Category: Faith

  • Empty

    Empty

    It is another beautiful day, sweet boy. I feel a little steadier today. Still so very sad and lost but steady in this place.

    Steve took me to the Overlook Produce to look at plants. I was afraid of how I might react when I saw Buc-ees across the street. How you loved that place! You would sign “mouse” and “cheese” to let me know when you wanted to go there which was more often than we could. You were so clever and thought Buc-ee was a mouse and knew it sounded like “cheese”. You had your own language and I was privileged to understand.

    We would get your favorite banana pudding and drive to the Harrisonburg Mall. I would intentionally park at the Old Navy entrance so you would have to use your walker the full length of the mall to the food court. You were always very food motivated. You would sit there and enthusiastically eat every bite while waving to people around us. I will forever remember the staccato movements you would use to scoop the pudding to get as much as possible in one spoonful.

    As we drove today I felt an emptiness. It is always present but this was different. From the years of helping with Grief Share I often heard people speak of the relief that came when they didn’t have to intensely care for someone any longer. They weren’t happy their loved one was gone but they felt a sense of alleviation to not have the responsibility.

    I looked out the window at the mountains in the distance. I didn’t have that feeling I held for twenty-four years. Even when you were in school or we were apart I never settled. At night I slept lightly always with the ringer on because I knew at any moment you might need me. You were ever present in all I did. I was always at the ready and now that I find no relief to no longer be.

    I find it empty in this place. The awful emptiness where something valuable and important was and now nothing remains.

    I got home and the basement door was open. You are gone and now we don’t need to be sure you can’t access the stairs. Scissors lay gently on the coffee table where they could never be for fear of you finding them and getting hurt. I no longer scan the floor a thousand times a day seeking small objects you could ingest. Almost a quarter of a century of diligence all for you are no more.

    There is no relief. Only a vast emptiness where the hypervigilance once sat and never slept. See, in that space was where I loved you best, where I protected you from anything that could harm you. The two things, however, my sweet boy, I could not protect you from was your own body and God’s timing.

    To me, they were both beautiful and awful and merciful and cruel. I miss you endlessly

  • Church

    Church

    Steve and I went to church today with the “baby.” When I brought Nathan home from the hospital thirteen years ago I taught you the sign for “baby”. It didn’t occur to me then that someday you would still be calling the six-foot one teen age brother “baby”. You loved it when he came with us on our outings, especially Target. He loved playing with you and giving you hugs. He hurts deeply now that you are gone.

    I have been reading about “care giver crash” lately. It isn’t a medical diagnosis but is a psychological and physical collapse that occurs when prolonged caregiving suddenly stops. I guess my body was in chronic survival mode. It helped me to stay alert, sleep lightly, and wake quickly so I could care for you. The adrenaline, hyper-alertness, cortisol, and purpose I had for twenty-four years are cruelly and abruptly no more. Apparently it is my nervous system’s way of finally saying “It’s safe to stop now” and years of exhaustion surface all at once. I detest it.

    Then the collapse… exhaustion, bodily heaviness, trouble concentrating, waves of grief, headaches, muscle aches, sleep disruption, feelings of disorientation. Unbeknownst to me, my nervous system was carrying a huge load for a very long time. It didn’t feel like it because it was all in the care of you and it was my honor.

    Add grief over losing you and gravity is much more than 9.8 meters per second squared. Even the weight of my body in the world is different. Steps are heavier. Sitting up feels like exercise. Everything is a challenge.

    When your big brother Emerson was little I remember watching an anime with him where the hero went to another planet to train. The gravity was much heavier so when he went back to his original planet he was stronger, faster and could jump higher. The extra gravity worked to his advantage. Perhaps that will be my case. I hold on to hope still yet.

    But I went to church today. Gravity made it hard to stand. The music started. I lifted my chin and sang the words. As if enveloped in thick mud it took all my strength but I did it, sweet boy. I raised my hands in worship. Worship isn’t an emotion. It is not a feeling. It is a necessity and I felt better for it knowing God is worthy and realizing you are on the other side of eternity singing praise. For a moment, once again but altogether different, together we sang.

    We were going to go out to eat with Grandma and Aunt Dolly later but I just couldn’t. We never did that before because the few times I did go to church I always had to go straight home to catheterize you. Today wasn’t the day to start that tradition. It just didn’t feel right yet. It may never feel right but, I hope, it will eventually feel less wrong.

