Patience to Endure

Tag: Grief Journey

  • A Whisper from Heaven

    A Whisper from Heaven

    Sweet boy, I drove one our favorite routes today.

    The road has taken some damage over the years. So have I. The view, however, was ever the same.

    Grandma and Aunt Dolly went to see a friend from church play at the Batesville Market. It isn’t the kind of place we would have taken you. The building is old and not accessible. I had to carry Aunt Dolly’s walker up a few stairs and then help guide her as she climbed.

    It felt good to care for someone, even slightly, the way I did for you.

    After leaving them settled, I went straight instead of turning around to get home. You loved our drives—especially that stretch of road. We would listen to music and on nights like this we would have rolled down the windows. I can still see you—mouth open smile and eyes squinting—as the wind hit your face. You would shake your head, flap your arms, and bounce with delight.

    The road is long and winding with majestic mountain views. There are historic homes, gigantic mansions, and farmland with cows and horses. It is quintessential Virginia.

    I sobbed.

    Please God, give me something, anything.

    Relieve this pain even a little.

    Give me peace. Let me know You are here and I am not alone. A sign.

    Anything?

    He was the best part of me, my whole world, and you took Him. Why? Why would you do that to me?

    I am here. Your daughter. Your child is alone and hurt and scared. Won’t you do anything at all to help me?

    Please God. Please.

    Sometimes He calms the storm. 
    Sometimes He calms the child.

    Sometimes He does nothing.

    Or so it feels.

    Grief has revealed a depth of my soul I never knew existed—where tears and agony are abundant. Or perhaps she found the now empty place where you once were and settled right in.

    When God took you back, sweet boy, your heart became infected with bacteria. It spread everywhere.

    When God made me stay, my heart became infected with Grief. She invades everything.

    At the end of the drive, I dried my tears and ended my lamentation with:

    I am holding on to You anyway.

    I was surprised Grandma and Aunt Dolly wanted to stay the entire time. It tickled my heart to envision two ladies in their eighties hanging out listening to jazz on a Friday night.

    When I left a couple of hours later to pick up them up, I stood at the car and looked up at the beautiful spring sky. This time of year, every part of creation announces the new season—even the stars.

    Okay, God. I am asking again for a sign. Would You show me a shooting star? At least let me know I am not alone.

    Sweet boy, wouldn’t you know one appeared as soon as I finished asking?

    It wasn’t particularly spectacular in brightness or length—just a whisper and had I not been looking at that exact spot in the sky I might have missed it.

    The feeling might not last, but it came and that matters.

    It is a lifeline I can grab when the abyss comes—and it assuredly does.

    I miss you, sweet boy, more than I ever knew a heart could.

    At this point, living captive by Grief for eight weeks, I will take promises yet to be.

    For the first time I thought—

    just maybe,

    I am going to be all right.

  • The Direct Line

    The Direct Line

    Sweet boy, last night I went to check on Grandma as she was in the garage, re-organizing. She has always loved projects but since you left, they are her lifeline. For her, Grief is temporarily hidden by keeping busy. There isn’t enough busyness in the world, though, for Grief to remain quiet.

    Every morning I sit on the couch waiting for the morning sun. I have been hunting for even the smallest enjoyment. It can feel like a drop of water for a ravenously thirsty soul. Over time and with intention, I pray, those drops just might add up to a glass of water.

    Grandma sat down on the edge of the coffee table. Her tiny body held enormous grief as her eyes welled up. She told me every morning she wakes up in a panic because she feels one of you boys missing. At eighty years old, her brain takes a few minutes to process exactly what that feeling is and who she cannot find.

    You are gone.

    In those few seconds while she tries to become oriented and discover who is missing, you are still here—until reality crashes down, and trying to subdue Grief becomes unsustainable.

    When I looked in on her in the garage last night I said, “Are you ok?” in the exact tone of silliness I used to say to you.

    Are you okay, Wesley. You ok?

    You would laugh so hard.

    Here in the after, without you, there is no place for our silliness to go. I grab little glimpses when it slips out—like a single hiccup I didn’t expect that startles me.

