Patience to Endure

Author: Jocelynn Easton

  • Even for a 20 year old

    Even for a 20 year old

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

    “We think so,” he replied.

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

    The prodigal daughter had returned.

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

  • So What?

    Hope is birthed in and from despair.

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    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.

    Each and every time.

  • Autism

    Autism

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

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

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

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

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

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

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

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

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

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

    “Will he be mentally retarded?” I asked.

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

    He could see the pleading in my eyes.

    “But yes. He will have mental retardation.”

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

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

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

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

  • 8

    8

    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.

  • In the clearing…

    In the clearing…

    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 

    (more…)

  • Soul Healing

    Soul healing is messy business. When I think of healing, my mind automatically goes to that of someone who needs to take it easy. I see someone resting in a bed somewhere. I don’t imagine the grueling hours of therapy. I don’t think of the sweat and the pain just desperately trying to get back to wherever you once were. 

    I like to identify with the type of healing that is passive. The type where you just lay back and let it happen to you.

    Soul healing is active. It is painful. It is humbling. It is admitting you have wounds that exist and scars that didn’t heal properly. Sometimes you have to excise those scars to get the infection out. That means opening up all that festered and became rotten. It necessarily stings. It downright hurts. It is exhausting. You would just rather let it be. 

    Ignoring it though doesn’t mean it isn’t there and growing in strength. It will still display its existence in the form of an unkind word or a broken promise or inability to be vulnerable and truly let someone in. It will infect another. An unhealed soul is contagious and does its best to damage others.

    Lean into it. Do the work. Admit when you are wrong. Make amends to those you have harmed. Forgive those who caused the broken part of you even if they never apologized. Forgive yourself. It isn’t yours to carry. Put it down.

    You deserve to heal. You deserve peace. The people you love and have yet to love deserve a healed you.

    Don’t be passive when it comes to your soul. Take time to cry. Rest. Seek professional help. Join a support group. Put in the sweat not to get back to where you once were but to not yield until you find a glorious new normal. And don’t ever let them tell you the damage is done whether it was to you or by you. You get to decide. It is your choice and I hope you choose to rehabilitate your soul.

    “Wounds don’t heal the way you want them to, they heal the way they need to. It takes time for wounds to fade into scars. It takes time for the healing process to take place. Give yourself that time. Give yourself that Grace. Be gentle with your wounds. Be gentle with your heart. You deserve to heal.” – Del Olanubi

  • Standards

    Standards

    Last night Steve shared something with me that popped up on his news feed on facebook. Someone shared “Every woman deserves a man who isn’t afraid to tell others you’re his girlfriend and that he loves you.” It made me quite sad to think her standard of being treated well is the bare minimum of what I would consider acceptable. 

    My standards are more like my cover page on facebook

    “Make her your everything in front of everyone every time.”

    But they were not always.. 

    I once had beliefs like the woman who posted on facebook because I incrementally, almost inperceptably lowered my standards. I think we tend to lower our standards for various reasons. We might excuse the person because he says he is doing the best he can and that alone makes things like inconsideration, disrespect, and callousness somehow acceptable. Perhaps we just want to keep the peace and not be so lonely. Deep down, I think most of us would admit a different reason – that we believe we somehow don’t deserve any better.

    But what if his best is not his best but rather a lazy excuse to not put in any effort beyond what is convenient to him? What if that doesn’t match my worth? Or what if what I perceive my worth to be doesn’t match God’s? What if those lies spoken into and over me that I accepted as truths were more a reflection of the person spewing them and absolutely no part of it was ever meant to enter my belief system about myself as truths?

    What if we really are lovable? What if we are worthy? What if we deserve so much better?

    We compromise in places we never should. We make excuses for their behavior. We blame ourselves. We think our expectations are unreasonable. We settle. And then we settle some more. 

    Here is what happens though when we wait for God’s best…

    Last year this time I was praying. I didn’t want to enter a relationship without His approval. I had done it my whole life and each time the results were disastrous. I asked God “Where should my heart go?” Clear as day I heard God respond, “To me. Just wait.”