    On the way home Aunt Dolly started coughing. I still said out loud “Aunt Dolly coughing. Better do something!” even though you weren’t in the car to laugh. Do you remember how I started that game because you would get scared sometimes when you started coughing? Whenever you were scared we would make a game of it and suddenly the fear was replaced with laughter. The unintended consequence was every time you heard someone cough you would laugh.

    I came home and collapsed to the couch. The doorbell rang and it was a friend who has traveled this road. She gave me a book and told me it helped her on her journey. There is something profoundly beautiful when someone who has walked through hell comes back, holds out her hand, and shows you the way.

    find me there.

    where sunsets glow

    but it never gets dark.

    where pain doesn’t exist

    and comfort is always felt.

    where everything you’ve ever loved

    finds its way back to you in the end.

    the place you went to when

    your heart fell asleep.

    my time will come

    to see you again

    and you can

    find me

    there.

    sara rian

    I am so lost without you, my sweet boy. It is an agonizing pain worse than anything imaginable. I find solace that you don’t feel this pain and you are where it is never dark and all you know is comfort. And someday, my child, you can find me there.

  • It Isn’t Just Walmart

    It Isn’t Just Walmart

    I ventured out for the first time in almost two weeks since my precious son passed away. We drove to a Walmart 30 minutes from our home, one he did not go to on our daily outings. I thought it might be easier. I thought wrong. Walmart is Walmart.

    We walked in. Deep breath. Two more steps. Exhale. I can do this. I can grocery shop.

    I glanced to my left and saw the bakery section. We used to pick out muffins and cakes to mix with his pudding. He loved lemon, red velvet, and chocolate. My heart sees him lying in bed. He increasingly and aggressively signs pudding as his patience waiting for it wore thin. The boy could yell at me in sign language. How he loved food.

    Deep breath. Two more steps. Exhale.

    The tears fill my eyes.

    Steve, my husband, wraps his arms around me. “I am here,” he whispers.

    The tears are almost uncontrollable now.

    Grocery shopping felt like a violation, a betrayal, a foreign country. It has been years since I went without pushing him in his wheelchair. Almost a quarter of a century talking to him constantly and asking his opinion about choices. Decades of playing “Woah Wesley” when he was ready to go but I still needed to shop. He would from angry screaming to laughing without taking a breath. Only he could turn an ordinary trip to Walmart into a joy filled, love tossing extravaganza.

    A woman came up to us not too long ago in a Walmart.

    “Can I give him something?” she asked.

    She must have seen the confusion on my face because she continued.

    “I have been watching you and your son. I have never seen someone so full of love and so loved. I just want him to have something. I have this gift card. Will you buy him something?” she asked.

    We hugged. That was the magic of Wesley. His presence, his joy, his love could leave two people hugging in Walmart, grateful to have crossed paths and being forever changed by it.

    Wesley picked out a “Bluey” hooded sweatshirt with the gift card. It sits untouched now in a drawer I cannot open. Not yet.

    The tears now are uncontrollable.

    “We can go back to the car,” Steve tells me as I cry on his shoulder.

    “I have to do this. I have to learn,” I tell him even though I wanted nothing more than to run to the car, cry, and never go to Walmart again.

    The pain, I knew, would be there today, tomorrow, next month. Time would not make unentangling myself any easier had it been postponed.

    The grief inside me was irrepressible. I quickly walked to the bathroom, closed the door, and collapsed sobbing.

    It wasn’t the first time I cried in a bathroom over Wes…


    When Wesley was three weeks old Gary, my (now deceased) first husband, and I along with Wesley and his older brother, Emerson, traveled to Omaha, Nebraska to see Dr. Bruce Buehler. He was board certified in pediatrics, pediatric genetics and pediatric endocrinology. If anyone could tell us what Wesley’s diagnosis was, we hoped, it was Dr. Buehler.

    The nurse showed us to a very large room with a small table for the children to play, some books, and an exam table in the corner. I sat at the little table next to Emerson, then two and a half, as he watched Shrek on his portable DVD player. How I wished I could be as he was, oblivious to the gravity of the situation.

    I could hear cowboy boots coming from down the hall. The sounds grew louder as he turned the corner, entered the room, and with a smile stuck out his hand to greet us.

    “Dr. Buehler,” Gary said extending his hand.

