Patience to Endure

Tag: God

So What?

Hope is birthed in and from despair.

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.

January 31, 2018
Only Hope

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.

January 30, 2018
To Love Another Person is to See the Face of God

I drove to Norfolk, Virginia on Saturday to take my oldest son, Emerson, to see Les Miserable. It was the first Broadway production I ever saw almost thirty years ago in New York City and it was his first time of seeing it live. I was his age when I first laid eyes on an actual Broadway production and was in complete awe.

As I watched the thrilling performance at Chrysler Hall, though, I felt a little confused. I had seen it on Broadway twice during my days at NYU but I didn’t remember all the references to God. How could it have been that I didn’t realize the entire show is about Grace and redemption? The main character Jean Valjean experiences one single act of grace in the name of God and is redeemed. His nemesis chases him relentlessly because of his overwhelming need for ‘justice’ in the name of God and is doomed. Was I just not remembering well because it was so long ago? Or was it because my 18 year old heart would not have even noticed the love story between God and Jean Valjean but would have identified with the love story between his adopted daughter and her suitor? Both are “love at first sight, I can’t live without you” stories but only one, at the time, was my fairy tale. It would take many years before the other was my truth.

I watched the performance through the eyes of my then 18 year old undiscovered self and the now 47 year old mother I have become. One lense clear but naive and the other worn but all the more wise.

In one of the songs Jean Valjean sings

“He gave me hope when hope was gone. He gave me strength to journey on.”

As my 18 year old self I would have had no clue what that meant. That single, climatic line from an entire song would have been lost on me. I had never lost hope before. I had two parents who loved me. I had piano and ballet lessons. My parents attended every recital. I had no situation ever in which I felt hopeless because I had not yet faced off squarely with adversity. I never needed strength to journey on in my middle class home in a quaint little town nor in a private university in, arguably, the greatest city on Earth. Life was charmed and it was all I knew.

My 47 year old agreed whole heartedly with that line as evidenced by the tears in my eyes as it was sung. How many times, I thought, in the last 30 years had I lost hope?

There was the time Wesley was a year old and in the Pediatric Intensive Care Unit. He was terribly sick. He was dying. Every specialist at the hospital came to see him. For unknown reasons his liver functions were terribly elevated. The lead physician offered this to me, “We do not know why he is sick or if he will get better. We do not know how to treat him because we don’t know what we are treating. If you pray…I would just pray.”

I heeded his advice and though for years I had only been attending church on Easter and Christmas I found my way to the chapel in the hospital. It was the first time in a long time I had spoken to Him. He welcomed me back and answered in the way I asked. The next day Wesley miraculously turned the corner. As unexplained as the illness was they could offer no explanation for his recovery. But I could.

A few years later Wesley wanted to go downstairs to see his sister who was watching television in the basement. Unbeknown to me, he figured out how to open the door at the top of the stairs. Since he did not have the physical or cognitive ability to walk down the stairs he fell, went over the banister, and hit his head on the marble floor. When I heard Leah’s screams and saw him on the floor with hands and feet retracted I knew he had a brain injury. The CT confirmed his brain was bleeding. The neurologists spoke similar words to me when he said, “Do you have family to come be with you? We do not know if the bleeding will stop but there is nothing we can do. It is a wait and see but you should prepare yourself.”

This time I did not find the chapel. Sitting in a metal chair in the sterile hallway of the hospital I bowed my head and cried the simplest prayer but the only words I could gather:

“Please just give me the strength to face whatever it is I must.”

It would become my anthem and I would repeat that prayer again and again in the years to come.

On February 10, 2011 I found my husband dead in the woods behind our house. I had left him ten minutes before after we finished praying together. No heroic attempts were made to revive him by paramedics. Even I knew it was too late.

Later that evening I had to tell Emerson when he returned from school that his father was dead. It was the single most difficult conversation I have ever had.

His best friend’s mother was immediately called after Gary died. She was asked to take Emerson home because the police would likely still be at the house when school was out. She graciously took him to his favorite restaurant with her family before bringing him home. Her husband walked Emerson in and didn’t speak a word but his eyes told me he was sorry and that we were loved. In Chauncey’s face at that moment I saw God and I recognized the beauty in the midst of unbearable ugliness. It was a tiny shred of hope in the knowing that I was not alone.

By the time I was 40 I was well acquainted with hopelessness and I despised her. Yet having fought her before I knew she could not defeat me because I knew God would give me hope when hope was gone. I wish I could say it was instantaneous and prolonged. I wish I could write that I did not spend time in that purgatory of waiting but I can’t. It was a process, at times an excruciatingly slow process, but it emerged.

There are times in life when all you can do is hope for hope.

God gave me strength to journey one. In the early days after Gary died there were times all I could do was one thing per day. After whatever the task was I had to lay down and recharge. The smallest upset could make me feel unraveled. I was raw to the core.

For some reason strength did come instantaneously. Some days it was the strength to get out of bed. Others it was the strength to eat dinner. I was given the strength to journey on though I did not know, and still am unaware, toward what I am journeying. At some unmarked moment though, the journey went from surviving the grief to receiving His great promises and with joyful anticipation the promises yet to come.

Another strong theme that escaped me as a young woman watching Les Miserable was Grace. I once heard a speaker say that we really can’t understand grace until we have to ask for it.

