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Many of my memories of Graham have a corresponding snippet of video or photo, but there are some that only exist in my mind.  These are the most precious because they are wholly mine and so very vulnerable.

I cherish the times when Charlotte and Graham played together.  She loved holding him and carrying him around.  She would squish and squash him, always kissing him and dragging him about.  Although she was almost always gentle and kind, we actually hollered at her quite a bit: “Put him down!  “Let him do it himself”  “Hands off!”  “Quit messing!”  He would fuss at her in exasperation sometimes, but truly, Charlotte’s hands-on playing seemed to bug us more than it ever did Graham.  He loved his sister tremendously.

For Christmas, Graham was gifted with a set of handmade wooden blocks and immediately began perfecting the skill of knocking down towers.  Both of his sisters took great pride in helping him craft his block toppling art.  They were so proud of him, cheering him on and encouraging this special little person to do such big things!

One evening before dinner, Charlie and Graham were playing with his blocks.  In his zeal, he wasn’t giving Charlotte sufficient time to build the tower up before he crashed things down.   Frustrated, she picked him up in a hug hold under the arms, his shirt bunching up to display his fat little belly as his legs dangled like a monkey, and awkwardly carried him across the room.   She deposited him behind the couch, and raced back to finish the tower.  Keep in mind, the sole purpose she was building in the first place was so her little buddy could knock it down with gusto!

To Charlotte’s surprise, Graham was no match for her, and crawled back so fast she barely got the chance to stack two blocks before he bulldozed through!  They both erupted in belly laughs and repeated the scene over and over.  Each time, Charlotte was convinced she would be fast enough, and each time Graham beat her back!  The moment finally ended with both of them completely incapacitated with laugher, rolling around on the carpet.

I love this memory because it demonstrates that they knew each other fully.  Charlotte didn’t just lose her baby brother, she lost Graham.  Raising children, I am humbled at the fullness of these little people.  How complex and layered a human life is from the very beginning.  I know Graham’s value is not contingent upon my memories of him – Graham is who he is regardless of the accuracy of my memories or how successfully I convey his truth to others…

Even so, I fear over time, Graham’s life with us will dwindle to few one-dimensional sound bites or images.  “The Engels had a little boy once…”

Daddy’s Goodbye (memorial Service)

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My father carries his father’s name, and I carry my father’s name, and in turn I gave my name to you.

Graham Evan W. Engel.  My Son, my friend, my heir: you will always be with me, you are not lost.  I cherish your memory, and I will for the rest of my life.   You will not be forgotten.

I was scared to have a son, but when you came it was so right and so easy.  I found joy in my son, and my fear melted away.  Graham, you were never mine, but His. The task to protect you and care for you, were the best gifts I’ve ever received.

I wasn’t always perfect, and I didn’t always do everything right, and yet you loved me.  I was supposed to teach you the gospel, but in turn you were the one who demonstrated it to me.

Graham Evan W. Engel, was born on March 8th 2013, at 11:51am. He weighed 7lbs 13oz and was 21 inches long. He fell asleep on February 11th, 2014 and never woke up…  And now he lives with Jesus. Which means a part of me is in Heaven too, and I cannot wait, for our reunion day.

Mommy’s Goodbye (Memorial Service)

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The first time we saw Graham he was a picture on an ultrasound screen. A boy! What in the world are we going to do with a boy baby?!? That’s when Charlie Jo piped up… “Let’s take him home and love him!” And so we did.

Graham fit right in. He joined our crazy with such simple sweetness. We brought him home soft and squirmy and long. He was such a long baby.

He was born with one birthmark and quickly developed two more.

His hair was blond, much to the joy of his father. But had become more and more strawberry blond lately. Much to the joy of his mother.

He spent the majority of his life cuddled in someone’s arms. There were so many people who snuggled and cuddled him, bounced and rocked, and soothed. He would reach up and stroke my face.  Pat my chest while he nursed. Finger my arm as I changed his diaper. His touching was a pronounced trait and one we savored.

His favorite toy for the longest time was a green crinkle monster. Although, lately he much preferred knocking over block towers and climbing stairs.

He refused to be spoon-fed regardless of what I offered and happily fed himself, carefully dropping the green veggies on the floor while simultaneously hollering for seconds on bread or noodles or meat.