    “Call me Bruce. No one calls me Dr. Buehler except my wife and that is only when she wants me to take out the trash,” he said with a deep belly laugh.

    He motioned to the table and we sat down as he opened Wesley’s thick chart. By the time we found our way to Omaha the list of abnormalities discovered within Wesley had grown. New doctors had been introduced and before he was even three weeks old Wesley already had a pediatric urologist, neurologist, cardiologist, and gastroenterologist. He had a social worker, a speech therapist, and an occupational therapist. I had to purchase an expandable accordion file to keep track of all his medical needs. The fuller the file became the emptier my heart felt realizing how much my tiny baby had already been through and was yet to face.

    A colleague of Dr. Buehler’s joined us and they asked me to place Wesley on the exam table. As a mechanic inspects a car, they examined every inch of his little body.

    “He has a high arch and cleft palate. Did you know that?” the other physician asked.

    I shook my head somberly no. Another anomaly.

    They excused themselves to confer. Shrek played. His father and I could not speak. We knew when they came back in through the door, our lives would forever be altered.

    After roughly twenty minutes they returned with two textbooks in their hands. Dr. Buehler flipped open the gigantic, blue book. With delicacy he looked at each of us and said,

    “We believe your son has Rubinstein-Taybi Syndrome.”

    Syndrome.

    The room began spinning. Words became incomprehensible even though we walked in that office suspecting he had a syndrome. Gary was a maternal fetal medicine specialist. They had a “rule of thumb” when it came to anomalies. One was probably nothing. Two might be something. Three was almost always a syndrome. Wes had more than three, but when it was confirmed by a triple board-certified physician my entire world collapsed. As if hope, no matter how small, was the only reason my world continued to spin in the only direction I had ever known.

    Then he said it. Syndrome. An obscure, uncommon Syndrome.

    The clinical definition is “a group of signs and symptoms that tend to occur together and characterize a particular condition.” The emotional definition in my heart was “unknown everything” and it was scary. It was world shattering.

    I could not have known then that the words he spoke would actually be my greatest blessing. It would bring me immense heart ache but also extraordinary joy. It would shape me into a better mother, wife, daughter, friend and human being. Later I would pinpoint that one sentence as the moment in time I began to become who I was meant to be. As it was happening, however, the only thing I could feel was utterly and completely crushed.

    I excused myself to the restroom just across the hall. Closing and locking the door behind me I collapsed to the ground sobbing. How could my life, I wondered, have changed so dramatically and drastically in the amount of time it takes to hear a single sentence? I stayed curled up on the cold, bathroom floor for a while weeping for all I lost. My dreams and my family’s future, I thought, were gone. I could not imagine I would dream new dreams and be given a future far more glorious than one I could have ever created for myself. But hope, you see, had not yet been born.

    How I wish I could speak to that scared, heart broken mother there on the floor with all the wisdom I have found over the last twenty something years. I would say…

    Hope is coming. Hold on. This child will be your greatest teacher without ever speaking a word. In his weakness you will find your strength. You will be his voice and fight for him with all you have. You will reach a new level of exhaustion. You will want to give up. But then you will persevere. You will become a better mother, daughter, and friend because he was born exactly as he is. This isn’t the worst day of your life. This is the day you become who you were meant to be. Grieve because you have lost a significant dream. But then get up. You’ve got work to do.

    After a few minutes I gathered myself, wiped away the mascara that was running down my face, and returned to the exam room.

    “Will he be mentally retarded?” I asked with a whisper. (That was the acceptable term back then).

    “I don’t like to put labels on kids. It can become a self-fulfilling prophecy. But yes, he will be,” Dr. Buehler said gently.

    “Does he have a normal life expectancy?” I asked. I knew at that moment I could handle anything required of me. The one thing I could not handle was losing him. Whatever challenge or syndrome my child had did not matter. I just wanted to keep him.

    “It will be shortened. By how much we are not sure, honestly,” he said with compassion.


    As I sat in the bathroom stall in Walmart 24 years later sobbing, I realized I have to learn everything all over again. I have to learn to drive our wheelchair van with no wheelchair and no sweet Wesley. I have to learn to grocery shop without my constant companion. I have to learn to drink an entire Starbucks coffee and not save half for him. I have to learn to not receive fifty of the best hugs each day. I have to learn who I am because who I was until February 21st was entirely wrapped up in caring for him. I would have joyfully done it as long as God allowed.

