Patience to Endure

Category: Grief Journey

  • Held

    Held

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

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

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

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

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

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

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

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

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

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

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


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

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

    That was it. God’s whisper.

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

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

  • The Reason

    The Reason

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

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

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

    1q21.3 – 22

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

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

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

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

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

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

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

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

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

    I hold to the promise:

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

  • Coins

    Coins

    I am struggling today with the “what ifs”. I read that the brain actually prefers guilt over helplessness. Mine is desperately trying to make sense of senselessness. Grief, it seems, can make us become our own harshest judge.

    I remind myself, moment to moment sometimes, that the medical professionals didn’t even know how sick you were. The labwork beguiled the raging infection within you. I just get stuck in the loop seeing it all in hindsight and, I know, that is unfair. It is called “counterfactual thinking” because the randomness of it all is so unsafe. Guilt creates the illusion of control and it is less frightening than believing nothing could have stopped your death even though that is where the harsh, cold, cruel truth resides.

    For twenty-four years my nervous system tied my wellbeing to yours and made your safety my biological responsibility. It was beyond maternal instinct. It was in the very system that made me who I am. Apparently, the neuroscience of it is my brain hasn’t immediately understood yet that our relationship has changed. It still wants to know how to find you, protect you, and fix whatever is wrong. It has not relaxed enough to accept I only find you in my memories now. My brain is deceiving me to search the past instead of the present. It is running thousands of alternative timelines looking for the one where you would have survived.

    My heart knows though even if I found a timeline in which you lived you still would have not. It is a form of self torture of love not ready to let go. My brain exhaustively is still trying to protect you even though my heart knows you are where you no longer need my protection. You have HIS and there is nothing from which you need protecting. It seems now the only protection I can offer is me from myself.

    Sweet boy, I fight the feeling that I failed. I should have, I could have prevented this yet still know I had no control. I cannot control when God says yes and when God says no. How I wish I could. You would still be here with me.

    The average distance between the head and heart is twelve inches. For me, it is measured in years…twenty-four of them. My watch has ended but I can’t seem to put the sword down quite yet. The battle is no longer for your health. The war that rages is between my heart and my mind. Grief set me here in the in-between. This is not where I am supposed to stay. This is not where God wants me to be. I know with all certainty you would not want me here.

    For now, my sweet boy, I travel back and forth. They are both torturous and broken lands. Sometimes a reprieve allows me to wait in the middle. The irony that my head is protecting my heart and my heart protecting my head is not lost on me. Both are in the process of healing and neither are home. Not yet.

    The struggle is two sides of the same coin. My heart and my head are who I am. Each are trying to protect the other and even with the best intentions the flipping creates a chaotic cacophony that just hurts. The day of agreement, they say, is a while away. Grief this deep and this profound does not dissipate soon enough.

    I am waiting for the funeral home to call me back to let me know when I can bring you home. We finally have enough money to pay their bill. I am sorry it took so long. I have cleared a space in my office for you. We sat and had coffee there every day. You would sit for hours while I worked on the computer. The only thing you ever wanted in life was to be in the same room as me. It was my truth as well. In some way others might find morbid, I find comfort having you with me still.

    Your brothers picked out an urn with a picture frame on the front. We liked the idea of being able to change the pictures. They miss you.

    This pain I feel is another two sides to the same coin. For twenty-four years I basked in the glow of so much love and the honor it was to care for you and have you care for me. The coin flipped on February 21st. As great as the love between us is the despair that sits on my heart every day. I know it will get better ever so slowly. The day will come when I think more about your life than your death. I pray it comes soon, sweet boy.

    As I sit in the living room on this gloomy day I find another coin. Your chromosomal deletion is what made you special and beautiful and loving. The coin flipped and your chromosomal deletion is what made you not survive.

    For today, the coins all lay face up in a way that is unbearable. Yesterday it was sunny and eighty degrees. Today it is snowing. Even nature flips her coin.

    I take great comfort that though the coins flip, the promise of our loving God is the final landing will be

    He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the former things have passed away. Revelation 21:4

  • 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

  • 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.

  • Home Depot

    Home Depot

    Two weeks ago this day your heart beat for the last time. It feels like two decades at times and two minutes at others. Time is cruel.