Just a few nights ago, he sat side by side with his sisters at the kid table and ate an entire piece of pizza… one bite at a time. At one point he looked right at me, sat up straight and beamed.

His life was simple and short. But it was big and full.

When I first became a mother, I wanted my children to grow up happy. I often prayed for safety. A long life. A life without pain… But my prayers have been changing over the years. My journey in motherhood has been wrapped up in my journey with Christ… Loving Graham helped me to love Jesus more.

When Graham and I talked to Jesus in the dark nights as he nursed and snuggled, I asked God to give Graham a grand part to play in the Jesus story. I asked that Graham know joy and peace. That his burdens be light and his blessings big. I have been learning to give my children to God. I am learning to say, Graham is not mine, but yours. You love him more than me.

My time as Graham’s mother has been the most rich and stretching and meaningful time of my life. God has used his joy to minister to my soul and prepare our family for such a time as this.

Citylight – you have been everywhere. Our church’s story has been Graham’s story, has been our story. This was not my plan, but it was always His. Don’t get me wrong, God’s story is big and diverse and we are just a tiny piece really.  But Graham’s life is a reflection of God’s promises.

One of the reasons we put in so many hours working on this building in the early days was so we would have a home to come to one this day.

One of the reasons we met together in this basement and ate breakfasts, gathered in each other’s homes and forged relationship is for these moments right now.

One of the reasons that Chris and Gavin preached the gospel Sunday after Sunday was so Evan and I could meet Jesus like we never had before.  So today, when we find ourselves ripped open and heaving in the agony and loss we see that Jesus was here before us.

Death is not a part of life it is the opposite of life!  The beauty of this world is fractured and broken and dying.  We need a rescuer!  We need a savior!  And although I stand here heavy, I have already been rescued from this pain! I have already been healed! I am just waiting for the completion.  When we will stand side by side with Graham in the glory of Jesus forever and ever.

Graham’s life will always reflect God’s promises.

Memorial

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Evan and I chose to have Graham’s body cremated, settling on a small wooden urn to hold what was left behind.  We brought home the tiny box, and set it on a shelf by our bed.  It sits there even now, alongside an intimate picture of Graham nursing and his name spelled out in children’s stacking blocks.

It’s not ‘him’, anymore than the blanket he left behind is ‘him’, or his small dresser full of clothing is ‘him’. However, these things are the last bit of physical connection we get on this side of heaven, so we treasure them.

This lightweight urn is an effective reminder of Graham and we don’t want it buried alone somewhere, or surrounded by strangers… An 11 month old baby belongs with his mother and father, and although a box of ash is a poor substitute for our living child, keeping it close seems a poignant symbol.

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Despite our choice to keep his ashes, a public memorial site was important to us and to so many others that have loved Graham.  This weekend we added Graham’s name to a precious community of children at the Angel of Hope Memorial at Boys Town. Open to everyone, it’s a lovely place for tribute, reflection, and prayer.

His simple stone bears a version of a stanza from Longfellow’s Reaper and the Flowers.  May our quiet statement ring loud and clear:  This is a child so loved!  He lived with us once, and we remember him still, even as we hope for heaven.

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Many loving and kind people have extended their support to make this physical memory possible, and we are so very grateful.  We plan to continue creating memories in honor of Graham – focusing next on living gifts and blessings to help others.  It is our hope that this stone does not represent the end of his life but the beginning of a profound legacy.

Business as Usual

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A teacher greets us effusively as we enter the school building, but instead of waving goodbye and skipping away like every other morning, Charlotte turns her body into mine and begins to whimper.  Caught off guard, I gave her a quick half-hug and casually encourage her to join her friends.  Instead, my stoic girl digs in deeper and refuses any distraction or comfort.

Gripping my leg, Charlotte surveys the bustling classroom before her, but when I encourage her to jump in – embrace the familiar patterns playing out before her, silent tears began to roll down her face.  With a panicky impulse, I run through my options for recourse.  In the beginning, ordinary routines seemed to bring her security, perhaps even comfort.  Today, however, it seems clear that the ‘business as usual’ charade is an unsustainable endeavor.

I nervously resolve to let ‘normal’ go for today.  Sinking to the ground in front of her I whisper, “We don’t have to pretend everything is ok, honey.  We can do things differently today – we’ll do it together.”  I hug her again, this time taking care to breathe deeply and slowly as I hold her close.

