Matter of Heart

7 Year Heart-iversary

Thursday, January 29, 2015

DSC_0164 That day.

It was the hardest thing Ive ever had to do, handing you over to the anesthesiologist for your heart surgery. Watching them walk down the long corridor wheeling you away from me. I can still hear the echo of the steps of the team of doctors in that stark, white hallway…..leaving me to wonder if I’d ever have you breathing in my arms again.  There is an emotional pain that pierces so deeply that there are physical symptoms.  I don’t know if I could have stood on my own feet without your daddy there to support me.

I wanted to sit alone in the dim silence of the waiting room.  I felt out of it.  Like I was living in a bad dream I couldn’t wake myself from.  But daddy knew I needed to escape the walls of the hospital that were closing in on us.  We tried to stomach breakfast.  Hominy Grill in Charleston.  I picked at grits but couldn’t stomach anything.  We wandered aimlessly through Target.  Daddy bought you a little teddy-bear.  Something that could stay with you at nights when we had to leave you alone at the hospital.

We drove together, your daddy and I, hands clasped so tightly.  Tears.  Silence.  Exhaling prayers with every breath.  I carried your little hat in my coat pocket all day.  It smelled like you.  It was my “security blanket” to hold onto when my hands ached to hold you.

Every couple hours, our pager would go off….an update from the physicians assistant.  We knew dozens and dozens of people praying and we felt the support of so many carrying us through the endless hours.  The wait, knowing you were on bypass was excruciating.  Would Dr. Bradley be able to repair your tiny strawberry-sized heart and reattach angel-hair arteries?  Would your weary heart function after a repair requiring it to do what it wasn’t designed for?  Would your little warring heart have the strength to beat again?  Would we have the strength for what was ahead…..whatever that was?

We were siting on the pier in huge swings overlooking a beautiful expanse of water when the page came through we’d been waiting for.  “We’re closing her up…..she should be finished in an hour”  Thank you Jesus!!  We rushed back to the hospital and waited in the PCICU waiting room watching the seconds tick by on the clock.  A nurse came and called us into a consultation room.  When Dr. Bradley walked into the room, my heart sank.  His eyes were completely bloodshot and I had this wave of nausea sweet over me – certain that something had gone wrong.  Only later did I realize that the tremendous strain I saw in his eyes was only that of a man who had spent 8 hours in tedious work.  A man of few words, he offered gentle assurance that everything had gone well.

The nurse took time preparing us for what we would see when we finally got to go back with you.  She explained about the effects of trauma and that you’d be puffy and heavily sedated for a good while longer.  She detailed what all the lines and wires were for and told us not to be alarmed by the drainage tubes.  She told us they had been able to close your chest (which was a big praise, because for some babies, they have to wait to close the chest until the swelling goes down a couple days later).  She warned us it would be hard to see you….and it was…..but nothing has ever been more beautiful than seeing you my dear……alive and fighting!  We struggled to find even an inch of your body that didnt have probes or attachments, just so we could touch you.

That day was awful…..and beautiful at the same time.  We were far from in the clear, but our girl now had a chance for survival with a heart that was no longer broken.  Heart surgery was the first painful step in a very long road to being a healthy baby.

And so my child, we celebrate today.  We celebrate your “heart-iversary” with cake.

Because we like cake.

And because you’ve earned it!! Because we’ve been blessed with 84 months of miracles and memories.  Because you have been the bravest, strongest, most grace-infused child I’ve ever known.  Because we’ve had 2,567 beautiful sunrises that we’ve thanked God for your life.  Happy Heart-iversary my love!!  May you continue to grow in grace and beauty and knowledge of Gods hand so evident on your life.  May you bring glory to Him all of your days!

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photo credits to big sister Abi

 

Pain: The Gift That Few People Want

Sunday, January 25, 2015

 

Last night provided some quiet reflection as I prepared to meet this morning.  This day, January 25th, looms ahead on the calendar every January as a sort of milestone that needs to be passed.  A day I need to put behind me before I can breathe in a fresh new year.  Its a day of remembrance characterized by pain. So much pain!

Most of you know the significance of that day and the events of that evening that sent our life spiraling out of control. 

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And as I reflect on all the heartache, both physical and emotional, and can glance back 7 years later at all the redemption and good thats come of it, the nagging question still remains……why pain!?

What is pain?
Medical professionals identify pain as our brain signaling us that something needs attention.  A crippling or imobilizing reaction to an injury that prevents us from doing further harm by ignoring the problem.  Pain can debilitate us, but ultimately, its regarded as a protective measure.

Certainly pain comes in many forms.
Pain of the body.  Physical injury.  Illness.  Handicaps.  Disabilities.
Pain of the heart.  Seeing your child in rebellion.  The loss of a loved one.  Emotional devastation of a break-up.
Pain of the soul.  Unresolved resentment.  Antagonism toward God.  Spiritual misguidance.

So can the same be said of emotional and spiritual pain that is said of physical pain?  Could there be a protective redemptive power in pain, that God uses to shine a spotlight on the problem and allow us the opportunity to address it, in an effort to protect us from continuing in a way that will inflict more damage??  The pain of broken relationships can leave our heart susceptible to the overwhelming, unconditional love of God.  The pain of anxiety and fear shows us that the things which we put our faith in are shakable, and cause us to consider the claim of Christ to be sufficient for all our needs.  The searing pain of loss leads us to ponder the promise and hope of eternity.  Pain has the potential to turn our hearts toward healing in Him….or embitter us.

Why pain?
Pain heightens our senses.  Nerves send signals firing.  Blood rushes to the location of an injury.  Our body reacts in a complicated, intentional way to address a problem.
Ignoring those senses puts us at risk of further damage being done.

