Patience to Endure

Author: Jocelynn Helmbrecht

  • Just Say Something

    FB_IMG_1508942802913

    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.

     

     

     

     

     

     

  • 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

    locked-in-the-ether-frozen-flowers-kenji-shibata-thumb640

    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.

     

     

     

     

  • Shine Mightily

    Our culture does not discuss grief. In fact, we do just about everything we can to avoid it. We don’t know what to say to someone experiencing it and few of us know what to do once we find ourselves in its powerful grasp. Grief is one of the great equalizers. We all must endure it.

    I found out yesterday that a friend of mine passed away very suddenly. All grief is so very difficult but those unexpected loses do not give loved ones a chance to brace for impact. It blindsides you. It leaves you disoriented and reeling from the pain.

    I met my friend last fall when she came to the Grief Share program at my church. She was drowning in grief but accompanied by her even keeled, ever doting husband. She was raw and honest about what she had endured. I instantly liked her and simultaneously felt great compassion for her situation. Even in the midst of her grief she was a person who filled the room. When she laughed you couldn’t help but light up inside. When she cried you couldn’t help but cry with her. She just drew you in. Her death comes as a great shock and my heart breaks for her husband and sons.

    During the 13 weeks I had the privilege of getting to know her we shared very intimate details about our lives and our emotions. Our losses were different but the essence of our grief was the same. For a brief time we walked the same path on our journey. Her family now begins the walk all over after having already endured one other tragic, sudden, and unexpected loss. The grief they carry is too much to fathom.

    One night during a Grief Share meeting I was able to share this with her and the group. It seems appropriate to share it again today. At the time of sharing it I wanted to lend hope to a room filled with people who had lost so much. Truly, when we lose that which matters the most often hope is the only thing keeping us afloat. It is all we have left but it is all we need to begin.

    22289837_10155870327959656_2607341831479701028_o.jpg

    This morning when I left Charlottesville it was cloudy, windy, and raining but I was driving over the mountain to run some errands. I know that often when I get to the other side the weather is quite different. So, in spite of what it looked like where I was standing, I grabbed my sunglasses expectant to find something else entirely when I arrived. True to hope, as I reached the apex and started to descend the sun forced its way out and was shining mightily as if to show off its victory. If my life means anything, if I can impart anything to my children, if I can change my little corner may this picture be my deceleration.

    There will be times in life when it is dark and cold where you stand. The mountain looms in the distance and you can’t be sure of what is on the other side. For a while you might pace at the bottom. You will stop and glance up overwhelmed by the task at hand. You may even lay down and wait for the strength for one more step. But you will stand back up. You scale the mountain and eventually joyful anticipation settles in with you. The journey will be challenging but there are streams and deer. There are flowers and birds. The sun will rise and the sun will set, sometimes with a glorious displays of hues and sometimes hidden. There will always be something for which to be grateful, even if it is that you draw breath. On the other side of the mountain is more than you could have ever imagined. Colors are more vibrant. Love is deeper. Your faith assured. You, like the sun, will shine magnificently in your glory.

    Dearest Friend,

    When I shared this with you I thought your mountain was like mine once was, grief. Re-reading this today I know you are on the other side and it is more than you ever imagined. Your smile and laughter will always accompany me. Shine on, dear friend. Shine on magnificently in His Glory.

  • No father, not fatherless

    These two are my bookends. They are both bright, sweet, considerate, and wonderful sons. They are both enormously protective and loving toward me. Some would even say they are momma’s boys.

    They both also have no father but they are not fatherless.

    Emerson had a father long enough to know what his absence means. Nathan, however, knows no other family than one without a father. Yet here he is following his big brother through the downtown mall in our beloved little community with his little hands in his pockets trying his best to emulate his big brother.

    It is daunting trying to raise boys into mighty men with no father in the home.  As a woman I am tasked with teaching my boys how to be men. I realize that in my lifetime there has been a dramatic shift in parenting and traditional roles. Families come in all variations but my truth is that from my upbringing and in social sphere my family is different than everyone else’s. Very different.

    I can attempt to teach my boys to be men but, if I am being truly vulnerable, I admit there are times I am not sure what I am doing. My confidence is shaken when I consider the best coaches were once athletes. They know the intricacies of the game someone from the sidelines could not. Understanding what it is to be a man is not that same as being a man.

    When Emerson needed to begin wearing a tie to Chapel in seventh grade we had to look on YouTube to learn to tie one. When he had to begin shaving, Wesley’s in home support had to show him. There are things he experiences in life that I never have simply because we are different genders.

    Nathan didn’t realize that families were different than ours until he began school. Suddenly he noticed dads picking up their kids. He saw them playing together at birthday parties. He realized what had been missing and it hurts his little heart.

