Patience to Endure

Tag: special needs

  • Two Crosses

    Two Crosses

    As Easter approaches I have been thinking about the Cross. To the Romans, at that time, it was a means to inflict the most shame and send a resounding message of defeat. They had several methods of capital punishment but reserved crucifixion to leave a lingering message to their enemies. It was the most painful and disgraceful punishment in an arsenal that included strangulation, stoning, and burning.

    Yet the lingering message the crucifixion of Jesus was not what the Romans intended. As Christians we do not see shame, defeat, or disgrace when we look at a Cross, the symbol of our faith. We see redemption and resurrection. We see victory. We see love so great that even death could not consume it.

    Growing up in the Christian world I have heard, “we all have our cross to bear” countless times. In Luke 9:23 Jesus says “And He said to all, If anyone would come after me, let him deny himself and take up his cross daily and follow me.”

    However, “we all have our cross to bear” was almost always said to me with a negative connotation. We use it when discussing hardship or challenge. The image it would immediately bring to my mind is Jesus carrying His cross up that hill to die.

    But what if that is the wrong image of the cross I bear? Am I thinking of the Roman cross or Jesus’ Cross? Upon the Roman cross is nailed a punishment but upon my Jesus’ cross there is an invitation, the sweetest of proposals. What man meant for torture and shame only by the power of God was transformed to give life and promises both for now and eternity. What was meant to kill a movement changed the entire world and every heart for those who truly believe.

    My thoughts about the cross of Jesus turn to my own personal cross. What is that one thing that was meant to, or could have, destroyed me but by the power and Grace of a loving God became my triumph?

    I live in a complicated, beautiful world of special needs and autism. I can’t recall the specific moment I went from being a timid, frightened mother to a banner waving, “wohoo special needs is awesome” kind of mom. It was a natural progression and at some indescribable moment the cross I carried was transformed from a death sentence to a life promise. I discovered that the cross I bear doesn’t have to be the one society gave me but must be the one God intended for me.

    My mind and my heart made the decision that my cross would represent life and love and power. My faith allowed God the opportunity to give me the ability to accomplish this. Special needs could have destroyed who I was instead of transforming me into who I was meant to be.

    Make no mistake, it is a difficult world in which we who love someone with special needs live. We often feel isolated and different because we are. Other mother’s of teenagers are busy going to basketball games or track meets. I am going to every sensory friendly event offered and doctor appointments with every specialist. I am often exhausted. Everything others take for granted can be and often is an overwhelming challenge to my family.

    It is not easy. It is impossible to not be changed by living in the world of special needs. It is possible to decide what sort of change will take place.

    The world in which we live is colorful. It is filled with hugs and joy. It isn’t about the fact that my son cannot speak, it is about the fact that he speaks with no words. Everything others take for granted can be and often is an overwhelming victory for my family. It is life amplified. The lows are heartbreaking but the highs are found in heights I could only appreciate by having a child like mine.

    I do not choose whether or not I will bear a cross, I choose what my cross looks like and how I carry it. I decide whether or not it will represent shame and disgrace or the glorious promise that God works all things for good. I alone can cast my eyes down in despair or raise my chin and hold my head high.

    What is the cross you must bear? Is it abandonment? Your addiction? The death of a loved one? A medical diagnosis? Mental health struggles? Guilt? Will it be a cross of shame that you hang upon despondent and alone? Or will it be a cross of promise for all to see and perhaps extract hope for themselves?

    The important part to remember is the cross you bear doesn’t have to be a cross of disgrace just because society deems it so. It can become the cross of redemption, resurrection, and victory because God deems it so. He deemed it on Calvery and He deems it in your situation.

    It is entirely up to you to choose which cross you will carry. The rest is up to God and He never fails.

  • Joyful Expectation

    I wait for the Lord, my soul does wait, and in His word do I hope. Psalm 130:5 

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    My middle son, Wesley, has a favorite game that I play with him. Though he is sixteen years old deletions on his first chromosome have left him cognitively a three-year old. In our game Wesley lays down and I am next to him. I will smile and say “Oh, my, where should I…..” I pause for a few moments as Wesley squeals and giggles with absolute delight. He knows that after the exaggerated pause I will either kiss him, tickle him, or boop him on the nose. For him the fun of the game lies in the anticipation with the expectation that something marvelous is about to happen.

    His entire body will twitch with excitement. His laugh comes from the depth of his soul. He is not anxious or worried about what is to come. Even with his severe cognitive impairment he knows that he is dearly loved. He knows that I am his mother and only have good things planned for him. He waits to see what is going to happen with joyful expectation.