    And the cold, hard, cruel, beautiful, merciful truth is that I did.

    Twenty-four years from now what wisdom will I have that I wish I could speak to the scared, heart broken mother sobbing in a Walmart bathroom? I think it will be something like this…

    When I got home from Walmart I cried some more. I then opened my computer and looked back on my writing from 2018 and found some of what I have edited and shared here now. These words were written 8 years ago to not only share my journey with others but as a roadmap to remind me now.

    When an harmful agitator enters an oyster, it’s natural defense mechanism is to protect itself. If the oyster can’t remove the foreign object, it covers it. It secretes a fluid to coat the harm. Layer upon layer of the coating is deposited until a pearl is formed. It can take months or years but the oyster doesn’t relent. It takes something that didn’t belong and was harmful and creates beauty.

    And once again, there it is, hope is born.

    This isn’t a harmful agitator. This is the death of my beloved son. I know it will take God and time and often, it feels as if they move too slow. But they do move. Layer upon layer what could destroy will become beautiful. Right now it is nothing but destruction and nothing could ever match the cost of losing my child. But hope and solace reemerge remembering how hopeless it seemed all those years ago. Hope presents herself knowing what beautiful pearls came from all I didn’t know and all I feared.

    Unlike the oyster, my natural defense mechanism is not to create something lustrous and valuable from adversity. It is not natural nor my truth. My truth is it takes incredible effort. It takes conscious decisions. I must choose to see the good even when it feels nothing but bad. I must choose to hold on to hope. On some days I choose to hope for hope. I must choose my focus and change it accordingly. I must choose to not allow bitterness and anger come close. I must choose to battle when they come. And they do. I must choose patience to endure. I must choose to hold to the promises of dreams unrealized. I must choose gratitude. I must choose resilience and perseverance. I must choose to be unconquerable. I must choose faith. I must choose the only way I, personally, know how to obtain all those things. I must choose God.

    Each and every time.

    Especially this time.

  • My Highest Honor and Deepest Heart Ache…A Eulogy

    My Highest Honor and Deepest Heart Ache…A Eulogy

    The silence stings.

    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.

  • Left

    Left

    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.

    Raw. Pure. Painful. Beautiful. Unimaginable. Overwhelming. Necessary.

    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.

    Love. Integrity. Faith. Hope. Purpose. Peace. Truth. Determination. Perseverance. Gratitude.

    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.

    Beloved. Precious. Worthy. Loved. Redeemed. Accepted. Chosen. Child. Heir. Known. Masterpiece. Temple. Justified. Sanctified. Conqueror. Light. Friend. Creation. Created for good works. Family. Strong. Overcomer. Blessed. Blameless. Sealed. Complete. Hidden. Raised. Free. Victorious.

    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.

  • Three Minutes

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

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

    The voice on the other end used words…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

    (more…)
  • Perseverance

    Perseverance

    Perseverance: continued effort to do or achieve something despite difficulties, failure, or opposition.

    Today is a date of remembrance for me and my children. It is a date that has lost power over the last 13 years but will remain, for the rest of our lives, as a date of life altering, horrific, and traumatic importance.

    Thirteen years ago today my first husband committed suicide. Now, this day, I remember and am in awe of what I endured and the perseverance it took to not let the darkness swallow me.

    Sometimes perseverance isn’t glamorous. It doesn’t happen with some inspirational song playing in the back, sweat pouring from your brow as you conquer the challenge before you. Sometimes, it is just sitting up in bed. It is taking a shower or eating something. It is just staying in one place and not letting the gravity of the situation pull you one inch backward. Sometimes, it is that quiet cry to God to help you sustain just one more minute. Those one more minutes add up to days, then weeks, then months, then years.

    And you look at the path from which you came and are so very grateful.

    After my first husband died several people said, “You won’t even remember this first year,” as if it was some sort of consolation I had been so traumatized my brain would block it out. So I wrote. I wrote everything down because I wanted to remember. I wanted to never forget all the gigantic and miniscule ways God was there. In every moment capturing every tear, He was there.

    I share now some of my journal from that day. Incredible blessings, unexpected, have since come in the form of an old friend who became my husband. It also gut punched me with almost losing Wesley, our sweet son with special needs, during a month long stay in the ICU with all the drama of a television show. My father passed away and with that my protector and life will never be the same.

