Patience to Endure

Tag: child loss

  • 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.

  • A Whisper from Heaven

    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.

  • 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.

  • Yet to Be

    Yet to Be

    Waiting for the corner

    just a glimpse

    so I can see where I might turn.

    Where the tears will slow

    and my heart will beat

    without the pain of breakage.

    Unaccustomed to this stasis

    the corner seems but a dream

    So I lean

    I lean into the grief

    I lean away

    I sway in the numbness

    but a momentary relief

    I am not asking for rescue

    nor do I dare expect release

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

    yet somehow it does.

    Each morning’s first thought is

    I don’t want to live in a world

    where you are not

    and fear the grief will take

    up residence and abscess my heart,

    the valve will fail and the dominoes fall

    But your brothers have lost a brother

    They cannot, will not, lose a mother

    From the couch I launch my battle cry

    It is a sobbing whimper but a defiant sound

    nonetheless.

    A yawp yet to be