Charlotte’s ‘special’ teacher quickly approaches us and I feel my daughter’s small frame relax just a little as I explain, “today is a difficult day.” Her teacher nods authentically and asks Charlotte if she would like to come sit with her for a little bit until she feels ready.  With palpable relief, Charlotte accepts her invitation and walks purposefully away from me.

I would like to say I embraced this experience wholeheartedly, but to be honest, I felt scared. I am trying to honor the sad fact that my daughter now carries grief within her, while being careful not to implicate Graham’s death when maybe she’s just being a normal 5 year old.  Perhaps she isn’t doing as well as I thought, or perhaps I am coddling when I should be pulling back.  Maybe she’s hurting, or maybe this isn’t her pain at all, but mine forced onto her…

I slowly exhale as I leave the school building.  I am, even in this moment, letting go of the fantasy that I can do this ‘right’.  When I lost Graham I lost my confidence too, my serenity and my discernment.  I feel terror every time I need to make a choice that involves my kids.  I couldn’t keep Graham alive, and if I could fail that tremendously… How can I be a good mother, ever again?

 

 

Today is Friday… but Sunday’s Coming!

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It turns out Easter was the perfect first holiday to ‘celebrate’ after our horrible loss. Unlike other holidays with countless traditions drenched in laughter and happiness, the joy of Easter only comes after a journey through Lent.

On Palm Sunday, when Jesus triumphantly entered the city of Jerusalem, his family and friends were full of hope and excitement!  The future looked clear, glory seemed near, and the shadows of premonition were given very little thought.  I recognize this bliss, for only a few months ago I was in the midst of my own Palm Sunday.  My fat, soft little boy squirmed on my lap while his sisters played in front of me.  I spent my days enjoying blessing after blessing, and though I now know that heartache was laying in wait, this season still shines beautiful.

But no matter how much I enjoy the first part of the story, in less than a week Jesus was anguishing alone under the burden of his impending death.  He was brutally murdered in front of his own mother.  Those who reveled in his majesty just days before, were left alone to wrestle with fear and pain.  Confusion and panic ruled, hope was dashed and resolve wavered.  All of creation became silent in the darkness, desperate in the magnitude.  The disciples lost their friend and savior but also their future and all understanding of truth and hope.  The whole of creation writhed in the agony of the circumstances.

I sat among friends during our church’s Good Friday service, and let the evening’s somber atmosphere wash over me.  My present sorrow highlighted the great cost of our rescue, and profound depth of our loss.  I cried silently amongst the sea of people – big, fat tears dripped from my face unrestrained.  I heaved and gulped and let the horror have its way.  Jesus had never felt so close – so human, and so triumphantly God.  I walked away from church that night full of validated exhaustion, full of reflection and a quiet, simple hope.

By the time Easter Sunday rolled around, I was worn out, but my anxiety had been quelled.  Accepting that I am still in Friday’s season, I never-the-less had the capacity to acknowledge Easter’s joy.  I found peace and calmness rather than angst and sadness.  It didn’t equal the elation and delight of fellow believers on that beautiful morning, but I rested easy, knowing that my personal Easter Sunday is coming! This just wasn’t my year…

Empty Egg

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Family friends gifted our girls with a surprise easter egg hunt this year.  One of the plastic eggs was strategically left empty as a reminder that Jesus left behind an empty tomb on resurrection Sunday.  In the quiet of Easter evening Charlotte mused, “Maybe we should have two empty eggs this year… one for Graham and one for Jesus.”

“Why’s that?” I probe gently.

“Because they’re both alive in heaven… and Graham’s not here to eat the candy anyway!”

I smile and Charlie Jo giggles.

Enough!

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I held Graham’s body for only a short time before the compelling need to gather my small family overwhelmed me.  As it was, Charlotte was sitting by herself just down the hall and Eleanor was still stranded at daycare.  I mustered a small amount of composure and made the first phone call.  “Graham is dead and I need you to pick up my girls,” I blurted to a friend.  I couldn’t explain, I couldn’t connect, I could barely feel a thing.  “Please, help me take care of my girls.”

I called home next, and my dad answered.  “Is mom with you?”  I stammered.  “No, she’ll be here soon.” he replied casually.  I paused and then uttered one single word before my voice cracked unnaturally, “Dad.”  In that one word, he knew.  He didn’t know what exactly, but he knew.  I quickly reported the state of horror around us and our desperate need for their presence.