    I went to Home Depot today. You hated Home Depot. It was your least favorite store but we also had fun there, especially during Christmas. We would push all the buttons and watch Disney characters sing songs just for you. You would give me enough time to look at plants and then would let me, and the entire store, know it was time to leave.

    I pushed a cart today. It was abhorrent. When you were here I always pulled it because I would maneuver you in your chair in front of me. When I finished looking at the plants, there by myself I said, “Now we have to go find Grandma,” and my heart broke all over again. You were not there to hear me.

    I managed to check out and get back to the car in time to cry. You hated it when I cried. You always would cry with me even if you didn’t know what it was about. You laughed when I laughed and you cried when I cried. You never cared why only that we shared every emotion. You were the best companion.

    There were children everywhere at Home Depot today proudly displaying their craft. I cried more wondering why I didn’t get to keep you, my child. Then I remembered. I did. For twenty-four years I got to keep you closer than most mothers get the privilege of experiencing. And for that I am grateful.

    I don’t know how I am going to do this, my sweet boy. You were the voice in my head and the song in my heart. You were my purpose and every day I thanked God for giving me a child who would ensure my role as mother would always be profound because you needed me and that would never change. At least not until February 21, 2026. Your brothers will always need me as a mother but not like you did.

    I count it progress I was able to get back to the car before I cried this time. Baby steps. A friend once told me

    One step at a time. And when you can’t, just lean forward.

    I am leaning forward. Sometimes I just sit and cry. This grief is different. It has shaken my very knowledge of where I am in the world. It is physical. It is emotional. It is mental. It is overwhelmingly, seemingly impossible. But God…

    All the time I miss your beautiful love. Your smile. Your request for hugs which I honored every single time because I knew each one could be the last.

    That last one came two weeks ago today. Steve held your hand and I hugged you whispering “Mommy is here…mommy is here,” over and over until you were not.

    Someday I will be able to go to a store and not cry. Some day the clock will not remind me it is time to catheterize or give medication or have coffee together in my office. Someday I will make it through a day without crying. But there will never be a day I don’t miss you with my whole, shattered, broken heart. I hold to the promise it won’t always be so shattered or broken but do know there will always be a piece missing until I see you again, sweet boy.

    A friend sent me this poem. Your absence, the quietness of the house, the emptiness of my days tell my truth of this poem:

    Even in our sleep, pain which cannot forget falls drop by drop upon the heart, until, in our own despair, against our will, comes wisdom through the awful Grace of God (Aeschylus, translated by Edieth Hamilton in 1930)

  • It Isn’t Just Walmart

    It Isn’t Just Walmart

    I ventured out for the first time in almost two weeks since my precious son passed away. We drove to a Walmart 30 minutes from our home, one he did not go to on our daily outings. I thought it might be easier. I thought wrong. Walmart is Walmart.

    We walked in. Deep breath. Two more steps. Exhale. I can do this. I can grocery shop.

    I glanced to my left and saw the bakery section. We used to pick out muffins and cakes to mix with his pudding. He loved lemon, red velvet, and chocolate. My heart sees him lying in bed. He increasingly and aggressively signs pudding as his patience waiting for it wore thin. The boy could yell at me in sign language. How he loved food.

    Deep breath. Two more steps. Exhale.

    The tears fill my eyes.

    Steve, my husband, wraps his arms around me. “I am here,” he whispers.

    The tears are almost uncontrollable now.

    Grocery shopping felt like a violation, a betrayal, a foreign country. It has been years since I went without pushing him in his wheelchair. Almost a quarter of a century talking to him constantly and asking his opinion about choices. Decades of playing “Woah Wesley” when he was ready to go but I still needed to shop. He would from angry screaming to laughing without taking a breath. Only he could turn an ordinary trip to Walmart into a joy filled, love tossing extravaganza.

    A woman came up to us not too long ago in a Walmart.

    “Can I give him something?” she asked.

    She must have seen the confusion on my face because she continued.

    “I have been watching you and your son. I have never seen someone so full of love and so loved. I just want him to have something. I have this gift card. Will you buy him something?” she asked.

    We hugged. That was the magic of Wesley. His presence, his joy, his love could leave two people hugging in Walmart, grateful to have crossed paths and being forever changed by it.

    Wesley picked out a “Bluey” hooded sweatshirt with the gift card. It sits untouched now in a drawer I cannot open. Not yet.

