Patience to Endure

Tag: Loss of a child

  • Fragility

    Fragility

    Twenty-four years seems too short yet a miracle.

    You were medically fragile but the strongest person I knew.

    Your death was shocking but anticipated.

    You are my son but you are not here.

    I have been looking for answers that may never come. My heart knows healing and alleviation will not be found in the explained. Yet I look.

    I did a deep dive into your deletion yesterday. When the geneticist told me twelve years ago where it was and the genes involved science didn’t know much yet about the specifics of what it meant. “Some proteins” was all they said. Despite advances in DNA mapping, I never did research until the after. I didn’t want to be scared. I didn’t want to mute your life because of that fear and I knew if I knew then I would.

    The simple breakdown is this: you were missing pieces of chromosome 1 which included about 1.8 million base pairs. It is a moderate-sized deletion though classified as micro. Important information was missing imperative for brain and development, body stability and system regulation, immune and infection response, connective tissue and structural support. Within that deletion were 44 known, important genes that have been identified and studied. Ten of those are linked to medical conditions. I dove into the specific genes like ASH1L, SYT11, LAMTOR2 and RNA and how proteins are involved. The information uncovered to me it was a miracle we made it as far as we did, sweet boy.

    I wonder if our DNA is like a symphony. When a deletion occurs, the symphony has missing instruments and incomplete sheet music. Music is still created but other instruments have to play harder and longer to fill in what is missing. Sometimes it doesn’t sound as melodic. Other times it can be quite a cacophony and struggle. Musicians have to improvise and can clash. The stress causes strings to break from the violin playing longer than intended. The cellist fingers begin to hurt. Everyone is playing furiously to compensate for the missing instruments all the while not having all the notes or how long to hold them. It is exhausting and discombobulating to the musicians but it is still music. The process is more exhausting than if they had the complete symphony and all the sheet music. After having to perform that way daily for years, twenty-four of them, and under stress the missing pieces become critical. Daily compensation leads to a tipping point unpredictable and unpreventable until one day the music stops.

    But while the music played it was beautiful nonetheless. From this audience of one I never heard the missing notes or instruments. I just heard your laugh and screams of excitement. I will forever miss the sounds.

    Your body was working harder every single day for twenty-four years than I realized just to make it through the day. Without those important pieces I can’t imagine how much it took just to stay steady. Other genes and systems could compensate for a while. You, my sweet boy, were the king of fortitude and that carried you. That carried us.

    I also saw in the research how over time those systems of compensation become compromised. Hypotonia often becomes worse. GERD and aspiration risk increases. Reserve becomes reduced. Chronic compensation leads to systems becoming fatigued and forces a body to respond more slowly and become overwhelmed more quickly. Everything that can go wrong becomes more likely. And it did.

    Your biology was vulnerable and it was also resilient. Both are true. You died young but lived long. Both are also true. You were fragile but strong. I have to find space to accept those seeming paradoxes.

    Last night I fell asleep wondering if I was in denial about your medical complexity. In reality, my heart and my brain didn’t hold you as medically fragile or high risk or complex. They held and will always hold you as my son who loved pudding and laughing and hugs and music. I normalized what we lived with and we adapted to risks. Others would often say, “I don’t know how you do it,” and that would perplex me. I just did what needed to be done to give you the best life possible. I hope I did, sweet boy.

    High risk was my normal. Fragile stability became baseline. Not living that way would have taken something significant from both of us and replaced our joy with fear. For that I am grateful.

    We lived inside a reality that unfolded slowly, silently, and insidiously until it didn’t. You were labeled medically complex and I did my best to protect your life from being reduced to that. We danced. We shopped. We went to concerts. We hugged strangers. We ate pudding. We swam. We loved and lived without intense fear.

    After you got sick three and a half years ago they told me you wouldn’t make it. Yet you did. Each night after I would kiss you goodnight. I would tell you how you are my whole world and thanked you for fighting so hard to stay with me. I didn’t know, sweet boy, how hard that fight was every day.

