It is a beautiful day today, sweet boy. The kind of day you would sit on the swing and with furious determination scroll through your Ipad.
I managed to catch up on watering plants and even repotted a couple. Still, most of the day was spent on the couch unpacking the medical trauma from two weeks ago and, of course and always, missing you.
We got to the hospital on February 17th around 11:00 am. As we waited for them to call us back you were feeling well enough to be ticked off. They drew some bloodwork, got you a room, and started IV medication and fluids. After a few hours you were moved to a different part of the emergency room where the stable patients went until a bed opened. You were supposed to go to the general medicine floor. Even the medical professionals could not see and lab work hid how sick you really were.
Around 11:30 pm it all began happening so fast that I didn’t know what was happening even as it was happening.
He is in A-fib. We are moving him to the part of the ED where the ICU trained staff is.
As soon as she finished her sentence a team descended and whisked you out of the room. We have been in the hospitals enough to know rushing teams is not good.
You were taken into the resuscitation room with an unsettling brisk pace. At least twenty people went in the room. It was the same room they took Grandpa into by ambulance 2 years before… My heart sank.
What is happening?
Let me get you a chair.
What is happening with my son?
When they do not answer your question you know you do not want to hear the answer.
I peaked in your room
Your blood pressure was 60/40. You were pale. You were dying. I begged you to stay.
Please come sit down.
Afib….Low blood pressure. Cardioversion. Shock. Could die…
Where is Mom?
I see her standing in the hallway lost. She looked so small and so scared, not the feisty woman I know.
Can you get my mom a chair?
We are conferring. He may need cardioversion to shock his heart. In rare cases it can cause cardiac arrest.
I fall to my knees. Head bowed. Hands clasped.
Please God, one more time, let me keep my son.
My mom calls her best friend on the phone. It is midnight. Her friend comes immediately.
I call Steve. He is crashing. Please come.
A nurse kneels next to us.
I don’t know much because he just got here but I will answer what I can.
Finally someone is speaking to us.
I look in the room again. His blood pressure is 50/30
We are pushing a lot of fluid.
A social worker appears. Do you need a chaplain?
The only time they call a chaplain is when someone is dying. I decline.
The fluids seemed to be helping. Cardioversion postponed. They take you to the ICU.
Over the next few days I would see only small glimpses of you. You were on a lot of medication. I began missing you already.
The next big trauma would begin on February 21st and would be your last.
No more shocks to the heart, sweet boy. No more infections or failing valves. No more cascading dominoes. Not for you, anyway. Mommy is trying so hard every day to keep one domino up. I just need one to stay stable. It often teeters but I will not relent. You taught me well. I will make you proud.
Two weeks ago this day your heart beat for the last time. It feels like two decades at times and two minutes at others. Time is cruel.
I went to Home Depot today. You hated Home Depot. It was your least favorite store but we also had fun there, especially during Christmas. We would push all the buttons and watch Disney characters sing songs just for you. You would give me enough time to look at plants and then would let me, and the entire store, know it was time to leave.
I pushed a cart today. It was abhorrent. When you were here I always pulled it because I would maneuver you in your chair in front of me. When I finished looking at the plants, there by myself I said, “Now we have to go find Grandma,” and my heart broke all over again. You were not there to hear me.
I managed to check out and get back to the car in time to cry. You hated it when I cried. You always would cry with me even if you didn’t know what it was about. You laughed when I laughed and you cried when I cried. You never cared why only that we shared every emotion. You were the best companion.
There were children everywhere at Home Depot today proudly displaying their craft. I cried more wondering why I didn’t get to keep you, my child. Then I remembered. I did. For twenty-four years I got to keep you closer than most mothers get the privilege of experiencing. And for that I am grateful.
I don’t know how I am going to do this, my sweet boy. You were the voice in my head and the song in my heart. You were my purpose and every day I thanked God for giving me a child who would ensure my role as mother would always be profound because you needed me and that would never change. At least not until February 21, 2026. Your brothers will always need me as a mother but not like you did.