    However, these boys are not defined by the fact that they do not have fathers. My hope, my prayer, is that they are defined by a loving, albeit somewhat unique, family. I hope they are defined by the resiliency it took to pick up what little pieces could be found and build upon that. I hope they are defined by the love they receive and not the love that is missing. I hope they are defined by a mother who showed up and never gave up.

    We have improvised. We have adjusted. We have survived. We have learned to be all right with not looking like all the other families in our social circles. We have learned that not being like everyone else is exceptional and not something for which to be ashamed. We have made it our banner.

    We hear that God is father to the fatherless so often it almost seems cliche’ but He is. He protects, provides, and guides. His Presence in our lives is not a consolation prize, it is the main thing. However, sometimes a young man wants to have physical arms hug him and to toss a football. He needs to ask his dad questions and broach subjects that might be embarrassing to do so with his mother.  Over the years God has sent some incredible men to stand in the gap for my boys. They are teachers and loved ones. They are men who made them feel safe, loved, and worthy.  They can proclaim, like Job “I rescued the poor who cried for help, and the fatherless who had none to assist them.” (Job 29:12)

    An excerpt from an article Emerson wrote for school tells me my hopes and my prayers have already been answered abundantly. His words are brutally honest. They are vulnerable. They are brave. They are him.

    He wrote:

    The life we anticipated wasn’t the one we got and for a while we were at sea enduring the tempests of abandonment and loss. Its easy to look at us  – a widow, a divorced elderly woman, three fatherless sons – and say we don’t have a home as I’ve described it. But we do. We have the same scars, the same fears, and the same hopes because we’ve been battered by the same storms. And we all sail on the same tattered but triumphant ship.

     

     Home is imperfect people challenging each other’s imperfections because beyond the scars and gnarls and twists, they see something true and beautiful  in each other, something beyond what the world has done to them, something that can never be taken away. Home is the shelter for the human soul.

    That is what we are – tattered but triumphant.  It is not who we are. We are not fatherless. We are not abandoned. We are grateful. We are home.

  • 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.

    road

  • Patience to Endure

    Thank you for stopping by to read my first blog post. I am not quite sure I have much to offer as far as my thoughts and reflections are concerned.  My oldest son seems to think I do. When my husband died I promised God would extract every ounce of glory and that I would do my part to ensure the story did not end. It is my way of saying “thank you” to Him who is ever-present, ever faithful, ever-loving, and ever good.

    Everyone has a story. This is mine.

    Almost seven years ago I lost my husband to suicide. In the amount of time it takes to pull a trigger I went from a married woman with a beautiful family to a forty-year old widow. As my story unfolds on this blog, I will share some of the details only because they point back to the Goodness and Glory of God. The cost to find out first hand why those who mourn are blessed was high but one can not experience it and remain silent.

    It wasn’t the first time, however, my life was radically altered in a matter of seconds. My second son, Wesley, was born sixteen years ago. I thought and all indications were I was going to have a typical, healthy baby boy. However, the moment he was born everyone in the room knew that was not the case. I went from ecstatic to have another baby to still ecstatic yet horribly terrified and grief-stricken all at once. It was a unique moment in my life when ordinarily conflicting emotions all converged as they told me everything was not all right. My journey through Pediatric Intensive Care Units and begging God to let me keep my son are part of my story.  The celebrations over accomplishments other children naturally conquer are the bigger part of my story. Having a son who teaches me every single day what it means to be unconquerable is the best part of my story with my beloved Wesley.

    People often comment to me that I am strong. I am not. But my God is. Through restless nights and prayers for things others take for granted I became patient. When all seemed lost His Promises and presence gave me the patience to endure. Lately it occurs to me perhaps that is what it truly takes to endure. Hebrews 10:36 says  “Patient endurance is what you need now, so that you will continue to do God’s will. Then you will receive all that he has promised ” and I believe that is how I have gotten this far on my journey.  Strength fails. Optimism fades. Focus gets distracted. Some days the load is simply too heavy to bear let alone move. The patience to endure and His strength that was made perfect in my weakness have brought me through crying out helplessly after the doctors told me there was nothing more they could do for my son. It brought me through days all I could do was breathe and through days of holding my children as they wept uncontrollably. It brought me through abandonment, betrayal, and intractable anguish.  The patience to endure brought me to the joy that comes in the morning. It brought me to the promises He kept and they are far more than I could have ever asked or imagined.

    The hope of a future with new dreams to realize once felt impossible.  To quote my favorite Author “Humanly speaking, it is impossible. But with God everything is possible.”  (Matthew 19:26)

    I hope you come back.