Patience to Endure

Tag: family

  • The Question

    The Question

    I took Baby to get his hair cut. I think he has grown taller since you left. The hairdresser couldn’t believe he was only thirteen years old. Since we were there, I checked to see if they could squeeze me in. It has been at least two years since I had a professional haircut. They had availability ten minutes after Nathan’s appointment began, so I waited.

    Something in me knew.

    My anxiety increased exponentially.

    I would, for the first time, be asked the inevitable question.

    My arms pressed into the chair as if holding on during the ascent of an unintended roller coaster ride. My hands involuntarily grasped the arm rest as it was about to reach the apex – leading to a steep decline, racing out of control.

    My body braced for the impact my soul was about to experience. The unpredictable cruelty Grief enjoys was about to send me into a sudden, wild drop because a stranger wanted to make small talk. Of course, the stylist had no way of knowing. I looked like any other mom taking her teenager and herself for a cut.

    I had only been in her chair for a couple of minutes before it came.

    Do you have other children?

    There it was.

    Nathan’s haircut was finished and he waited on the couch nearby. As soon as he heard her, his head whipped around to see me. He wanted to make sure I was alright. He knew me and the weight a stranger’s question carried – it pierced my soul and put your baby brother on high alert.

    I have two other boys, but one passed away.

    Gentle tears escaped, despite trying to contain them. Will I ever be able to say that sentence without crying?

    Sweet boy, I know you are gone and I am not sure why it hurts more when I have to say it. Will it always?

    I still have three boys, but they are not all here.

    How can such a simple question be so complicated? How can it cause such turmoil? I see Grief laughing in the corner.

    You always loved getting your hair cut. Your friend, Tammy, an instructor from the Virginia Institute of Autism, would come to the house and cut it. We learned she could cut hair after you discovered a buzzer in the bathroom. I didn’t know if I should be mortified you turned it on and cut your own hair – or be proud you turned it on and cut your own hair.

    That was life with you, sweet boy. It was never linear. There were no neat parallel lines. Everything was mixed together and inseparable. It was simple and complex. It was peaceful and chaotic. It was predictable and mysterious. It was wondrous and, at times, terrifying.

    We lived the epitome of “both/and.”

    You would think I would be able to handle conflicting simultaneous truths Grief presents better because that was life with you. But here in the after they are heavier and make less sense, as does everything. The untangling takes more energy than I have. Some days just living seems to take as much energy than I can muster.

    Sweet boy, “they” say Grief never leaves – I will learn to carry her. I suppose that means first I need to catch her.

    Seven weeks in the after, I am nowhere near being able to predict when and where she will show up – sometimes with callous ferocity leaving me on the floor in a fetal position. Other times she gently whispers, “I am still here.” 

    She is - 
    everywhere...
    unpredictable...
    vicious...
    gentle...
    stealthy...
    a slow burn...
    never ceasing...

    How will I ever catch her?

    Today, she waited quietly to ambush me – in a chair getting my hair cut.

  • 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.

  • Hunt for the Good

    Hunt for the Good

    Sweet boy, we are approaching six weeks since the loss of you. At first I counted time by days and now in weeks. I don’t know why I mark the time from the day you died – only that I do. Just as we tell a baby’s age at first by days, then weeks, then months, then years so goes the marking of death.

    I have storages of unpacking to do including medical trauma interlocked with grief. Once the unpacking begins, I suspect other traumatic losses will rear their unhealing, so I enlisted help. I started therapy. The therapist said many studies have been performed regarding grief with soldiers because they are a unique population and have endured extensive losses. One of the tactics used that seemed to help was

    “Hunt for the good.”

    At first I started thinking about hunting in terms of the sport. It requires active seeking, difficult landscape, going undetected, and waiting. This didn’t sit quite right with me especially because the object being hunted does not want to be found.

    The good which I seek wants to be known.

    Easter is in a few days, sweet boy. Thankfully, your brother, though 13, still wants to do an Easter egg hunt with your cousin. I will stuff some eggs with candy and others with money. As you know, traditionally, the golden egg has a twenty dollar bill and is extra hidden but not impossible to find. The hands that hide the eggs are hopeful they will all be found – and gently assists to be sure they are.

    I will hunt for the good, the hidden treasures, as a child with an empty basket on the morning of celebration dedicated to divine hope and promise.

    The eggs will seem like ordinary things. A warm cup of coffee… the morning sun.. your brother’s smile.. Grandma’s laugh… new leaves on my plants.. Steve’s hugs… Emerson’s phone calls… a full moon… a hot shower…

    The very skill I need to survive your death was taught to me by you through your life.

    When you were six months old you lifted your own head for two seconds. I cheered and cried. It didn’t matter it was months later than typical. What mattered was that you did.

