Patience to Endure

Category: Grief and loss

The Gift I Never Asked For

Holding Grief and Gratitude After Losing a Child

Grief is a thief. She takes from every corner, yet sometimes she leaves quiet, involuntary gifts to families like ours.

Sweet boy, while I am waiting for rebuilding to begin, if it ever does, I wonder who I will become. I will always be your mom and still am to your brothers. And yet it is different now for all three of you.

One of the confusing truths from the loss of you I am left to untangle is that I will be able to be more present for your brothers now. The gift arrived in a way I never would have asked for, sweet boy. Accepting it with gratitude disconnects somewhere between my heart and my mind.

In an empty room of my heart, Grief has left a box in repulsive wrapping. Inside are gifts made possible only in the after.

Sweet boy, our family was necessarily built around you. Your complex special and medical needs required intensive attention. Ignoring or delaying them was never an option. It would have been life threatening to you.

Taking care of you will always be my highest honor, sweet boy, but I missed events for your brothers. I couldn’t take them to see movies very often. Sometimes parent teacher conferences weren’t possible. Performances were missed. Rarely were we able to sit down at a restaurant. We weren’t a typical family.

We still aren’t.

Grief moved in.

Your brothers sacrificed in big ways and small for you, sweet boy. All of us did to give you the best life possible. When the sadness gets too much, I hold to that thought—we did give you the best life possible. You returned the favor a thousand-fold, sweet boy.

I both detest Grief’s gifts, yet I am grateful.

How does a mother untangle that?

Do you remember how we would often go to Target with Nathan? It was one of your absolute favorite outings. On one of those trips, I was unfolding the wheelchair ramp to get you out and saw a family in the car next to us get out and go.

How odd, I thought.

I still had to put your socks on and gather your shoes which you took off the minute we got into the car. I needed to make sure your iPad and sippy cup attached to the chair. You always threw them when you were done. We learned to dodge flying iPads, but it was a serious safety hazard in public.

It wasn’t envy I felt for the family but recognition of a culture vastly different from ours. For us to have their simplicity would have meant we didn’t have you.

And now we don’t.

There are no extra steps to take when we go out. It doesn’t matter if a location is accessible. We can hop out of the car and walk in the store except I don’t want to go. I do not want to be anywhere you are not.

But I wasn’t given that choice.

What I wouldn’t give to be encumbered because it was all in the care of you. It was never heavy. It was our life and you were my world.

Nathan asked if someday we would get to take an airplane. Perhaps we will.

The future and the maps are hidden.

I have been praying for God to open a door or at the very least crack a window. This enclosed room is suffocating. It is dark with only an occasional break from constant shadows. The air is stifling.

Sweet boy, just maybe, He is working on building a house while I am waiting for an open door.

It begins with a gift.

As an act of faith, I pick it up and slowly, gingerly begin to unravel the bow.

Perhaps, in doing so, I will untangle the gift from the means by which it came and try to hold it with gratitude.

April 23, 2026
Bed Rails

Grief has a way of wrecking everything—including priorities. Apathy sneaks in just behind her. Nothing seems important.

How can it be when you are gone?

This morning Grandma said,

Do I look like I care what the floor looks like?

Sweet boy, the floors are not as clean as when you were here. Grandma kept them immaculate because she worried to no end about you crawling. She took her mission to keep you safe and clean seriously. We all did everything we could to protect you from outside harm—we couldn’t stop what happened inside. I am so sorry.

When you did not come home with me from the hospital, sweet boy, my soul went to sleep.

I hope one day I might crawl.

I was so proud when you remembered how to crawl after losing the ability to walk for a while. Nothing ever stopped you. When no one was immediately available to help, you would gently slide out of your chair or off your bed and crawl.

If you were in the bedroom and someone came to visit, as soon as you heard their voice, you would crawl to the kitchen. You reached the people you loved by any means necessary.

That, sweet boy, is the tenacity I need.

On the harder days—most days—I wonder if my story ends with me stuck in bed.

I hear the people I love in the next room. Everything in me wants to slide off the bed and crawl to them.

Grief has the bed rails high.

But God will lower them—in His time.

My soul is in deep anguish.
How long, Lord, how long? Psalm 6:3

Only He is more powerful than she is.

Sometimes, Grief is louder. She is overbearing and chaotic, but I am hearing God’s whispers again, sweet boy.

The final say is not hers.

Bed rails restrict—but they also provide safety. Every night after you fell asleep, sweet boy, I would lift them up to keep you from falling out of bed. Then I would kiss your head and tell you,

You’re my whole world.