With my parents on their way, I tucked Graham into Evan’s arms and ventured from our room for the first time.   I slowly made my way towards Charlotte who was coloring furiously at the small nurse’s station desk. I collected her into my lap and looked her in the eyes. “Charlotte, honey. Graham died.”  Bewilderment and betrayal flashed onto her face, and she instantly encircled me with her entire body and sobbed loudly into my neck.  After only a few heart wrenching minutes, she leaned away from me and let me wipe her tears, “I wanted to watch Graham grow up and be a daddy.” she stated quietly.

I explained that our friends would be picking her up and then they would all go and get Eleanor.  She could eat McDonald’s for dinner, and Manna and Pop were on their way – we would be together soon.

My last words to her before she walked away were simple, “Graham’s with Jesus so he’s ok.  And Jesus is with us so we’re ok.”  I looked into her eyes with as much peace and sincerity as I could summon, and she nodded her understanding.  In that moment, our hope in Jesus was uncomplicated and true.

The truth that was then so straightforward, now seems complex and almost unattainable. My peace and confidence gives way to confusion and anger.  Graham gets Jesus and perfection.  I get Jesus and heartache. Jesus fixes everything.. yet everything remains broken.  I just…

I don’t want to be where I am!  Today I pray the only prayer that makes any sense to me: “Come quickly Lord Jesus!  Enough of this… please!”

 

For Such is the Kingdom of Heaven

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Four years ago during this holiday season I was in the throes of perhaps the most difficult grief I had thus far experienced. I was at work and after a hurried trip to the bathroom I confided in my colleague and friend, “I think I’m miscarrying.”

Over the next several days, every trip to the bathroom was an ugly reminder of my deep emptiness and the inability to do anything about it.  Before each flush of the toilet, I would stare hopelessly into the thick red water and wonder if my tiny, tiny baby was down in there – hidden from my view, lost from me forever.

I grieved deeply but compared to my current bereavement the loss was simple and straight forward. God blessed me with a bubbly one year old, strong friendships, and a hopeful outlook…. and only a year later I was holding a squirmy newborn.  The painful loss faded away.

I don’t think of that baby often, although lately he’s been heavy on my heart. He’s Graham’s brother, you see (perhaps sister, but I always felt he was a boy). I suppose I knew he was in heaven from the beginning, although I never really grasped the magnitude of that truth. He wasn’t lost after all…for he’s with Graham even now. The power of this fact is profound and complex and it overwhelms me with wonderment.

I have been scouring the scriptures these days, looking for comfort that only truth can bring. Over and over, God undeniably authenticates the fullness of personhood while a baby is yet growing in the womb (or cooking, as we’ve come to refer to it in the Engel household). God also clearly explains that upon their death, the ‘innocents’ are ushered directly into God’s presence – rescued while they are yet unaware, loved even before they have a chance to respond.

If in my weakness, I can pull aside the veil of my selfish pain for just a moment, I glimpse the unfathomable blessing he has lavished on these two children of mine. Graham stands beside his brother in the glory of God!  He stands with untold billions that have the great fortune of living only briefly in the disappointment of this world.

Heaven is filled with our babies, adorned with our children – the very kingdom of heaven.  What beautiful hope!

Legacy

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Last Saturday was a very good day. I had the emotional stamina to host a birthday celebration for Eleanor.  An endeavor that was outside my capability less than a month before, as Charlotte’s birthday loomed. The festivities were straight forward and simple.  I didn’t commit to anything extensive or complicated, and I enlisted my family to help me wrangle all the children.

It was a sweet comfort to watch my daughters surrounded by their own community of small people.  I watched as little princesses and caped crusaders frolicked and socialized, while I munched on a hotdog and rested in my own comfortable community of friends and family.

Later in the day, as the girls napped upstairs, I helped my mom, dad and sister construct an elaborate outdoor play house for the girls.  We worked diligently for four hours in the heavy afternoon warmth.  Laughing and bickering, we sipped sodas and worked to make the quaint little house take shape.

Evening approached and my nap-weary girlies ventured downstairs to nibble on party food leftovers and explore their impressive new play set.  Exhausted, I rocked slowly on the porch swing, breathing deep and enjoying the low sun of twilight. I inventoried my grimy bare feet and scraped knuckle, noticing the sticky film of dust and sweat on the skin where my ‘Graham’ necklace rests.

