Patience to Endure

Category: special needs

  • The Question

    The Question

    I took Baby to get his hair cut. I think he has grown taller since you left. The hairdresser couldn’t believe he was only thirteen years old. Since we were there, I checked to see if they could squeeze me in. It has been at least two years since I had a professional haircut. They had availability ten minutes after Nathan’s appointment began, so I waited.

    Something in me knew.

    My anxiety increased exponentially.

    I would, for the first time, be asked the inevitable question.

    My arms pressed into the chair as if holding on during the ascent of an unintended roller coaster ride. My hands involuntarily grasped the arm rest as it was about to reach the apex – leading to a steep decline, racing out of control.

    My body braced for the impact my soul was about to experience. The unpredictable cruelty Grief enjoys was about to send me into a sudden, wild drop because a stranger wanted to make small talk. Of course, the stylist had no way of knowing. I looked like any other mom taking her teenager and herself for a cut.

    I had only been in her chair for a couple of minutes before it came.

    Do you have other children?

    There it was.

    Nathan’s haircut was finished and he waited on the couch nearby. As soon as he heard her, his head whipped around to see me. He wanted to make sure I was alright. He knew me and the weight a stranger’s question carried – it pierced my soul and put your baby brother on high alert.

    I have two other boys, but one passed away.

    Gentle tears escaped, despite trying to contain them. Will I ever be able to say that sentence without crying?

    Sweet boy, I know you are gone and I am not sure why it hurts more when I have to say it. Will it always?

    I still have three boys, but they are not all here.

    How can such a simple question be so complicated? How can it cause such turmoil? I see Grief laughing in the corner.

    You always loved getting your hair cut. Your friend, Tammy, an instructor from the Virginia Institute of Autism, would come to the house and cut it. We learned she could cut hair after you discovered a buzzer in the bathroom. I didn’t know if I should be mortified you turned it on and cut your own hair – or be proud you turned it on and cut your own hair.

    That was life with you, sweet boy. It was never linear. There were no neat parallel lines. Everything was mixed together and inseparable. It was simple and complex. It was peaceful and chaotic. It was predictable and mysterious. It was wondrous and, at times, terrifying.

    We lived the epitome of “both/and.”

    You would think I would be able to handle conflicting simultaneous truths Grief presents better because that was life with you. But here in the after they are heavier and make less sense, as does everything. The untangling takes more energy than I have. Some days just living seems to take as much energy than I can muster.

    Sweet boy, “they” say Grief never leaves – I will learn to carry her. I suppose that means first I need to catch her.

    Seven weeks in the after, I am nowhere near being able to predict when and where she will show up – sometimes with callous ferocity leaving me on the floor in a fetal position. Other times she gently whispers, “I am still here.” 

    She is - 
    everywhere...
    unpredictable...
    vicious...
    gentle...
    stealthy...
    a slow burn...
    never ceasing...

    How will I ever catch her?

    Today, she waited quietly to ambush me – in a chair getting my hair cut.

  • Hunt for the Good

    Hunt for the Good

    Sweet boy, we are approaching six weeks since the loss of you. At first I counted time by days and now in weeks. I don’t know why I mark the time from the day you died – only that I do. Just as we tell a baby’s age at first by days, then weeks, then months, then years so goes the marking of death.

    I have storages of unpacking to do including medical trauma interlocked with grief. Once the unpacking begins, I suspect other traumatic losses will rear their unhealing, so I enlisted help. I started therapy. The therapist said many studies have been performed regarding grief with soldiers because they are a unique population and have endured extensive losses. One of the tactics used that seemed to help was

    “Hunt for the good.”

    At first I started thinking about hunting in terms of the sport. It requires active seeking, difficult landscape, going undetected, and waiting. This didn’t sit quite right with me especially because the object being hunted does not want to be found.

    The good which I seek wants to be known.

    Easter is in a few days, sweet boy. Thankfully, your brother, though 13, still wants to do an Easter egg hunt with your cousin. I will stuff some eggs with candy and others with money. As you know, traditionally, the golden egg has a twenty dollar bill and is extra hidden but not impossible to find. The hands that hide the eggs are hopeful they will all be found – and gently assists to be sure they are.

    I will hunt for the good, the hidden treasures, as a child with an empty basket on the morning of celebration dedicated to divine hope and promise.

    The eggs will seem like ordinary things. A warm cup of coffee… the morning sun.. your brother’s smile.. Grandma’s laugh… new leaves on my plants.. Steve’s hugs… Emerson’s phone calls… a full moon… a hot shower…

    The very skill I need to survive your death was taught to me by you through your life.

    When you were six months old you lifted your own head for two seconds. I cheered and cried. It didn’t matter it was months later than typical. What mattered was that you did.

    You were diagnosed “failure to thrive” and had a feeding tube placed when you were one. Your first birthday was celebrated in the hospital. The doctors thought we would have to always tube feed you and did for a couple years. Then, through a lot of work with speech therapy, you began to eat pureed food. Once again, I cheered and cried. You learned to eat.

