Patience to Endure

Tag: special needs

  • 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…)
  • 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.

  • 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.

  • My Mother’s Robe

    My Mother’s Robe

    When I was a child I could not, for the life of me, fall asleep on my own. I felt particularly fearful at night. It was the time when the distractions were gone and my mind had room to roam to all sorts of horrific scenarios like monsters under the bed or alien invasions or a world wide shortage of ice cream. 

    The only way I could get to sleep was for my mother to lie down next to me each and every night. Only then would I feel safe believing all the terrible things I imagined would not, could not happen. Her presence beside me assured my little heart everything was going to be just fine and I could finally rest.

    In the mid seventies she had a quintessential robe for the time, complete with flared arms. In order to ensure she not try to sneak away until I was fast asleep I would wrap my tiny hand in the flare leaving her no escape except a limp, sleeping hand. I did whatever I could within my little six year old power to make sure she was closest when I felt the most unsafe. 

    Nine years ago my first husband committed suicide. I found myself, once again, terrified of the night. Fear when not combated thrives in those moments of quiet. My mind roamed to all sorts of horrible scenerios like not being able to pay the mortgage, the impact this would have on my children, and the thought that perhaps I would never feel anything other than excruciating pain. It was always in those quiet moments of closed eyes when images of finding him replayed in repeat mode.

    Then I remembered my mother’s robe. Every night for months I fell asleep praying. I needed to know my Father was near and I did everything I could to ensure He not leave until I knew I was safe. I didn’t suppose God minded for He is a good Father. He knows my heart and would do anything to let me know I am not alone. 

    Then again last night it came… that moment when the hectic day was done and my thoughts had time to go to unsafe places. The world is terrifying right now. Coronavirus has disrupted our lives on a scale unseen during my life time. My children are all being home schooled including my son with autism. Our movement is extremely limited and even when we venture to the grocery store it is filled with diligence and anxiety that exhausts me. 

    The monster under the bed is invisible. It lingers in the air and attaches to door knobs and shopping carts. The information we are being provided changes daily as does the death count. It doesn’t discriminate and is vicious.

    The thought creeps in of my son with special needs catching COVID-19 and having to go the hospital alone. At 18 years old he is cognitively two. Isolated in a hospital room he would not understand what they are doing to him or why I am not there. The probability of him succumbing to Coronovairus is high given his underlying health conditions. These thoughts batter my core. I double me over until I am in the fetal position of my soul. 

    How I long for my kid fears, those thoughts that kept me up at night but had no way of actually occurring. For the thoughts that keep me up now can happen and will happen if I am not vigilant. They may happen even in spite of taking every precaution like going only to the grocery store as needed, keeping adequate social distance, and washing my hands frequently. If I have learned anything in this life it is there is only so much I can do to determine the outcome of situations beyond my own free will.

    Then I remembered my mother’s robe. I tangle my little hand around the hem of my Father’s garment and prayed as I fell asleep. His presence makes the fear manageable. There is power in that hem. There displays unshakable faith in the determination to get to His robe. The fear no longer takes my breath away. My soul unclenches.

    I remember those moments in my past of complete loss and devastation. What I now bring to prominence is the absolute certainty that beside and within me was and is the presence of my Father. He doesn’t always stop heart ache from passing through His hands. This world is not His Kingdom….yet. Even so, He is there in the midst to lull me to peace each and every night. May I never outgrow that.

    And for the moment in the dark and dreadful night, that is more than enough for me.

  • I trust You…

    I trust You…

    I was rearranging my seven year old’s room for what felt like the millionth time. He has a bunk bed that has a ladder on one side and a slide on the other. While he was sitting on the top bunk I took the slide down for a few moments. As I was trying to put the slide back on, his bed shook. I heard the sweetest voice say, “I’m scared, Mom…but I trust you.”

    How different would life be if, when on shaky ground, we sweetly said “I’m scared, Father…but I trust you.”

    During the summer of 2010 Wesley, my middle son with special needs, fell down the stairs and landed on the marble floor. I heard my stepdaughter calling me and knew something tragic occurred.

    I came flying down the stairs and saw him there. He was conscious but I noticed his hands and feet, contracted. I lived in the world of special needs long enough to know it meant brain injury.

    After an ambulance ride to UVA we were taken directly back. I remember just beginning to realize exactly how serious it was because we didn’t even have to wait in the ER.

    The nurse came in and I immediately recognized her. She had children at the same school as my oldest son. I was relieved to see her and know she would be praying as she cared for us.

    They took Wesley in for a CT and I sat in a metal folding chair in the sterile hall. I saw the tech speak to our nurse and from the other room I could read his lips.

    “There is a bleed.”

    My husband was a physician and I knew the gravity of what that meant. My child was going to live or die and there was little, if anything, that could be done by medicine to make him live.

    My prayer was simple.