    When I grow weary from waiting for God I think of this game with Wesley. In my scenario I am the child waiting with joyful expectation as God is right next to me. Even with my limited, human capabilities I know He is good and that He loves me. I am assured that when something is to come from Him it will be more than I could have ever asked or imagined. Every single time.

    Often in my life I have found myself waiting. When I rush ahead of what God is trying to do I ruin the surprise of what He had in mind. Moreover, my plans are never as great as His. If I am being wise waiting for Him is not an option, it is compulsory. How I wait, however, is my choice.

    I can wait with joyful expectation. I can rest in the knowledge that doors are opening and closing as His plan unfolds. Perhaps hearts are softening, even my own. Conversely, I can wait with anxiety and dread but there would be no purpose in that. It would only cause me to be in a place I do not need to be.

    For we have the blessed assurance that God will deliver something loving, something kind, something we long for, something that tells us we are His and we are loved. Forthcoming is something magnificent like a kiss, a hug, or a boop on the nose from a beloved parent.

  • Rather A Privilege

    Taking two children to a store doesn’t seem like a big deal. However, Nathan is five ears old and Wesley is sixteen but cognitively closer to a three-year old. He has autism. Genetics are strong, though, and like his mother he loves to go shopping.

    We pulled in to the lot of Target and I turned around to see that Wesley managed to take off both his socks and shoes. I glanced out my window and saw families just jump out of the car and go in. For a moment I envied the simplicity of their lives. I envied the fact that they probably did not even know the ability to go easily into the store was something to be envied.

    I put Wesley’s socks and shoes back on. His feet are deformed and socks do not go on easily so it took a few minutes. I made sure his sippy cup and two extra bottles of Pediasure were in my purse. I grabbed the IPad with the most charge to ensure it wouldn’t die while in the store for that could be catastrophic. I checked that everything had straps and clips to tie to the cart as to not injure anyone from flying objects. Wesley often throws items when he is no longer in need of them. Sometimes he throws them to get your attention because he cannot speak. A simple solution to him can be painful for the one getting hit in the head with a full cup.

    I unstrapped his seat belt which has a special safety device to prevent him from unbuckling himself. Wesley’s brain often takes time to process what is occurring so he rarely gets right out of the car. He has to sit and look around and wait until he understands what we are doing. Life with Wesley requires patience and I don’t mind waiting. Forcing him to move faster only stresses him out in a way I do not understand.

    Finally, we stood outside the car and I looked toward the entrance. It might as well have been a mile away because one million things could happen between where I was and where we needed to be. Wesley might decide he wants to go home. He might want to sit down in the middle of the parking lot and not move until he is ready. He may have a melt down for reasons I will never know. All the while I will have to keep Nathan safe both from cars and Wesley’s “enthusiastic pats”.

     

    As I began to feel overwhelmed and I had not even reached the store yet I remembered all the times I held him in the Pediatric Intensive Care Unit unsure if he was going to live or die. I thought about the time when he was only one year old and was connected to so many monitors I did not even know what some of them were tracking. He would cry every time I tried to lay him down. I sat in the rocking chair of the hospital most of the night trying with all my strength to stay awake to keep holding him. Eventually I relented and knew sleep would not be defeated. So I placed him in the crib and crawled in next to him. The next morning the nurse came in to find me curled up asleep.  She exclaimed “In all my years here I have never seen this.” I did what I needed to so that he always knew I was near.

    In my heart’s mind I see the faces of dear friends who had to bury their children. I live in a world where children die at a disproportionate rate than most people’s experience. I know those parents would give anything to take 30 minutes to get from the car  in the parking lot to Target. They would give up an appendage to have to put their child’s shoes on for the fourth time before ten o’clock in the morning. I recall standing in a funeral home to offer my sympathy to a mother and father as their child laid in a tiny casket. I remember my heart breaking that they even make caskets that small and that my friends needed to buy one. From their perspective, I am sure, these are not minor inconveniences. Rather, they are privileges.

    Standing in the parking lot I gaze at Wesley and I hear myself whisper, “Thank you Jesus.”

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  • The Root

    “Expectation is the root of all heartache.”

    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.

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  • 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.

  • 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:

    20180130_074525The 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.

     

  • 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.

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    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.