I felt warm.  Comfortably, warm – physically and emotionally.  I felt satisfied… almost happy.

Acclimating to the world as it is today compared to how I wish it was, has been a tumultuous journey thus far. As time marches on, I am beginning to recognize elements of my new landscape that only months… days before were completely alien.  What was once horrific and ugly, admittedly remains ugly, but feels less shocking.

I love Graham no less, but the ache of separation has begun to dull a little. I would like him here, slung on my hip as I chase my girls around, but I am learning to accept that he just simply. isn’t. here. I guess this sufferance is what I’ve been working towards… it’s just, well… It doesn’t actually feel good to feel good.

l am realizing that the act of grieving Graham in some ways actually eased the loss of not having him with me. In the absence of him, at least I had the monster of grief – consuming, demanding, and sucking energy.  Acceptance, although healing, leaves me with a brand new emptiness.  Memories, however joyful, seem an inadequate substituiton for the dynamic presence of my sorrowing.

I am wondering if my grief could somehow be refurbished into his legacy?

 

 

“I’m not ready, but it’s time”

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The tall, handsome emergency room employee shifted his eyes downward and stumbled over his words, “I don’t know how to say this right… I know you can’t put a time limit on these things… but I need to tell you…. The coroner is here, and he wants to know how much longer — But please, don’t worry!!!”  He cleared his throat and continued, “He’s being a real pain-in-the-ass, but I will hold him off for you! Take as much time as you need.”  He clapped his hand on my shoulder abruptly – a gesture you might expect from one football player to another.

sensed he was inexperienced in conversations such as these.  Although his anxiety was palpable, he plowed through his uncomfortableness – demonstrating unparalleled integrity and kindness

We took our time and never felt any pressure. I am certain that this small comfort was due entirely to the promise this young man made.

We snuggled our baby, took pictures, traced the outline of his nose and lips. Together we located every birthmark and every crease in his fat little hands. I counted toes, and fingered his soft silky hair. We sobbed and prayed and said goodbye. He was already gone of course, but this was as close to Graham as I could possibly be and I reveled in what I had. I embraced every excruciating detail of that time with him.

The door cracked open and the young man peeked his head in, “Can I get you anything?” He ventured.  The simple warmth in his words revealed his character and his very presence brought peace.

“We’re ready.” I answered. “Wait, no – I’m not ready… but it’s time.”

He stepped fully into the room as my mother, father, Evan and I encircled Graham’s perfect, beautiful body and sent a final prayer to heaven. When we emerged from our circle, I looked to see this man’s strong, capable frame quaking with silent sobs.

I walked toward him and asked quietly, “Can I give him to you?” He seemed genuinely surprised but entirely gracious, “Yes of course.” He mustered. He received my son with the nervous clumsiness of a man who had not held many babies, who not long ago was simply a kid himself.  He again clapped his hand on my shoulder, awkwardly conveying powerful connection.

I tucked the blanket around Graham and kissed his sweet face with anguished fervor.  I looked into the eyes of the man who was himself a son, and I shouldered the heavy burden that MY son would never become like the healthy, admirable, adult who held him now.

I was so very grateful for this man’s strong arms, his genuine grief and his intense sincerity. He could have been perceived as weak due his inexperience and awkward in his vulnerability (no doubt, he felt these insecurities himself) but he was in fact mighty in spirit, courage, and grace. I felt a flood of peace as I walked away from my son, cradled in the arms of this beautiful man.

Isaiah 55: 8-11

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‘Daddy and Graham’ (Charlotte’s art)

“For my thoughts are not your thoughts,
neither are your ways my ways,”
declares the Lord.

“As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.

As the rain and the snow
come down from heaven,
and do not return to it
without watering the earth
and making it bud and flourish,
so that it yields seed for the sower and bread for the eater,

so is my word that goes out from my mouth:
It will not return to me empty,
but will accomplish what I desire
and achieve the purpose for which I sent it.”

Fortified

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I was sitting in my office with the i-pad on the desk beside me.  The sound was inadvertently turned off, but I happened to look over and visually see I was receiving a call from Evan.

