the stuff of daydreams and sleepless nights.  It comes from a place where I control all of the variables and manipulate the outcomes.  In this world there was no fall and there is no brokenness and all things are wrapped up with neat little bows.

But in this human realm, sweet Flicker, there is no tidy end to our story.  At least not right now.  And I feel confident saying that there never will be.  My heart still aches and I do not know why limb body wall complex happened and infertility does not just go away and I do not control any outcomes and I can not even identify all the variables, let alone dictate them.  There was a fall and there is terrible brokenness and I do not have a neat little bow to wrap around our story together.  It is all just so unsettling.

I am learning to live without my storybook ending; choosing instead to embrace this series of off-pitch notes.  Or at least my monologue tells me I am embracing it.  To be honest, sweet Flicker, the verdict is still out.  This past Thursday, October 23rd, marked your three-month birthday (the word “birthday” does not sound right, but there is no vocabulary for this sort of thing) which also happened to be your official due date; the date that was supposed to be but never was yet still brings me joy when I think about the hours we got to spend together as a family of three.  What a mess of emotion to wade through that day.  It was not pretty.  It was not neat.  But your dad and I lived it together with the support of our [your] amazing family and community who helped to shoulder the burden by lifting us up.

Many things were said that day via phone calls and emails and text messages and cards and baked goods and meals and hugs, but just as notable were the things left unsaid.  There were no “everything happens for a reason” platitudes or “this will all make sense some day” proclamations.  Rather, there was acknowledgment that our life is hard and your loss is senseless and we miss you like crazy.  Unsettling truths spoken with compassion amidst the promise of light.  And the beauty in that, sweet Flicker, is not a neat little bow but rather the fact that Friday came as it always does and we were given a new day to live out this unwieldy life in faith and hope and love.

Questions

“How is your baby?” they ask; caring people who once saw me with you, and now see me without you, drawing the logical conclusion that you are bundled at home, cooing and napping and growing in love.  Sweet Flicker, I desire so deeply to be able to answer them (without having to share your absence, of course, which upon revealing ignites a wave of so sorries and are you okays and if you need anything let me knows).  I would give almost anything to know how you are doing in your life eternal.  Actually, let me revise that last statement. I know that you are experiencing a happiness and peace beyond anything I can comprehend. Thanks be to God for that faith-filled comfort.  But what are you doing?  How do you spend your days?  Who is rocking you to sleep? Is anyone singing to you? Oh sweet Flicker, while I know at a high level that you are so loved in Heaven, I crave these details more deeply than I have craved anything before.  Probably more deeply than I will crave anything again.

The certainty with which I know you are living in a beautiful eternity is matched with an equal and opposite force of anxiety over what the future looks like for your dad and me in this world.  Will I become pregnant again? When? With what intervention? Will limb body wall complex happen again?  Lightning cannot strike twice, right?  But will something else go wrong? Will we have a biological family? Should we pursue adoption? What does that look like?  What impact has your loss had on my level of fear? Will I continue to have nightmares two/three/four months/years/decades from now? Am I even mentally ready to ponder all of these questions?

No.

I should not be pondering all of these questions.  But this untethered mind of mine wanders far and wide, searching in vein for answers that no one by my Maker knows. It is exhausting, at times enveloping all thought and eclipsing all creativity; evidenced by the blank pages appearing in this journal of late. Sweet Flicker, thank God I do not have to question you.  Your life here remains only in my past, and your future There is fully known.  Painful. Beautiful. All at once.

I recently entered a new year in my life, a birthday spent managing the gap between my expectation (just a few weeks until you are here!) and my reality (just a few weeks after you have come and gone).  As with countless other times in this journey with you, I experienced this general melancholy alongside a tinge of hope. A hope that this new year of my life may bring with it great things.  Of course there is the other scenario of more darkness, but I cannot go to that place.  I am grateful to be blessed with an optimists’ disposition.  My dear friend, your dear friend, shared a wish that this be my year of the phoenix – new life and utter beauty rising from the ashes.  All to be revealed in due time, sweet Flicker, but for now I challenge myself not to question. Trust. Live. Welcome the new with hands wide open, one moment at a time.

Moving Forward

More than a month with your absence has come and gone, and I am still standing.  Human resilience is an amazing thing, sweet Flicker.  Though I am standing, I will admit that my stance is not always perfectly upright.  At times I find myself leaning backwards, reflecting on past moments that I so deeply wish I could change. Other times I lean forward, brooding with anxiety about a future that I in no way control.  It is difficult to stand upright – to live in the present – when I spend so much time woeful about the past and worry-filled about the future.  This back and forth can be paralyzing.

I returned back to work this past week; a big leap of faith in re-integrating into a part of my life that never stopped moving forward.  The last time I parked in this garage and walked up this hill you were with me.  I paced this beige-toned hallway as I listened to the nurse congratulate me as she read back the results of our positive blood pregnancy test.  During my last conference call I was able to rest my arm on my belly, connecting to your world.  Then all at once quarter end and deadlines and strategic roadmap and [insert corporate buzzword here] flooded a brain that is clearly still filled to the brim with your life, sweet Flicker.  Under the fluorescent lighting of my workspace I found living in the present nearly impossible; straining to assign meaning to concepts that I so quickly filed away when you entered and exited this world.  No vacancy.  This brain is full with things that are real, thankyouverymuch.