    You were diagnosed “failure to thrive” and had a feeding tube placed when you were one. Your first birthday was celebrated in the hospital. The doctors thought we would have to always tube feed you and did for a couple years. Then, through a lot of work with speech therapy, you began to eat pureed food. Once again, I cheered and cried. You learned to eat.

    A lifetime of witnessing you, sweet boy, work incredibly hard to accomplish what others did naturally formed me into a mom able to find the good – even in delayed or absent milestones, missing pieces of chromosomes, and hospital rooms. I will find the good in living each day.

    I am still here. It cannot be for nothing.

    Living and loving you led me to take nothing for granted. Not only because of your accomplishments that were never supposed to happen to be but because that is how you lived. You laughed at the littlest things – an inflection or word. Sometimes ordinary words would make you laugh hysterically. Like feet. And focus. And not sorry. It was beautiful.

    Hunt for the good. Desperately find it. Crack it open. And with a grateful – even if broken heart – cherish the treasures.

    Ever so slowly, my basket will fill.

    The Hands that hid the eggs will help me find them. Even after the basket is full, I will continue to hunt for the good. But, sweet boy, that is how we lived wasn’t it? Not just in loss. We did it in life. The little things didn’t just matter, they were everything. That skill is now my saving grace. The very thing you taught me through your life will save me from your death.

    I will give you treasures hidden in the darkness – secret riches. I will do this so you may know that I am the Lord. (Isaiah 45:3)

  • 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.

  • 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

  • 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

  • Church

    Church

    Steve and I went to church today with the “baby.” When I brought Nathan home from the hospital thirteen years ago I taught you the sign for “baby”. It didn’t occur to me then that someday you would still be calling the six-foot one teen age brother “baby”. You loved it when he came with us on our outings, especially Target. He loved playing with you and giving you hugs. He hurts deeply now that you are gone.

    I have been reading about “care giver crash” lately. It isn’t a medical diagnosis but is a psychological and physical collapse that occurs when prolonged caregiving suddenly stops. I guess my body was in chronic survival mode. It helped me to stay alert, sleep lightly, and wake quickly so I could care for you. The adrenaline, hyper-alertness, cortisol, and purpose I had for twenty-four years are cruelly and abruptly no more. Apparently it is my nervous system’s way of finally saying “It’s safe to stop now” and years of exhaustion surface all at once. I detest it.

    Then the collapse… exhaustion, bodily heaviness, trouble concentrating, waves of grief, headaches, muscle aches, sleep disruption, feelings of disorientation. Unbeknownst to me, my nervous system was carrying a huge load for a very long time. It didn’t feel like it because it was all in the care of you and it was my honor.

    Add grief over losing you and gravity is much more than 9.8 meters per second squared. Even the weight of my body in the world is different. Steps are heavier. Sitting up feels like exercise. Everything is a challenge.

    When your big brother Emerson was little I remember watching an anime with him where the hero went to another planet to train. The gravity was much heavier so when he went back to his original planet he was stronger, faster and could jump higher. The extra gravity worked to his advantage. Perhaps that will be my case. I hold on to hope still yet.

    But I went to church today. Gravity made it hard to stand. The music started. I lifted my chin and sang the words. As if enveloped in thick mud it took all my strength but I did it, sweet boy. I raised my hands in worship. Worship isn’t an emotion. It is not a feeling. It is a necessity and I felt better for it knowing God is worthy and realizing you are on the other side of eternity singing praise. For a moment, once again but altogether different, together we sang.

    We were going to go out to eat with Grandma and Aunt Dolly later but I just couldn’t. We never did that before because the few times I did go to church I always had to go straight home to catheterize you. Today wasn’t the day to start that tradition. It just didn’t feel right yet. It may never feel right but, I hope, it will eventually feel less wrong.

    On the way home Aunt Dolly started coughing. I still said out loud “Aunt Dolly coughing. Better do something!” even though you weren’t in the car to laugh. Do you remember how I started that game because you would get scared sometimes when you started coughing? Whenever you were scared we would make a game of it and suddenly the fear was replaced with laughter. The unintended consequence was every time you heard someone cough you would laugh.

    I came home and collapsed to the couch. The doorbell rang and it was a friend who has traveled this road. She gave me a book and told me it helped her on her journey. There is something profoundly beautiful when someone who has walked through hell comes back, holds out her hand, and shows you the way.

    find me there.

    where sunsets glow

    but it never gets dark.

    where pain doesn’t exist

    and comfort is always felt.

    where everything you’ve ever loved

    finds its way back to you in the end.

    the place you went to when

    your heart fell asleep.

    my time will come

    to see you again

    and you can

    find me

    there.

    sara rian

    I am so lost without you, my sweet boy. It is an agonizing pain worse than anything imaginable. I find solace that you don’t feel this pain and you are where it is never dark and all you know is comfort. And someday, my child, you can find me there.