“Graham stopped breathing.” He stated abruptly.  “What?!?!” I screeched, already reaching for my jacket.  “They’re doing CPR.” He explained.  “What?!?!” I yelled again.  I grabbed my purse and managed to mumble an explanation to my tech as I passed her on the way out the door.

Although I was terrified, I knew with certainty Jesus was with me.  A wise man once explained, that in the midst of tragedy you won’t be able to think straight or reason sanely, so you revert to whatever training you’ve invested in. I reached out on that long, long car ride and found the one who had invested tirelessly into ME.

As I delighted in the joy of mothering my son, God was undeniably pressing into me with urgent intensity, ferociously fortifying my weaknesses.  I longed to surrender completely, but the act of fully trusting remained difficult. 

Graham’s days were numbered whether I relented my grip on him or not, but nevertheless, God continued to guide me toward surrender – diligently sanctifying my tender heart.  There is no doubt in my mind of his far-reaching mercy, for though I was unaware of what the future held – He knew exactly what I needed.

On the afternoon of January 5th, due to a variety of well-timed ‘God events’ I sat across from Evan and poured out my heart in short, painful bursts, “God wants me to give him everything, and everything for me, is my children.”  Humbled and exhausted, I finally lay my kids completely before the Lord.  I stopped trying to limit God’s glory and instead began my journey of resting in his trustworthy character.  I didn’t give God permission to take Graham away.  I relinquished, instead, myself – that God would have the rightful place in my heart. 

I spent the next month praying fervently for blessings but preparing for pain.  So on that grey, snowy afternoon as I sped to find my baby, I screamed out desperately, “Please, God, please!” but never once doubted his faithfulness.  In that moment I thought this meant Graham’s life would be spared.  Now, of course, I understand with painful clarity that his truth remains true regardless of my circumstances.  

There is no question that the skeleton of my journey is strong (due entirely to God’s graciousness), but my grief is tirelessly weak.  The truths that were comforting in my shock now swirl just beyond reach and offer less solace.  I have peace and hope, yes, but happiness still eludes me, and I fear it always will.

 

Long QT Syndrome

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I have been pouring myself into a search for answers, fully aware that grief is a messy process and sometimes just ‘is what it is’.  I didn’t know what I was looking for exactly, but I felt compelled to keep looking none the less.  I am constantly reminding myself that this is simply a way of moving through my grief journey – I never expected to find an answer.  I never expected to find a ‘next step’.   That being said, I have apparently uncovered some surprising revelations.

About 90% of SIDS/SUID deaths occur between 2-4 months of age, and only 0.5% occur between 11-12 months of age.  Working under the assumption that the circumstances of Graham’s death were more closely associated with those of an unexplained CHILD death rather than an infant death syndrome, I discovered a condition known as Long QT Syndrome.  This is a rare cardiac anomaly that affects the electrical system of the heart, sometimes resulting in sudden death.

It has been proposed that around 15% of all SIDS deaths are due to a cardiac cause (with Long QT syndrome being the most common).   Interestingly, that percentage increases to 25% for babies that die between 6-8 months of age.  The percentage increases to 50% when looking at all unexplained sudden deaths in general.

Long QT syndrome has been shown to be a far greater risk factor to a SIDS/SUID death than established risk factors like stomach sleeping or smoke exposure, but no one focuses on it much in relation to SIDS prevention due to the low prevalence in the 2-4 month age group (15%).  Considering the circumstances of Graham’s life and death, it certainly seems to make more sense than the ‘sleeping with a blankie’ association referenced on his death certificate.  A lot better sense! As in, it actually makes sense!

Although there are multiple genetic markers that can serve to diagnosis Long QT syndrome, family history and a careful interpretation of an ECG are also important pieces.  Although I would love a definitive cause of death for Graham (and now have renewed hope that we may be actually be able to achieve it), I feel very satisfied with the information I have thus far uncovered.

The next step in fact, is not to diagnosis Graham, but to screen his immediate family.  Due to the increased likelihood of his dying from an underlying cardiac cause, his sisters are at increased risk of caring the same genetic material.  Evan or I may well have given Graham the very mutation that numbered his days…  We have a 12 lead ECG reading scheduled for all four us, and have procured a skilled pediatric cardiologist committed to interpreting the tests in light of our specific concerns and family history.