I count it progress I was able to get back to the car before I cried this time. Baby steps. A friend once told me
One step at a time. And when you can’t, just lean forward.
I am leaning forward. Sometimes I just sit and cry. This grief is different. It has shaken my very knowledge of where I am in the world. It is physical. It is emotional. It is mental. It is overwhelmingly, seemingly impossible. But God…
All the time I miss your beautiful love. Your smile. Your request for hugs which I honored every single time because I knew each one could be the last.
That last one came two weeks ago today. Steve held your hand and I hugged you whispering “Mommy is here…mommy is here,” over and over until you were not.
Someday I will be able to go to a store and not cry. Some day the clock will not remind me it is time to catheterize or give medication or have coffee together in my office. Someday I will make it through a day without crying. But there will never be a day I don’t miss you with my whole, shattered, broken heart. I hold to the promise it won’t always be so shattered or broken but do know there will always be a piece missing until I see you again, sweet boy.
A friend sent me this poem. Your absence, the quietness of the house, the emptiness of my days tell my truth of this poem:
Even in our sleep, pain which cannot forget falls drop by drop upon the heart, until, in our own despair, against our will, comes wisdom through the awful Grace of God(Aeschylus, translated by Edieth Hamilton in 1930)
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.
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.
Have you ever asked a pregnant woman if she was hoping to have a boy or girl? More often than not her response is, “I don’t care as long as it is healthy.” But what happens when your baby is born and it is not healthy? What happens when they hand him to you and say words like “genetics, syndrome, anomalies, life long challenges.” What happens when your reality is the nightmare of others?
You hope but with a hope that is boiled down to its very simplest form. You no longer hope of tossing a football or ballet lessons. You hope that the medicine stops the seizures. You hope you can learn to run a feeding tube pump. You hope the surgery is successful. You hope the doctors are wrong and that your baby will live to see another day. You hope you will somehow survive if they are right.
When I learned to hope for the very basic necessities in order for my son’s life to continue I learned to be thankful for everything else. There have been several times in Wesley’s life when there wasn’t even an expectation he would live. In the absence of expectation hope is still not defeated and the way is paved for something far greater. I have learned to live with no expectations. The fruit that blossomed from that barren tree is excessive gratitude.
Often expectations lead to disappointments and heartache. When we break free from those expectations it is more difficult, though not impossible, to feel disappointed. When you have nothing you are grateful for anything. Sometimes the converse is true. When you have everything you are grateful for nothing.
Anyone with children has likely read, “What to expect when you’re expecting” or “What to expect in the toddler years.” Entire books are dedicated to letting parents know what to expect complete with charts for milestones. I think we often actually find security in living within the lines. Yet some of us are given children for whom none of those rules apply. We do not know what to expect and the experts can’t tell us. It all goes out the window and we live one day at a time, one surgery at a time, one test at a time.
When Wesley was an infant and toddler it was uncertain if he would ever walk, talk, or even eat by mouth. At one year old he weighed only fourteen pounds. His official diagnosis was “failure to thrive.” At the time I felt as if I should receive the diagnosis “failure to mother.” To my heart it was somehow my fault that my baby wasn’t growing appropriately. He wasn’t even on the growth chart, he was well below it.
His first birthday was spent in the hospital after receiving a feeding tube and to this day it remains part of him. For years I had to bolus feed him every four hours and hook him up to a pump at night. It was an intensive, time-consuming process. Not taping the tubing correctly could result in a kink and the alarm would sound. The tubing could and often did become disconnected but continue to pour thirty-two ounces of Pediasure into his crib. He would sleep right through it and I would find him the next morning soaked. When he finally could tolerate food placed in his mouth years later, even pureed, I was not disappointed that it was only stage 1 baby food. On the contrary, I was overjoyed that progress had occurred. I never expected him to eat so when he could I was exceedingly thrilled. At sixteen he still eats baby food but he eats.
He is non verbal other than the two words “Mom” and “Bob”. Those are his priorities – his mother and SpongeBob. He uses simple sign for other needs but decompensates when he cannot express something through sign language. He becomes self-injurious out of sheer frustration.