    One of my favorite quotes is from Robert Frost:

    In Three Words, I Can Sum Up Everything I’ve Learned About Life. It Goes On.

    It does. And I go joyfully, gratefully with it. Yet on February 10, I remember…

    Extraordinary Sacrifice

    “God whispers in our pleasure, speaks in our conscience, but shouts in our pains. It is His megaphone to rouse a deaf world.”  C.S. Lewis

    I walked back downstairs into the basement and turned the corner into the theater room.  My eyes were immediately drawn to the double door and I noticed it was unlocked.  As if punched in the gut, I could hardly breathe and something in me just knew.  To this day I still do not know why but I ran straight outside.  With no socks or shoes, without a coat, I ran into the cold, heartless February air leaving the door behind me wide open.  I ran as I have never run before.  I did not know where I was going, only that I was going to find him.  My determined feet carried me to the barren spot down the hill in the woods behind our home. There he was, my husband and father of my children, dead.

    I screamed an expression I did not know my voice could make.  It was a desperate cry that came from a place inside me I did not know existed nor had I ever fathomed to realize.  Nothing but that exact combination of shock and desperation could replicate the sound my soul was making.  It was not a groan nor was it a scream.  It was a unique sound all together and I couldn’t believe it was coming from me.

    His eyes stared blankly at the cloud filled, sad sky.  His color had already changed to a hue of yellow I had never seen on a human body with legs tucked underneath as if he had fallen backward.

    “What happened?!” I screamed and kept screaming as if someone was going to answer. “Oh, God, what happened?” Then I saw it.  I saw the small hole through his chest, the same place I had laid my head countless times over the better part of 17 years.

    It was not like the movies.  There was no blood pouring out or even a puddle beneath him.  I could hardly tell where the bullet had penetrated. There was only a pencil sized hole in his favorite blue sweatshirt.   Although no more than ten minutes had passed from the time I left him to get dressed to the time I found him in the woods, something in me just knew it was too late.

    I fumbled to get my phone out of my pocket.  Sliding the screen to unlock it was nearly impossible with hands shaking violently.  Finally, I concentrated as much as I could to dial three numbers in the correct order.  9. 1. 1.  

    “911, what is your emergency?” the male voice began

    “My husband shot himself.  He isn’t breathing. Please send an ambulance,” I screamed hoping beyond hope he could be resurrected. 

    “I need you to calm down so I can understand you,” the voice on the other end urged.

    “Please. My husband. My husband is dead.  Hurry. Send someone. Please,” I collapsed next to his lifeless body.  “Is the ambulance coming?”

    “It is.  Where are you now?” he asked calmly.

    “Beside my husband, in the woods,” I began hyperventilating.

    “Ma’am, I need you to go to the driveway so the authorities will see you when they pull up,”

    I found my way to the drive way.

    “Oh God, what will I tell my children?” I cried.

    “I am here, ma’am.  Let me know when the authorities arrive,” the dispatcher whispered.

    Moments later the first police officer arrived and the 911 dispatcher hung up.  A very tall man with broad shoulders and dark hair walked calmly up to me. 

    “My husband. He is in the woods over there,” I said almost hyperventilating.

    “Please stay here and wait for the ambulance,” he said with a serious tone as he walked with long and hurried steps to the back yard.

    My heart and mind ever so slowly began traversing into a surreal place.  As if in slow motion, I saw my parents tan van turn the corner and proceed cautiously to the bottom of the drive way.  They had come from Northern Virginia a couple of days before for a visit.  Just three hours earlier morning my mother had made us a wonderful breakfast and we all sat at the table devouring it.

    They had only gone to the bookstore but returned to caution tape and police cars. I saw my mother running full blast toward me as I cried, “Gary shot himself. He is dead. I can’t believe he left me…”

     My mother fell to ground screaming “No, Gary, it wasn’t worth it.”  My father’s face turned to rage as he punched the air and simply yelled, “NO!”  as if he could command it to not be so.

    “I can’t believe he left me,” I repeated. “I can’t believe he left me,” over and over and over for years to come.

    As my mother cried and screamed in the grass I felt as if my soul was beginning to disconnect from my body. I touched her back and just stared at the world around me. I saw houses and tress.  I saw the grey, overcast February sky as if God Himself chastised the sun and sent it away but nothing was registering.  The wind was blowing, it was cold, my mother was screaming but it must all be happening to someone else.  This was not, this could not be happening to me.