So it seems we still have more questions than answers, but the act of ‘doing’ is a healing one, and enough for today!

http://cardiovascres.oxfordjournals.org/content/67/3/388.full.pdf

https://www.youtube.com/watch?v=EnTsnfoJoNU

http://www.transgenomic.com/labs/cardiology/familion/lqts

 

I Wasn’t There

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He woke up in the wee morning hours, just like he usually did.  His hollering woke Evan, who stumbled to his room, lifted him out of his crib and snuggled him into his warm, strong frame.  The two of them lay in Graham’s bed, asleep in each others arms until the morning came.

When the sun began to rise, Evan dropped off my little boy who snuggled and nursed, while the rest of the family busied themselves with morning tasks. When we couldn’t spare another lazy minute, I passed him back to Evan who changed and dressed him while I finished readying the girls and quickly got myself dressed as well.

Evan buckled car seats, I grabbed bags and silently smiled when I noticed that Graham was wearing the same sleeper from the day before.  It was still clean… pretty much.

I am so very glad that this particular morning was memorable and easy.  His caregiver reached for him when we arrived at her house and he leaned towards her.  Once in her arms, he looked back at me and grinned before snuggling his head into her neck.  She turned swiftly and they walked away together.  Just like every other morning, just like any other day.

I wasn’t there – when he took his last breath, when his heart became still.  I wasn’t there.  I’m not sure what I was doing exactly, but I wasn’t with my son.  I didn’t discover him ‘blue but warm’. I didn’t try to wake him up. I didn’t call the ambulance.  I didn’t do CPR.  I wasn’t there.

I should have been there – it’s part of what I signed up for.  No matter how difficult, how unfathomable, how horrific – his final moments were my responsibility.   Just as I bore testament to the joyful times in his life, I was commissioned also, to stand witness in the anguishing end.  I couldn’t have saved him if I had been there (although I haven’t yet fully embraced this truth), but I would have been where I belonged.  I would have shouldered the trauma as a sacred burden… Instead, someone else took on that burden as their own.

I am jealous but indebted to the woman who spent her days loving and caring for Graham.  The woman whose own heart was ripped open alongside all of ours. She didn’t make a calculated choice to give me some great charity, she was after all, thrown into those agonizing moments as a matter of obligation, but it was a gift none the less.  I hope and trust that the bliss of loving Graham and the excruciating pain of finding him dead and fighting to save his life – will somehow, someday fill her journey with blessing.

Where is my heaven?

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I feel like a broken record.  The analogy is so fitting – I am busted, annoying — useless and spinning.  I asked for prayer this morning at church and the pastor had to double-check what I needed help with.  I assumed it would be obvious, but then I second guessed myself – maybe I shouldn’t be as crushed as I am?  Maybe I hide it well?  Maybe it’s just because he’s a new pastor and is still finding his own bearings…  “It’s hard… my son…” I stammered.  “Ok,” he smiled encouragingly “anything else?”

Nope.  That’s pretty much it.

I suppose without context this story makes the pastor seem callous or at best, oblivious.  He was neither.  In actuality, he is kind, gracious, and simply doesn’t know me or my family very well yet.   He went on to intercede for me in prayer and bring my hurt before a big God.  Regardless, the situation highlighted my insecurity.

I’m caught in an underwater torrent and don’t know which way is up.  I am aching for my perfect, joyful world that was dashed away in an instant.  I know it’s already gone and was never truly perfect in the first place…  I know my hope resides in Christ alone and the perfect world I long for is ahead of me and not behind.  I just can’t shake the intoxicating dream, for I see heaven in the face of a little boy – grinning between giggles.  I don’t know how to turn away from what I had.  How do I move forward when I remain frozen in time and facing the opposite direction?

How do I live in a world that will never, ever be good enough, ever again?  How do I forgive myself for ever thinking that my version of beauty is better than God’s?  Graham is not the answer to my hurt!  It seems like he should be – it’s a Graham sized hole after all.   If I trick myself into thinking the only thing I need is Graham, then I’ve lost everything that really matters.  What I really want is Jesus!  What I really need is my savior, but all I can see is my little boy.

I was reminded today that I am held safe in the arms of a loving God whether or not I’m holding on to him.  It’s a good thing, because it’s difficult to cling to Jesus when I’m still desperately reaching for my son.

I Feel Confused

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An old college friend recently posted a picture of her son on Facebook.  It served as an announcement that her infant was critically ill and the family was reeling with stress and fear.