Every single night.

My bed rails are not permanently fixed. For now, they keep me safe so I don’t fall while my soul is sleeping. Grief is strong but God can make even her work toward good.

I am not ready, but I will become.

Perhaps soon, I will slide out of the bed.

I will crawl—and nothing will stop me from reaching Him—and those who love me.

Sweet boy, you taught me and you taught me well.

April 21, 2026
A Whisper from Heaven
Sweet boy, I drove one our favorite routes today.

The road has taken some damage over the years. So have I. The view, however, was ever the same.

Grandma and Aunt Dolly went to see a friend from church play at the Batesville Market. It isn’t the kind of place we would have taken you. The building is old and not accessible. I had to carry Aunt Dolly’s walker up a few stairs and then help guide her as she climbed.

It felt good to care for someone, even slightly, the way I did for you.

After leaving them settled, I went straight instead of turning around to get home. You loved our drives—especially that stretch of road. We would listen to music and on nights like this we would have rolled down the windows. I can still see you—mouth open smile and eyes squinting—as the wind hit your face. You would shake your head, flap your arms, and bounce with delight.

The road is long and winding with majestic mountain views. There are historic homes, gigantic mansions, and farmland with cows and horses. It is quintessential Virginia.

I sobbed.

Please God, give me something, anything.

Relieve this pain even a little.

Give me peace. Let me know You are here and I am not alone. A sign.

Anything?

He was the best part of me, my whole world, and you took Him. Why? Why would you do that to me?

I am here. Your daughter. Your child is alone and hurt and scared. Won’t you do anything at all to help me?

Please God. Please.
```
Sometimes He calms the storm. 
Sometimes He calms the child. 
```
Sometimes He does nothing.

Or so it feels.

Grief has revealed a depth of my soul I never knew existed—where tears and agony are abundant. Or perhaps she found the now empty place where you once were and settled right in.

When God took you back, sweet boy, your heart became infected with bacteria. It spread everywhere.

When God made me stay, my heart became infected with Grief. She invades everything.

At the end of the drive, I dried my tears and ended my lamentation with:

I am holding on to You anyway.

I was surprised Grandma and Aunt Dolly wanted to stay the entire time. It tickled my heart to envision two ladies in their eighties hanging out listening to jazz on a Friday night.

When I left a couple of hours later to pick up them up, I stood at the car and looked up at the beautiful spring sky. This time of year, every part of creation announces the new season—even the stars.

Okay, God. I am asking again for a sign. Would You show me a shooting star? At least let me know I am not alone.

Sweet boy, wouldn’t you know one appeared as soon as I finished asking?

It wasn’t particularly spectacular in brightness or length—just a whisper and had I not been looking at that exact spot in the sky I might have missed it.

The feeling might not last, but it came and that matters.

It is a lifeline I can grab when the abyss comes—and it assuredly does.

I miss you, sweet boy, more than I ever knew a heart could.

At this point, living captive by Grief for eight weeks, I will take promises yet to be.

For the first time I thought—

just maybe,

I am going to be all right.
April 17, 2026
The Direct Line
Sweet boy, last night I went to check on Grandma as she was in the garage, re-organizing. She has always loved projects but since you left, they are her lifeline. For her, Grief is temporarily hidden by keeping busy. There isn’t enough busyness in the world, though, for Grief to remain quiet.

Every morning I sit on the couch waiting for the morning sun. I have been hunting for even the smallest enjoyment. It can feel like a drop of water for a ravenously thirsty soul. Over time and with intention, I pray, those drops just might add up to a glass of water.

Grandma sat down on the edge of the coffee table. Her tiny body held enormous grief as her eyes welled up. She told me every morning she wakes up in a panic because she feels one of you boys missing. At eighty years old, her brain takes a few minutes to process exactly what that feeling is and who she cannot find.

You are gone.

In those few seconds while she tries to become oriented and discover who is missing, you are still here—until reality crashes down, and trying to subdue Grief becomes unsustainable.

When I looked in on her in the garage last night I said, “Are you ok?” in the exact tone of silliness I used to say to you.

Are you okay, Wesley. You ok?

You would laugh so hard.

Here in the after, without you, there is no place for our silliness to go. I grab little glimpses when it slips out—like a single hiccup I didn’t expect that startles me.

When you were here, sweet boy, our home was filled with silliness in equal measure and importance to the very air. Our favorite sound was your laughter, and we did anything to hear it. You would laugh so hard and turn blue. I would have to remind you to breathe.