    I knew it was God because it was not the answer I wanted to hear. Out of loving obedience, I waited. I didn’t know for whom I was waiting or how long it would be but knew if God had someone else in mind, that was who I wanted. I have been through enough to know, with all certainty, His plan for my life was the life I want.

    So I began to pray for this no named man. I prayed for his health. I prayed he was drawing closer to God. I prayed he would find the most beautiful part of me to be my love for Him. I prayed I would recognize him when he came. I prayed for patience knowing God’s time-line almost always feels a little slow to me. 

    Then in July Steven Easton showed up as a friend suggestion on Facebook. I had met Steve 13 years before. He was one of our favorite waiters in a restaurant my oldest child and I went to every week for five years. We had birthday parties there and almost every celebratory occasion. He knew my husband and that he died. He knew I had a child with special needs. We would run into each other around town over the years and every single time we would stop, exchange a hug, and catch up. He witnessed my life. 

    I knew when he broke his ankle. I knew when he got custody of his son. I attended his wedding.  I knew when she left and I prayed for his heart the moment I found out. I had witnessed his life. 

    I sent him a friend request with no romantic intention whatsoever. He was a friend but I also knew I was a decade older than him. He immediately sent me a little video clip of himself saying hi and telling me he would love to catch up. 

    We began chatting and for a while I was still unaware this man had any intention other than catching up with an old  friend. Then the question came in one of chats. “Soooooo, are you single?” 

    A couple of weeks later we were sitting on my back porch swing looking up at the stars. I prayed again. I got bold. I asked God for a very specific sign. I asked Him for a shooting star if Steve was the one He sent for me. The second I finished my request, a shooting star filled the sky and brilliantly traversed the night sky. Then a second shooting star appeared. My eyes welled with tears of gratitude to a God who would hear me and leave no room for doubt in His answer. 

    We have been inseparable since. Instead of lowering my standards though he raised every single one to the point I now wonder how I went my entire life settling so drastically. 

    Just as we lower our standards for the wrong person, I believe with the right person our standards are elevated. We are loved enough for the effort to occur. Our worth is acknowledged.

    We are seen. 

    If you ask Steve about it chances are he would say “I just love her. You don’t congratulate a fish for swimming.”  But when you’ve lived your whole life in an ocean with those poisonous fish who just lie in the sand and gobble up whatever happens to cross its path, you celebrate the heck out of a fish who is vibrant and swimming beautifully with the sole purpose of feeding others. 

  • My Mother’s Robe

    My Mother’s Robe

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

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

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

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

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

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

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

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

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

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

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

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

  • Table Mountain Pine

    Surreal. Unprecedented. Nightmare. Global Pandemic.

    Racing to get my son from New York University as COVID-19 landed in the Big Apple and began it’s insidious journey marked for me the moment Coronavirus disrupted our daily lives. I imagined with great sadness that it would change life as we all knew it as I watched the city that never sleeps fall into a chaotic slumber.

    Having a child with special needs and an elderly, asthmatic mother living in our home put us on high alert early as well. Within the next week all schools were canceled. Difficult in and of itself, closing a school for children with autism was and is an unparalleled challenge for families like ours. Wesley’s routine has been disrupted entirely. The one thing he can not tolerate well at all is the one thing we’ve had to do to keep him safe. And he just doesn’t understand why.

    A Tuesday drive through Skyline Park was exactly what my soul needed. Steve and I embarked out on a mostly empty road scattered with occasional hikers.

    At one stop there was a sign explaining the Table Mountain Pine tree. It read

    I instantly became fascinated and fell in love with the Table Mountain Pine. They live in the rocky parts of the Appalachian Mountains where other trees fail to survive. They are dependent on fire to regenerate. The seeds of the Table Mountain Pine have a thick coating and can be dormant for years. They await the fire and only once the fire hits can new life begin. As the heat causes the thick coating to melt away they finally, and I imagine gloriously, release seeds ready for the scorched earth that has been cleared. There is nothing to compete with birth in the nutrient rich soil while it finds its roots.

    God actually made trees that could only survive by and with fire. As people, we feel fire is the end of us. We can’t imagine how we will survive. We are sure everything will be taken and all we will have left is ashes. All we see is loss and destruction.

