Patience to Endure

Tag: special needs

  • 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.

  • Assured

    Assured

    Assured: something guaranteed, certain, confidently expected.

    When you were born, sweet boy, we had no idea you would have special needs. I went to the operating room for a repeat cesarean section fully expecting a normal, healthy baby boy.

    Your cry was weak. The room was silent. Something was not right.

    No one came to visit us in the hospital. When your brother Emerson was born two and a half years before our room was filled with flowers and balloons. Yet with you, no one knew what to say so they said nothing.

    The fear – of not knowing if I was going to be able to keep you and this new world we were unexpectedly thrust into – could not be made better by typical platitudes, Christianese or even, in some sense, Scripture. My faith has matured over the last twenty-four years, yet the platitudes and Christianese still offer little to no comfort. The solace I find is in the assurances, the promises yet to come. Until they are birthed, I sit much of the day in trust and hope. I feel gelatinous in the stasis but faith surrounds me.

    Now faith is confidence in what we hope for and assurance about what we do not see. (Hebrews 11:1)

    My confidence is small.

    Most days, my hope is simply to hope.

    My assurance is great because I know Him.

    I am not alone. He is here.

    My tears are collected. My pain is seen and honored.

    His mercy is new. I woke up. I breathe. Your brothers are well. I am loved. I am forgiven and redeemed.

    My strength will be renewed. Even micro strengthening is significant. If I can lift my soul just a little longer today it is a victory.

    This pain will not be wasted. He works ALL things for good. Yes, sweet boy, even my grief. I don’t know how, but am assured He will. It may not be proportional, but it will not go unclaimed.

    I will be lifted out of the pit. I wonder if it comes so incrementally, I won’t realize it until I am out. Perhaps freedom will be found on an unexpected day, without warning or announcement. I wait with joyful anticipation.

    His Grace is sufficient. I can’t do this, sweet boy. I am living every parent’s worst nightmare. His power is made perfect in weakness. I am protected.

    I will be steadied as I walk along. When I am able, I will learn to walk again in this world without you. As a child just learning, I will lose balance and be recovered.

    I was shaped by your birth. It was the first time I realized two things can both be true and opposed. I was ecstatic and scared. I was happy and sad. I was thrilled and disappointed.

    I was shaped by your life. You taught me resilience, persistence, boundless laughter, strength, advocacy, purity, and how to love others unconditionally. I became the best version of me by loving you.

    The beginning of your life, sweet boy, and now in the after have been two of the most uncertain, frightening times in my life. Learning to be the mom of a child with special needs was like moving to a foreign land with no knowledge of the language or customs. I didn’t even know we were headed there until we arrived. But I learned. Not only that, I made a home for us there. One filled with vigilance, fun, and so much love. It is the accomplishment of my life.

    And on an ordinary Saturday morning in February it was destroyed.

    There is no avoiding it, I will be shaped by your death. I will be shaped by the catastrophic loss of you. But also how I heal and what I choose to let take hold of my heart. I promise you, sweet boy, it will not be bitterness. It will not be fear. I will be shaped by how I move when forward motion is possible. You will be with me, sweet boy. Moving forward is not the same as on.

    The shaping is yet to come. It is inevitable. It is consequential. It is uninvited but here all the same. Until the assurances reach full gestation, my soul – gelatinous, suspended – is held together by the promises they hold.

  • Anointed in Grief

    Anointed in Grief

    One of your favorite people stopped by today, sweet boy. She is one of mine as well. Walking into the house with a smile, determination, and a bag hanging off her shoulder she said,

    “I have some things. I want to pray over you. Is that ok?”

    We sat on the couch as she pulled frankincense and myrrh anointing prayer oil out of her bag.

    “Can I have your hands?” she asked offering hers as well.

    Using the anointing prayer oil she poured them on my:

    HANDS

    “Father Abba, these are a mother’s hands. These hands have cared for Wesley. They fed him, held his hands, carried him, picked him up when he fell. They have cradled him to sleep and wiped his brow. These are a mother’s loving hands. They have catheterized him, washed him, and cared for his wounds. Though they feel empty, we know you can fill them. I pray you would heal them and give them new purpose when it is time.”

    FEET

    “These are a mother’s feet. They have chased Wesley around the house. They have pushed his wheelchair through stores and malls and Time Square so he would enjoy life. They have walked around the home in the care of him. They have paced hospital rooms. These feet have walked in your purpose and have followed you. I pray you would give them rest. I pray you would rejuvenate them. May they follow your new path and new purpose in Your time.”

    MIND

    “This is a mother’s mind. She has worried about her children. She has thought about their well being and solved their problems. She planned Wesley’s days. She advocated and spoke to doctors. This mother’s mind made hard decisions. She learned so much to become licensed to care for Wesley. I pray you would help her to use that knowledge to help others when it is time. I pray lord you would give her peace and healing. Please be close when she is anxious. I pray, in time, you would give her new thoughts of hope and tomorrows. May the memories here become more joyful than painful.