I used to pray every day that he would speak. I thought if he could he wouldn’t harm himself. I wanted to hear his beautiful voice say “I love you”. I wanted to know how his day was and what happened at school.
But the day never came when Wesley spoke. God answered, “No” and I don’t know why. Something as basic as speech was a milestone he would never hit. I never expected for Wesley to talk so I am not heartbroken that he doesn’t. I hoped, yes, but instead of living in what didn’t happen I move on. I focus on the things he can do and am grateful. I rejoice in the fact that Wesley does say “I love you” even if it is not in the way I hoped and most would expect. I hear it from his soul’s voice and there is no sweeter way to receive it.
Living outside the chart of normalcy can be a scary and wonderful place to exist. We have no guideposts telling us if we are on the right path or how far it is to the next stop. Yet there is incredible freedom. Our definition of excelling is the tiniest amount of progress and no accomplishment is too small for an all out dance party celebration.
When I finally learned to release my expectations I cleared the way for God’s. My disappointments are not His nor are my expectations. What we expect as a culture is not always, perhaps even rarely, the things which God expects. Our society does not value people with chromosomal abnormalities. We expect to have children with the near perfect DNA and above average intelligence. But just what if that wasn’t God’s expectation? What if His expectation is where there is life there is extraordinary value? What if He expects that child with a syndrome would bless every person who came into contact with him like my son does? What if God expects that child to be exalted because he teaches us to give and receive unconditional love? What if God expects us to realize what a privilege it is to have a child with special needs and not the burden as most of society thinks? What if God’s honor roll is not based on the contents of our intellect but the capacity of our hearts? I would declare that the contents of Wesley’s heart are exactly how God intends them to be and he enjoys a place on the highest honor roll.
How much more magnificent and rich yet simple would my life be if I could release all my expectations to allow room for God’s? As with all hopes, dreams, plans, and expectations God’s are always incomparably better.
“The Lord is near to the brokenhearted and saves the crushed in spirit.” Psalm 34:18
Hope is born from and in despair. That is my truth. Sometimes hope shows up like fireworks against the dark night sky, gloriously and brilliantly. It’s presence is awe inspiring and unmistakable. But other times I feel as if I am looking in a “Where’s Waldo” book. Though they tell me it is there it takes more work than one would think to find it. It doesn’t matter how it appears, though, I am just grateful it does.
On February 10, 2011 my husband committed suicide. I think every suicide is a shock whether or not the person has had a long history of depression, addiction, mental health issues, or tragic events they simply could not handle. Suicide goes against every natural instinct in the animal kingdom yet it is chosen by those for whom the pain of living is greater than the pain of dying. However, the pain doesn’t go away. I know it is cliché but the pain is given to those who loved them. The terribly ironic part of suicide is that the pain one feels that causes him to kill himself would have, had he just held on longer, gone away. The pain transferred to loved ones left behind is permanent. It may wane but it never ceases to exist.
Daughters and sons will always miss their lost parent. Every occasion that should be a celebration is tainted and marred by that person’s absence. Sadness is perpetually intertwined. There will be countless moments the survivor whispers, “you should have been here.” The absence is always felt at every holiday and every birthday. Bittersweet becomes our norm. It does not come alone but is accompanied loyally by abandonment, anger, whys, and what ifs. An entire family is robbed. The past is stained and the future broken.
Gary’s suicide was not preceded by any of the typical warning signs. There were no whispers of wanting to die and nothing to indicate he had given up. Sometimes death approaches so quickly the unravelling is hardly even noticeable.
The trauma of his death was compounded by the fact that I was the one to find him. It was a memory forever planted in my mind and would take years before I did not see that image several times a day every single day. It haunted my waking consciousness and night time dreams for a very long time. For a while there was no escape.
Two days after he died I still had not eaten a bite. Though friends brought food, I just could not force myself to partake.
“Please, just eat something,” my best friend Deanne begged.
