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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Nathan, my eight year old, will tell me I am the best mommy in the world when I do something he hopes I will do. If I give him an extra 5 minutes at bedtime I am the best mommy in the world. If I give him Robux for no reason I am the best mommy in the world. The irony is I am not the best mommy in the world when I ask him to do something he doesn’t want to do. I have never said “time to clean your room” and heard him reply “you’re the best mommy in the world.”
There is no doubt he loves me. However, I am only the best mommy in the world when it suits him. Though I am far from perfect I try earnestly to make every decision with his best interest in mind whether he understands it or not.
When I tell him to clean his room his child’s mind doesn’t see the patterns I am trying to help him establish. He doesn’t understand the task is only partially about a clean room. It is about responsibility, discipline, and doing the right thing even when he doesn’t feel like it.
How often do we treat God the way my eight year old treats me? We say God is good when something goes our way. When we get the job we want or a loved one is no longer sick or a marriage has been saved God is good. But what about when we don’t get the job or our loved one dies or our marriage is lost? Is God still good?
I need to get out of the mindset that God is good when He does what I want. God is always good.
My child was born with special needs. God is good.
The doctors tell me he may not survive the brain injury and the next 24 hours are crucial. God is good.
I found my first husband dead from a self inflicted gunshot wound. God is good.
There is cacophony in my mind to read those sentences combined but not in my soul. I can and should yet say God is good in every circumstance, every trial, every victory, every defeat.
Like my 8 year old son I don’t always understand why. I wish hardships and challenges could just not be mine and the One who yields the power to change the course of direction does not. Whether it is His divine plan or the result of free will there are some things, difficult and seemingly impossible things, we must endure. God doesn’t author hardship but He will use it.
God is good.
I lost my job…God is good.
My spouse left… God is good.
I can’t pay the rent…God is good.
The second half of those sentences bring light and hope to the first part. It helps negate the natural propensity for my perspective to be that of an eight year old. God isn’t just the best Father when things go my way or when life is easy. I would argue it is precisely during the hard seasons He shows us how truly and powerfully He is the best Father if we would just position our thoughts and actions to believe it and our faith to see it.
Here it is. A decade has passed since I found Gary in the woods dead from a single gun shot. Time is a strange thing post trauma and I’ve covered a lot of ground since then. The day is now, mostly, an historical remembrance more than an emotional one. For my children though it is a nightmare of a day to get through and that breaks my heart more than anything.
Gary didn’t have a long history of depression. There were no “classic” signs he was going to do what he did. What he did have was a long history of battling addiction.
Ten years before his death he was prescribed percocet for severe tendonitis. As a maternal fetal medicine specialist taking time off to nurse his injury just wasn’t possible. What began as an innocent prescription was, unknowingly at the time, my first step into hell that included driving him 18 hours through the night to rehab where he stayed for three months and ended with me finding him in the woods.
Upon discharge Gary had access to the best group and private therapies. He was followed for five years by the Health Practitioners Intervention Program. What he didn’t have was the freedom to battle his disease in the light.
Shame, judgement, and stigma made that simply impossible. Imagine a boxer equipped with the most advanced protective gear and a heart to win but being put in a ring in absolute darkness. Yet the foe he battles only grows and thrives in the dark. His strength is fed by what the fighter can not share and others can not see.
And so he lost. Many of the people in his group therapy all those years ago lost. My children lost. God lost the opportunity to redeem his situation. And He would have. He always does.
The “addict” is someone’s father, son, physician, teacher, husband. They aren’t as portrayed on television. They are from all classes and many put on a suite and tie or scrubs or a judges robe every day. They love their families. They want to be in recovery. The addict might even be you.
On this day, the tenth anniversary of his death, my prayer is a post like this might bring a little light to the other boxers still in the ring swinging madly in the dark. I hope they hear my voice cheering them on and not the voices of discouragement and judgement. I hope a seed is planted for the person reading this who is fortunate enough to not know addiction the way I do and the seed will grow compassion. Though they may not know it, chances are they love a person with addiction. My prayer is the person fighting who is reading this would have the courage to bear light themselves and help change the notion addiction only plagues degenerates. They would have the courage to say “my name is…and I am an addict.”
They are busy fighting addiction, a formidable and relentless enemy. May we who are not wearing the gloves fight shame, stigma, and judgement for them. May we hold the light and shout words of love and encouragement while they fight for their lives. I am convinced their foe will shrivel in the light if we just have the courage to shine it steadily, brightly, and boldly for them.
May we help change the perception that they are junkies squatting in an abandoned house. They are boxers in the ring. They are fighting. And with our help maybe, just maybe they can win
