The hurt is constant but heavier today, sweet boy. Tomorrow is Easter and I will only make one basket. This will be our first family holiday in the after.
I am hunting for the good.
Every morning I wake up and my first thought is, “He is gone.” My second thought is a prayer. For peace. For comfort. For direction. For the gigantic space to abate even if just a little. For His Presence and Mercy.
Six weeks later and grief is still intense, but I can breathe a little between the attacks. The truth hasn’t settled completely in my mind, but it is almost there. I still hear you sometimes. I fight the reality I no longer have to make sure you are all right. We went to a movie yesterday and there were no arrangements needed for your care. It did not matter it was a long movie because I didn’t have to be home in time to catheterize you. It was detested and unwelcomed. But it is here. I have no choice.
Today marks the day in our faith, sweet boy, that was silent. This is the in between. Death seemed to have won. Resurrection was still to come. We have no rituals to celebrate today – only to call it “Holy”. Was it hopeful? Frightening? Quiet? Wondering? Doubting? Wrestling?
Grief lives most violently in the silence of Saturday. The ripping from this world is done. The victory is yet to be. It only took Jesus three days. How I wish Grief worked that quickly.
But she is stubborn. She is relentless. She is powerful. She likes to take her time.
So, I sit in Saturday. Six of them since you left, sweet boy. I will be stuck here in the violent silence of Saturday with a broken heart for all that was you, my whole world.
Resurrection is coming. I hold to hope. The stone will roll away. Darkness will be swallowed by light. I see the slightest glimmer even as I accept grief will reside with me until I join you, sweet boy, on a beautiful Sunday.
One of your favorite people stopped by today, sweet boy. She is one of mine as well. Walking into the house with a smile, determination, and a bag hanging off her shoulder she said,
“I have some things. I want to pray over you. Is that ok?”
We sat on the couch as she pulled frankincense and myrrh anointing prayer oil out of her bag.
“Can I have your hands?” she asked offering hers as well.
Using the anointing prayer oil she poured them on my:
HANDS
“Father Abba, these are a mother’s hands. These hands have cared for Wesley. They fed him, held his hands, carried him, picked him up when he fell. They have cradled him to sleep and wiped his brow. These are a mother’s loving hands. They have catheterized him, washed him, and cared for his wounds. Though they feel empty, we know you can fill them. I pray you would heal them and give them new purpose when it is time.”
FEET
“These are a mother’s feet. They have chased Wesley around the house. They have pushed his wheelchair through stores and malls and Time Square so he would enjoy life. They have walked around the home in the care of him. They have paced hospital rooms. These feet have walked in your purpose and have followed you. I pray you would give them rest. I pray you would rejuvenate them. May they follow your new path and new purpose in Your time.”
MIND
“This is a mother’s mind. She has worried about her children. She has thought about their well being and solved their problems. She planned Wesley’s days. She advocated and spoke to doctors. This mother’s mind made hard decisions. She learned so much to become licensed to care for Wesley. I pray you would help her to use that knowledge to help others when it is time. I pray lord you would give her peace and healing. Please be close when she is anxious. I pray, in time, you would give her new thoughts of hope and tomorrows. May the memories here become more joyful than painful.
HEART
“This is a mother’s heart. In here her children have lived and forever will. Wesley filled her heart and though he is ok her heart is not. There is an emptiness, God, that only You can fill. This mother’s heart is broken but You hold the pieces. You hold her. She has loved them unconditionally and abundantly. Her heart is hurting now and I pray you would sit with her. I pray you would comfort her and fill her heart with Your love. Give her peace.”
I sobbed the entire time, sweet boy. Crying is my normal these days, but these tears felt different. They were cleansing. They were heavy with grief yet light with praise and had an ever so slight tinge of hope and peace.
My hands are empty. My feet long to be tired. My heart is destroyed. My mind is foggy. For now. We have been talking in our home, sweet boy, about adding “for now” to the end of our sentences. We desperately need hope it is only this twistedly wrenching for now.
Granular relief during global grief.
