Sweet Flicker I know deep in my soul that it was your time to pass on from this Earth.  Your body had been fighting the good fight for so long, and I know you passed without any pain.  For what I now understand to be selfish reasons I wanted to carry you longer; to give you more time to grow; to meet you alive at birth.  But I now know those outcomes would have very likely led to your pain and suffering, which of course I would have never wanted.  All at once I feel both cheated and relieved. Cheated of the time I so desperately wanted; relieved about the time I was not granted.  That’s what hindsight allows, I suppose.

Likewise I sit here and write after taking an afternoon walk with your dad on this sunny day, praising His provision in keeping me safe during your delivery despite so many opportunities for things to go wrong.  Our walk was long – nearly three miles – which given I birthed you less than a week ago is nothing short of a miracle. It was nearly guaranteed that I was to have a complicated surgery.  I had no surgery.  It was assumed my labor would stretch for days. You came within a matter of hours.  I like to envision you and God sitting together watching over me during your birth, keeping me safe.

Your dad and I have a great many things for which to be thankful, but I will admit it’s hard to give thanks when our grief over you is still so raw.  I know we will get there, but this silence, sweet Flicker, is just haunting me in these early days of missing you.

The silence from the home heart monitor on Wednesday morning.

The silence between your dad and I as we drove to the doctor to confirm our fears.

The silence that followed the wailing as we collected your things from our home – blanket, lovie, much-too-large hat – and drove to the hospital for your birth.

The silence of your arrival when we ached for your cries.

The silence of our drive home on Thursday afternoon, an acute emptiness suffocating all words.

And now, the prolonged silence in our home in place of your noises – cries, coos, grunts, laughs – replaced instead by the heavy weight of your absence.

I know, sweet Flicker, that your dad and I will eventually adjust to this silence.  Lord willing, this silence will someday be filled with the sound of family. In the meantime, I can absolutely give thanks for these warm, sunny days, the shade of my front porch, and the sounds of the birds and wind that help break up all this silence.

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.

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.

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.

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.