“The only thing I could eat right now is girl scout cookies,” I replied.
Five minutes later the doorbell rang. There had been a steady stream of visitors. I knew I was blessed to feel so loved at a time I felt so completely alone.
At the door stood my neighbor, Lori who didn’t know Deanne.
“I’m so sorry,” she said with eyes flooding from compassion. “I brought you these,” she said holding up two bags full of girl scout cookies.
There it was. The slightest pearl of hope had been born even in the midst of my despair.
Lori delivered much more than cookies to me. She brought kindness and sustenance. She delivered relief to my friend who was worried about me. More than that she delivered the reminder that God was ever so close and that He would take care of me. He would provide my every need. If He cared about something so small as cookies, what would He not give me?
Thankfully, when my husband died I already had a close relationship with God. I hate to imagine how difficult it would have been to try to find Him in the middle of all the confusion. I knew He was right there carrying me because I knew where He was before disaster hit.
Some may think girl scout cookies showing up just after I had asked for them was a coincidence. My life is full of too many of these moments to be called coincidence. I call it divine intervention. I name it the hand of a loving God.
God is near to the broken-hearted. I imagine it is similar to how I am when my children are ill. My youngest son, Nathan, just recovered from pneumonia and a double ear infections. During his infirmary, he held on to me as if my very presence somehow made the illness feel less awful. Even in his sleep he was sure to be physically connected to me even if it was just his little hand on mine. By having me close he felt safe. His heart needed my presence because I am still, in his eyes, something bigger than he is.
He also knows that if I am near his physical needs will be met . When he is sick he is able to tolerate discomfort much less than when he is well. He knows that somehow I am able to assist in lessening the symptoms by giving him medicine or a cool cloth. He is still at that wondrous age when mommy kisses can actually make it all better.
It isn’t that I am more attentive but I am eager to do more for him. When he needed something to drink I would get it for him even though technically he could have gotten it for himself. But what would that say about me as a mother who would ask her sick child do something for himself when I could? I wanted to do all that was in my power to take away that discomfort of his illness by letting him rest and regain his strength. I wanted him to know he is so very loved because that does help even in the worst of circumstances. To know you are loved by another ushers in comfort, peace, and strength unlike anything else.
I love my children the same whether they are at school or sitting in my lap. The value and intensity of my love does not increase or decrease according to their proximity. What does altar is their need to feel my presence based on circumstances so I draw closer. I am available. I will do anything to help them including watching YouTube on end (a mother’s ultimate sacrifice, I would argue).
When my husband died I was ill. I was hurt. I was in a new level of despair I did not know existed and I wasn’t sure there was a bottom. For days and weeks it felt as if I was free falling but I was not alone. I had friends and family who though they could not be in that vortex with me, I could hear their shouts of love and encouragement. I could feel their prayers. I would catch an inkling of hope. I had days I only hoped I would be able to hope again.
Most of all, I had a God who would give me girl scout cookies.
My middle son, Wesley, has significant special needs. He was born with deletions on his first chromosome and is on the autistic spectrum. Although his chromosome set is incomplete, he is more complete than anyone I know. He loves abundantly and fearlessly. He knows no stranger. I often think and absolutely believe he loves the way God intended us to love – without prejudice, judgment, or reservation.
During my pregnancy I fully anticipated having a healthy, normal baby boy. Several ultrasounds pointed to this fact and no one saw anything out of the ordinary. The shock that was birthed with him was tremendous but so was the love.
When he was three weeks old my (now deceased) husband and I along with our two sons 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. I sat at the little table next to Emerson as he watched his portable DVD player. I wished I could be as he was, oblivious to the seriousness of the situation.
I could hear his 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.
An associate 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?” his associate asked.
I shook my head somberly no.
They excused themselves to confer. We sat in horrible silence waiting.
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 Synrome.”
The room began spinning. Words became incomprehensible. Though part of me knew he had some sort of syndrome when it was confirmed by a physician my entire world collapsed. 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 myself there on the floor with all the wisdom I have found over the last twenty 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 I would say, yes, he will be,” Dr. Buehler said gently.