Our friend gave us a beautiful gesture and powerful prayer of deep love. For over twenty years she has celebrated our family’s victories and reached into the pit especially when your dad died and when Grandpa died. She came to the hospital to pray with us at midnight when you first began crashing. Sweet boy, whenever you heard her voice even from the other room you would crawl out to see her. You loved her because you recognized God’s love incarnate. Like recognizes like.
A friend loves at all times, and a brother is born for a time of adversity
I am rendered incapacitated between yearning for the past and being afraid of the future. The world feels unsafe today. It is gut wrenching trying to figure out where I am and who I am without you.
When you died, sweet boy, until this morning I thought the person I was because of you died too. I loved who I was because of you. I was fierce. I was silly. I was happy and devoted. I was strong. I was your voice and your advocate. I was kind. I could love sacrificially with ease and it was an honor.
I am trying desperately to envision who I am or what I will do now that you are gone. As I watched the morning sun bid welcome I realized I already knew the answer to one of those questions. The person I was because of you didn’t die. She is here. The answer to the second question, what I will do, will be found. First I just stop need to crying.
The untangling of intertwinement begins. My highest honor has and always will be being your mom and caretaker. I am still, always your mom. My role as caretaker, one of which I was extraordinarily proud, did die with you. I grieve you above all and the other smaller but significant loses that accompany including my role for twenty-four years, twenty-four hours a day, seven days a week caring for you. I don’t know how my days and years will be filled without you on so many levels.
I sit in the space of realization and gratitude that who I am and was didn’t die because you did. All the lessons you taught me and the person who was shaped by loving you is here. It would dishonor you to believe the gifts you gave me went to eternity with you. God does leave some things behind. I will find them.
I told you the other day Grandma is organizing my closet so we can put away your things I am not able to sort through just yet. All my clothes are in a huge pile in the middle of the room. She is organizing pants by length and sweatshirts and all the clothes I have accumulated over the years. It helps her to have a project and her tendency toward OCD is satisfied.
In the gigantic pile are ripped, stained t-shirts and church clothes. There are items from the bin store where all the clothes were $2 mixed in with gala clothes bought in boutiques in Chicago. Unusable clothes are intertwined with those of value and sentiment. The process of sorting a mountain of items is tedious and slow moving but necessary. Some will be donated while others cut up to use as rags. Others will hang in the closet until fancier days.
My soul sits in a huge pile in the foyer, the empty spot where you would spend hours each day. All the pieces of me lie dormant underneath an enormous weighted blanket of grief. Several times a day I cry out to God in His mercy to lighten the weight just enough so I can breathe. Some days He does. Some days He does not or perhaps the lifting is so subtle I cannot feel it. I don’t know why He lets this pain crush me but I never knew why He let me have someone as special as you to call my son. I trust Him. I trust the process. I trust I will have the patience to endure.
The morning sun slowly and deliberately lights up the room faithfully just as Grandma diminishes the pile of clothes. The progression is reliable. Sweet boy, the weighted blanket of grief will abate. As my strength returns from the crushing I will sort through my soul pile. I will find her. I will find the woman who only saw the beautiful. I will find my silliness. I will find gratitude with no effort. I will find the joy I had which you taught me to be exuberant over the little things. I will rid the rags and pieces that can no longer fit.
Perhaps I will find something I forgot was ever there. With joyful expectation I dare even hope something new will be discovered that was growing in the darkness under the weight all along. And just maybe that something will open up an unlimited future. It is an excruciating horror to think of a future without you but I didn’t get that choice.
Right now, at this moment in my life, sweet boy, daring to hope in this despair is the bravest thing I can do.
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
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)
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.
Absence is all I hear… Your laughter no longer reverberates through the house. For now, it only whispers in my heart and I long with all my being to hear more, louder, explosive you. The chaos is gone.
Yet you remain
The beautiful fractals of excitement, impatience, joy, and love are flat and cold. Normal is abnormal for us. But love does not vanish. It changes shape- Becomes memory. Becomes breath Becomes the quiet strength that lets me stand here now. What was real cannot be undone. It cannot be broken The smile. The soul-deep laugh The hugs so intense your body shook. Those are stitched into me now just as you were stitched in my womb.
