Patience to Endure

Category: Faith

  • Box 17

    Box 17

    Seventeen has always been a significant number in the life of our family. We have had many births, deaths, and significant events involving the number. Your Grandpa went to Vietnam on a 17 and returned on a 17. My Grandpa died on a 17. Your dad was born on a 17 as was I and your sister. Emerson was supposed to be born on a 17 but he came early. When your Grandpa entered the hospital for the last time his room number was 4317. We took you to the hospital for the last time on a 17.

    I am not necessarily superstitious but that number follows me. It is not always good or bad, just significant.

    There are no words to express the heaviness of my heart when the funeral home handed me your death certificate. No parent should ever be given one. But there I was with Steve ever faithfully standing beside me. I put it in a folder and we came home.

    Because of the licensing with the state I had to send them a copy. As I pulled it off the scanner box 17 jumped out at me.

    I am exceedingly grateful for the person responsible for filling in box 17 because it is absolutely perfect.

    Usual or last occupation: Loving People

    You took your job seriously and were exemplary at it. Your salary is measured in a currency more valuable than anything on earth. It is eternal and immeasurable.

    When the world gets quiet the tears get loud. As I lay in bed last they came faithfully. Steve held me as I spoke about the intensity of your love for me and mine for you. How when we were apart each of us couldn’t wait to get back to the other. We were obsessed with each other. It kills me that I have to wait now to get back to you but my hope, my faith assures me I will.

    You were the absolute best at loving people. You did it intensely, easily, unconditionally. You loved with a reckless abandon and purity with no selfish motivation. You were my daily example of how God intends us to love one another and you, my sweet boy, did it with no strain. It is was just who you were.

    When a loved one dies there are platitudes used to make the grieving feel better. Some feel like a Band-Aid on a deep jugular gash but they do hold truth.

    The truth is your love didn’t die because you did. And you do live in the hearts of those blessed enough to have been in the radiance of it. They are different people and love more vibrantly because of what you deposited into them. The full measure we will never know as it ripples on and on and on.

    I am exerting what little energy I have to grieve in a healing way. When I become panicked because you died I take a deep breath and remind myself you lived. When my mind replays the hospital trauma I introduce these images into my mind. I am processing the grief but I am also determined to not get stuck here.

    Box seventeen is helping me do just that.

  • The Pile

    The Pile

    I am rendered incapacitated between yearning for the past and being afraid of the future. The world feels unsafe today. It is gut wrenching trying to figure out where I am and who I am without you.

    When you died, sweet boy, until this morning I thought the person I was because of you died too. I loved who I was because of you. I was fierce. I was silly. I was happy and devoted. I was strong. I was your voice and your advocate. I was kind. I could love sacrificially with ease and it was an honor.

    I am trying desperately to envision who I am or what I will do now that you are gone. As I watched the morning sun bid welcome I realized I already knew the answer to one of those questions. The person I was because of you didn’t die. She is here. The answer to the second question, what I will do, will be found. First I just stop need to crying.

    The untangling of intertwinement begins. My highest honor has and always will be being your mom and caretaker. I am still, always your mom. My role as caretaker, one of which I was extraordinarily proud, did die with you. I grieve you above all and the other smaller but significant loses that accompany including my role for twenty-four years, twenty-four hours a day, seven days a week caring for you. I don’t know how my days and years will be filled without you on so many levels.

    I sit in the space of realization and gratitude that who I am and was didn’t die because you did. All the lessons you taught me and the person who was shaped by loving you is here. It would dishonor you to believe the gifts you gave me went to eternity with you. God does leave some things behind. I will find them.

    I told you the other day Grandma is organizing my closet so we can put away your things I am not able to sort through just yet. All my clothes are in a huge pile in the middle of the room. She is organizing pants by length and sweatshirts and all the clothes I have accumulated over the years. It helps her to have a project and her tendency toward OCD is satisfied.

    In the gigantic pile are ripped, stained t-shirts and church clothes. There are items from the bin store where all the clothes were $2 mixed in with gala clothes bought in boutiques in Chicago. Unusable clothes are intertwined with those of value and sentiment. The process of sorting a mountain of items is tedious and slow moving but necessary. Some will be donated while others cut up to use as rags. Others will hang in the closet until fancier days.

