Patience to Endure

Tag: God

  • 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…

    Hope is coming. Hold on. This child was your greatest teacher without ever speaking a word and taught you what you need to survive his death. In your weakness He will give you strength. You will use the voice Wesley gave you and you will identify yourself once again and help others. God will give purpose to this pain and you will use it for His Glory. Right now, you are in a new level of pain unimaginable. Gravity feels more powerful than ever because the weight of your grief is physical, emotional, mental, and spiritual. Some days you can’t lift your chin but you must lift your arms in praise. You will want to give up. But then you will persevere. You will become a better mother, daughter, wife, and friend because Wesley was here. He was yours and you were his. This moment is when you begin to allow God to work this, even this, for good. For you love Him and you are called according to His Purpose. Grieve because you have lost significantly and it hurts to the very core of who you are. But then get up. You’ve got work to do.

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

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

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

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

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

    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.

  • Loving Like He Was…

    Loving Like He Was…

    We’ve heard the adage we should live like we are dying. Life is short. Take the Trip. Buy the Shoes. Eat the cake. Live as if every day is our last.

    But what if we take the focus from ourselves and live and love as if others are dying? How much slower would we be to anger? How easily would we forgive? How much more mercy and grace would we be capable of granting? Would we hold back on “I love you”? Would we cling to that grudge as if it were more important than a person? How much less irritated would we get? Would we leave anything unsaid or unresolved?

    My father died on July 10 at 7:28 pm. The odds of dying during a heart catheterization are 0.05% We weren’t expecting that to be the way he would leave us.

    He was eighty-one and growing frailer though his mind was still sharp. Still, something in me knew we might be approaching our season of lasts.

    I told my husband on Father’s Day I wanted to make a big deal for my dad. I spoke the words, “What if this is my last Father’s day with him?” So we had the finest meat and all sat down at the dinner table together to celebrate. I said the blessing before the meal and, choked up with tears of gratitude, thanked God for giving my dad to me. I thanked Him for the blessing of having such an amazing dad. I asked for strength and health for him in the years to come. My dad got to hear my intimate prayer of gratitude for him.

    I took my dad to doctor’s appointments and grocery shopping. I slowed down and paused when he had something to say whether I found it interesting or not. Merely the fact that he wanted to share was enough to pay attention. I hugged him more often. I always told my dad I love him with great frequency, yet it increased. I approached each day as it was, a gift. And in the recesses of my heart I knew the days would be no more. I just didn’t expect it so soon. When a beloved parent dies it always feel so soon.

    I cherished the time we had not because I was living like I was dying; I was loving like he was.

  • 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.

  • Survive

    Survive

    1. To remain alive or in existence: live on.

    2. To continue to live after

    3. To continue to function or prosper despite. WITHSTAND

    I know where I was eleven years ago today. After it happened everyone told me I wouldn’t remember the first year, that it would be a fog. But I wanted to remember so I began writing. I wanted to remember how my friends and family carried me; how my son’s school became my community; how God showed up. I wanted to place a benchmark so that someday, eleven years later, I would look back and with unbelief and in awe commemorate what I survived.

    The following is an excerpt from my journal regarding the events that could have destroyed me.

    But God…

    I walked back downstairs into the basement and turned the corner entering the family room. My eyes were immediately drawn to the heavy velvet curtain conspicuously drawn back. Even more unusual was the unlocked dead bolt on the door leading to the outside. It was as if denial had suddenly grown weary of my company and said good bye in the only way it knows how. Rather than a congenial wave, it balled its hand into a mighty fist to punch me mercilessly in the gut rendering me breathless. To this day I still do not know why, but I ran straight outside. Something in me just knew. 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.

    The manifestation of the shock, horror, and absolute desperation made its way from the depth of my being and escaped as a sound I did not know my voice could make. There is beneath our interior, a level of excruciating that I never knew existed. The scream coming from my mouth was so foreign it seemed as if it was coming from above and around me, as if the very trees were crying out. It could not have possibly been coming from within me.

    I looked at my husband.  His eyes stared blankly at the cloud filled, chidden sky.  His color had already changed to a hue I had never seen before, a color unrecognizable as human. His legs were tucked underneath him as if he had fallen backward.

    “What happened?!” I screamed and kept screaming as if someone was going to answer. “Oh, God, what happened?” My mind raced as I imagined he somehow fell and accidentally broke his neck.  It had to be a freak accident.  But what was he doing in the woods?  Then I saw it.  I saw the small hole through his favorite blue sweatshirt.  I tiny whole into his chest.