    The Table Mountain Pine survives because God created it to persist not in spite of but because of the fire. He created it to endure, waiting several years for the heat and embracing it knowing the opportunity has finally come for the creation of new life. It can only do so on an earth that has been blistered and scalded having everything stripped naked and clearing the way for those precious seeds.

    It endures because of the fire.

    I have had the dubious honor of having times in my life when my world changed drastically and suddenly. I have been put to the fire more times than I wish yet enough to tell you this: there is rebirth in the process. There is hope that maybe not today or tomorrow but eventually it will get better. There is even hope that things just won’t get any worse. There is hope that you will be able to hope again.

    My blog site is called patience to endure because I have found that all we really need is just that, that and God.

    I have lived through the unsuspecting birth and subsequent raising of a child with significant special needs. I have lived through three times holding him in the hospital PICU begging God to not take my child. I have lived through driving my first husband 18 hours straight to get him to rehab for opiate addiction. I have lived through being the one to find him dead from suicide. I have lived through picking up those pieces and being a single mom for many, many years until God sent me the gift of a lifetime in the form of a soul mate disguised as an old friend.

    The world has changed suddenly and drastically because of COVID-19. It is overwhelming and drains me to my soul when I think about the ramifications of this virus’ assault on humanity. My heart hurts for my oldest son who is attempting to pursue his theatrical training on line from his room rather than the exciting city of New York. I become melancholy when thinking about all the people who have lost their jobs and don’t know how they will pay the rent or buy groceries. I am crushed to hear the stories from Italy of doctors having to decide who lives and who dies because there is not enough equipment. I cry when I pray for all those battling the virus and their loved ones helpless to do anything.

    We live with a heightened and unprecedented sense of fight or flight as we suddenly have to be aware of what we touch and what we don’t touch. It is exhausting. It seems hopeless. But it isn’t.

    The Table Mountain Pine, my new favorite tree, knows the fire is the reason it was made. What if, just, what if, we were made for that too? What if this fire of a global pandemic is our opportunity to melt away the thick coatings around our hearts? What if within the ashes in which we now find ourselves to be is actually the perfect condition to rebirth and rebuild? What if this is the opportunity to burn away all we thought was important because we discover it really wasn’t after all? What if through all this we realize we can grow new priorities, new kindness, new compassion, and new love?

    It won’t come instanteously and it won’t be easy. So much of it will depend on how we view it. We can look at the ashes and all we once held as dear as the remnants of a funeral pyre or we can see it as an opportunity to plant new seeds in barren but eager ground.

    I choose life. I choose re-birth. I choose to let God determine if this is the moment for which I was made. I choose to not depend on my thinking as to whether or not I have lost too much knowing God will restore what was taken in His time and His manner. I choose to know I am strong enough because I know God believes I am. I choose to allow the fire to be the exact moment in the history of my life and the world to scatter my seeds understanding the new life may not be seen as quickly as I like but trusting it will appear in its time. I choose to allow God to give me the patience to endure.

    The fire will change me. It always has and I don’t suspect this time will be different. How it changes me is about the only thing over which I have power.

    Defeat or Victory.

    Tragedy or Triumph.

    Destruction or Regeneration.

    The choice is mine. It is yours. Your children are watching closely, probably closer than you know. Choose wisely. Choose victory. Choose triumph. Choose regeneration not in spite but because of the fire.

  • Distillation

    Steve and I were at the store today. Shelves were empty. People were wearing masks. There was something sobering in the air. Life in America had changed very suddenly and very drastically.

    The cashier was telling me about how the truck was two days late. He said people were lined up before they opened and one woman bought six packs of toilet paper. He wasn’t sure what she needed that much for but surmised she was going to try to sell it at a markup, of course. I told him I can’t find rubbing alcohol anywhere. I explained Wesley has special needs and I need it for disinfecting and cleaning g-tube supplies. Supplies people are hoarding are the very things some families need to live.

    He called his manager over. With sympathetic eyes her heart listened to me. She told me they may be getting a shipment of rubbing alcohol tonight and to call later. She would see what she could do about setting aside a couple of bottles for me. As we were leaving, she came out chasing us. Handing us a box sanitizing wipes she asked if it would help. She apologized that it wasn’t alcohol based.