    Please, God, please just give me whatever it is I will need to endure whatever is coming.

    That was the prayer of a mother who thought her child might die. The prayer of a mother who might never feel her child’s arms around her neck or see him smile again The prayer of a mother who wasn’t sure how she would live without her child. I had surrendered. I knew with all certainty Wesley’s life was in the hands of God everyday but it was never so obvious as at a moment like that. I knew that a loving, faithful God can still allow children to die.

    I am scared, Father…but I trust you.

    When the diagnosis comes…
    When your spouse has an affair…
    When the bank account can’t be stretched…
    When you lose someone you loved dearly…
    When divorce is impending…
    When the indictment is handed down…
    When your child is sick…
    When the layoff comes…
    When addiction is all you can see…
    When depression is crushing you…
    When anxiety steals your peace…
    When your heart is crushed…

    No matter when or what

    I am scared, Father…but I trust you

  • My Father’s Voice

    My Father’s Voice

    When I was a child and would ask my father the definition of a word he would never give me the answer. He would present me with another question.
    “What do you think it means?” he would ask me.
    I would reply “I don’t know. That is why I am asking.”
    His next statement was always the same, everytime. “I will use it in a sentence.” After doing so he would pause and after a moment he would ask again “What do you think it means?”
    I despised this routine. I just wanted him to tell me. I didn’t want to think. I didn’t want to have to figure it out. I just wanted the answers given to me. But I thought as a child. My father knew that I would learn the word better if I figured it out myself. He knew that he was training my brain to think. Though he could have given me the answer he gave me something even more valuable – the ability to find it myself.
    When I became a mother and my oldest child first asked me a meaning of a word without even thinking I looked at him and said “What do you think it means?” I heard my father’s voice as I spoke his truth. The awful, wonderful, frustrating tradition continued.
    When I find myself facing struggles and difficulties I will often ask God what does this mean? Just like my other father, He never just tells me the answer. He doesn’t say “My child, you are to learn to love well” or “I am training you to be strong for something else entirely that I know you will face” or “You need to show this person who drives you crazy who my Son is.”

    God sits silent and in that silence I hear Him say, “What do you think it means?”
    So often in life I am still very much like that child only now my father’s voice is my heavenly Father’s voice. I try to not ask him “why” something is happening. I learned long ago that the answer does not come and even if it did, how would that make any of it any better or the pain any less potent? Why was my child born with special needs? Why did my husband kill himself? Why must I raise my boys void of a father-figure?

    Somethings must be born from the struggle. I am convinced struggle is a different soil. When watered with tears and sweat it will bear fruit that would, simply, not come to fruition any other way.

    I zero in on the “What does this mean?” and “How will this define me?” and “How can this transform me?” questions.
    I suspect that God wants me to truly, earnestly, and vehemently learn the lessons that He will bring out of horrible, difficult, impossible situations. Romans 8:28 is a Bible verse we who follow know well.
    “And we know that for those who love God all things work together for good, for those who are called according to His purpose.”

    But we often stop at that verse perhaps because it fits neatly on a coffee mug or book mark. However, it is the next verse that, to me, solves the mystery of what I am supposed to learn and exactly why and how God works all things for good…
    29 For those whom He foreknew He also predestined to be conformed to the image of His Son, in order that he might be the firstborn among many brothers.

    To be conformed to the image of His Son…

    He doesn’t work all things for good so that we can have nicer cars or promotions or Facebook perfect lives. The answer to the “what does this mean” question is never something my flesh would crave but something my spirit desperately needs. It is so that I will be more like Jesus. The kicker is, I have to let Him. I have to be willing to zero in on things of eternal import.

    Why was my child born with special needs? I do not know. What have I learned from it? Patience, resolve, kindness, perseverance, how to choose joy, unconditional love, and the list goes on. Why did the heartache of my husband’s death pass through God’s hands and why did He allow it to happen? I do not know that either. What have I learned from it? God is faithful. He is close to the broken hearted. He is the defender of the widow. His promises are true. He restores what was lost, perhaps not in the way we expect or desire, but we are blessed by the restoration. That list goes on as well.

    I believe that God sits in silence sometimes even when I am the child demanding answers precisely because the answer must be attained so that I can learn it on a soul level. It must be ingrained into who I am so that it is natural for me to take what I have learned and utilize it with confidence because it is mine. I have ownership. I can use it to help others and I can allow God to use it to transform me ever so gradually into the image of His beloved Son. As Christians, that is the ultimate goal after all…to hear our Father’s voice and be transformed, glory to glory.

  • Embracing Our Brokenness

    Embracing Our Brokenness

    I recently had the honor of sharing my testimony with the Ministry for Women at my church. The audio is below.

    I’m sharing mostly because friends had asked to hear but, honestly, I can’t figure out how to share it with anyone who does not have gmail.

    At any rate, this is part of my story.  I hope it blesses His heart