    It was not like the movies.  There was no blood pouring out or even a puddle beneath him.  The gore was in his eyes and in the color of his skin.  I could hardly tell where the bullet had penetrated. Although no more than ten minutes had passed from the time I left him to get dressed to the moment I found him in the woods, I knew revival would be impossible.  I knew he was gone too far and there would be no heroic efforts to return him to me. He was a physician. He knew human anatomy. In a split second my mind processed that Gary would not have left survival to chance.  He would have made certain there would be no resuscitation.

    I fumbled to get my phone out of my pocket.  Sliding to unlock the screen was nearly impossible because my hands were shaking violently.  Finally, I focused my eyes and concentrated with my whole being to dial three numbers in the correct order.  9.  1.  1.  

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

    Doubled over I cried, “My husband shot himself.  He isn’t breathing. Please send an ambulance,”

    My voice escalated as if urgency could somehow awaken a sliver of hope that perhaps he could be resurrected.  Acceptance comes slowly.

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

    Asking someone to calm down when their world was imploding seemed impossible to me.  But I knew I needed to communicate so I tried again.

    “Please. 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 behind the house,” I began hyperventilating.

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

    With all my might, I slowly stood up.  Looking down at Gary one last time I trudged up the hill and stumbled to the drive way.

    “Oh God, what will I tell my children?” I asked half hoping the stranger on the other end could tell me.

    “I am here, ma’am.  Let me know when the authorities arrive,” the dispatcher whispered. I could hear the sorrow in his voice.  My first encounter with the compassion that would be shown to me in multitude by strangers and friends began with the first person to whom I spoke and would not end for years to come.

    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 could barely speak.

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

    I was there all alone in the worst and most unimaginable moment of my entire life.  I collapsed on to the cold, hard drive way next to the trash bin.  I did not know until that moment that there was a pain too deep for tears.   I grabbed the cross around my neck like it was a life preserver and my only chance at not perishing with my husband. 

    I began shouting at God. I was accusing Him.

    “God, I have been obedient. I have done everything you have asked of me. I pray. I read the Bible.  I lead Bible study.  I brought in the foster children. I’ve done every hard thing You’ve asked.  How could you do this?” 

    “I did not do this,” I heard Him say as if He lay on the concrete next to me. I knew He was telling me the truth. This wasn’t part of His plan or His purpose. This wasn’t His fault. My outward screaming ceased momentarily. My inner turmoil was only just beginning.

    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 that morning my mother had made us a wonderful breakfast and we all sat at the table devouring it. They had gone to run an errand and came home to a crime scene.

    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” and collapsed lamenting.  My father’s face turned to rage as he simply yelled, “NO!” with a military authority and punched the air as if he could command it to be somehow not be true.

    I sat down on the grass by the driveway. 

    “I can’t believe he left me,” I repeated. “I can’t believe he left me.” It is a disbelief I imagine to carry until my last breathe.

    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.  I looked at my feet realizing I had left the house in such urgency I had no shoes. 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 knelt down and lifted me up. He and one of the responding officers walked me to the rocking chair outside the house. It was explained to us we could not go into the house until the detectives gave an all clear. In Virginia, suicides are treated as homicides until proven otherwise.

    When I looked at my father’s eyes I felt a little clarity 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 moment, though, I wondered if it would be more inviting than the reality I now faced.

    It felt like the suction tool a dentist uses. When it is placed in your mouth it doesn’t show it’s full power until you close your lips. In that split second your lips touch, this tiny tool becomes a force. The patient has the absolute power though to choose to hold on or let go. Only now it would not be mere saliva extracted but my very soul. 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. I was shutting down. The reality that my world was being ripped apart was both figurative and literal as I sat there looking at my father’s loving, pleading eyes.

    The sirens blared as the ambulance came in slow motion up my long, steep driveway. One of the responding officers came out with a blanket and tenderly wrapped it around me. He and my father carefully walked me into the ambulance. I looked again desperately at my dad. The disconnecting feeling was beginning once again and growing stronger. The fight for my soul was not yet over.

    “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. I never took greater care of myself as when they were in my womb. 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 for them I did anything to ensure they would safely arrive into the world. I needed to do anything to ensure they would stay safe our now demolished 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.

    My father climbed in the ambulance. He wrapped his arms around me and kept begging me to stay with him. After a few moments a police officer came to ask him to assist in getting in the house. My beloved black Labrador was standing guard and would not let any strangers enter.