    When you were here, sweet boy, our home was filled with silliness in equal measure and importance to the very air. Our favorite sound was your laughter, and we did anything to hear it. You would laugh so hard and turn blue. I would have to remind you to breathe.

    Do you remember when we lived in the ICU for one month? It was the day before your open-heart surgery and Steve had you laughing so hard your oxygen dropped to below 88. The nurse came running into your room, worried you might be in distress. She was relieved to find you laughing. Steve could always go toe to toe with you in unadulterated silliness.

    You were so sick, sweet boy, but even that couldn’t stop your laugh.

    If I could have just a pinch of your resilience here in the after.

    My heart is sick in a different way than yours was.

    I wish desperately I could feel silly and laugh with you again.

    Someday, after my last tomorrow, I will.

    The house is horribly quiet.

    Seriousness weighs heavily in the air where laughter once floated.

    I dreamed last night the whole family was at the beach and the roof was on fire. The fire resolved on its own but took the entire roof. We were unprotected. Rain was imminent. We couldn’t find the paper with the phone number for the people who could help. Everyone was scrambling but it was not found.

    Like the dream, I feel unsafe in the world but there is still beauty. Unlike the dream, I don’t need a piece of paper to know Who to call for help. I know it by heart.

    When you were “actively dying” in the hospital the doctor asked if we wanted a chaplain to come. I declined, saying

    I have a direct line.

    Over our twenty-four years together, sweet boy, I called on God more times than I can count. Three times I simply asked Him:

    Please, God, give me whatever I need for the next part of the journey.

    It was the prayer of ultimate surrender from a desperate mother. Only the miracle of healing would keep you here with me, and I did not believe it was coming. There are always miracles, sweet boy, but sometimes they come by God’s definition—morning sun or Grandma’s smile or the new green of spring.

    God healed you anyway and you came home from the hospital. Though I am grateful, how I wish He had done it once more.

    I didn’t need whatever it was I thought He could give to help the unimaginable. Until now.

    And I had it all along.

    A direct line.

    I cannot escape Grief even in my sleep. She is the most relentless, unforgiving encounter of my life. Here in the after, there are times she is too loud and distorts my end of the direct line. Other times it is my own anger that makes it hard to hear.

    Yet I know I can’t disconnect from the very God who is 

    my rock
    my refuge
    my strong tower
    my peace
    my portion
    my provider
    my strength
    my only way through this..

    So I call. In the questioning, I call. In the anger, I call. In the depths of suffering, I call. For the next breath, I call. In brief flickers of peace, I call. In gratitude, I call. When I don't know what to say, I call.
    When all I can do is scream, I call.

    Even if I hear nothing in response, I call.

    On the other side of my call, beyond what I can hear, I know you are laughing.

    I will laugh again, sweet boy, if for no other reason than to honor you. We are laughing on different sides of eternity. Laughing was your favorite. I can only imagine it still is.

    I will find new ways to be silly.

    But for today, seven and a half weeks in the after, I have to remind myself to breathe. Each recovered breath feels like rehabilitation—picking up my direct line is an act of rebellion.

    Each time I do I move gradually—never linearly—toward the unappointed day when laughter and silliness are not mere memories.

    Grief will not have the final say.

  • The Box That Can’t Be Unchecked

    The Box That Can’t Be Unchecked

    We took our first family trip without you, sweet boy. Baby had Spring Break so we went to New York City to visit your oldest brother, Emerson. It was so quiet in the car. I kept looking in the rearview mirror, but you weren’t there.

    My heart saw you signing “trip” and “time” and “work” (the YORK in NYC sounded to you like “work”). My mind perfectly pictured you dancing with your unique groove of thumbs up, head tilting from side to side as you swayed with the most gigantic, beautiful grin. The signature Wesley move.  You loved a good road trip but would often get impatient. For you, the joy was definitely in the destination and not the journey. Sweet Boy, the absence of all that was you filled the now empty space where your wheelchair once sat.