    This time when you got sick and we knew the end was near I asked everyone to leave the room. I needed a few moments alone with you. I told you how much I loved you and how proud I was to be your mom. I thanked you for fighting so hard but if it was time to go I would be all right. You didn’t need to fight anymore. I didn’t want you to feel like you somehow failed. I told you how your Dad and Grandpa would be waiting and you would get to meet Jesus. I hoped He would tell you He was proud of me. I already knew, with all my heart, He was so proud of you.

    Until your last heart beat I savored every moment with you. Every single time, no matter what I was doing, when you asked for a hug I gave you one. You were such a stinker and would ask for one sitting in your shower chair, soaking wet. I would hug you and you would laugh so hard. I will have that picture in my heart until my last beat.

    I sit with the paradoxes that create a push and pull in my soul. I acknowledge both can exist and both are true. I despair it was only twenty-four years. You are irreplaceable. I am grateful it was twenty-four years. You were a miracle. The instruments that will connect those two diametrically opposing movements of my muted symphony, my sweet boy, is found as I grieve your loss and celebrate your life. Those notes are the quality of those twenty-four years. The time we did get we created by giving one another joy, loving lavishly, savoring every shaky hug, laughing at the littlest things, eating wonderful food, and caring for one another in a way even death cannot unentangle. It will be with me always, my sweet boy. As will you.

    Missing chromosomes and base pairs, incomplete information – none of that matters as I sob on the couch on this dreary day. You were created exactly as He intended. You were His masterpiece. You were the most beautiful symphony I will ever hear. And being your mom is my highest honor.

    I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well. Psalm 139:14

  • 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.

  • 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)

  • Empty

    Empty

    It is another beautiful day, sweet boy. I feel a little steadier today. Still so very sad and lost but steady in this place.

    Steve took me to the Overlook Produce to look at plants. I was afraid of how I might react when I saw Buc-ees across the street. How you loved that place! You would sign “mouse” and “cheese” to let me know when you wanted to go there which was more often than we could. You were so clever and thought Buc-ee was a mouse and knew it sounded like “cheese”. You had your own language and I was privileged to understand.

    We would get your favorite banana pudding and drive to the Harrisonburg Mall. I would intentionally park at the Old Navy entrance so you would have to use your walker the full length of the mall to the food court. You were always very food motivated. You would sit there and enthusiastically eat every bite while waving to people around us. I will forever remember the staccato movements you would use to scoop the pudding to get as much as possible in one spoonful.

    As we drove today I felt an emptiness. It is always present but this was different. From the years of helping with Grief Share I often heard people speak of the relief that came when they didn’t have to intensely care for someone any longer. They weren’t happy their loved one was gone but they felt a sense of alleviation to not have the responsibility.

    I looked out the window at the mountains in the distance. I didn’t have that feeling I held for twenty-four years. Even when you were in school or we were apart I never settled. At night I slept lightly always with the ringer on because I knew at any moment you might need me. You were ever present in all I did. I was always at the ready and now that I find no relief to no longer be.

    I find it empty in this place. The awful emptiness where something valuable and important was and now nothing remains.

    I got home and the basement door was open. You are gone and now we don’t need to be sure you can’t access the stairs. Scissors lay gently on the coffee table where they could never be for fear of you finding them and getting hurt. I no longer scan the floor a thousand times a day seeking small objects you could ingest. Almost a quarter of a century of diligence all for you are no more.

    There is no relief. Only a vast emptiness where the hypervigilance once sat and never slept. See, in that space was where I loved you best, where I protected you from anything that could harm you. The two things, however, my sweet boy, I could not protect you from was your own body and God’s timing.

    To me, they were both beautiful and awful and merciful and cruel. I miss you endlessly

  • From the Loss of You

    From the Loss of You

    I have never been

    so far from who I am.

    An imperceivable smile

    stifles the little laughter

    barely there

    that never escapes.

    Tears are liberal…

    forceful…

    unceasingly present

    and beyond my control.

    We are both gone yet I remain

    The world cruelly goes on

    Bills need to be paid

    The dryer broke

    Friends inquire how I am

    when I know not who I am

    From the loss of you.