    I read a story later about a pair of brothers who, when the crisis first broke in America, bought as much hand sanitizer as they could find. They sold it on ebay and amazon at an enormous mark up until customer complaints had them taken off the sites. The brothers now have nearly seventeen thousand bottles of hand sanitizer with no way to sell it. Meanwhile, hand sanitizer is the most effective way I can protect my son with special needs. Wesley is eighteen years old but cognitively two. He can’t wash his hands for twenty seconds. He doesn’t understand to not put his fingers in his mouth. Yet I can not find it anywhere other than sweet friends who have found some and are willing to give it to us.

    There is something so powerful about a crisis that reveals the best and worst not just in humanity but in ourselves. It does not create something within us that was not already there. It simply exposes what already exists.

    A lifetime ago I wanted to become a physician though I took a bit of a circuitous route and never actually got there. After graduating college I was a professional ballet dancer in New York City. Realizing it was not a lifestyle conducive to my personality I moved back in with my parents. I worked full-time and in the evening took the prerequisites with the dream of taking the medical college entrance test.

    My organic chemistry class was twice a week in the evenings. Almost the entire student body was, like me, working full time jobs and then going to night school. Our lab class was once a week from 5:30 to 10:00 pm. The professor would give us each a small beaker with liquid. We were to distill it to get rid of contaminants and then run several tests. With our little lab books we would approach the professor and tell him what we believed the compound to be. If we were right we would pass. If we were wrong we would fail. There was no in between.

    As you can imagine in a class filled with people who had just worked eight plus hour shifts, we were prone to short cuts. Not one of us wanted to take the time to distill it so none of us did.

    A few weeks into the class we were all stunned when our answers came back wrong. My professor’s response to me was simply, “must have been contaminated” and a shoulder shrug. Indeed, I learned my lesson.

    The distillation process was necessary. The heat applied rid the compound of impurities and boiled it down to its very essence. It had to be purified in order to know what was actually there.

    Coronavirus is our distillation process. I don’t believe it is going to create heroes or villans. What it will do is reveal within each of us and one another exactly who the heroes and who the villans are.

    I’ve had times in my life I was sure excruciating heat was being applied to the core of me. My soul was being purified.  The distillation process was and is a painful one. Each time everything was stripped away and I was left with these simple questions:

    What is really important?

    Who am I now?

    What does this reveal about me and what I believe?

    Admittedly, life has a way of clouding those questions, contaminating them. Impurities make me forget the core, the purity, of what is vital to who I am. There is nothing like a global health crisis to immediately extract the impurities.

    COVID 19 has caused an heightened sense of survival unprecedented in my life time. My childrens’ schools have been closed. A few days ago I went to New York to extricate my oldest from NYU. Social activities have been canceled. No more shopping trips for fun. Life has come to a screeching halt for us and for every responsible person who understands the significance of self sacrifice for the greater good.

    My life has been distilled down to keeping my family safe and preventing spread of the virus as much as it is up to me. At this moment nothing else matters. I know some who do not feel the imperative need for social distancing. They either don’t understand or don’t care about the significance of continuing to engage in crowded social activity. Their carelessness could literally kill my son, my mother, and myself who are all in the highly vulnerable category. I imagine the distillation of their life reveals a selfishness and disregard and I wonder how they look at themselves in the mirror each day.

    The cashier at the store this morning has been distilled down to kindness. He didn’t know me but he heard my heart and showed extraordinary care for a perfect stranger. His manager who gave us wipes also showed us what was at the core of her and it was lovely and selfless. The brothers and all those hoarding supplies are distilled down to greed and are, I believe, some of the worst parts of humanity.

    This is just the beginning. It is surreal to be standing on the precipice overlooking the vast unknown but having the certainty that life as we know it has changed. Further distillation will happen. As our boiling points are reached who we are and what we are made of is revealed. There is no reason to believe, based on the path left by this virus, our family, our community, our country will escape unscathed. When it is distilled down to the core, when all the extraneous things are taken away what is left of you? What is really important to you? Who are you now? And what does this reveal about you and what you believe?

    My prayer for you and for me is that we find out we are kinder, more compassionate, more helpful, more loving, more selfless than we ever knew.