    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 that I would not survive except by clinging to my Father’s robe. I had to be like the woman with the bleeding disorder 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.

    I survived. I withstood. I fought. I rested. I never gave up.

    That is where I was eleven years ago. Today I am on the backroads going to Harrisonburg with my now husband, Steve. We are fetching supplies for our non-profit food truck. Over the last 18 months we have provided over 70,000 free meals. All the proceeds from our truck goes to helping our community.

    God did work it all for good. I see it every time I feel Steve’s hand take mine. I know it each time I look at his face and hear him call me “Queen.” He tended to that which was unhealed from vicious wounds he did not inflict. He tends to them still. And love has won.

    It was hell to get to the passenger seat beside him but worth the fight. Some days it felt like swimming through mud but in that near impossible journey my spiritual and emotional muscles were made strong and the floating feeling of my life now was made all the sweeter.

  • Even for a 20 year old

    Even for a 20 year old

    Every morning I dress my 20 year old son. Wesley was born with significant special needs and is incapable of assisting with dressing himself. My morning starts with coaxing a sometimes cooperative but more often than not uncooperative man to the bed to change. I clean the wound for his g-tube and apply dressing. Next, I change his diaper and place an elastic band over the feeding tube to protect it from coming out either accidentally or being pulled out purposely by Wesley. I dress him in a spandex undershirt to further protect the g-tube. Finally, his second shirt is on and I pull his arms through the sleeves. He is strapped into his wheelchair, ready for the bus. By the time we finish Wesley is usually agitated and yelling. Every. Single. Morning.

    Most mornings it is just part of my routine. Some mornings, though, I must remind myself what a privilege it is. I bring to the forefront of my mind the multiple times I held him in hospital Pediatric Intensive Care Units unsure if he would live another moment.

    I recollect the first time I found myself in a hospital chapel.

    I grew up close to God and went to Catholic School. I clearly remember watching all the Easter specials on TV. I would grab some ice cream and watch with wonder the story of Jesus. I wished I lived then, that I could have followed Him. He was my hero.

    But then life happened. Or, rather, I chose different paths each leading me further and further away from that childhood hero. After I married my first husband we moved to a town in South Dakota. His job afforded us a level of prestige that was appealing. We ran full fledged into this world where we had dinner invitations with the Senators and the best seats at the symphony. As my love of this new world increased, my love for God all but disappeared.

    Then Wesley had his first major surgery in Minneapolis, four hours from our home. Everything went well until that evening. He spiked a little fever but they discharged him thinking it was dehydration and nothing to worry about. By the time we arrived home his temperature was over 105. Something was terribly wrong.

    A trip to the Emergency Room ended in the Pediatric Intensive Care Unit. He was hooked up to every device imaginable. His little body had no more room for all the probes and wires. Blood was drawn and almost every test came back abnormal. His liver functions were through the roof. Every specialist and subspecialist was called. Each one shrugged his shoulders and deferred to the next specialist until the final physician stopped at the door on his way out.

    “If you pray, I suggest you do,” he said as he left.

    Oh my heart. I had prayed only once in years. Not a single hello or thank you, just a single “can you do this for me?” And I was back with my hands held out asking for another favor. Would He even know my name?

    The elevator door shut slowly and I grew certain God would not know me or worse, would be angry because I only came to Him when I needed something. What once was one of the most important relationships in my life had, over time, eroded to my last resort.

    I sat in the little Chapel in silence for a few minutes. Dinner with the Senator didn’t matter. Where we sat in the symphony hall could not help me. The massive money my husband made would not save my son. Only God. And I had ignored Him for nearly a decade.

    Are you there, God? It’s me. Jocelynn. It’s been so long and I am so sorry for being away. I need you now. Please, God, let me keep my son. The doctors can’t heal him. They don’t even know what is wrong. But I know You can. Please, God. Please let me keep my son.

    I did not try to bargain. I had nothing to offer. I sobbed in desperation and embarrassment. How could I have been gone so long just to approach Him now to ask Him for something, the most important something I would ask? I hoped He would not hold my absence against me. My soul shook violently with fear, regret, and uncertainty.

    I walked quickly back up to Wesley’s room and crawled into his little crib and fell asleep.

    Nurses came and left through the night checking his vitals and taking blood. His morning nurse came in and woke me with a laugh.

    “I’ve never seen that before,” she said about me sleeping in his tiny crib.