    My soul sits in a huge pile in the foyer, the empty spot where you would spend hours each day. All the pieces of me lie dormant underneath an enormous weighted blanket of grief. Several times a day I cry out to God in His mercy to lighten the weight just enough so I can breathe. Some days He does. Some days He does not or perhaps the lifting is so subtle I cannot feel it. I don’t know why He lets this pain crush me but I never knew why He let me have someone as special as you to call my son. I trust Him. I trust the process. I trust I will have the patience to endure.

    The morning sun slowly and deliberately lights up the room faithfully just as Grandma diminishes the pile of clothes. The progression is reliable. Sweet boy, the weighted blanket of grief will abate. As my strength returns from the crushing I will sort through my soul pile. I will find her. I will find the woman who only saw the beautiful. I will find my silliness. I will find gratitude with no effort. I will find the joy I had which you taught me to be exuberant over the little things. I will rid the rags and pieces that can no longer fit.

    Perhaps I will find something I forgot was ever there. With joyful expectation I dare even hope something new will be discovered that was growing in the darkness under the weight all along. And just maybe that something will open up an unlimited future. It is an excruciating horror to think of a future without you but I didn’t get that choice.

    Right now, at this moment in my life, sweet boy, daring to hope in this despair is the bravest thing I can do.

  • The Wall

    The Wall

    I have heard grief described as waves in the ocean, elevators, rubberband balls, and roller coasters. It is all those things at once.

    Grief isn’t just an analogy. It is raw. It is ruthless. It is reckless. It is my temporary reality.

    Grief is crying seeing the walls where you made them dirty. I can see the marks where your fingers left streaks. We have never had clean walls. In fact, when I picked paint out for the house it was the kind that was easy to clean. You always wiped whatever was on your hands along the wall. Now it is an artistic masterpiece, and I never want to wash that wall again.

    Grief is crying because Steve brought home bundt cakes and I knew you would have loved this new flavor. They are lemon flavored with blackberry filling. I would have mashed it up and added pudding. You would have squealed with excitement and eaten every last bite. How you loved food. Life is now used to and would have.

    Grief is making your baby brother’s sandwich for lunch and forgetting to put the turkey, so the poor child ate a cheese and mayonnaise sandwich for lunch. It robs me of the ability to perform the simplest of tasks.

    Grief is being exhausted even though I had two cups of coffee and have done nothing exerting yet. It changes the definition of exerting and some days sitting up might as well be a marathon. It is sleeping at night only with the help of medication.

    Grief is searching the home for pieces of you still here, some evidence other than my memory.

    She always comes too soon and leaves much too late. She is rude.

    Grief is good at making me let go too though. Perhaps the carrying of it makes me drop other things I should not have carried so long anyway. Unforgiveness, resentment, petty differences are too burdensome. Grief monopolizes my ability to carry.

    There is an odd kindness to her. She would not be here had the love not existed. The love you created and received is proportional to her weight and as of now, it is too heavy to bear. But “they” promise me as I learn to carry it, the load changes. The indomitable truth is that your love, both given and received, will never lose weight. Even as grief fades, your love will always exist. Love wins.

    It’s not the load that breaks you down, it’s the way you carry it. (Lou Holtz)

    Sweet boy, I am hoping to learn to carry it. I will make you proud. But first, I have to remember to put turkey in your brother’s sandwich.

  • Books

    Books

    Grandma has been cleaning out my closet to make space for your things, sweet boy. I can’t bring myself to let anything of yours go other than your bed. I will sort through your toys and clothes once I am stronger.

    She found books in a dusty box. Titles like, “Even This”, “Just Enough Light for the Step I’m On”, “It’s Okay Not to Be Okay”, and “The Broken Way.”

    The books must have been in there stored away for almost fifteen years. I received them as gifts the first time my entire world collapsed and grief stole my soul for a little while. You were nine when your father committed suicide. On February 10, 2011 you and Emerson went to school not knowing everything would be different when you walked back through the door into a home shocked and cracked to the very foundation.

    While you were at school I found your father in the woods. Not even ten minutes had passed from the time I last saw him to the time I last saw him. I still don’t know why I ran into the woods that day, just my spirit knew I would find him there. The police put me in the ambulance I had initially called for your dad. I was going into shock. Grandpa knelt beside me.


    “Stay with me, focus on me,” he urged. “Look at me. Stay here.”