I pack away the medical supplies… The gauze… The catheters… The syringes and extension tubing… The thermometer and pulse ox can go in a drawer. There are no more emergency supplies No more doctor appointments No more labs to track No more fear over every sniffle and every cough
I detest the letting go. I would have gladly done it for the rest of my days. I spent every waking moment in the caring of you. It was my honor and privilege. My purpose and calling. I took pride in the way I cared for you not knowing, all this time My sweet boy, it was you who was caring for me. All I did for you could never match what you’ve done for me. People would often say God knew what He was doing when He gave you to me. God knew what He was doing when He gave me to you.
For you were the pillar. You were the strong one. You were the wise teacher. You were the hero. You were the unrelented soul with an infinite reserve of unconditional love. You were kindness and compassion. You were grace and you were mercy. You were the fierce voice in me that advocated for you and made me better.
You were my whole world and being your mom is, and always will be, my highest honor.
Thank you all for coming to celebrate the extraordinary life of Wesley Thomas Helmbrecht. He always loved a party.
I look around this room and see so many people who meant the world to our boy. You had such significance in his life. The only thing that mattered to him was love. Not money, not power, not status. Just love. And you graciously poured it into him. Words do not express my gratitude for all the laughter, lessons, songs, dances, and love you gave him. We all gave him the best life possible and he returned the favor
Wesley was born on October 26, 2001. We had no idea Wesley would have special needs despite multiple ultrasounds… Despite a father who was a physician specializing in diagnosing fetal anomalies and potential syndromes and despite ultrasounds by 4 other physicians`. God and Wesley held their secret until the moment he was born.
And from that moment he faced challenges. He was a fighter. He was the toughest kid I knew.
In the early days the doctors couldn’t tell me how long I would have him. “Shortened life expectancy” was all they really knew. Every day was a bonus. Every hug could have been the last. Every laugh might be silenced. Any moment could turn catastrophic and it often did. Yet it taught us to cherish things otherwise seen as miniscule. We had no small victories. Every accomplishment was magnificent and we celebrated it as such. It is a blessing and a curse to live each day as if it might be the last.
Wesley didn’t crawl until he was two and a half years old. But just around 14 months he figured out he could roll. He would get around the entire house by rolling, pivoting, and rolling even more. Nothing stopped our boy.
Every since he was little and throughout his life Wes would look to the sky and wave his arms. It would begin with a smile until his entire being bubbled with excitement. I used to ask him if he was talking to the angels again. I wouldn’t be surprised if he was. He had a direct connection. And now, for the rest of my life I will look to the sky, wave my arms, and talk to my sweet angel.
When Wes was eight years old we were walking through the mall and he approached a woman sitting on a bench. Before I knew what he was doing he threw his arms around her and hugged her. A complete stranger. I can still envision her face with tear filled eyes as she said, “you have no idea how much I needed that hug.”
But Wes did. We walked away and I asked Wes if God told him to do that even though I already knew the answer. I have countless of those stories. He was an angel among us.
Wesley attended Albemarle County Public Schools until finishing at Brownsville in 5th grade. He had special friends like Sydney Sherman who invited him to every single birthday party. The teachers wouldn’t put them together in the same class for fear of distraction. I will forever be grateful to that little red headed girl who was nice to our son.
He loved riding the school bus. As luck would have it, he had the same bus driver, Gary Miller, from kindergarten through graduating VIA all but two years. It wasn’t just a bus ride for Wes. It was a party and each and every day Gary delivered our child safely home to us.
Wesley went to the Virginia Institute of Autism in 2011 and graduated in 2023. He didn’t have instructors. He had best friends. He had people who genuinely loved him. And he had classmates who, I know, greeted him on the other side.
For the last 3 years he was home with us full time. From the moment I woke up until the moment I went to bed he was constantly by my side. I intensely cared for him including medications, catheterizations, dressing changes, and g-tube care. Mixed in all that was frequent pauses for hugs. We took care of each other in those moments. Our days were filled with one another.