Do you remember when we lived in the ICU for one month? It was the day before your open-heart surgery and Steve had you laughing so hard your oxygen dropped to below 88. The nurse came running into your room, worried you might be in distress. She was relieved to find you laughing. Steve could always go toe to toe with you in unadulterated silliness.

You were so sick, sweet boy, but even that couldn’t stop your laugh.

If I could have just a pinch of your resilience here in the after.

My heart is sick in a different way than yours was.

I wish desperately I could feel silly and laugh with you again.

Someday, after my last tomorrow, I will.

The house is horribly quiet.

Seriousness weighs heavily in the air where laughter once floated.

I dreamed last night the whole family was at the beach and the roof was on fire. The fire resolved on its own but took the entire roof. We were unprotected. Rain was imminent. We couldn’t find the paper with the phone number for the people who could help. Everyone was scrambling but it was not found.

Like the dream, I feel unsafe in the world but there is still beauty. Unlike the dream, I don’t need a piece of paper to know Who to call for help. I know it by heart.

When you were “actively dying” in the hospital the doctor asked if we wanted a chaplain to come. I declined, saying

I have a direct line.

Over our twenty-four years together, sweet boy, I called on God more times than I can count. Three times I simply asked Him:

Please, God, give me whatever I need for the next part of the journey.

It was the prayer of ultimate surrender from a desperate mother. Only the miracle of healing would keep you here with me, and I did not believe it was coming. There are always miracles, sweet boy, but sometimes they come by God’s definition—morning sun or Grandma’s smile or the new green of spring.

God healed you anyway and you came home from the hospital. Though I am grateful, how I wish He had done it once more.

I didn’t need whatever it was I thought He could give to help the unimaginable. Until now.

And I had it all along.

A direct line.

I cannot escape Grief even in my sleep. She is the most relentless, unforgiving encounter of my life. Here in the after, there are times she is too loud and distorts my end of the direct line. Other times it is my own anger that makes it hard to hear.

Yet I know I can’t disconnect from the very God who is
```
my rock
my refuge
my strong tower
my peace
my portion
my provider
my strength
my only way through this..

So I call. In the questioning, I call. In the anger, I call. In the depths of suffering, I call. For the next breath, I call. In brief flickers of peace, I call. In gratitude, I call. When I don't know what to say, I call.
When all I can do is scream, I call.

Even if I hear nothing in response, I call.
```
On the other side of my call, beyond what I can hear, I know you are laughing.

I will laugh again, sweet boy, if for no other reason than to honor you. We are laughing on different sides of eternity. Laughing was your favorite. I can only imagine it still is.

I will find new ways to be silly.

But for today, seven and a half weeks in the after, I have to remind myself to breathe. Each recovered breath feels like rehabilitation—picking up my direct line is an act of rebellion.

Each time I do I move gradually—never linearly—toward the unappointed day when laughter and silliness are not mere memories.

Grief will not have the final say.
April 16, 2026
The Question
I took Baby to get his hair cut. I think he has grown taller since you left. The hairdresser couldn’t believe he was only thirteen years old. Since we were there, I checked to see if they could squeeze me in. It has been at least two years since I had a professional haircut. They had availability ten minutes after Nathan’s appointment began, so I waited.

Something in me knew.

My anxiety increased exponentially.

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

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

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

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

Do you have other children?

There it was.

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

I have two other boys, but one passed away.

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

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

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

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

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

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

We lived the epitome of “both/and.”

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

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

Seven weeks in the after, I am nowhere near being able to predict when and where she will show up – sometimes with callous ferocity leaving me on the floor in a fetal position. Other times she gently whispers, “I am still here.”
```
She is - 
everywhere...
unpredictable...
vicious...
gentle...
stealthy...
a slow burn...
never ceasing...
```
How will I ever catch her?

Today, she waited quietly to ambush me – in a chair getting my hair cut.
April 13, 2026
The Box That Can’t Be Unchecked
We took our first family trip without you, sweet boy. Baby had Spring Break so we went to New York City to visit your oldest brother, Emerson. It was so quiet in the car. I kept looking in the rearview mirror, but you weren’t there.

My heart saw you signing “trip” and “time” and “work” (the YORK in NYC sounded to you like “work”). My mind perfectly pictured you dancing with your unique groove of thumbs up, head tilting from side to side as you swayed with the most gigantic, beautiful grin. The signature Wesley move. You loved a good road trip but would often get impatient. For you, the joy was definitely in the destination and not the journey. Sweet Boy, the absence of all that was you filled the now empty space where your wheelchair once sat.