    At times he had to shout to get my attention. When I looked at Grandpa I had clarity and the full force of my grief was held at bay. As soon as my eyes diverted from him everything became chaotic and uncertain. The world was literally spinning. Gravity was failing. I was disconnecting from reality. Dissociation led me to the cusp of oblivion. If I only let go I could float to an unknown place. Anywhere would have been better than where I was. I somehow knew if I did though I might not know how to get back. As if an enormous vacuum was trying to suck my soul away my altered mind knew I had to try to stay. I was scared. I did not want to go there yet did not want to be in reality equally as strongly. What was transpiring was much too much for me to handle. My world was being ripped apart both figuratively and literally as I lay in the ambulance looking at my father’s loving, pleading eyes.


    “Stay here, the boys need you to stay here,” my father begged.

    That was it. One sentence changed everything. It was the exact switch that needed to be flipped and the fear and uncertainty vanquished. I knew I needed to stay. From the moment of conception I loved you more than my own self. When I was pregnant with you, I would care for myself. I would eat well and drink plenty of water. I quit smoking. I could not or would not do any of those things for just me but when my body became a vessel for you I did anything to ensure you would safely arrive into the world. I needed to do anything to ensure you would stay safe in our now rapidly changing world.


    I fought back with all my might against the lure of being in the other world where, I believed, I could be numb but where you would not be able to find me. You did not even yet know you lost a parent; I was determined you would not lose both.

    The following weeks after your dad died felt similar to where I sit now yet altogether different. Both losses were traumatic and unexpected. Both left me uncertain of what the future holds. Both were excruciating and piercing. Both resulted in a significant loss of my own identity. Both necessitated rebuilding from less than ashes. Both required more than I thought I had.

    And during both I praised God through it all.

    Burying a spouse has stark differences from burying a child. When your dad died and each moment before and after, every decision I ever made was always keeping in mind your wellbeing before all else. I was strong for you and for Emerson. Grandpa’s words, “your boys need you,” was enough to bring me back to reality and to fight just a little more.

    One month ago today you left. Each day I dig deep to empty reservoirs and find my “fight just a little more”. Grandpa is where you are and I don’t have his pleading eyes to remind me that your brothers still need me. And so, I keep my eyes on my Father especially during those moments I am not sure how to live this life without you. You were my whole world. I told you such every single night before I kissed you once more before sleep. My heart is happy I never once forgot to tell you and, more importantly, show you. And you knew.

    The full force of grief, however, is not held at bay. It is crushing. It is relentless. It is suffocating. But I am not alone in it.

    The books are back on the shelf. Grief settles in our home. She will be staying for a while as she did before. Sometimes she sits quietly next to me on the couch but I can still see her in the corner of my eye. I make no sudden moves. Other times she ambushes me and delivers blows consecutively until I am begging for mercy. She is the albatross that hangs around my neck as I walk through the day trying to be “normal.” I am certain she will accompany me for the rest of my days. From my time with her before I know she can become gentler and maybe even a little kinder. Someday, but not soon enough, perhaps just a nudge to remind me she is by my side still.

    Sweet boy, she will not rule me but for a while. I do not know how, I only know God will not let me languish here. I am crawling through the valley of the shadow. I have been here before. It isn’t the same but I see similarities enough to make it a less foreign land. The valley is longer, deeper, darker, and seemingly impossible but my God is still as strong and my dependency on Him even greater.

    He lifted me out of the pit of despair, out of the mud and the mire. He set my feet on solid ground and steadied me as I walked along. Psalm 40:2

    He has not lifted me yet but He has not left me. I will keep my arms raised knowing He can and He will.

    They say the deeper the love the deeper the grief. I would add the more treacherous the valley. It is a price I willingly pay one thousand times again to have loved you, my sweet boy. For it was and always shall be my highest honor.

  • In the Land

    In the Land

    In the land of tomorrows

    I cannot find you there

    Until my last one

    when we will finally hug once again.

    In the land of today

    my being cries out as

    I seek a glimpse

    in the illusive breeze,

    desperate to feel

    perhaps you are still somehow here.

    Finding only space and tears

    I seek your face,

    your smile,

    your laugh.

    My soul refuses to let go.

    Connection so intricately intertwined

    cannot easily be undone

    even by death.

    Enveloped by quietness and detested calm

    cohabitating with cacophony and chaos and uncontrollable ache

    as grief rages even after surrender

    In the land of yesterday

    is where I find you

    Memories palpitate…

    Your first heartbeat began in my womb

    Your last ended in my arms

    Oh the blessed moments in between!

    During sunny moments of my soul

    though few and fleeting

    I see you skipping on the other

    side of my last tomorrow.