At the same time there is a new pressure (self-imposed, of course) to live in the present while honoring your past.  I had the pleasure of spending an evening after work this week with dear girl friends who mourn your loss alongside me.  As I left their company feeling grateful for continued goodness in my life, I came to the unfortunate realization that car had been towed, the result of mis-reading a cryptic sign in an unfamiliar neighborhood.  I was frustrated and angry and could not believe that the sign was so unclear.  Almost immediately I was even more frustrated and angry that I had frustration and anger over something that ultimately does not matter.  I, of all people, should have some perspective.  I have real things to be angry about, thankyouverymuch.

But you know what, sweet Flicker?  Being towed stinks. Workday tasks are important.  I need to give myself the grace to take things at face value.  You are forever part of my past, present and future.  But I cannot live all three at once – to be present while honoring past and dictating future.  Rather, I need to focus on putting one step in front of the other and feel what I am going to feel.  That is what moving forward looks like as I navigate this new life without you physically here, but always present.

What I have come to realize, sweet Flicker, is that moving forward is entirely different from moving on.  I can move on from a bad presentation, a negative exchange, a hefty towing fine.  These things are simply archived from working memory – forgotten – so as to not be forever jaded.  But I will never be able to file away your life and loss.  I will never be able to forgive limb body wall complex for stealing our future together.  I will never be fully at peace without you here with me.  But that does not mean that I cannot move forward by continuing to step – step – step – with grace and submission and trust.

Forward motion inspires a hope in me that the future will be brighter, sweet Flicker.  I do not know what that brightness will look like, but alongside the sadness I can promise that your life will be part of it.

Beauty

That little collection of ashes housed in that nondescript white container is not you, sweet Flicker.  I know that.  The essence of you – your spirit, your soul, your goodness – transcends that container and this place. A place which would have likely greeted you with ugliness and struggle and pain.  However I want you to know that there is tremendous beauty here; some of it obvious, some of it requiring the context of an experience to make itself known.

In the garden next door I see a ubiquitous white webworm moth fluttering amongst the rudbeckia blooms, its beauty manifest in a childhood memory of your wonderful great grandmother, Momma Yorse.  Each time she would see such a moth, she would lovingly exclaim, “Why hello, Ebenezer!”  When I was a small child unable to discern the world beyond what I had experienced, I thought that this Ebenezer, Momma Yorse’s devoted companion, was one lucky moth.  After all he was allowed to feast on the day lilies that lined her backyard pool, tomorrow the potted geraniums in my back yard, next week the wisteria climbing the lattice at Mama Lou’s farm.  An embarrassingly large number of years later I would come to learn Ebenezer was not one, but a vast many.  What a gift this was to place the beauty of a silly name and a friendly greeting to what most would consider a common garden pest.  Why hello, Ebenezer.  Nice to see you again.

I mourn that you left this Earth without drinking in any of its obvious beauty, sweet Flicker. I mourn that you left this Earth without the opportunity to have shared experiences that create beauty in your life here.

At the top of a hill on the back side of Spectacle Island sits a solitary tree.  This tree is rather unremarkable – approximately 15 feet tall, thin branches, small leaves, unknown species – yet it houses so much beauty for your dad and I.  This tree provided shade from an intense sun and an oasis from my sad disposition as we picnicked and read and napped and pondered and gave thanks on a Mother’s Day burdened with the weight of your diagnosis.  Leaving the island on that peaceful day in May I knew we would return to share it with you, sweet Flicker.  I prayed fervently that a miracle granted would allow you to be crawling around on our picnic blanket next summer, snacking on watermelon and laughing at the circling seagulls.  But a prayer unanswered dictates that we must share this place with you under much more somber circumstances.

As we boarded the ferry on Saturday alongside the throngs of tourists squeezing in a vacation in these waning days of our New England summer, I couldn’t help but feel strange about the motive of our journey across the Boston Harbor.  We must have looked just like everyone else –  backpack, picnic supplies, sunglasses – but on our person was your person, or the remnants thereof.  Over and over again I reminded myself that this was not you, sweet Flicker.  Just what was left of that cursed body that could not serve you here.  I hate that body – despise it with my whole being – but love it and miss it and mourn it all the same.  Such complex emotions enclosed in a tiny white box.  I wonder what tiny white boxes all of these happy families were carrying with them on to Spectacle Island?

At the base of this tree – your tree, sweet Flicker – your dad and I released your ashes into the Earth.  Intensely heartbreaking, I relied on the strength of your father and my Father as I watched our hope and intimacy mix in with the tall grass and soil.  This was not you, sweet Flicker.  Thank God it was not you. But I felt that it was so much of me.