  • Just Say Something

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    Before October 26, 2001 I can honestly say I never wondered what it would be like to have child with special needs. Growing up in the 70’s and 80’s there was no such thing as inclusion. The kids with special needs had their own classroom at the end of the hall. We never interacted with them. I wish I could say I was kind but I never had the opportunity to be anything to them.

    I never wondered what those families were like. I didn’t consider what challenges the parents faced and how their siblings coped. I never wondered what kind of adjustment, what paradigm shift, would have to be made physically, emotionally, even spiritually when given a child with special needs. It was the furthest thing from my mind and remained as such until the moment my then husband brought our second born son to me after my cesarean section.

    “Here is our son. He has some anomalies, isn’t he beautiful?” Gary said showing me my barely five-pound baby wrapped in a blanket.

    Gary was a maternal fetal medicine specialist. His practice specialized in high risk pregnancies. He performed ultrasounds for the hospital. In fact, I had four different physicians scan my womb while pregnant with Wesley. Early on they thought there might have been an issue with his heart but it seemed to naturally resolve by the time I was 20 weeks pregnant. We were given the “all clear.” How, I wondered, could there be anomalies and not one of those physicians saw any?

    “Anomalies? What anomalies?” I asked not sure what emotion was speaking.

    “He has a hypospadias, clinodactyly, and these broad thumbs. He is a little small and has central hypotonia. The geneticist will come see him in the morning,” Gary said as if explaining an interesting case.

    My mind began racing. Having worked with Gary I knew the adage MFM specialists used. When doing an ultrasound one anomaly was probably nothing, two might be something, but three was almost always a syndrome.

    “Do his toes and fingers count as one or two anomalies?” I asked searching. “Is that more than three?” I asked as panic settled in my voice.

    I glanced around the operating room. No one was smiling. No one would make eye contact. It was as somber as a funeral.

    “We will see what the geneticist says,” Gary replied.

    When Emerson, my first son, was born my hospital room was filled with flowers and adorable stuffed bears. There was a steady stream of visitors and squeals as they delighted in my perfect little boy. When Wesley was born there were no flowers. There were no stuffed animals. No visitors came.

    At the time it felt much like rejection. It compounded my grief because it felt like no one was happy for me. Yes, he was not physically perfect but he was born and he was mine. Was that not cause for celebration? Yet no one came. No one celebrated for or with me. We were avoided by everyone except one couple who were dear friends and our families.

    When Gary’s father called after we already returned home from the hospital I finally realized why people avoided us.  They did not know what to say. This became painfully obvious during the awkward conversation with my father in law.  After initial stutters and silence he offered, “I am so sad about the baby” as if my child had not been born at all.  His heart was true and his motives kind. However, I wanted to hear “congratulations!” I wanted to hear that my baby’s birth was the reason for as much joy as if he had been born without challenges. I did not want to have to reassure him that everything would all right. At that moment I wasn’t even sure myself. It hurt to hear someone feel sad my child was born, at least that was what my heart heard. Yet I knew even then that what he said was well intentioned and I appreciated his effort.

    It is human nature to avoid uncomfortable situations. As someone who has been on the receiving end of a few very difficult situations I know how silence is profoundly lonely. It is painful. It is a void no one wants to feel.

    On the other hand, people often resort to cliché’s when unsure of what to say. Though those are well-meaning they often end up falling short and end up causing harm. When Wesley was born I often heard, “God doesn’t give us more than we can handle.” This would always bother me. My intention is not to get into a theological debate but I, personally, believe that life absolutely hands us more than we can handle. While I don’t believe God causes it, He allows it. If we only faced that which we were capable of enduring there would be no depression, no anxiety, no addiction, no suicide, no need for God.

    After my husband died I almost cringed when people would say, “He is in a better place.” Those of us reeling from suicide know our loved one isn’t supposed to be in a better place yet. He is supposed to be here with us. It also brings to the surface the reminder yes, he is where there is no more pain and no more suffering but I am here still, in indescribable pain and intractable suffering because of his absence. It fuels the anger and abandonment we are already trying desperately not to feel.

    I teach my children when they don’t know what to say to not resort to clichés.  There are even times Bible verses can hurt. When someone is in mourning and she hears, “Ya know, the Bible tells us blessed are they who mourn for they will be comforted” it does little to help. While it is true, when one is in the depths of mourning one often does not yet see the blessings. She just sees the darkness and the unbearable pain. It may take a long time before she understands what that verse even means. It may even make her feel inadequate or not spiritual enough because she feels a lot of things but blessed is not one. She may feel exceedingly grateful for the support and comfort received but knowing gratitude and feeling blessed can be two entirely different understandings when deep in the darkness of despair.