“Does he have a normal life expectancy?” I asked. The only thing I could not handle, I knew, was losing him.
“We are not sure, honestly. The diagnosis was named in the 60’s. Both Dr. Rubinstein and Dr. Taybi are alive and practicing medicine. More than likely, though, he will have a shortened life but there is no reason to believe he won’t live until his 50’s or 60’s,” he replied.
We returned home to South Dakota and I immediately called my mother who was half way across the country. I could hardly speak as my tears were violently escaping. It would be the first time I spoke the words:
“My son will be mentally retarded,” I sobbed.
“So what?” my mother replied calmly.
There it was. Hope was born in despair.
“So what?”
She said it so matter of factly that I might have just as easily told her his eyes were green and I hoped they would be brown. Those two words simultaneously backed me off the ledge and put it all in perspective.
So what if my child would not learn as quickly as the others? So what if he might hardly learn at all? So what if I might have a perpetual child? So what if he was going to be cognitively impaired. So what?
My mother’s words handed to me another pearl for my collection. By itself it is still beautiful but not as it was meant to be. I would save this one and add it to the unbreakable string along with my resolve to create a priceless adornment.
When an irritant enters an oyster or clam, it’s natural defense mechanism secretes a fluid to coat the irritant. Layer upon layer of the coating is deposited until a pearl is formed (pearls.com).
God can and does instaneously hand me pearls. Other times the jewel must form slowly and methodically as I face adversities as minute as an irritant or as seemingly insurmountable as a formidable foe.
Wouldn’t it be wonderful if our natural defense mechanism was to create something lustrous and valuable from adversity? That is not my truth. My truth is it takes incredible effort. It takes conscious decisions that are not my natural instinct. I must choose to see the good even when it feels nothing but bad. I must choose to hold on to hope. I must choose my perspective and change it accordingly. I must choose to not allow bitterness and anger come close. I must choose to battle when they do 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 that I, personally, know how to obtain all those things. I must choose God.
I assist in the Grief Share ministry at my church. Once a week for thirteen weeks I have the privilege of sitting in a room filled with people who have lost a loved one through death. Privilege may seem like a strange word to use but the blessings I receive from being witness to healing and hope even in despair are abundant and precious. I am witness to God’s provision and miracles as their stories unfold.
The people who come through the door are from all walks of life. They are old and young, rich and poor. Their loses include friends, parents, spouses, children, and grandchildren. Their deaths can range from horrible tragedies to diseases to suicide to old age. The thread that weaves their lives together is that the people lost were deeply loved. They were loved enough that their passing leaves a chasm that, for a while, feels to be filled only with despair and mourning.
As I get to know my friends through Grief Share I notice that every single one of them NEEDS hope. We simply can not endure the pain without it. Some friends enter and their despair is so gigantic that hope seems impossible yet even in their suffering they long for it. Hope for healing. Hope to not hurt so terribly. Hope that justice will be served. Hope that they can stop crying. Hope that tomorrow will not be so insufferable. Hope that God is who He says He is.
Hope is an important subject for me personally. As the survivor of loss from suicide I know too well how hope and the loss of it is the literal difference between life and death. Hope was the main thing my husband lost when he chose to die and it was the only thing to which I could cling when I chose to survive.
When I was thinking about hope and despair I googled exactly that. This image or one similar came up several times:
The above picture is not my reality. For me hope and despair are not diverged paths. They are companions on the same road. They remain in extremely close proximity for much of the journey.
Hope is found even in the midst of despair and fear and grief. I would argue that is precisely where it is born.
When Wesley was just four months old we were invited to a gathering for children with Rubinstein-Taybi Syndrome, the diagnosis he carried for years until advanced genetic testing proved otherwise. I sat in the large room in the hotel as other families entered. I watched nervously as the older children gathered in front of the television to watch the Wiggles. The panic quickly escalated as some twirled and flapped their arms. Very few of the children could speak. I had never been around children with special needs let alone a room full. I was never in that club until that very moment. At the time I wanted to be anywhere else but there. Now, I am proud of and blessed by my membership.