He demanded his daily outings. Rain, sleet, snow or shine we went out every morning. For a boy who was non verbal he was bossy. He let us know what he wanted and when he wanted it. And if I ever said no his next sign was always, “Grandma”. If mom said no he was pretty sure grandma would say yes. Because she always did.
He spread so much love and joy in every Walmart, Bucees and mall within a 3 hour radius. People were instantly infected with his love just walking past him. He created ripples and changed lives in ways only God and now Wesley know.
Wesley loved music. It was his first word using American Sign Language It was at the very core of who he was – a way of expression that didn’t require words but everyone could understand. We took him to countless wineries, Fridays after Five, and concerts. For his 18th birthday Steve arranged for us to go to NYC to see the Laurie Berkner band. She invited him to a private room to meet the band afterward. It was a highlight of all of our lives. He met Andy Grammar with tickets compliments of the UVA Football Team. One of his favorite songs of all times was “Honey I’m Good.”
In 2011 Wesley’s father died by suicide. My mother left her life in Northern Virginia and moved in to help me. She cared for Wesley and for many years was my partner in raising the boys. She still is. She meticulously prepared his special diet and slept with him every night. She would roll him into breweries on Saturday nights. It was a sight to see. Inevitably, until last Tuesday, each and every night he ended up sleeping on her shoulder. They could not have been any closer.
Almost 7 years ago God brought Steve into Wesley’s life. I knew Steve was the one by Wesley’s reaction the very first time he saw him at the Trampoline park. Wesley screamed with excitement and reached for a hug. He was the best judge of character. He could not be manipulated or fooled. He saw the essence of who you are. I always knew if he loved someone especially, they were special.
Their bond was deep and strong. Their silliness filled the house with screams of excitement and breathtaking laughter. I knew it would take a special man to enter our world and God sent us the best of them.
My aunt Dolly moved in with us a year and a half ago. Wes always loved a house full and she was the only person who would sit for hours and hold his ipad. It could easily be on the table but Wesley loved when someone just sat with him. And she did.
Wesley was loved by his brothers and sisters, Some by birth, some by blood, some by marriage, and some by love. It breaks my heart that Emerson, Nathan, Leah, Aaron, Chrissy and Audrey, baby Chloe, Stevie, and Elayna carry the grief of losing a sibling especially one as special as Wesley. He impacted them and they are changed for having known his love.
Wesley entered UVA hospital on February 17th. At first it was thought to be manageable on a general medicine unit but that quickly changed as the gravity of the illness expressed itself. He fought so hard in the medical ICU with the best doctors and nurses. I knew he was in the right place. That exact unit saved his life 3 and a half years ago. Their care and compassion to my family will stay with us and for that, I am exceedingly grateful. I am at peace knowing it was, as simple and as complex it is to say, his time to go home.
Wesley made our family’s life unique. He allowed us to live in the world of special needs. It was a club I never knew I wanted to be part of but was so proud to be a member. Our fellow citizens are resilient and inspirational. There is an unmatched comradery among people here and you never feel alone. I have met parents who paved the and given me a road map of grieving the most significant loss possible. I have watched them come through the other side and live life again. It gives me hope that we will do the same with the help of our loving God.
Every single night I would kiss Wesley goodnight and tell him he is my world. He smiled every time because he knew that was the truth. My world is shattered yet my faith is strong and I know God will give us the strength, peace, and endurance we need for this unimaginable journey. He already has begun.
As a mother who gave birth to one of humanity’s most extraordinary human beings, I knew I would bury my son. It doesn’t make it easier. It doesn’t make it peaceful. It is raw. It is cruel.
I always knew our time was borrowed. In Christianity we hear words like “our children are on loan from God. They are His.” I think most parents who share our faith understand it is as a concept of spiritual trust but never actually live in that space. It was our reality. From the moment he was born I knew I wouldn’t keep him. I knew in the depths of my heart I would be standing here today. I would gladly bear the pain of losing him 1,000 times over than have him know the pain of losing me. God’s mercy needs untangling sometimes and it isn’t pretty to us, but it is there.
