Patience to Endure

Tag: grief

  • The Morning Sun

    The Morning Sun

    When my beloved son passed away four months ago, I knew I would not survive if I failed to find gratitude. My drowning soul knew it was my lifeline.

    The small things were suddenly no longer overlooked. Yet the enormity of loss left me wondering how these tiny, fleeting moments of gratitude might soothe a heart hollowed by grief.

    But I tried. Each morning, I took my coffee, sat on the couch, and waited expectantly for the sun to enter our living room.

    When a caregiver loses their loved one it disrupts life on every level. Our daily routines, our identity, and the enormity of grief are all heaped upon our already exhausted shoulders.

    Finding one good thing, one ritual, one point of gratitude may not seem like much when there is nothing but a seemingly infinite emptiness.

    It takes effort, but it matters. Four months later the sun entering the living room and spilling across my plants has accumulated enough tiny moments of joy that I can breathe, even if just a little, easier.

    What began as an attempt to find the smallest speck of joy will never fill the space my child occupied. But it has helped me to create a new routine and to discover a beauty I had taken for granted. The shadows coexist with the sunlight. They move in tandem, ensuring the plant eventually receives the nourishment it needs without burning the leaves.

    For both the sun and the darkness are temporary. Yet the plant remains.

    Some days light will pour generously through the window, and on others it is hidden behind the clouds. Whether or not it illuminates the room, the sun rises faithfully every morning. Life goes on. As cruel and as benevolent as the truth can seem, somehow, so must I.

    In time, even mourning learns the shape of morning.

  • When The Road is No More

    When The Road is No More

    WordPress reminded me of a blog I posted eight years ago. I wrote the piece below not knowing that I would discover what happens when the second road ends.

    For twenty-four years we drove on our road and were grateful. We knew the alternative would have required the impossible of us and now it has. If life with Wesley was a bumpier road, life without him is a free fall nothingness. It is the surreal, chaotic road of deep drops, roads randomly ending, bridges blown apart, and no way to navigate. It is the stuff of nightmares.

    I am grateful that I always knew the honor of the road we traveled and savored every single mile. It was never a burden or inconvenient. There was inexplicable beauty even though the shadow of a catastrophic event always lingered. It taught us to savor the moment even while living with the reality each one could be the last. And eventually one was.

    I will always remember it with love because we were there together. The road has ended yet the love remains. Even death dare to take something so sacred.

    Two Roads
  • Scripture for the Hard Times

    Scripture for the Hard Times

    There is a level of deep grief and when we are in it, Scripture and platitudes do not help. Nothing seems to help. Four months after losing my precious son I am just beginning to emerge long enough to remember and hold onto some of God’s promises.

    May they encourage you.

  • The Split

    The Split

    This day will take more strength than I thought, sweet boy. I pray it doesn’t take more than I have.

    Today is Mother’s Day and you aren’t here. Thankfully, your brothers and Grandma are, so we will celebrate.

    There is now a split in my Mother’s Day. I will celebrate with two children while grieving one. It is an impossible situation yet somehow, I must persevere.

    I am no less a mother.

    Sweet boy, one of the most challenging parts of grieving you is learning to hold the both / ands.

    Grief and gratitude.

    Joy and sorrow.

    Hope and despair.

    Comfort and suffering.

    Today is surviving them all simultaneously. It is smiling for what remains and crying for what is gone. Often at the same time.

    I cried harder this morning than I have in a few days. I was able to wait until the house was quiet. I am not sure if that means I am getting stronger or learning to carry grief better. Perhaps it is both.

    Over the last ten weeks, I have tried untangling the both / ands of loss. I am beginning to realize it is impossible. So now I sit with them. I accept them. I will, eventually, learn to understand their contradictions and, rather than wrestle with them, relent.

    Do you remember the song you loved that went…

    Do you like lasagna? Yes I do! Do you like popsicles? Yes I do! Do you like lasagna popsicles? No I don’t!

    That is what both / ands are, sweet boy. Two things that don’t go together. Except I don’t have a choice whether or not I like them. It just is.

    Mother’s Day is all about celebrating mothers. But to mothers, it is about the children who made us moms.