The incomprehensible answer to the question of why, seems to be that pain is for our good.  Its not a popular concept.  We want to embrace all the goodness of life and only the good.   But pain can be the key to unlock the deepest places that actually need healing!  Tho its rarely identifiable in the moment, many of us can look back and see that it is the times in life that we’ve experienced the greatest degree of pain, that we’ve sensed the love of God most acutely.

There may perhaps be no greater pain than being a parent and seeing your child suffer.
I vividly remember the sense of profoundly wishing that I could take the place of Evie in all that we watched her endure her first weeks in this heart journey.  Undoubtably, the physical pain would have been more bearable than the emotional trauma of helplessly watching her agonizing and struggling for survival.

I remember the seemingly barbaric tactics that were used to sustain her at times.
~ The stimulating after surgery, wound still raw, to try and get her “revved” up and fighting for her life.  Passivity would prove fatal, so they needed her to cry and cough up the debris from surgery in order to clear lungs.  They would insert suction tubes to pull out junk and jostle her around a bit to get her agitated.  Seeing a baby, intubated, vocal chords paralyzed, visibly “crying” but no sound coming out of their mouth can be nothing less than torturous for a parent!

~ The respiratory therapist would come round the clock whether Evie was awake or finally resting peacefully.  She’d lay Evie – chest over her cupped hand – and pound on her back for several minutes to help expel mucous and secretions in her lungs.  This is a couple days out from surgery.  Broken breast bone.  Stitches.  Infected wound site.

~Evie struggled to maintain a normal, sinus heart rhythm and several times, slipped into a dangerous tachychardia. Her heart rate skyrocketed past the 200’s.  We watched the nurses try an unconventional maneuver to try to “shock” her heart back into a healthy rhythm.  They immersed Evies face in ice water for a couple of seconds. (gasp!!!) Child kicking, flailing, smothering.  Oh the trauma!  But this is a means they’ve seen effective on many babies to trigger a healthy heartbeat and avoid the next step – stopping the heart with medication and restarting it.

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And as a mother, I stood by helplessly and watched. I couldn’t intervene. I couldn’t take her suffering.  In the simplest, most helpless form, I had to trust.  Had to trust that the doctors knew far better than I.  That the measures they were taking, were inflicting pain, but ultimately for her good.  And that to sabotage these painful procedures, I would be endangering and compromising her.

Would I trust God any less than I would trust these wonderful but nonetheless, human doctors who are capable of making mistakes?  Who am I to shake an angry finger at God when pain seems unbearable?  We want to short-circuit the pain.  The pain that God allows in our lives does not always come with a compassionate, step-by-step explanation of the “whys” as did the aforementioned procedures Evie was forced to endure.  (Trust me, had not our favorite nurse been holding my hand and explaining the method behind the madness in some of these, Id have surely intervened.)  But the pain that God allows in our life can be far less explainable and the temptation is to believe that pain is something to be avoided.  Because, we’re conditioned to believe that a loving God wouldn’t allow pain….right?  But, would a loving doctor forego a procedure to cut a 6 inch incision down a baby’s torso, sawing through her breastbone to repair her heart because he didnt want to cause her pain?  Would a loving doctor deny prescribing 15 oral medication doses a day because its unpalatable for a tiny baby?  Would a loving doctor dismiss wound care because scrubbing a gaping sore will surely cause irritation and discomfort? 
 In a rational dimension, we justify these barbaric techniques because we trust the doctor. We have answers. We feel they are justified. And yet, these are men who are fallible.
Can the loving Father-heart of God who sent His son to die for us and reconcile us to Him be trusted any less?

There will be some answers to pain that we’ll never understand on this side of eternity.   Some things just don’t make sense!  Pain shakes us.  It rattles us to our core.  It strips off all pretense and leaves us raw and bleeding and broken and real.  And in that vulnerable “realness” God begins to unveil the invisible cancers that are eating away at us because……He cares more about our wholeness and spiritual healing than our temporal, earthly comfort and preferences.  The compassionate heart of God allows us to experience our need for Him.  His motivation always, always to see us brought to completeness in Him. 
 He unmasks the malignancies that have hardened our hearts.  If we will allow pain to run its full course…..pressing into our Creator in a trust that won’t always come with answers, then and only then will we begin to glimpse the purpose in pain.  The redemptive purposes in this undesirable gift.  The severe mercy that stops at nothing to see our redemption and healing and reconciliation with God!  Jesus is described as a man of sorrows.  He knew pain

Need a little help!!!

Saturday, January 24, 2015

 

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A writing sample from her 1st grade “star student” week.

Ive asked for help on my personal Facebook page and wanted to put it out here to our sweet, supportive blog friends as well…..I need a little help with a project Im working on.  🙂

This coming week, we celebrate Evie’s 7 year “heart-iversary” and this momma has an idea.  A little visual for her.  A world map identifying all the places where people were praying for her along her heart journey.

So, if you remember…… maybe you were a recipient of this first email……or followed our blog early on her heart journey through the many tests and procedures…..or have come alongside us on this path……IF YOU HAVE PRAYED FOR OUR GIRL somewhere along the way, can I ask something of you?  Would you kindly leave a comment with your name, city, state and country?   Excited for Evie to have this little keepsake showing her the love and support that has been showered over her her whole life.

There is no greater joy than seeing this child living in a knowledge of Gods great care for her.

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circa 2012 (Evie coined this pose before Taylor made it cliché! 🙂

 

UPDATE!  TAKE A PEEK AT EVIE’S PRAYER MAP HERE:

Awed by all those who have loved and prayed for her!  THANK YOU!