My faith has sustained me since childhood. I buried Wesley’s father 15 years ago. When I spoke at his eulogy I shared the two words I clung to. I find myself in another cruel February clinging to them once again.
But God…
Wesley is gone BUT God generously gave us 24 years… My heart is broken BUT God has given Wesley a new heart, one that can not be infected or fail him… We are devastated BUT God has promised blessed are those who mourn for they will be comforted. And He keeps every promise forever. I don’t know who I am if not Wesley’s mom and caregiver BUT God will give purpose to this pain My children mourn the loss of their brother BUT God has surrounded them with love and friends and one another… I will never feel Wesley’s whole soul hug during this lifetime again BUT God had Wesley give me so many during his 24 to last the rest of mine…
God is good when He says “yes”. God is good when He says “no”. One of my frustrations as a Christian is when everyone declares His goodness because He answered the prayer in the way they wanted. They proclaim it when they see a miracle, the miracle as they thought it should be. A loved one is healed – God is good. A soul is saved – God is good. Catastrophe averted – God is good.
Our son died.
I tell you now…God is good. We still got miracles. They aren’t the ones we wanted but they are here and they are coming. There will be ripples of miracles I will never know. I am honored for the miracle of 24 years with Wesley when I didn’t know if I would get 24 hours, 24 days or 24 months. God didn’t take Wesley too soon according to His timeline. For this mother’s heart it absolutely feels too soon but also feels generous and merciful.
When Wes was a baby we would play a game. I would hold his arms and say, “Oh my where should I?” then I would pause. He would giggle with anticipation. After a few seconds I would exclaim, “tickle!” and tickle him somewhere with my chin. It was one of his favorite games. He waited with joyful anticipation because he knew the hands that held him. He knew they were loving and kind and only wanted to best for him. The empty space wasn’t frightening. It didn’t cause him anxiety. It made him joyful knowing something good was about to happen.
I sit in the stillness of a once beautifully chaotic life. The anticipation is there. Is it joyful? Only because I choose it to be. I choose joy. I know whose hands hold me. I know He is good. I know He is loving and kind and merciful, and generous. I know He will somehow, someway create good. If He could create the ultimate good from the death of His own son, He can and He will with mine.
We had 24 years of bright, unfiltered joy. It wasn’t small. And it is not unfinished. God did not silence that laughter, He opened the room. Now Wesley’s laughter is shared with the angels and saints in the presence of his grandfather and father and our Good, Good Father. His laughter is now joined in the songs of worship around the throne. He stands tall with no balance or strength issues. There are no wheelchairs in heaven. There are no doctor appointments or bad news. There are no challenges to overcome in heaven. Just love. Just unfiltered, untarnished, inexhaustible, exuberant, lavish love. Wesley was, no doubt, right at home there because that is how he loved us here.
I close with a verse, a hope, and an assurance. 2 Timothy 4:7-8
I have fought the good fight, I have finished the race, I have kept the faith. Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day.
Our boy did fight the good fight. His race was harder than most and he never complained. He never felt sorry for himself. He carried what was given to him and just loved. I know his crown is spectacular. It is well earned. I will always remember the grace with which he carried his challenges and lavishly loved not in spite, but because of them.
I always said we spent so much time trying to make Wesley more like us when, really, we should be more like him. I urge you all to be more like him. Laugh loud Love hard Hug Tight Dance Silly Leave the room better than when you came not because you were loved, but because you loved. And do it with all you have for as long as you have. Just like our sweet, sweet boy. In that his story in us is yet unfinished.
I confess. I lost myself for a while. When someone would ask how I was I would begin speaking about how the boys were or my mom or my husband. I have one friend who would always stop me and ask, “but how are YOU?” I never really knew how to answer that question. I didn’t know how I was. I didn’t know who I was. I lost her somewhere along the way during the last three years.