    As in the case with my father-in-law, he said the wrong thing but his heart was trying. Silence feels like not trying. It is avoidance during a time when a friend needs anything but. Saying the wrong thing, for me, felt better than saying nothing.

    When Emerson faced a situation and he knew he needed to say something but didn’t know what that should be I encouraged him be genuine. I explained to him that saying something is always better than saying nothing. Most of all, it is ok to say

    “I do not know what to say. I am here for you and I care, I just don’t know what to say.”

    Just say something.

     

     

     

     

     

     

  • Point of Focus

    A photographer holds her camera and lifts it gingerly to take a picture. She alone decides what the picture and point of focus will be. What she chooses to be that point can dramatically alter the entire picture. One object will become sharp and clear while the rest of the contents within the frame will be slightly out of focus but still present. The photographer chooses the point to which she wants to draw the most attention. It is what she believes to be the most central, important part.

    Our minds take pictures of events from our lives. Perhaps it is something small like a trip to grocery store. It could be a relationship or event. It may even be an entire life. As my heart gazes at the snapshots of my life, I realize that I alone have the power to change the focus and reveal what is imperative and what is merely background. Unlike looking at someone else’s work of art, I am the one with the power to choose the focus. The composition is mine and mine alone.

    An easy example of this for me to share is my beloved Wesley because life with him is far from ordinary and requires that I choose my focus almost on a daily basis. It would be easy to look at me from the outside and wonder how I manage. Wesley is 16 but cognitively around two years old. He is incontinent and has a feeding tube. He needs pureed food because he does not have the oral motor skills to manipulate the food and chew. He is non-verbal and uses simple sign language to communicate. He often awakens at four in the morning and begins his day. He has melt downs and hurts himself. There are many reasons one might look at my life and pity me or even, perhaps, be grateful they are not me.

    But then there is the part of my picture where my point of focus is wholly directed. It does not remain on all the things he doesn’t do or the ways caring for him can be and is, at times, challenging. My focus is squarely on his smile and his soul deep laughter. It is on his tight hugs that remind you of the kind of hug you would receive if you were saying hello to someone you love deeply after a long absence. But his hug is because he is happy to see you. Or because it is Tuesday. Or because you look like you need one. Or because you exist. He gives them to family and to strangers. He gives them because his heart is so full of love he needs you to know that you are loved.

    My focus could have been on all the ways I felt robbed. Yes, I did spend time when he was an infant grieving. I lost a dream and it was a significant loss. What I couldn’t know then was that new dreams were created for me. Dreams so simple yet magnificent in their beauty. When other parents were charting their children’s progress (seemingly always ahead of schedule) I was praying he would be able to turn his head. When other children were off to pre-school to learn their letters I hoped he would walk. When other parents hung their honor roll student certificate on the refrigerator I celebrated that he unzipped his jacket. But I celebrated.

    I don’t look at my son as all the things he can’t do though that could have easily been my focus. My heart couldn’t tolerate that and I would be a different person if it could. I believe I would be angry and bitter. I would spend my days grieving rather than celebrating. I am joyful and grateful because I choose to be.

    I concentrate my focus on all the things that make him exceptional. I focus on what was gained and not what was lost. All these incremental choices led me to purpose that my son’s special needs would be a blessing and not a curse. My heart, my head, and my soul had to willfully decide that would be our truth, our focus.

    This is the same picture of my beautiful son hugging one of his favorite people on Earth. The first one has a point of focus on his face. His smile is infectious. His eyes are full of life and purity. Everything else is blurry. All that matters in this first picture is love. It breathes life and gratitude for all we have been given. It displays that he is exactly who he was created to be. Indeed, he too is fearfully and wonderfully made. His chromosome set may not be complete but his soul is entirely whole. The first point of focus shows how he is extraordinary in the most profoundly, beautiful, intrinsic way.

    The second picture has a point of focus on his wheelchair. One can not see his beautiful green eyes. His smile is barely noticeable. His disability is all that matters. This point of focus breathes despair, sadness, and the constant reminder that he is not normal in the most profoundly, simple way.

    I alone choose my focus. I determine the direction of my heart. I choose love. I choose joy. I choose life.

    Whether my picture is a story of triumph or tragedy is entirely up to me. Please let it be that I choose my point of focus wisely and choose triumph. Every. Single. Time.

  • 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.

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