    A lifetime of witnessing you, sweet boy, work incredibly hard to accomplish what others did naturally formed me into a mom able to find the good – even in delayed or absent milestones, missing pieces of chromosomes, and hospital rooms. I will find the good in living each day.

    I am still here. It cannot be for nothing.

    Living and loving you led me to take nothing for granted. Not only because of your accomplishments that were never supposed to happen to be but because that is how you lived. You laughed at the littlest things – an inflection or word. Sometimes ordinary words would make you laugh hysterically. Like feet. And focus. And not sorry. It was beautiful.

    Hunt for the good. Desperately find it. Crack it open. And with a grateful – even if broken heart – cherish the treasures.

    Ever so slowly, my basket will fill.

    The Hands that hid the eggs will help me find them. Even after the basket is full, I will continue to hunt for the good. But, sweet boy, that is how we lived wasn’t it? Not just in loss. We did it in life. The little things didn’t just matter, they were everything. That skill is now my saving grace. The very thing you taught me through your life will save me from your death.

    I will give you treasures hidden in the darkness – secret riches. I will do this so you may know that I am the Lord. (Isaiah 45:3)

  • Assured

    Assured

    Assured: something guaranteed, certain, confidently expected.

    When you were born, sweet boy, we had no idea you would have special needs. I went to the operating room for a repeat cesarean section fully expecting a normal, healthy baby boy.

    Your cry was weak. The room was silent. Something was not right.

    No one came to visit us in the hospital. When your brother Emerson was born two and a half years before our room was filled with flowers and balloons. Yet with you, no one knew what to say so they said nothing.

    The fear – of not knowing if I was going to be able to keep you and this new world we were unexpectedly thrust into – could not be made better by typical platitudes, Christianese or even, in some sense, Scripture. My faith has matured over the last twenty-four years, yet the platitudes and Christianese still offer little to no comfort. The solace I find is in the assurances, the promises yet to come. Until they are birthed, I sit much of the day in trust and hope. I feel gelatinous in the stasis but faith surrounds me.

    Now faith is confidence in what we hope for and assurance about what we do not see. (Hebrews 11:1)

    My confidence is small.

    Most days, my hope is simply to hope.

    My assurance is great because I know Him.

    I am not alone. He is here.

    My tears are collected. My pain is seen and honored.

    His mercy is new. I woke up. I breathe. Your brothers are well. I am loved. I am forgiven and redeemed.

    My strength will be renewed. Even micro strengthening is significant. If I can lift my soul just a little longer today it is a victory.

    This pain will not be wasted. He works ALL things for good. Yes, sweet boy, even my grief. I don’t know how, but am assured He will. It may not be proportional, but it will not go unclaimed.

    I will be lifted out of the pit. I wonder if it comes so incrementally, I won’t realize it until I am out. Perhaps freedom will be found on an unexpected day, without warning or announcement. I wait with joyful anticipation.

    His Grace is sufficient. I can’t do this, sweet boy. I am living every parent’s worst nightmare. His power is made perfect in weakness. I am protected.

    I will be steadied as I walk along. When I am able, I will learn to walk again in this world without you. As a child just learning, I will lose balance and be recovered.

    I was shaped by your birth. It was the first time I realized two things can both be true and opposed. I was ecstatic and scared. I was happy and sad. I was thrilled and disappointed.

    I was shaped by your life. You taught me resilience, persistence, boundless laughter, strength, advocacy, purity, and how to love others unconditionally. I became the best version of me by loving you.

    The beginning of your life, sweet boy, and now in the after have been two of the most uncertain, frightening times in my life. Learning to be the mom of a child with special needs was like moving to a foreign land with no knowledge of the language or customs. I didn’t even know we were headed there until we arrived. But I learned. Not only that, I made a home for us there. One filled with vigilance, fun, and so much love. It is the accomplishment of my life.

    And on an ordinary Saturday morning in February it was destroyed.

    There is no avoiding it, I will be shaped by your death. I will be shaped by the catastrophic loss of you. But also how I heal and what I choose to let take hold of my heart. I promise you, sweet boy, it will not be bitterness. It will not be fear. I will be shaped by how I move when forward motion is possible. You will be with me, sweet boy. Moving forward is not the same as on.

    The shaping is yet to come. It is inevitable. It is consequential. It is uninvited but here all the same. Until the assurances reach full gestation, my soul – gelatinous, suspended – is held together by the promises they hold.

  • Anointed in Grief

    Anointed in Grief

    One of your favorite people stopped by today, sweet boy. She is one of mine as well. Walking into the house with a smile, determination, and a bag hanging off her shoulder she said,

    “I have some things. I want to pray over you. Is that ok?”

    We sat on the couch as she pulled frankincense and myrrh anointing prayer oil out of her bag.

    “Can I have your hands?” she asked offering hers as well.

    Using the anointing prayer oil she poured them on my:

    HANDS

    “Father Abba, these are a mother’s hands. These hands have cared for Wesley. They fed him, held his hands, carried him, picked him up when he fell. They have cradled him to sleep and wiped his brow. These are a mother’s loving hands. They have catheterized him, washed him, and cared for his wounds. Though they feel empty, we know you can fill them. I pray you would heal them and give them new purpose when it is time.”