    The tears now are uncontrollable.

    “We can go back to the car,” Steve tells me as I cry on his shoulder.

    “I have to do this. I have to learn,” I tell him even though I wanted nothing more than to run to the car, cry, and never go to Walmart again.

    The pain, I knew, would be there today, tomorrow, next month. Time would not make unentangling myself any easier had it been postponed.

    The grief inside me was irrepressible. I quickly walked to the bathroom, closed the door, and collapsed sobbing.

    It wasn’t the first time I cried in a bathroom over Wes…

    When Wesley was three weeks old Gary, my (now deceased) first husband, and I along with Wesley and his older brother, Emerson, traveled to Omaha, Nebraska to see Dr. Bruce Buehler. He was board certified in pediatrics, pediatric genetics and pediatric endocrinology. If anyone could tell us what Wesley’s diagnosis was, we hoped, it was Dr. Buehler.

    The nurse showed us to a very large room with a small table for the children to play, some books, and an exam table in the corner. I sat at the little table next to Emerson, then two and a half, as he watched Shrek on his portable DVD player. How I wished I could be as he was, oblivious to the gravity of the situation.

    I could hear cowboy boots coming from down the hall. The sounds grew louder as he turned the corner, entered the room, and with a smile stuck out his hand to greet us.

    “Dr. Buehler,” Gary said extending his hand.

    “Call me Bruce. No one calls me Dr. Buehler except my wife and that is only when she wants me to take out the trash,” he said with a deep belly laugh.

    He motioned to the table and we sat down as he opened Wesley’s thick chart. By the time we found our way to Omaha the list of abnormalities discovered within Wesley had grown. New doctors had been introduced and before he was even three weeks old Wesley already had a pediatric urologist, neurologist, cardiologist, and gastroenterologist. He had a social worker, a speech therapist, and an occupational therapist. I had to purchase an expandable accordion file to keep track of all his medical needs. The fuller the file became the emptier my heart felt realizing how much my tiny baby had already been through and was yet to face.

    A colleague of Dr. Buehler’s joined us and they asked me to place Wesley on the exam table. As a mechanic inspects a car, they examined every inch of his little body.

    “He has a high arch and cleft palate. Did you know that?” the other physician asked.

    I shook my head somberly no. Another anomaly.

    They excused themselves to confer. Shrek played. His father and I could not speak. We knew when they came back in through the door, our lives would forever be altered.

    After roughly twenty minutes they returned with two textbooks in their hands. Dr. Buehler flipped open the gigantic, blue book. With delicacy he looked at each of us and said,

    “We believe your son has Rubinstein-Taybi Syndrome.”

    Syndrome.

    The room began spinning. Words became incomprehensible even though we walked in that office suspecting he had a syndrome. Gary was a maternal fetal medicine specialist. They had a “rule of thumb” when it came to anomalies. One was probably nothing. Two might be something. Three was almost always a syndrome. Wes had more than three, but when it was confirmed by a triple board-certified physician my entire world collapsed. As if hope, no matter how small, was the only reason my world continued to spin in the only direction I had ever known.

    Then he said it. Syndrome. An obscure, uncommon Syndrome.

    The clinical definition is “a group of signs and symptoms that tend to occur together and characterize a particular condition.” The emotional definition in my heart was “unknown everything” and it was scary. It was world shattering.

    I could not have known then that the words he spoke would actually be my greatest blessing. It would bring me immense heart ache but also extraordinary joy. It would shape me into a better mother, wife, daughter, friend and human being. Later I would pinpoint that one sentence as the moment in time I began to become who I was meant to be. As it was happening, however, the only thing I could feel was utterly and completely crushed.

    I excused myself to the restroom just across the hall. Closing and locking the door behind me I collapsed to the ground sobbing. How could my life, I wondered, have changed so dramatically and drastically in the amount of time it takes to hear a single sentence? I stayed curled up on the cold, bathroom floor for a while weeping for all I lost. My dreams and my family’s future, I thought, were gone. I could not imagine I would dream new dreams and be given a future far more glorious than one I could have ever created for myself. But hope, you see, had not yet been born.