My 18 year old self would not have needed much grace. I had not yet hurt someone deeply. My infractions, though a headache to my parents were nothing beyond normal teen age rebellion. The current woman sitting in that theater had asked for grace time and time again. I have a long list of violations that not only hurt other people, they broke the very heart of God. I know Grace. I know it well.

Finally, the theme of sacrificial love would not have been on my radar as an 18 year old young woman. I was the recipient of incredible sacrificial love but I didn’t know it as such. It never occurred to me what my mother sacrificed as she drove me five nights a week and sat in the car while I had ballet lessons. I did not consider my exhausted father coming home from work. My very attendance at NYU was sacrificial love from my parents yet at the time I sadly admit I did not appreciate what it took to have me at that school.

My 47 year old self knows sacrificial love because I have children who are the greatest conduits for that. To me it just feels like love but there are times it is sacrificial. There are moments when I feel ill but must put my needs aside and care for my children. The very nature of parenthood, when done well, is sacrifice. It is loving someone more than you love yourself. As a teenager I believed I was the center of the universe. I simply could not love anyone more than myself because I never had to. As a woman worn from scars, it is the only way I love. To me it is just not worth it to love any other way.

The last line our hero in Les Miserable sings by himself is

To love another person is to see the face of God.

To love another with grace and sacrificially is to see the face of God. When we reach a point when we can pour that kind of love out to another independent of their perceived worth and when we can receive it independent of our own we are shining the face of God. Time, tears, trials, triumphs and God taught me and taught me well.

I glanced over at my son during the performance, painfully but joyfully aware that my truth at 47 is his at 18. He is not like I was because he has endured everything that I have. He slept in hospital rooms with me. He saw his father laying in a casket. He stood next to me, arms raised praising God even at his own father’s funeral. To quote his own words, “We sail on the same tattered but triumphant ship.”

I am grateful that he did not have to wait thirty years to know love on God’s level but it breaks my heart that he has had to experience incredible adversity for this achievement. He is only 18 but carries with him the wisdom of a lifetime. This mother’s heart knows it will not be wasted because God never wastes a single thing. Not one tear will He leave unredeemed.

He gave me hope when hope was gone. He gave me strength to journey on.

To love another person is to see the face of God.

Indeed and Amen.

January 29, 2018
Then Hope Emerges

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 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 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.

He has and He will.

January 25, 2018
Never lost

My middle son, Wesley, has deletions on his first chromosome and is on the Autistic Spectrum. Life can be and often is overwhelming for him. His haven, his refuge is the car. He will ask several times a day to go for car rides. It is part of his routine and for twenty minutes several times a day he can “re-set” in the confines of my minivan where the sensory input he is receiving is limited and predictable.

We have found a few beautiful routes that bring us through Western Albemarle County. The back roads offer horses and cows, mountains and fields. We see gorgeous wineries and tiny cottages. When we catch the sun at the right moment it takes my breath away. Indeed, I frequently pull the car over to snap a picture of God’s masterpiece.

Last night I took him on one of the routes I normally take him on during the day. As I was driving I realized how very different it looks under moonlight versus the sunlight. I thought of the irony that the darkness exposed things the light hid. As I continued to drive I could see the silhouette of the mountain in the distance. The majestic site has been a part of my daily living, even subconsciously, and I know the mountain well. I know its shape and size. I recognize the skyline and where it dips and peaks. I had glanced at it countless times over the last fourteen years. My familiarity with it at some point made the mountain become a point of reference. It wasn’t as if I had made a concerted effort to study it. It’s presence in my life was within a close enough proximity that it just became known to me.

As I continued to drive I realized my GPS was frozen, I had missed a turn, and was on an unfamiliar road. For a moment I felt a tinge of panic trying to figure out where we were. Then I realized if I just kept my eyes on and aimed for the mountain I wasn’t lost. It’s enormous, unmistakable presence even in the dark and in the distance would be my guide. I only needed to know my position relative to it to be safe. The road I was on twisted, turned, and narrowed. At times it even went back on itself. My position was constantly changing but the mountain remained steadfast.

Even in the dark and foreign terrain I could tell which direction I needed to go because of that resolute and unwavering mountain. Had I been a visitor in an unfamiliar land I would have surely been lost. Had I not paid attention to the intricacy of its shape and size and known it well I might have been confused and followed the wrong mountain. If I did not appreciate that which surrounds my home and makes it mine I would not have known which way to go.

We found our way back to the main road. The detour we had taken was not frightening. I was never hopeless or needed to use any other means of finding my way home other than my knowledge of the mountain. I was never lost. We turned the music up. We danced in our seats. We enjoyed the journey even in the darkness through the unknown. See, it was the certainty that no matter which way the road took us I could maneuver my vehicle ever homeward that gave me peace and kept us safe.

Life does look different in the dark than in the light. Often we find ourselves in confounding situations. We are thrust suddenly on a path we do not recognize nor did we anticipate. Sometimes it is by our own fault and others it is because of the actions of someone else. But I offer the notion that even in the midst of uncertainty and even darkness there is always music, always laughter, always hope. You are never lost. You can always find your way if your eyes are fixed on He who does not change and who will guide you safely and triumphantly home.

January 19, 2018