    My father realized my demeanor was changing. My speech was becoming slurred. Like the nightmares I had as a child, I wanted to talk but the words were coming out unformed. He recognized the signs of shock and summoned the police officer. Since the ambulance arrived but no resuscitation effort was made they carried me in to be assessed by the EMTs.

    “Stay with me, focus on me,” my father repeated. At times he had to yell to get my attention.

    When I looked at him things were clearer and the full force of my grief was held at bay. As soon as my eyes diverted from my father everything became chaotic and uncertain. The world was literally spinning. Gravity was failing. I was disconnecting from my own realm. I was at the cusp of oblivion. There was an intense, real fear knowing that if I let go and floated into that unknown place I might not know how to get back. There was a knowledge that I could somehow control it. For a split second, though, I wondered if it would be more inviting than the reality I now faced. An enormous vacuum was sucking my soul away yet even in my altered mind I knew I had to try to stay. I was scared. I did not want to go there yet did not want to be in reality equally as strongly. What was transpiring was much too much for me to handle. The reality that my world was being ripped apart was both figurative and literal as I lay in the ambulance looking at my father’s loving, pleading eyes.

    “Stay here, the boys need you to stay here,” my father begged.

    Reminding me that my boys needed me changed everything. It was the exact switch that needed to be flipped. Indeed, from the moment of conception I loved them more than my own self. When I was pregnant with them I would care for myself. I would eat right and drink plenty of water. I quit smoking. I could not or would not do any of those things for just me, but when my body became a vessel to them I did anything to ensure they would safely arrive into the world. I needed to do anything to ensure they would stay safe in a rapidly changing world.

    I fought back with all my might against the lure of being in the other world where, I believed, I could be numb but where my children would not be able to find me. They did not even yet know they had lost a parent, I was determined they would not lose both.

    I lay on a stretcher wrapped in a blanket. I do not know how long I had been outside barefoot and no coat. I was shaking from cold and fear and death and uncertainty. I was shaking to the very soul of me.

    I could physically feel and spiritually sense the presence of all that was to come: as if grief, anger, despair, anxiety, loneliness, and regret, all at levels I had never encountered, were floating above but had not yet pounced. They were swirling, circling, waiting to attack viciously. Indeed, they were eager to devour me. I felt strangely peaceful that they would wait. Instead, I looked at the young woman who was part of the response team.

    “Do you read the Bible?” I asked.

    “Yes, I am a woman of faith,” she answered.

    I whispered with my eyes closed, “How is God possibly going to bring good out of this? My husband is dead. The father of my children is dead.” When I finished my question I looked up at her as if saying “my husband is dead” was safer if said with my eyes closed.

    Tears began to roll down her eyes. “It is all right to be angry with God and tell Him you are angry,” she responded.

    “I am not angry with Him,” I said, “I cannot face this without Him.”

    My spirit made a decision when my mind could not. My brain and heart had suffered an injury of cataclysmic proportion yet my spirit knew I would not survive except by clinging to my Father’s robe. I was the woman in the crowd. I was not pushing through people but I would push through anger, fear, doubt, loneliness, excruciating pain, to reach the hem of my Savior. I would stop at nothing to touch Him. I knew my faith would heal me.

    As I sit here 13 years later sharing this incredibly raw and vulnerable moment, I know it did and for that, I am exceedingly grateful.

  • Co-inhabitants

    Co-inhabitants

    Yesterday at Costco Wesley walked along pushing the cart. We began to pass a man who had what appeared to be a child, perhaps 6 or 7, sleeping in the cart when he suddenly stopped to engage Wesley. With a gigantic smile, he held out his fist to give him knuckles.

    “Hi buddy!” he said as if he knew Wes.

    Wes happily obliged in giving him knuckles.

    “How are you?” he said with his smile getting even bigger.

    He looked at me, “How old is he?”

    “He’s 21,” I told him.

    He pointed to his son in the cart. “He is 18!”

    I walked over to say hello. He wasn’t a young child. He was a child like ours. He had special needs.

    We stood there for a few minutes in the frozen section of Costco. People hurried by as we talked about our boys. It wasn’t about exchanging information. It was about being, even if briefly, with someone who lives in my world.