    We stopped at a market off I -81 for lunch. At one point I couldn’t find Baby and went into complete panic mode, briskly walking through the entire place and even checking outside. Steve tried to calm me down reminding me Nathan is 6 foot 3 and no one could just take him. My mind is so warped from the loss of you I thought to myself someone with a gun could take him. It made no sense but neither does the world.

    I found him coming out of the bathroom and threw my arms around him, crying. The world is so unsafe to me right now. That is what happens when the invisible box in our mind gets checked.

    People tend to imagine worst case scenario which never really actually happens. Until it does. The very worst thing imaginable that could ever happen in my life did, sweet boy.

    You died.

    Once that imaginary box gets checked with permanent ink, there is a seismic shift. In that shift the architecture of all you held as absolute – everything you believed unimaginable – implodes. In the rubble knowing when to be afraid and when not to is lost. Nothing feels safe and there is nowhere to hide.

    Nowhere.

    In the nightmare that transposed reality, lessons shifted from imaginary and hypothetical. What I held as sacred was taken – cruelly, harshly, and without warning – leaving me empty hearted, broken, and confused. I am unshielded. Who is to say it will not happen again?

    I hold to the one truly sacred thing I have that cannot be taken – my faith. That is mine alone to relinquish, and though at times I wrestle, I will not relent.

    These firsts are difficult. I put on a brave face so our family can still enjoy the trip. When we got to the hotel, I went to the bathroom and sobbed. My Sweet Boy, I cry a lot in bathrooms these days.

    We went out for dinner and my eyes teared up at the sight of Emerson sitting next to Nathan.

    I have two boys left.

    I felt gratitude and longing. Sorrow and joy. Such discordance is exhausting to my soul. Right now they are equal parts. I suppose they will coexist always but somehow, over time, become imbalanced. Prayerfully, it will not always be striking like a slap in the face but become a gentle tap on the shoulder.

    Your absence at every family gathering will be there. I do not want that to change because you, sweet boy, deserve that perpetual place.

    I learned to drive in NYC because of you, Sweet Boy. I used to be terrified of it but there are so few cabs and Ubers that can take a wheelchair. Not all subway stations have elevators. The only way you could fully enjoy the city was if I drove us around. You made me so brave. I am trying now to be brave without you, but it is infinitely more difficult.

    We did not go to Times Square. Honestly, the main reason we ever went was because it was your favorite part of NYC. It always bewildered me how you, with your sensory processing issues, would sit in Times Square exhilarated soaking in all the chaos had to offer.

    This time walking around without pushing you in your chair was unnatural. There were stores and restaurants we were able to go to this time that I hadn’t been to in years. You know, Sweet Boy, how inaccessible New York can be. It was strange to be able to enjoy something because you weren’t here.

    What is a person to do with that?

    Every time I go to the city I feel compelled to go visit Washington Square Park. Some of my fondest memories of a time when life was not so cruel took place there. Your brothers, Steve, and I sat in the empty fountain in the center. I told Nathan the story of when NYU was so small the entire university’s graduation took place there. The art students all jumped in the water of the then running fountain. Though security guards were placed around, the dean of Tisch walked through quietly saying “fountain” over and over encouraging us to defy authority and jump in. It was a tradition, after all. I showed them the place that used to be a cafe where I sat at the table next to Matthew Broderick. We walked past the movie theater where I spent my first night of college watching old Bugs Bunny movies.

    We reminisced about Emerson’s audition at NYU and how he walked out to me standing there with giant cones of cookie dough in each hand to celebrate. It didn’t matter to me when I was standing in the long line to get them if he did well or not. He tried and that was worth a celebration.

    In the late afternoon we went to Emerson’s fourth floor walkup in Brooklyn. It was another new memory that would not have been possible until the after. Steve made dinner for all of us. Your brothers sat on the couch and opened Pokemon cards. Baby slept over at Em’s apartment and said it was his favorite part of the trip. I love that out of everything we did in NYC, it was the time he spent with his brother that mattered the most.

    I have exceptional young men.

    Three of them.

    It made my heart so happy they have each other still. Your sign for Emerson was an “E” on your heart. For Nathan it remained “Baby” because that is what I told you when I first brought him home.

    “Look, here is our baby.” It stuck and we did nothing to unstick it. For that, I am grateful.