    I see your face,

    your laugh,

    your smile

    Unencumbered and unrestrained

    Just as you were in our yesterdays.

    All that has changed is which side

    of eternity each resides

    It is a flat line, a last breath, a final heartbeat

    that separates me from you.

    It is a chasm, an inconceivability, an anguished reality

    that separates you from me.

    In the land of today I will hold tightly to our yesterday

    Time dare not steal one single expression or smile or embrace

    And I will see you again

    In the land of my last tomorrow

  • Hugs

    I picked up Nathan by myself yesterday. It was the first time I have since you left. Every day around ten a.m. you would start signing “Pick up baby” and you would get so mad when I told you it would be several hours more. Finally, at 2:50 pm Monday through Friday you would squeal with delight to get in the car to finally get him. We would listen to music on the way. Every time I had to go over those aggressive speed bumps at Nathan’s school I would say, “Ready bump?” and you would laugh as your chair bounced.

    Yesterday it was quieter. I listened to Christian music and prayed. I miss you every moment of every day and sometimes, even more. I still said, “ready bump” and perhaps I will until he graduates.

    I am trying to sit in my office a little more. Each time, though, I look at the couch and cry. I see where you sat with your legs crossed asking for coffee. It still doesn’t feel real sometimes and other times all too real. It is a cruelty I cannot escape.

    I thought it would be good to get a checkup and wanted to see if some medication might help me, so I had a doctor’s appointment today. We have known Dr. Campbell for over twenty years. He already knew you passed away. He was great friends with your dad and helped me then as he is helping me now.

    His nurse entered the room. “You’re here for depression?” she asked.

    “I am not sure. My son died,” I responded.

    Each time I say those three words the knife twists a little deeper. As if saying it makes it truer but the truth is absolute. I am not delusional. Still, saying those three words slays my soul a little more each and every time.

    “Can I hug you?” she asked.

    She gave me a hug and told me she has an eight-year-old son. I suspect he will be hugged a little tighter when she gets off work.

    Bruce came in shortly after and sat in the chair with sympathetic eyes.

    “Burying your child defies the natural order of things. You won’t get over this. But you will learn to live with it,” he said.

    Tears formed in my eyes. I knew that truth. There was no way around it. A loss as significant as you will necessarily change who I was and who I was going to be. It changes everything.

    “You buried a husband. And it was traumatic and shocking. I know this is different,” he said.

    “This is so much worse,” I cried.

    Nodding in agreement he patted my back. “You have to remember who you are,” he said gently, “You are a survivor.”

    I drove home sobbing once again. I was alone in the car and let out the most guttural desperate scream. It felt so good as if twenty-five days of nightmare dissonance released all at once.

    Grandma started clearing out your room. We are saving all your t-shirts hoping to have a quilt made. Many of your toys will be saved for baby Chloe. You were always so good at sharing with her except your wheelchair. That was off limits. We will tell her stories of “Uncle Wesley.” Your Santa still hangs on the door. She likes us to push the button to hear him sing. I don’t foresee Santa coming down despite the season.

    Boxing up your things is the hardest, most painful task we have ever had to do other than holding you at your last heartbeat. Your medical supplies remain in the bathroom. My heart just hasn’t been able to clear them though I know they will be donated through All Blessings Flow once I bring them. God works all things, even Tegaderm and catheters, for good.

    I still wake up every morning with my first thought being I don’t want to live in a world where you are not. But the last couple of days just after that thought I have asked God to show me the full measure of His mercy and His Grace. I have asked to know His Presence in powerful ways. I have asked God to fill my heart with warm memories and smiles of you. I know some day the memories will be accompanied with a few tears and more smiles. It will not be the deluge it is now. May it come soon, sweet boy. May it come oh so soon.

    They say grief is just love with no place to go. I disagree. It has some place to go. It does not dissipate. It still exists even though you, my sweet boy, are on the other side of eternity. My faith insists I can still actively love you. It victoriously claims death does not diminish love. The very foundation of my faith asserts love can reach eternity and back home again. So, sweet boy, I will love you as fiercely, boldly, and unconditionally as if you are sitting there in the foyer, furiously searching your iPad or asking for a hug or laughing at a silly noise. The love still has somewhere to go and I will continue to release it. Perhaps when the grief subsides enough to where I can function easier, the releasing will lead me to help others the way strong women I know have done before me.