    A few minutes later a team of doctors came in holding Wesley’s clipboard.

    “Good morning,” the lead doctor said. “His blood work taken last night is in. We have no explanation, but his liver functions have returned to a normal level.”

    “Is he going to be ok?” I asked crying.

    “We think so,” he replied.

    Over the years there would be more visits to Pediatric Intensive Care Units. There would be at least three times I would beg God to let me keep my son. All three times He answered yes. However I approached Him as a friend and not a stranger. At times my prayer to keep my son was followed by, “But if I can’t, please give me what I will need to endure.” And I knew He would.

    The prodigal daughter had returned.

    Changing my 20 year old’s diaper is not a burden. There is necessarily, a paradigm shift that occurs when the only thing one wants is for their child to live. Everything else fades into triviality. Changing his g-tube dressing and diapers every morning is exactly what I prayed for all those years ago in that lonely hospital chapel. I think of all the people I met in those rooms and friends along the way who prayed the same prayer and God said, “no.” I have heard muffled cries to soul wrenching screams from hospital rooms that no actor in any movie can replicate. It comes from a place deep within most of us never have to access. I wish I had the wisdom to know why some people’s children die. It seems horribly cruel. In some way, however slight, I try to honor them by realizing what an absolute privilege it is to change diapers. Even for a 20 year old.

  • Autism

    Autism

    Today is World Autism Day. Every day for us is autism day.

    Autism is just one of the many ICD-9s that accompany my son’s medical chart. At last count he had 15.

    Wesley was born in October of 2001. Despite multiple ultrasounds by several physicians, I had no idea he would be born any way other than a healthy baby boy until the moment of his birth. How I wish I could say otherwise. Sometimes I wish my story included the part where the amniocentesis came back abnormal but I gave a war cry, pounded my chest and said, “I can do this!”

    But God and Wesley held the secret for 37 weeks. Laying on the operating room table I knew something was not quite right. His cry was so quiet. The nurses were somber. No one congratulated me until his dad brought him over.

    He said, “Here is our son. He has some anomalies and the geneticist will see him in the morning. Isn’t he beautiful?”

    An intense, sudden state of panic overwhelmed me. Joy, excitement, fear, and sadness swirled in my soul and each feeling was indistinguishable in the tornado of such a moment. The human spirit is not meant nor equipped to feel so many emotions at once.

    Three weeks later we took Wesley to Omaha, Nebraska to see the geneticist there. As we drove I began bargaining with a God I had barely spoken to over the last ten years. I wasn’t even sure He would remember who I was. I begged Him anyway. Please. It can be anything. Just let me keep my son.

    After examining my sweet boy the geneticist sat down with a large text book. He flipped open the page and pointed to a picture.

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

    The tornado descended once again. I became dizzy. I interrupted.

    “Will he be mentally retarded?” I asked.

    “I don’t like to label kids,” the geneticist replied. “If you expect him to be a typical child with RTS he will very likely become a typical child with RTS.”

    He could see the pleading in my eyes.

    “But yes. He will have mental retardation.”

    I excused myself to the restroom. Locking the door behind me I collapsed, sobbing on the unforgiving concrete floor.

    How I wish I could go back in time and speak with all the knowledge I have accumulated over the last 19 years to that young mom crying. I would say…

    Don’t be afraid. You will figure out how to mother this child and he will teach you more than anyone else will without ever saying a word. You will have to fight for him. You will be his voice and he will be your heart. He is going to teach you to love unconditionally with no expectation. He will show you the meaning of perseverance and you’ll learn to take nothing for granted. You will be exhausted right down to your very soul. You will stumble. You will fail. You will get back up and try again because he will need you to. His life is every bit as valuable as everyone else. You will learn to have empathy and compassion for others deemed “less than” in society. Use your voice and use it loudly when need be. You will be a better mother, daughter, and friend because your son was born this way. Life will be amplified from this day on. The highs will be higher but the lows will be lower. This isn’t the day your world ended . This is the day you begin to become who you were meant to be. You will reconnect with your old friend and God will lead, support, and direct you for the rest of your days. Grieve because you have lost a significant dream. But then get up. Dust yourself off. We have work to do.

    Autism is not the end of the world but merely a transition into a different one. It is vibrant here. It is silly. It doesn’t make sense to me much of the time but does to my sweet son. This world is challenging. It is rewarding. It is exhausting and so exhilarating. I am a vastly better person for residing here. And after 19 years as a resident, I would have it no other way.