    A shell of a mother after the final heartbeat

    Yet somehow mine continues.

    I long for the day I remember

    who I was before this pain.

    I await hope to discover

    who I may yet be.

    A distant dream

    of a far away place and time

    when the loss of you might

    subside long enough

    to allow more than just breath.

    When you were ripped

    from me the best parts

    of who I was vanished.

    They did not go with you

    to fields of Grace

    yet do not remain with me.

    Perhaps on fairer days

    I will find them tucked and hidden

    beneath this suffocating grief.

    Perhaps they are only forgotten

    for a little while

    from the loss of you

    When the morning sun stays

    longer than a glimpse

    and with strength renewed

    I will pull them out.

    I will dust them off.

    Gently, gracefully, finally

    adorning not as an old woman wears a shawl

    but as the victor, triumphant in purple and gold

    from the hard fought battle.

    She who was before the loss of you

    may never return.

    With a little luck and a lot of God

    I will meet a new she somewhere in the maps

    and be proud of her becoming

    from the loss of you

  • Unpack

    Unpack

    It is a beautiful day today, sweet boy. The kind of day you would sit on the swing and with furious determination scroll through your Ipad.

    I managed to catch up on watering plants and even repotted a couple. Still, most of the day was spent on the couch unpacking the medical trauma from two weeks ago and, of course and always, missing you.

    We got to the hospital on February 17th around 11:00 am. As we waited for them to call us back you were feeling well enough to be ticked off. They drew some bloodwork, got you a room, and started IV medication and fluids. After a few hours you were moved to a different part of the emergency room where the stable patients went until a bed opened. You were supposed to go to the general medicine floor. Even the medical professionals could not see and lab work hid how sick you really were.

    Around 11:30 pm it all began happening so fast that I didn’t know what was happening even as it was happening.

    He is in A-fib. We are moving him to the part of the ED where the ICU trained staff is.

    As soon as she finished her sentence a team descended and whisked you out of the room. We have been in the hospitals enough to know rushing teams is not good.

    You were taken into the resuscitation room with an unsettling brisk pace. At least twenty people went in the room. It was the same room they took Grandpa into by ambulance 2 years before… My heart sank.

    What is happening?

    Let me get you a chair.

    What is happening with my son?

    When they do not answer your question you know you do not want to hear the answer.

    I peaked in your room

    Your blood pressure was 60/40. You were pale. You were dying. I begged you to stay.

    Please come sit down.

    Afib….Low blood pressure. Cardioversion. Shock. Could die…

    Where is Mom?

    I see her standing in the hallway lost. She looked so small and so scared, not the feisty woman I know.

    Can you get my mom a chair?

    We are conferring. He may need cardioversion to shock his heart. In rare cases it can cause cardiac arrest.

    I fall to my knees. Head bowed. Hands clasped.

    Please God, one more time, let me keep my son.

    My mom calls her best friend on the phone. It is midnight. Her friend comes immediately.

    I call Steve. He is crashing. Please come.

    A nurse kneels next to us.

    I don’t know much because he just got here but I will answer what I can.

    Finally someone is speaking to us.

    I look in the room again. His blood pressure is 50/30

    We are pushing a lot of fluid.

    A social worker appears. Do you need a chaplain?

    The only time they call a chaplain is when someone is dying. I decline.

    The fluids seemed to be helping. Cardioversion postponed. They take you to the ICU.

    Over the next few days I would see only small glimpses of you. You were on a lot of medication. I began missing you already.

    The next big trauma would begin on February 21st and would be your last.

    No more shocks to the heart, sweet boy. No more infections or failing valves. No more cascading dominoes. Not for you, anyway. Mommy is trying so hard every day to keep one domino up. I just need one to stay stable. It often teeters but I will not relent. You taught me well. I will make you proud.

    the wish

    to be with you there

    sits on one side of me.

    the desire to make you proud here

    sits on the other.

    and between them

    I’ll sway

    until i have both.

    sara rian, find me there