    For now, sweet boy, I miss your hugs. My entire body physically craves one. I close my eyes and can feel them still. You would hug so tightly it made you shake – a whole soul hug.

    Spring is just around the corner. You would sit on the porch swing with your feet going back and forth. You would vigorously point to the empty spot next to you and ask me to sit and hold your iPad. After only a few minutes we would hug and bask in each other’s presence.

    I imagine where you are it is always spring. The weather is always perfect, flowers are always blooming, the green is young and the hugs endless. The only other one who could love you more than I, sweet boy, is our God. And I am quite sure He gives the best hugs.

    I am not sure I would label myself a survivor. I have survived terrible trauma. I have survived burying a husband and now a child. If I am a survivor, it is only because I have been strengthened. I have been sustained. And I have been saved.

    I can do all things through Christ who strengthens me. Philippians 4:13

  • And There She Is

    One month ago today, sweet boy, we took you to the Emergency Department. They thought you were stable. They thought you would go to a general medicine floor. But that was when the first domino was only teetering and had not yet fallen.

    For the last month I have cried out to God day and night. I have begged for mercy, for reprieve, for peace, for strength, for comfort, for the ability to just make it through the next minute.

    I have raised my hands in worship from the couch with tears streaming down my face. There were times it hurt to do so but in spite of where I am right now, He is worthy. His worthiness does not alter based on where I am. What alters is the intensity of my praise from the depths. It must be more.

    I love the Lord because He hears my voice and my prayer for mercy. Because He bends down to listen, I will pray, as long as I have breath (Psalm 116:1-2 NLT).

    The pain of losing you has been louder than anything else I can hear. At times, even louder than God. It isn’t He has not been speaking, I just couldn’t hear anything above the grief. So, He bent down to listen and to show me this:

    Do you remember a few months ago when my favorite plant fell? She branched off into two huge stems with majestic leaves, a centerpiece among my collection. One of her gigantic stems broke, roots and all. Part of the stem and the reddish part remained, the place where a leaf was just beginning to come. Not knowing if it would work, I put her in some dirt and stuck her in a corner. I watered her every couple of months uncertain of the possibility of even a fighting chance.

    Finally, this morning as I was turning on the lights I saw her. Hope in the color of green. She picked up where she left off before the breaking. She wasn’t dead. She was not quite dormant either. Under the surface where I could not see she was growing roots. For months I kept watering her with only hope that perhaps something was growing. From above the surface there was no evidence I was contributing anything to what appeared to be a dead plant. Underneath, just below what the eye could see, she was hard at work.

    Once the roots were re-established, she was able to concentrate on the outer new growth. We can see and celebrate the emerging leaf but it does not negate all the work put into growing what we did not witness in the dark and soiled place. She still needed the faithful watering despite uncertainty if she could even grow again.

    She will have to get used to being in the pot alone. For a while she gloriously and beautifully shared space. She shared the same sun rays and same root system. Only together could they make the beautiful plant that adorned the front window. That plant is no more from the breaking, but another space will form. New, unexpected, and even beautiful leaves will fill in. I know it won’t be the same beautiful in the once familiar form. What was unique has been severed but not demolished. Given time and new growth I will grow accustomed to it and even be grateful all was not lost after all.

    Sweet boy, I have broken most assuredly and completely. Though I am surrounded by family and friends and so much love, I am apart from where I began and alone. God has put me in a corner in the soil. He has not forgotten. He does not hope because He IS hope. He waters me faithfully. I can’t tell today but roots are regrowing.

    See, I am doing a new thing! Now it springs up: do you not perceive it? I am making a way in the wilderness and streams in the wasteland. Isaiah 43:19

    I barely perceive it. But I trust the promise. I trust the hope in the color of green. I trust the One who bent down to show me. It is coming. May it be soon. May I have the patience to endure until, finally, gracefully I see the full unencumbered way.

  • Cola

    Cola

    I am not at all steady today, sweet boy. The tears won’t stop. My eyes are swollen. The world does not spin as it should. The fog descended again and everything seems slow motion. It has been twenty-two days.

    Today I am simply hoping to hope.

    Years ago I wrote a blog about Kintsugi, the Japanese art of repairing broken pottery with gold. The pieces are put back together with gold leaving familiarity but a new creation reinforced and more valuable than before the breaking.

    I wrote it after your dad died. I tried so hard this morning while watching the morning sun come to hope perhaps I would be put back together once again . This time, sweet boy, my soul is not broken. It is pulverized.