We stopped at a market off I -81 for lunch. At one point I couldn’t find Baby and went into complete panic mode, briskly walking through the entire place and even checking outside. Steve tried to calm me down reminding me Nathan is 6 foot 3 and no one could just take him. My mind is so warped from the loss of you I thought to myself someone with a gun could take him. It made no sense but neither does the world.

I found him coming out of the bathroom and threw my arms around him, crying. The world is so unsafe to me right now. That is what happens when the invisible box in our mind gets checked.

People tend to imagine worst case scenario which never really actually happens. Until it does. The very worst thing imaginable that could ever happen in my life did, sweet boy.

You died.

Once that imaginary box gets checked with permanent ink, there is a seismic shift. In that shift the architecture of all you held as absolute – everything you believed unimaginable – implodes. In the rubble knowing when to be afraid and when not to is lost. Nothing feels safe and there is nowhere to hide.

Nowhere.

In the nightmare that transposed reality, lessons shifted from imaginary and hypothetical. What I held as sacred was taken – cruelly, harshly, and without warning – leaving me empty hearted, broken, and confused. I am unshielded. Who is to say it will not happen again?

I hold to the one truly sacred thing I have that cannot be taken – my faith. That is mine alone to relinquish, and though at times I wrestle, I will not relent.

These firsts are difficult. I put on a brave face so our family can still enjoy the trip. When we got to the hotel, I went to the bathroom and sobbed. My Sweet Boy, I cry a lot in bathrooms these days.

We went out for dinner and my eyes teared up at the sight of Emerson sitting next to Nathan.

I have two boys left.

I felt gratitude and longing. Sorrow and joy. Such discordance is exhausting to my soul. Right now they are equal parts. I suppose they will coexist always but somehow, over time, become imbalanced. Prayerfully, it will not always be striking like a slap in the face but become a gentle tap on the shoulder.

Your absence at every family gathering will be there. I do not want that to change because you, sweet boy, deserve that perpetual place.

I learned to drive in NYC because of you, Sweet Boy. I used to be terrified of it but there are so few cabs and Ubers that can take a wheelchair. Not all subway stations have elevators. The only way you could fully enjoy the city was if I drove us around. You made me so brave. I am trying now to be brave without you, but it is infinitely more difficult.

We did not go to Times Square. Honestly, the main reason we ever went was because it was your favorite part of NYC. It always bewildered me how you, with your sensory processing issues, would sit in Times Square exhilarated soaking in all the chaos had to offer.

This time walking around without pushing you in your chair was unnatural. There were stores and restaurants we were able to go to this time that I hadn’t been to in years. You know, Sweet Boy, how inaccessible New York can be. It was strange to be able to enjoy something because you weren’t here.

What is a person to do with that?

Every time I go to the city I feel compelled to go visit Washington Square Park. Some of my fondest memories of a time when life was not so cruel took place there. Your brothers, Steve, and I sat in the empty fountain in the center. I told Nathan the story of when NYU was so small the entire university’s graduation took place there. The art students all jumped in the water of the then running fountain. Though security guards were placed around, the dean of Tisch walked through quietly saying “fountain” over and over encouraging us to defy authority and jump in. It was a tradition, after all. I showed them the place that used to be a cafe where I sat at the table next to Matthew Broderick. We walked past the movie theater where I spent my first night of college watching old Bugs Bunny movies.

We reminisced about Emerson’s audition at NYU and how he walked out to me standing there with giant cones of cookie dough in each hand to celebrate. It didn’t matter to me when I was standing in the long line to get them if he did well or not. He tried and that was worth a celebration.

In the late afternoon we went to Emerson’s fourth floor walkup in Brooklyn. It was another new memory that would not have been possible until the after. Steve made dinner for all of us. Your brothers sat on the couch and opened Pokemon cards. Baby slept over at Em’s apartment and said it was his favorite part of the trip. I love that out of everything we did in NYC, it was the time he spent with his brother that mattered the most.

I have exceptional young men.

Three of them.

It made my heart so happy they have each other still. Your sign for Emerson was an “E” on your heart. For Nathan it remained “Baby” because that is what I told you when I first brought him home.

“Look, here is our baby.” It stuck and we did nothing to unstick it. For that, I am grateful.

I desperately needed the reprieve from Grief. She was kind today and walked behind me allowing me to enjoy the sun, the memories, and time with your brothers and Steve. She only nudged me a couple times, until I laid in bed. Then she hopped right into bed with me and stole the covers.
April 9, 2026