    HEART

    “This is a mother’s heart. In here her children have lived and forever will. Wesley filled her heart and though he is ok her heart is not. There is an emptiness, God, that only You can fill. This mother’s heart is broken but You hold the pieces. You hold her. She has loved them unconditionally and abundantly. Her heart is hurting now and I pray you would sit with her. I pray you would comfort her and fill her heart with Your love. Give her peace.”

    I sobbed the entire time, sweet boy. Crying is my normal these days, but these tears felt different. They were cleansing. They were heavy with grief yet light with praise and had an ever so slight tinge of hope and peace.

    My hands are empty. My feet long to be tired. My heart is destroyed. My mind is foggy. For now. We have been talking in our home, sweet boy, about adding “for now” to the end of our sentences. We desperately need hope it is only this twistedly wrenching for now.

    Granular relief during global grief.

    Our friend gave us a beautiful gesture and powerful prayer of deep love. For over twenty years she has celebrated our family’s victories and reached into the pit especially when your dad died and when Grandpa died. She came to the hospital to pray with us at midnight when you first began crashing. Sweet boy, whenever you heard her voice even from the other room you would crawl out to see her. You loved her because you recognized God’s love incarnate. Like recognizes like.

    A friend loves at all times, and a brother is born for a time of adversity

    Proverbs 17:17. There is that number again.

  • 5 Weeks

    5 Weeks

    Five weeks ago today, sweet boy, I left the hospital without you. When Steve and I arrived home Grandma was standing in the kitchen. She saw me slowly walk up the steps hugging your pillow. I didn’t need to say a word. She knew I would never leave you in the hospital alone.

    Your brothers were awakened by Grandma wailing. I went to tell them but they already knew. It was the worst day of all our lives. I will unpack it and the medical trauma another day.

    For the last five weeks, I have spent most of my time on the couch. I have been accosted by grief before when your dad died and my dad died. There is no comparison, sweet boy, to the depth of grief over you.

    At first, it came in relentless high, powerful, uncontrollable attacks constantly pummeling me. I could not catch a breath between blows, nor silence the screaming anguish from my soul. Just in the last couple of days I have been able to control it ever so slightly. Sometimes I try to wait until no one is around and release the tears. Our family is so worried and feels so helpless. I see the loving desperation their eyes that perhaps today I will feel a little better. Sometimes, though, the tears come anyway. I find grief is intrusive.

    Five weeks. Five years. Five lifetimes.

    Time is strange when grieving.

    One thing I have learned is grief isn’t a journey. There is no destination, no end point where I hang a flag and exclaim, “I made it!” I have heard it explained as learning a new language. That doesn’t fit for me either because not everyone speaks it nor understands.

    It is displacement. It is a house you’ve lived in for a very long time. There is happiness and it is beautifully harmonious and you love it there. Everything is in place and so much love abounds. On a seemingly beautiful day a hurricane hits. The home is destroyed and all you have left are pieces as you sift through the rubble. Some things have been destroyed and others are missing entirely for good. You have no tools to rebuild. Even after the hurricane things continue to fall. Family and friends try to help but you are surrounded by what is left and the shards prevent anyone from truly getting to where you are.

    So you cry uncontrollably.

    Your heart bleeds and your hands are useless.

    Nothing makes sense.

    All seems lost.

    Grief is sitting there in the after. It is seeing what once was and knowing part of the foundation is no more. It is trying to fathom rebuilding a house without the essence of it. It is realizing you don’t have the strength to exist let alone rebuild. Grief is crying out to an all powerful God who doesn’t wave a magic wand and make it better but He will sit there with you and you are grateful because He is the only One who can.

    Five weeks after your death, sweet boy, I am prone in the rubble. The elements are harsh and I am exposed. There is a strange apathy that accompanies grief and it doesn’t seem to bother me. It is early yet. Nothing can hurt more than losing you.

    There is a part for me that will come before the rebuilding. Perhaps that is where I will gather tools, supplies, and strength. I am not sure – but choose to wait with joyful expectation. God will not leave me here in the aftermath. He has promised to lift me out of the pit of despair. He will set my feet upon a rock and steady me. He just hasn’t yet. I wait for Him.

    When the time comes, we will rebuild the house with no blueprint. It will seem impossible and it will feel like a violating betrayal. Tear by tear and brick by brick something else entirely will exist. Somehow, we will make a new home but there will always be space where you would have been. We will always have empty rooms in our new home and forever adjust to the place that belonged to you. They tell me we will learn to live there.

    Five weeks in the after it feels the eventual rebuilding will come with a reluctant acceptance. Acceptance must come. I have to learn to live in the place grief has assigned me. But she will not rule me. There will be an eventual moving forward without leaving you behind, sweet boy. I carry you with me always and there will be a place for you no matter what house I build.

    Grief can’t take that for me.

  • 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

  • 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 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