    I desperately needed the reprieve from Grief. She was kind today and walked behind me allowing me to enjoy the sun, the memories, and time with your brothers and Steve. She only nudged me a couple times, until I laid in bed. Then she hopped right into bed with me and stole the covers.

  • The Reason

    The Reason

    After Nathan goes to school I sit in the living room and wait for the morning sun. She begins quietly, warmly, subtly. Over a span of just minutes she presents herself, glorious and strong. The dusty windows do not deter her. She comes anyway.

    Last night Leane, Morgan, Chris, Audrey, and Baby Chloe came for dinner. It is our new tradition for Thursdays. A room full of people who loved you beyond words. We shared stories and videos. Baby Chloe came running through the house screaming with excitement. It awakened my deaf ears to hear and, for a moment, my soul was elated and relieved for the noise again.

    I told them how after your death I researched your exact deletion. I don’t suppose I did while you were alive because I didn’t want to be scared.

    1q21.3 – 22

    The notable genes you were missing have much to do with immune signaling, cell signaling, growth regulation, immune cell function, and gene regulation for brain development. The impactful part of late was your immune cells did not activate as strongly as they would have with a complete chromosome. You had a weaker and dysregulated early response to infections. More than likely, your immune system was delayed in recognizing the infection and allowed it to spready easily. The deletion could also have made your system over react and inflammation severe. The list goes on.

    I avoided knowing the details because I know I would have altered your life out of fear. We wouldn’t have gone to all your favorite stores or the beach or the prom. We would have never visited New York City or Disney World or mall tours. I would have forced you into a fear bubble even though ultimately it would not have changed this outcome. The bacteria that killed you came from inside your own body and I would have spent your entire life afraid of the bacteria outside of it.

    Looking back now though things make much mores sense. You had so many colds that turned to pneumonia. There were random fevers and too many hospitalizations to remember. When you were eighteen months old I heard a doctor say for the first time, “We don’t know what is wrong. If you pray, I would.” It wasn’t the last I heard those words either. You were medically fragile but it was so easy to forget because you were the toughest person I knew.

    Our family at the dinner table was assembled by you and stitched together from your love. We smiled last night thinking how we gave you the very best life possible. We dedicated our lives to you and tried so hard to make your time rich. You were rich in love and in experience and in joy – the only riches that matter. Every person at that dinner table loved you deeply. We dedicated all our energy during our precious time with you to make you comfortable, healthy, laugh, fed, entertained, happy, and so very loved. Sweet boy, I know no one else who could say they had that life. You did. You deserved it.

    Though we feel content and peace we did give you the very best life possible know this – YOU gave US the very best life possible. We were blessed to know your love. There were no strings, no conditions, no expectations. Just love in its purest form. It is the love God wants us to give one another yet we never seem to achieve. You did, sweet boy. You did it without even trying.

    I am steady today. People ask if I am okay and the answer for the last three weeks is always “no.” I judge my days based on the steadiness I feel in the world. It isn’t so much about me being able to keep myself steady. It is about how severely the crashes are causing my imbalance. Yesterday I felt like I was in the middle of the ocean in a severe storm with no flotation device. Waves were out of control, forceful, gigantic. I couldn’t get my head above water long enough for a good breath. My energy was dissipating. I was drowning and the waves of grief were relentless. They were powerful and without mercy.

    Then the grief gut punches that stop my heart and take my breath. You are gone.

    All Blessings Flow came from the donation center to pick up your bed yesterday. I tried to help but ended up on the couch sobbing. You loved that bed. I can still see your smile erupt to laughter as you pointed your finger up as the bed raised. We received it when you got sick 3 and a half years ago. You weren’t supposed to make it then and were an absolute miracle. You didn’t make it now and you are an absolute miracle.

    Our definition of miracle is not the same as God’s. He was generous to give me the miracle I wanted so many times over your life. How I wish He did one more time but I am not angry with Him. I can’t face this without Him.

    I hold to the promise:

    Now is your time of grief, but I will see you again and rejoice, and no one will take away your joy. (John 16:22)