    How I wish I could speak to that scared, heart broken mother there on the floor with all the wisdom I have found over the last twenty something years. I would say…

    Hope is coming. Hold on. This child will be your greatest teacher without ever speaking a word. In his weakness you will find your strength. You will be his voice and fight for him with all you have. You will reach a new level of exhaustion. You will want to give up. But then you will persevere. You will become a better mother, daughter, and friend because he was born exactly as he is. This isn’t the worst day of your life. This is the day you become who you were meant to be. Grieve because you have lost a significant dream. But then get up. You’ve got work to do.

    After a few minutes I gathered myself, wiped away the mascara that was running down my face, and returned to the exam room.

    “Will he be mentally retarded?” I asked with a whisper. (That was the acceptable term back then).

    “I don’t like to put labels on kids. It can become a self-fulfilling prophecy. But yes, he will be,” Dr. Buehler said gently.

    “Does he have a normal life expectancy?” I asked. I knew at that moment I could handle anything required of me. The one thing I could not handle was losing him. Whatever challenge or syndrome my child had did not matter. I just wanted to keep him.

    “It will be shortened. By how much we are not sure, honestly,” he said with compassion.

    As I sat in the bathroom stall in Walmart 24 years later sobbing, I realized I have to learn everything all over again. I have to learn to drive our wheelchair van with no wheelchair and no sweet Wesley. I have to learn to grocery shop without my constant companion. I have to learn to drink an entire Starbucks coffee and not save half for him. I have to learn to not receive fifty of the best hugs each day. I have to learn who I am because who I was until February 21st was entirely wrapped up in caring for him. I would have joyfully done it as long as God allowed.

    And the cold, hard, cruel, beautiful, merciful truth is that I did.

    Twenty-four years from now what wisdom will I have that I wish I could speak to the scared, heart broken mother sobbing in a Walmart bathroom? I think it will be something like this…

    Hope is coming. Hold on. This child was your greatest teacher without ever speaking a word and taught you what you need to survive his death. In your weakness He will give you strength. You will use the voice Wesley gave you and you will identify yourself once again and help others. God will give purpose to this pain and you will use it for His Glory. Right now, you are in a new level of pain unimaginable. Gravity feels more powerful than ever because the weight of your grief is physical, emotional, mental, and spiritual. Some days you can’t lift your chin but you must lift your arms in praise. You will want to give up. But then you will persevere. You will become a better mother, daughter, wife, and friend because Wesley was here. He was yours and you were his. This moment is when you begin to allow God to work this, even this, for good. For you love Him and you are called according to His Purpose. Grieve because you have lost significantly and it hurts to the very core of who you are. But then get up. You’ve got work to do.

    When I got home from Walmart I cried some more. I then opened my computer and looked back on my writing from 2018 and found some of what I have edited and shared here now. These words were written 8 years ago to not only share my journey with others but as a roadmap to remind me now.

    When an harmful agitator enters an oyster, it’s natural defense mechanism is to protect itself. If the oyster can’t remove the foreign object, it covers it. It secretes a fluid to coat the harm. Layer upon layer of the coating is deposited until a pearl is formed. It can take months or years but the oyster doesn’t relent. It takes something that didn’t belong and was harmful and creates beauty.

    And once again, there it is, hope is born.

    This isn’t a harmful agitator. This is the death of my beloved son. I know it will take God and time and often, it feels as if they move too slow. But they do move. Layer upon layer what could destroy will become beautiful. Right now it is nothing but destruction and nothing could ever match the cost of losing my child. But hope and solace reemerge remembering how hopeless it seemed all those years ago. Hope presents herself knowing what beautiful pearls came from all I didn’t know and all I feared.

    Unlike the oyster, my natural defense mechanism is not to create something lustrous and valuable from adversity. It is not natural nor my truth. My truth is it takes incredible effort. It takes conscious decisions. I must choose to see the good even when it feels nothing but bad. I must choose to hold on to hope. On some days I choose to hope for hope. I must choose my focus and change it accordingly. I must choose to not allow bitterness and anger come close. I must choose to battle when they come. And they do. I must choose patience to endure. I must choose to hold to the promises of dreams unrealized. I must choose gratitude. I must choose resilience and perseverance. I must choose to be unconquerable. I must choose faith. I must choose the only way I, personally, know how to obtain all those things. I must choose God.

    Each and every time.

    Especially this time.