    Their life is as mine. Without being told, I know things about these strangers. I know this man or his wife has a hospital bag in his closet. There sits an already packed bag just in case that fever isn’t just a blip but the start of an extended hospital stay. Their arms are tired every single night from maneuvering their son. I know they hook up a feeding tube to give their child the basic sustenance to live. They try to balance time with the other children but some days they just can’t and it is no one’s fault though it feels as if it should be. They carry the weight of how their children are impacted. Though they will likely grow to be kinder and more compassionate adults, there is still a cost. I look at his beautiful wife whose smile is just as big and know he has a supportive spouse. Their friends try to understand but can’t possibly because they always only pass through.

    And I know they have cried over the simplest victory. They celebrate every smile and every laugh. Their life is amplified. They take nothing for granted and lay down each night and thank God for one more day with their son.

    Being the parent of a child with special needs is something like being a citizen in a foreign land. You appear to be like everyone else but your culture is different. The way your family eats is not like others. Though you speak the same language, yours includes words and acronyms the others don’t know. Your family can’t attend events unless they intentionally turn down the volume and the house lights are just half dark. Sensory friendly events are few and even fewer are churches to welcome the entire family. Days are filled with vital stats checks and diaper changes and medications. Some nights sleep is regular and others it consists of only two hours. There is no rhyme or reason. It is just how it is.

    Complete assimilation just isn’t possible even though you once lived with the same customs your friends luxuriously enjoy. As much as they don’t understand yours, you can no longer imagine life being any other way than how it has become. For it to be any different would mean the worst of nightmares.

    But then you see a couple and even though they are strangers, you recognize a familiarity that is not just welcomed. It is sought. They know the words you do. They don’t just sympathize. They empathize because they live there too. The only thing you may have in common with them is that but the weight and joy of that encompasses who you are. So you just stand there for a few moments. You feel your soul relax in a way it only can when you are with fellow inhabitants.

    For a fleeting few moments the abnormality of your life isn’t there. You soak in the seconds when abnormal is normal. And you smile and thank these strangers, these co-inhabitants, for stopping to give knuckles to Wesley and a smile to your heart.

  • In the Hallway

    In the Hallway

    Sometimes the door closes softly and other times it slams. Sometimes God closes it and sometimes other people do yet God allows it. And you stand there directionless in the hallway because no other door has yet to open.

    When Wesley was in the hospital over the summer my most fervent prayers were offered in hallways. As I prayed, deep down I knew they were going to tell me whatever it was they would. I knew God is still in the business of miracles but I also knew His miracles are, at times, not the miracle we want. Could my prayer make his heart function properly and the vegetation go away? Could it make our son live? Could I receive the strength to face another day in the ICU? They could. Would they? I wasn’t sure.

    Praying was the only thing I could do but I don’t say that in a helpless way. Quite the contrary, there is unmatched power when we are utterly powerless.

    There is nothing to distract you in a hallway as you stand eagerly waiting for the door to open. We are distilled down to the very core of what matters. Plain and simple. Uncomplicated.

    In my life God has either closed doors or allowed doors to be closed that I did not want shut. I loved the room I was in and would have never left any other way. As I wait in the hallway He prepares another room for me. I do not know how long it will take but wait with joyful anticipation. I know the One who works on my behalf and I know it will ultimately be more than I could ask or imagine.

    And so I don’t force open the door behind me. I only need to work on my obedience and the grace with which I handle the closure. I do the next right thing.

    Beyond praying, I remain active in the waiting. I worship. I do His work without a room. I remain obedient even if it doesn’t seem to make sense.

    Steve and I have to figure out a new plan for our non-profit food truck. Everything was disrupted from where we store it to what nights we are open to where we can park to open. But we catered a wedding on New Years Eve and had a little income. Since it was just Steve and me working and we take no salary we had some money left. My instinct was to save it all since we are still working on a plan. We are in the hallway. But God.

    Last night I received a desperate message from a beloved family we have helped in the past. They were out of food. Completely. They live in an area where there is no food bank. They needed help.

    This morning I went shopping and it filled my heart with inexplicable joy. I imagined how it would feel to not have food for your children and receive the gifts I was buying. I thought about their hallway and God using Legaci Eats to open a door for them.

    God will open the next door in His perfect timing. Until then I can be active in the waiting. I can allow Him to use me for the good of others knowing miraculous things happen in the hallway that are just as impactful and important as the next room.

    And so I shall.