A sweet couple introduced themselves and sat at the table with us. They told us Wesley was beautiful. They did not pity us but celebrated our son. It was the first time someone validated what my heart already knew – that he was fearfully and wonderfully made. He was worthy of compliments. He was entire. For the very first time since his birth someone congratulated me. In retrospect, that it would be a stranger made perfect sense for they already knew the blessings that awaited.
As we spoke their daughter wandered off. At four years old she could still not walk so she crawled over to the table where there was food. With the determination of a girl on a mission she reached up to try to pull herself to stand to see what goodies awaited.
“Honey, Erica is on the loose,” the wife told her husband with a giggle as a cue to gather their child.
The father obligingly scooped his daughter up and sat her in the high chair at our table.
“Bob the builder, can we fix it? Bob the builder, yes we can!” the father began singing with all the passion of a rock star.
His daughters eye’s lit up, she smiled, and began using sign language to sing along with her dad. It was the first time I realized one did not have to say a word to sing at the top of her lungs and with her whole heart.
There is was. At that precise moment despair had given birth to hope.
For months the fact that Wesley had special needs consumed my thoughts and fears. Each morning before my eyes opened I tried to reconcile the fact that the life I had was not at all the one I imagined. It seemed as if after every medical test there was another problem revealed. I was quickly learning a new language with abbreviations like SLP, OT, IEP, and PT. The doctors appointments and impending surgeries were numerous. I was overwhelmed with the notion that I was not confident in my ability to care for my non typical child and his vast medical needs.
Yet here was a family sharing my table and special needs was just part of their lives. It was not all-consuming. Their daughter had red hair, loved Bob the Builder, and had a syndrome. It was just on the list of things that made her unique but not abnormal. At some point, I hoped, a syndrome would not define my family but would rather simply be the background music, hardly noticeable unless I purposed to hear it. Maybe, just maybe, we too would find a new normal.
The truth of my life is that hope and despair are never far from one another. I can not metaphorically stand at a crossroad and follow one while leaving the other behind. They both accompany me. The choice I make is upon which one will I focus. Which will hold my hand while the other walks silently a few feet behind? Which one will help me balance when the terrain is unsteady? Upon which one will I lean when I am too exhausted for another step? Which one will know the way when I will assuredly get lost? Which one will become known to me as a best friend? Which one will I need if my missteps lead me off a cliff? Which one can I say, with confidence, will save me?
Only hope.
Throughout the years of my life despair has birthed individual pearls of hope. Each pearl is beautiful but only part of the greater beauty. Pearls are meant to be strung together to adorn the object upon which they rest.
Over the next several posts I will share other pearls of hope born from despair with the hope of adorning Him upon whom I rest.
Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us. Romans 5:3-5
I love the above verse but at times it seems to befuddle me. I do not know anyone who rejoices in sufferings while they are suffering. This may just be semantics but I do know it is possible to rejoice WHILE suffering but not IN suffering.
When I add Romans 8:28 to the above verse it makes a little more sense.
“For we know that in all things God works for the good of those who love Him and have been called according to His purpose.”
Almost seven years ago my husband died and I was the one to find him. The following is an excerpt from my journal:
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 core 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 waspart 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 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.
Looking back on that moment, at times as if it was yesterday, and re-reading Romans 5, I can offer this: while there was absolutely no part of my being that rejoiced in that suffering I do understand how suffering can and will produce endurance. It is even written into the very definition of endurance given by Merriam Webster: 1. the ability to withstand hardship or adversity; especially : the ability to sustain a prolonged stressful effort or activity 2: the act or an instance of enduring or suffering
Suffering produces endurance because the only way to be released from it’s powerful grasp is to endure it. When we try to run from it we prolong the inevitable – that it will catch up with us and more than likely with gained momentum. When we try to divert from it, usually in unhealthy ways, we merely inflict a new layer of suffering.