I have been a caretaker in some way for the last 26 years. It intensified 23 years ago when our son with significant special needs was born. It then intensified dramatically 3 years ago when he became very ill and spent a month in the intensive care unit. During that month we were told three times he was not going to make it. Thankfully, he and God had a different plan but we emerged with new medical needs. There are now medications throughout the day, intermittent catheterizations, diaper and dressing changes, doctor’s appointments and documentation. Our son is cognitively 3 in the body of a 23-year-old man with all the perils and potential hazards to be considered when caring for a toddler.
Being the caretaker of another human is a divine calling. It is a gift and one for which I fervently prayed, begging God to just let our son stay and to allow me to continue to care for him. Yet the awesome responsibility of another life and their literal ability to stay alive is brutal. It is exhausting. It demands all of you and then a little more. Getting lost is easy.
It is a different life and very difficult to offer glimpses to those who do not live in my world. So much of my time is devoted to tending care that it is far too easy to forget who I am outside of those duties. Without intentionally taking space for myself, I can get lost easily and without even realizing it because all I can do is what is necessary to get through each day. To me, a luxury is a shower or to eat an entire meal without getting up. Self-care is not going to the spa or a winery or attending a concert. In my life self-care is basic hygiene and some days I do not even accomplish that.
It is quite the conundrum. Some days it is an impossibility. I so intensely care for another there are days it is simply impossible to care for myself or others I am blessed to love. Relationships can be difficult to attend to in the way they demand or deserve. We sacrifice people and plans we don’t want to forego yet my purpose demands it.
In my experience, most of the time, life will gut you to get you to remember who you are. It will strip you down. It will seemingly mercilessly distill you to the basic element of who you are.
When I was in college, I had an organic chemistry professor who could not get across to the class the importance of distillation before we began the experiments. It was a night class and most of us had full time jobs. To us it took too much time to do the extra steps. We were already tired from the day. No one wanted to be there a moment longer. It didn’t matter much for the integrity of the course we needed to make sure what we were using was the purest substance and how it was intended to be.
Distillation is an imperative step used “primarily to separate substances from the mixture to allow for purification or the concentration of a desired component.” It will rid the solution of any potential compounds not necessary for the goal to be achieved. One night our professor intentionally contaminated our solutions so if we did not go through the distillation process, we would conclude the incorrect answer. Every single person in my class that night got the lab wrong. To each of us he simply said, “It must have been contaminated.”
The distillation process takes heat. It takes time to get to the boiling point and to get rid of what does not belong. It takes patience and waiting during the process. But once all of those unnecessary contaminants are gone, the element we are testing is reliable. It is true. It is pure.
I sit on my couch on a sweltering hot day. The temperature outside is frigid compared to what it feels like in my soul. This was not a voluntary distillation. Life does what life does. Boiling points have been reached. That which does not matter melts away and I am left with inspecting the elements that are left in their purest form.
I remind myself the distillation process does not obliterate. It gets rid of the residue. It tests other components. It allows you to separate and discard. It voids contaminants. It is re-birth.
The distillation process rids me of beliefs about who I am which I have picked up along the way. Some of them were true yet I want, I choose, to leave behind in the residue. Some were never supposed to be part of the compound. They were not mine to hold and could only harm me.
I look in my flask. I see what is left. It is all those things no one can take from me and I only lose when I give them up.
The process also rids me of names thrust upon me by others and by myself. They are contaminating lies. And so, I cling desperately not to who others say I am or even who I say I am. In my flask all that is there now is who He says I am.
I stand up off the couch. I take a deep breath. Gratitude fills my being. Distillation is a gift. It is in the letting go we are left with all we ever actually needed. My list and your list are the same. Our truths are endowed by our Creator as we were stitched in our mothers’ wombs and they are irrevocable. No amount of loss, heart ache, trauma, worry, anxiety, or difficulty changes what you and what I will find at the end of our distillation process.
Because at the end of our prayers regardless of whether God has said “yes” or “no” is new life, a new opportunity to begin again building upon the blocks of what is mine and who He says I am. That is a pretty good place to start, I’d say. And so I do. One step ever onward.
Patience to Endure 