Patience to Endure

Tag: inspirational

  • 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 elusive breeze,

    desperate to feel

    perhaps you are still somehow here.

    Finding only space and tears

    I seek your face,

    your smile,

    your laugh.

    My soul refuses to let go.

    Connection so intricately intertwined

    cannot easily be undone

    even by death.

    Enveloped by quietness and detested calm

    cohabitating with cacophony and chaos and uncontrollable ache

    as grief rages even after surrender

    In the land of yesterday

    is where I find you

    Memories palpitate…

    Your first heartbeat began in my womb

    Your last ended in my arms

    Oh the blessed moments in between!

    During sunny moments of my soul

    though few and fleeting

    I see you skipping on the other

    side of my last tomorrow.

    I see your face,

    your laugh,

    your smile

    Unencumbered and unrestrained

    Just as you were in our yesterdays.

    All that has changed is which side

    of eternity each resides

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

    that separates me from you.

    It is a chasm, an inconceivability, an anguished reality

    that separates you from me.

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

    Time dare not steal one single expression or smile or embrace

    And I will see you again

    In the land of my last tomorrow

  • Hugs

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

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

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

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

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

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

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

    “Can I hug you?” she asked.

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

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

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

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

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

    “This is so much worse,” I cried.

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

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

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

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

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

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

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

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

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

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

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

  • And There She Is

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

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

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

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

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

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

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

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

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

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

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

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

  • Yet to Be

    Yet to Be

    Waiting for the corner

    just a glimpse

    so I can see where I might turn.

    Where the tears will slow

    and my heart will beat

    without the pain of breakage.

    Unaccustomed to this stasis

    the corner seems but a dream

    So I lean

    I lean into the grief

    I lean away

    I sway in the numbness

    but a momentary relief

    I am not asking for rescue

    nor do I dare expect release

    only hope that it can’t, it won’t, get worse

    yet somehow it does.

    Each morning’s first thought is

    I don’t want to live in a world

    where you are not

    and fear the grief will take

    up residence and abscess my heart,

    the valve will fail and the dominoes fall

    But your brothers have lost a brother

    They cannot, will not, lose a mother

    From the couch I launch my battle cry

    It is a sobbing whimper but a defiant sound

    nonetheless.

    A yawp yet to be

  • 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

  • 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.

  • Three Minutes

    I’ve been thinking a lot about grace, mercy, and forgiveness lately.

    Last week I got a phone call disguised as my worst nightmare as the parent of a non verbal child with special needs.

    The voice on the other end used words…

    Adult protective services…
    Complaint of neglect…
    Investigating whether substantial…
    An incident on May 3…

    A person hired to care for Wesley failed to do so.

    The investigator came to the house forty-five minutes later. She told me she reviewed the video. For three minutes he was in danger. For three minutes he was ignored.

    The overseeing entity was apologetic. They were transparent. They showed me the video. I hoped it wasn’t as bad as I imagined. But it was.

    I cried. It was heart-wrenching to watch my child struggle. He tried to fix himself but didn’t have the strength. He looked scared. She was less than three feet away. For three minutes he was in danger. For three minutes he tried to get her attention. For three minutes she never even looked at him.

    Another employee not assigned to Wes is the one who saw. Three minutes could have been longer if not for her.

    As upset as I was, I felt compassion for the employee. I asked how she was. I knew she didn’t maliciously ignore Wes. On any other day three minutes might not have been as big of a deal. It was just on this day in those three minutes my son could have been seriously injured or worse. On this day the negligence of those three minutes put my son at serious peril and video captured it.

    The director told me the actions taken to ensure it wouldn’t happen to Wes or any other student. She apologized again. She thanked me for being understanding and forgiving. She said most people would not be.

    I was upset. I was livid. I told her this…

    “My faith is important to me. I am called to forgive. Nothing irreparable happened but even if it did, I have to forgive and show mercy and grace because I have been forgiven and I have been shown mercy. I have received grace even when I didn’t deserve it.”

    Having faith and professing to believe something is no more challenging than when it is inconvenient and when we have been wronged, whether intentional or otherwise. It is exactly then it matters the most.

    My actions deny my emotions. In that moment when anger holds the weight of me, I choose mercy and grace and in that moment I make my Father proud. My children see their mother put down the almost unbearable weight of anger which can only grow bitterness, resentment, and contempt. They bear witness to a mother who chooses to walk in freedom with Grace rather than be dragged by anger. I pray they will do the same.

    And so, without reservation or condition, I forgive this person. I wish her only the best. And when she has the opportunity to show someone else mercy and grace, I hope she does.

    Grace isn’t just for the person who, though unintentionally, wronged us. It is for me and I will gladly, joyfully, and gratefully walk in that the rest of my days.

    (more…)