I gasped for breath and stared into the picture that scrolled in front of me.   Apart from the small difference in age and the absence of the emergency intraosseous catheter – I was looking at a picture of my own child on the day that he died.   Surrounded by hospital paraphernalia, the baby was ashen and his eyes were closed.  This picture is so familiar, It’s the one I see when I close my eyes at night.  In my dark lonely moments, I see Graham – lying dead, in a sea of tubes and cords.  It manipulates my peace and taints my joy.

As I suck for air and explore the picture in front of me, I try to remind myself – this is not your baby!  This baby isn’t dead!  He is alive!  And I want him to be alive… I’m thankful he is.  But…  he’s not alive.  Wait… I feel confused.  This baby has nothing to do with Graham, but everything I experience is through the veil of my loss.  And I’m so confused.

I wanted to comfort this mother, but I realize I have nothing to offer her.  I have become a living reminder that a mother’s worst nightmare can indeed happen.  She is already closer than she wants to be to this reality – my words, my presence, my prayers, even, are just further reminders that babies can die and parents can live on without them.  No one wants this to be true.  No one wants my life – no one want’s my help!!

I thought for one gut wrenching, humiliating moment… What if he dies – I could tease out some sort of meaning for myself if that happens.  I would know what to do then, I would have something to offer…  Oh. my. GOD.  I don’t know myself, I don’t like myself!  I don’t want him to die! Please God, don’t let him die!

I am so, so glad that her baby recovered and is now safe at home!  I am so, so grateful that he is alive!  Only he’s not alive, he isn’t here anymore… Wait.  I feel confused.

The Reaper and the Flowers

 

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There is a Reaper, whose name is Death,
And, with his sickle keen,
He reaps the bearded grain at a breath,
And the flowers that grow between.

“Shall I have naught that is fair?” Saith he;
“Having naught but the bearded grain?
Though the breath of these flowers is sweet to me,
I will give them all back again,”

He gazed at the flowers with tearful eye,
He kissed their drooping leaves;
It was for the Lord of Paradise
He bound them in his sheaves.

“My Lord has need of these floweretsgay,”
The Reaper said, and smiled:
“Dear tokens of the earth are they,
Where he was once a child.”

“They shall all bloom in fields of light,
Transplanted by my care,
And saints, upon their garments white,
These sacred blossoms wear.”

And the mother gave, in tears and pain,
The flowers she most did love:
She knew she should find them all again
In the fields of light above.

O, not in cruelty, not in wrath,
The Reaper came that day;
‘Twas an angel visited the green earth,
And took the flowers away.

Longfellow

Camping

 

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Charlie Jo came around the corner, with her little sister not far behind.  They were both extravagantly clothed in dress-up and princess garb, carrying suitcases and backpacks stuffed full of random toys and pretend equipment.  “We’re off to camping Mom!” Charlie hollered.  “Wait!” Eleanor screeched, “We forgot baby Sam!”  “You’re right, come on Sam, time to go camping.” sang Charlie.  And the ‘three’ of them began to scurry off.

“Wait,” I stammered. I steadied my voice and tried to mask my pain. “Is your cousin Sam going to camp with you?”   Of course, what I really wanted to say was, “Why aren’t you taking your brother? Why can’t Graham come?” Charlotte looked at me and paused for a moment.  She intuitively knew what I was fishing for and she answered me bluntly,  “Sam’s alive, Mom.” I nodded my understanding and blinked back hot tears.

You see, I’ve been using fantasy to escape truth.  I create stories in my mind where Graham is still here. I bring him along in my thoughts, I talk with him and daydream about his future.  I pretend February 11th never happened.  I remember what it felt like to be happy and full.  I can convince myself that Graham is the missing piece to my happiness, and in my fantasies I don’t have to be separated from him.

My daughters also spend a large part of their day in one imaginary story or another.  The difference is they pretend as a way of practicing what’s real – not escaping it.  Samuel was no more here on that day than Graham was, but Sam could have been here, and Graham never can be again.   It’s a subtle but powerful difference.

I considered joining my daughters in their play that day, but I couldn’t find a way of doing it without bringing Graham-Bo along.  And I couldn’t bring him when it was obvious that they needed to leave him behind.  I watched them play effortlessly, joy and laughter flowing freely and I doubted the healthiness of my version of pretend.  So I kept my mouth shut and I watched them play.