I wonder if sometimes it takes the patience to endure and waiting in order for hope to appear apparent enough for us to recognize it. I know that during my time in the ambulance on that day and for a long time after, hope was only a momentary, fleeting notion. There was never enough of it to which I could hold. Grief and suffering can be so overwhelming that initially all one can do is attempt to survive.
Then hope emerges.
It may have been dormant and it may seem like it took an agonizingly long time to emerge but it comes. Because of my belief in a good God despite what was happening to me I could hold tightly to the promise that He would bring good out of the impossibly horrific. I could cling to the assurance that if I endured then hope would come. I also knew I would have to wait and during the waiting it was imperative for me to work harder than I ever have. I would fight for the patience to endure. I would battle anger, grief, abandonment, loneliness, and even doubt. I would wrestle with unanswered questions and the relentless “what ifs”. I would have to clear enough space in my heart so that hope and love and new dreams could grow. He faithfully gave me the tools I needed in order to be victorious. It was not easy yet I had hope. And it did not put me to shame.
Our culture does not discuss grief. In fact, we do just about everything we can to avoid it. We don’t know what to say to someone experiencing it and few of us know what to do once we find ourselves in its powerful grasp. Grief is one of the great equalizers. We all must endure it.
I found out yesterday that a friend of mine passed away very suddenly. All grief is so very difficult but those unexpected loses do not give loved ones a chance to brace for impact. It blindsides you. It leaves you disoriented and reeling from the pain.
I met my friend last fall when she came to the Grief Share program at my church. She was drowning in grief but accompanied by her even keeled, ever doting husband. She was raw and honest about what she had endured. I instantly liked her and simultaneously felt great compassion for her situation. Even in the midst of her grief she was a person who filled the room. When she laughed you couldn’t help but light up inside. When she cried you couldn’t help but cry with her. She just drew you in. Her death comes as a great shock and my heart breaks for her husband and sons.
During the 13 weeks I had the privilege of getting to know her we shared very intimate details about our lives and our emotions. Our losses were different but the essence of our grief was the same. For a brief time we walked the same path on our journey. Her family now begins the walk all over after having already endured one other tragic, sudden, and unexpected loss. The grief they carry is too much to fathom.
One night during a Grief Share meeting I was able to share this with her and the group. It seems appropriate to share it again today. At the time of sharing it I wanted to lend hope to a room filled with people who had lost so much. Truly, when we lose that which matters the most often hope is the only thing keeping us afloat. It is all we have left but it is all we need to begin.
This morning when I left Charlottesville it was cloudy, windy, and raining but I was driving over the mountain to run some errands. I know that often when I get to the other side the weather is quite different. So, in spite of what it looked like where I was standing, I grabbed my sunglasses expectant to find something else entirely when I arrived. True to hope, as I reached the apex and started to descend the sun forced its way out and was shining mightily as if to show off its victory. If my life means anything, if I can impart anything to my children, if I can change my little corner may this picture be my deceleration.
There will be times in life when it is dark and cold where you stand. The mountain looms in the distance and you can’t be sure of what is on the other side. For a while you might pace at the bottom. You will stop and glance up overwhelmed by the task at hand. You may even lay down and wait for the strength for one more step. But you will stand back up. You scale the mountain and eventually joyful anticipation settles in with you. The journey will be challenging but there are streams and deer. There are flowers and birds. The sun will rise and the sun will set, sometimes with a glorious displays of hues and sometimes hidden. There will always be something for which to be grateful, even if it is that you draw breath. On the other side of the mountain is more than you could have ever imagined. Colors are more vibrant. Love is deeper. Your faith assured. You, like the sun, will shine magnificently in your glory.
Dearest Friend,
When I shared this with you I thought your mountain was like mine once was, grief. Re-reading this today I know you are on the other side and it is more than you ever imagined. Your smile and laughter will always accompany me. Shine on, dear friend. Shine on magnificently in His Glory.
The above picture is not my reality. For me hope and despair are not diverged paths. They are companions on the same road. They remain in extremely close proximity for much of the journey.