    Thank you, sweet boy, for letting me be your mom for 24 glorious years. I am both destroyed and exceedingly grateful for that time.

    Being your mom was — is — my highest honor.

  • The Gift I Never Asked For

    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.

  • Bed Rails

    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.

  • The Direct Line

    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.

  • The Box That Can’t Be Unchecked

    The Box That Can’t Be Unchecked

    We took our first family trip without you, sweet boy. Baby had Spring Break so we went to New York City to visit your oldest brother, Emerson. It was so quiet in the car. I kept looking in the rearview mirror, but you weren’t there.

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

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

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

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

    You died.

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

    Nowhere.

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

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

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

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

    I have two boys left.

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

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

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

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

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

    What is a person to do with that?

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

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

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

    I have exceptional young men.

    Three of them.

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

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

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

  • Out of the Grave

    Out of the Grave

    Sweet boy, today is our first holiday without you. It is one of those days I fiercely fight the tears because if they begin, they will not end. And that isn’t fair to your baby brother Nathan. Holidays can be tinged with grief and not tainted.

    We went to church this morning. I did cry during worship. It was such a strange mixture of tears.

    Sadness.

    Rejoicing.

    Awe.

    Sorrow.

    Hope.

    Gratitude.

    Celebration.

    All of those coalesced into tears I struggled to control. Crying during worship isn’t unusual for me, but today was different. With a still tender heart, I raised my hand in praise. Steve grasped my other hand and Nathan put his arm around me. I was held on all sides.

    Dead things come alive….

    Where, oh death, is your sting?

    The last one got me…

    “Right here,” I thought.

    Something comes out of the grave every time I call You, Jesus…

    “Come out of the grave,” my soul whispered.

    I am the dead thing that needs to come alive.

    Sweet boy, you are alive where it is eternally Easter Sunday. There is never-ending joyful celebration, and it is never hopeful. Hope needs no existence where you are. It is already perfect beyond imagination.

    If God were to, in all His power, allow me to decide – if you stay with Him or come back to me – what would I choose?

    For me, I would want you back.
    I miss my buddy and my entire soul craves your smile, your hug, your laugh.
    You were my ever-present companion and reason for living.
    Being your mom was my highest honor. It always will be.
    Caring for you felt like my Divine purpose.

    And it was, for a while.

    But having you here with me would be entirely selfish. Your ‘here’ included doctors’ appointments and surgeries and medical complexities. It had pain and discomfort. Your body worked so hard. Even though there was so much love, I humbly know it is nothing compared to the tangible, faultless love you now have. Your ‘there’ is glorious. Your body no longer struggles to compensate. Everyone understands you and there is no need for words. There is no sickness. You are with the Great Healer.

    Dead things come alive.

    Something comes out of the grave.

    I will, sweet boy. It will not be as dramatic as standing up and walking out. It will be more like when you got sick three and a half years ago. Critical illness followed by two surgeries including open-heart left you lying in an ICU bed for a month. Your muscles became weak. When you finally came home you couldn’t sit up by yourself. So we started by trying to get you to move your legs in bed. Do you remember we would put on the Wii Fit Dance and stomp our feet? We just wanted you to move even if only a little.

    Once you could move your legs, we dangled them off the side of the bed and tried to get you to sit without support. The first time you flopped right over as if you never sat up before. It took weeks. Just sitting was our victory. I would transfer you from the bed to your wheelchair. You needed my complete support and trusted me to not let go. Eventually, strength returned enough to stand and you only needed me for balance. Months later you learned to walk again with support. Your muscles needed time to recover, strengthen, and to remember. We didn’t listen when the experts said you probably wouldn’t walk again. You were so resilient and persistent. It wasn’t the same as before you got sick, but it was functional and you were proud. I was too. We found a new normal.

    I miss you.

    When you left, sweet boy, my heart got sick.

    My soul was hurt.

    The best parts of me disappeared.
    They are still here.
    I will find them again.

    I am weak.
    But just in the last few days I have started to move my legs.
    I need some time to recover, strengthen, and to remember.
    You taught me how to never give up.
    I still need so much support but eventually I will walk again.

    I will walk right out of the grave.

  • Silence of Saturday

    Silence of Saturday

    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.