Momma Yorse left this Earth this past November, also leaving behind a small box of ashes.  In her ashes I envision just a few particles of her infant days, when she was but a collection of cells from her mother and father. As she aged she developed her own voice.  Her own perspective.  Her own passions. She married my grandfather.  She traveled the world.  She raised three children of her own.  Each day as she lived on this Earth I picture her becoming less and less of her original self as dictated by the cells of her mother and father, and more and more of the self she became as a result of her life experiences.  Consequently the balance of her ash particles I envision to contain the 85 year of life she absorbed.

But you, sweet Flicker, left this Earth before you were challenged to take even one independent breath.  You were wholly reliant on me for everything – blood flow and oxygen and nourishment – and deprived of any chance to evolve beyond this dependent state.  In your ash I could only see your father and me and the life here that could have been.  A painful experience shared with your father and this solitary tree on Spectacle Island that will be permanently absorbed into my life story.

Yet in this sadness I am able to see the incredible beauty you have added to this unremarkable tree – your tree – sweet Flicker.  Your tree will be a destination for your father and I to visit and feel connected to you.  We will watch your tree grow and mourn that you are not growing with it, but be at peace with your presence in Heaven.  Lord willing your tree will provide shade as we picnic with your siblings in the years to come, telling them of your amazing little life.

Flicker's Tree

Flicker’s Tree

Celebrating Your Little Big Life

Deep breath, sweet Flicker. This week was a chaotic one, our small home filled to the brim with family and flowers and friends and visitors and food and… love. So much love. The atmosphere was in stark contrast to our first days home after meeting you; those surreal, upside-down days where all I could hear was the silence of your absence. I will admit that at times last week I craved a bit of that silence, escaping to quiet corners to reconnect with the familiar. It is so very strange how quickly the new becomes the routine, even when the new is something so unwanted.

Driving this flurry of activity was love for you, sweet Flicker. The community who would have helped raise you – your Yia Yia, Nana Bon, Papa, aunties, uncles, honorary family and playmates – came together to celebrate your short but massive life. It was a beautiful day, sweet Flicker, both inside and out as we spoke of your life and the passion you lit in us. Your dad even got the chance to challenge you to a game of horse, to be settled of course when we are all reunited in Heaven. Don’t let him win, sweet Flicker. His 3-point jumper is pretty legendary.

You had some “friends” there too: your little sheep lovie, hand-knit blanket, and stuffed bear who I know would have had a name. No doubt he would have been your companion, dragged all around the house by one leg or arm, the crisp white quickly dirtied. I don’t know why I am telling you this because I know in my soul that you were there with us, smiling alongside as our tears fell.

Flicker's Friends at his celebration of life.

Flicker’s Friends

When you were safely within me, you heartbeat still thumping, I would spend hours putting myself in various hypothetical situations surrounding your birth and passing – what it might feel like, what I wanted to say to you, how we would tell people – and on and on. But I could never bring myself to visualize your memorial service. It was too painful, too unnatural. After all, parents are not supposed to say goodbye to their kids like this. It is supposed to be the other way around, after long, fruitful lives spent together. What does it look like, feel like, sound like, when memorializing a person who we hardly got to meet, yet we know and love so intimately? Walking into the church on Saturday with no expectations or earthly knowledge of how I was going to make it through, I left several hours later arms locked with your father overflowing with joy. Of course it was joy experienced alongside grief and longing and pain, but joy nonetheless. My deepest wish is that you felt the joy, too.

This beautiful New England summer has been such a blessing during these hard days. Missing you while also missing the sun and warmth and sounds dampened by sub-zero temperatures and blustery snow would likely add another layer to my grief. Your dad and I needed some silence after your celebration on Saturday, so while your grandparents retreated to our home to prepare a D’Elia family pasta feast, your dad and I sought out a place of quiet reflection to soak in the sun and warmth, calming our anxious bones. Our original destination, Walden Pond, which felt the burden of our steps in April as we circled its shoreline processing your unconfirmed diagnosis, was closed without explanation. So we consulted our map and headed to an unexplored nearby green space, which led us to the Great Meadows Nature Conservatory, and this:

Great Meadows Nature Conservatory

Great Meadows Nature Conservatory

Thanks, sweet Flicker, for leading us here!

Thanks, sweet Flicker, for leading us here!

I smile when I think of you leading us here, to such an amazing oasis, to take in so much of God’s created beauty while thanking Him for your sweet little big life.

A Chance to Play

“A little nonsense now and then, is cherished by the wisest men.” 
– Roald Dahl, Charlie and the Great Glass Elevator

All children should have a safe and creative space to play – to develop the heart, mind, body and spirit.  Sweet Flicker, there would have been lots of play in our home. This I guarantee.

Sadly many children are not given the chance to play because they live in neighborhoods with no access to safe play places.  In fact, many communities that have a very high density of children are lacking any form of basic playground.  An organization called KaBoom! is trying to change that by building awesome, innovative playgrounds in these so-called “play deserts.” They want to make sure there is a place to play within walking distance of every child in America.  Wouldn’t that be amazing?

It would give us great pleasure if more kids got the chance to simply be kids – to play – because of you, sweet Flicker.  Hopefully this will make you smile, too.

Learn more about KaBoom! here.  Click here to donate to KaBoom! in memory of sweet Flicker.