    I began looking for some sort of hopeful imagery about pulverized material being created into something new.

    Glass Blowing

    It begins with molten glass. The process requires purified sand (the structure), ash (lowers the melting temperature), limestone (stabilizes and strengthens), and recycled glass (makes the mixture melt faster and conserves energy). The mixture is heated to about 3100 degrees Fahrenheit for melting, chemical reactions, and impurities rise out. The molten glass is kept hot for the refining process. The heat forces trapped bubbles to escape, the mixture becomes uniform, and impurities separate.

    The artist will then blow air through a special instrument to form the shape. The new creation is shaped by the artist’s hands, gravity, and breath of life.

    Perhaps glass blowing will be another writing for another day. A day when I can see the forming shape that has been created by God’s hand and the breath of His Spirit.

    Today is not that day. Today I have not been able to stop crying. Today your baby brother held me on the couch as I sobbed and told me it was normal to be sad, that I should cry it out so it doesn’t come out in a bad way. I don’t know when he got so wise. The coin flipped and instead of me telling him it was going to be all right and kissing away the sadness, he did that for me.

    I told him about a sermon I watched today about Nathaneal, his name sake. In the Book of John, Philip tells Nathaneal about Jesus.

    Can anything good come out of Nazareth? John 1:46

    Before Nathaneal knew Jesus he couldn’t imagine what good may come. Immediately upon being found by Him he said “Rabbi, you are the son of God; you are the King of Israel.” (John 1:49)

    It didn’t take long for Nathaneal to realize what good could come from unexpected places. I told Nathan for us, it may take a little longer not because we don’t believe but because our grief is so deep. But we do believe. And it is coming.

    Your sweet brother got me the last coke in the house with a bunch of ice. He even made it fancy to try to make me smile. And it worked.

  • Held

    Held

    We went to Tyson’s Corner today. Nathan asked if we could and he never asks for anything. I put the bravest face on I could and off we went.

    It was strange just going to the car. There was no backpack to stuff with catheters, aprons, pullups, wipes, g-tube kits, and pureed food. No extra bowls, spoons, or cups to pack. No iPads and extra chargers. No planning lunch based on what restaurant wouldn’t be too loud or too crowded. We just got in the car. And it was awful.

    I did alright until the food court. I took Nathan over to get bubble tea and while we waited I instinctively looked over to the table to see if you were okay. But you weren’t there. It is a cruelty that the natural urge to find you is met with the reality that I may not.

    I went to the bathroom and sobbed. I am not sure how many more bathrooms I will cry in but I suspect there are many more to come.

    When Emerson was in kindergarten he had the most amazing teacher. She was kind and gentle. The kids were rowdy. I remember how the louder they got the quieter she would speak until it was just a whisper. She didn’t escalate the situation and the kids would quiet down so they could hear her. She didn’t match their loudness; they matched her whisper.

    The pain from losing you, sweet boy, has been deafening. It is all I hear every moment of every day. It haunts me a night and even while I sleep nightmares come. There is no reprieve.

    I don’t know how to quiet it on my own. So I listen. I listen for God’s whispers. I heard one today as we drove back from Northern Virginia in the form of a song I had not heard since 2011. This time, though, the song has entirely different meaning to me. An abridged version:

    Two months is too little.
    They let him go.
    They had no sudden healing.
    To think that providence would
    Take a child from his mother while she prays
    Is appalling.

    Who told us we’d be rescued?
    What has changed and why should we be saved from nightmares?
    We’re asking why this happens
    To us who have died to live?
    It’s unfair.

    This is what it means to be held.
    How it feels when the sacred is torn from your life
    And you survive.
    This is what it is to be loved.
    And to know that the promise was
    When everything fell we’d be held.

    This hand is bitterness.
    We want to taste it, let the hatred numb our sorrow.
    The wise hands opens slowly to lilies of the valley and tomorrow.


    If hope is born of suffering.
    If this is only the beginning.
    Can we not wait for one hour watching for our Savior?

    Natalie Grant “Held” https://youtu.be/9n97BGlQpxY

    That was it. God’s whisper.

    It doesn’t take away the pain. Not even a little. I have known many mothers who had to bury their children. I always felt so sad for them and as much as I thought I imagined I could understand, the reality is a million times worse. There is no hell on earth quite like losing a child.

    Hope has not yet been born of this suffering. But I am held. And I will wait and watch.

  • 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)