    FEET

    “These are a mother’s feet. They have chased Wesley around the house. They have pushed his wheelchair through stores and malls and Time Square so he would enjoy life. They have walked around the home in the care of him. They have paced hospital rooms. These feet have walked in your purpose and have followed you. I pray you would give them rest. I pray you would rejuvenate them. May they follow your new path and new purpose in Your time.”

    MIND

    “This is a mother’s mind. She has worried about her children. She has thought about their well being and solved their problems. She planned Wesley’s days. She advocated and spoke to doctors. This mother’s mind made hard decisions. She learned so much to become licensed to care for Wesley. I pray you would help her to use that knowledge to help others when it is time. I pray lord you would give her peace and healing. Please be close when she is anxious. I pray, in time, you would give her new thoughts of hope and tomorrows. May the memories here become more joyful than painful.

    HEART

    “This is a mother’s heart. In here her children have lived and forever will. Wesley filled her heart and though he is ok her heart is not. There is an emptiness, God, that only You can fill. This mother’s heart is broken but You hold the pieces. You hold her. She has loved them unconditionally and abundantly. Her heart is hurting now and I pray you would sit with her. I pray you would comfort her and fill her heart with Your love. Give her peace.”

    I sobbed the entire time, sweet boy. Crying is my normal these days, but these tears felt different. They were cleansing. They were heavy with grief yet light with praise and had an ever so slight tinge of hope and peace.

    My hands are empty. My feet long to be tired. My heart is destroyed. My mind is foggy. For now. We have been talking in our home, sweet boy, about adding “for now” to the end of our sentences. We desperately need hope it is only this twistedly wrenching for now.

    Granular relief during global grief.

    Our friend gave us a beautiful gesture and powerful prayer of deep love. For over twenty years she has celebrated our family’s victories and reached into the pit especially when your dad died and when Grandpa died. She came to the hospital to pray with us at midnight when you first began crashing. Sweet boy, whenever you heard her voice even from the other room you would crawl out to see her. You loved her because you recognized God’s love incarnate. Like recognizes like.

    A friend loves at all times, and a brother is born for a time of adversity

    Proverbs 17:17. There is that number again.

  • 5 Weeks

    5 Weeks

    Five weeks ago today, sweet boy, I left the hospital without you. When Steve and I arrived home Grandma was standing in the kitchen. She saw me slowly walk up the steps hugging your pillow. I didn’t need to say a word. She knew I would never leave you in the hospital alone.

    Your brothers were awakened by Grandma wailing. I went to tell them but they already knew. It was the worst day of all our lives. I will unpack it and the medical trauma another day.

    For the last five weeks, I have spent most of my time on the couch. I have been accosted by grief before when your dad died and my dad died. There is no comparison, sweet boy, to the depth of grief over you.

    At first, it came in relentless high, powerful, uncontrollable attacks constantly pummeling me. I could not catch a breath between blows, nor silence the screaming anguish from my soul. Just in the last couple of days I have been able to control it ever so slightly. Sometimes I try to wait until no one is around and release the tears. Our family is so worried and feels so helpless. I see the loving desperation their eyes that perhaps today I will feel a little better. Sometimes, though, the tears come anyway. I find grief is intrusive.

    Five weeks. Five years. Five lifetimes.

    Time is strange when grieving.

    One thing I have learned is grief isn’t a journey. There is no destination, no end point where I hang a flag and exclaim, “I made it!” I have heard it explained as learning a new language. That doesn’t fit for me either because not everyone speaks it nor understands.

    It is displacement. It is a house you’ve lived in for a very long time. There is happiness and it is beautifully harmonious and you love it there. Everything is in place and so much love abounds. On a seemingly beautiful day a hurricane hits. The home is destroyed and all you have left are pieces as you sift through the rubble. Some things have been destroyed and others are missing entirely for good. You have no tools to rebuild. Even after the hurricane things continue to fall. Family and friends try to help but you are surrounded by what is left and the shards prevent anyone from truly getting to where you are.

    So you cry uncontrollably.

    Your heart bleeds and your hands are useless.

    Nothing makes sense.

    All seems lost.

    Grief is sitting there in the after. It is seeing what once was and knowing part of the foundation is no more. It is trying to fathom rebuilding a house without the essence of it. It is realizing you don’t have the strength to exist let alone rebuild. Grief is crying out to an all powerful God who doesn’t wave a magic wand and make it better but He will sit there with you and you are grateful because He is the only One who can.

    Five weeks after your death, sweet boy, I am prone in the rubble. The elements are harsh and I am exposed. There is a strange apathy that accompanies grief and it doesn’t seem to bother me. It is early yet. Nothing can hurt more than losing you.

    There is a part for me that will come before the rebuilding. Perhaps that is where I will gather tools, supplies, and strength. I am not sure – but choose to wait with joyful expectation. God will not leave me here in the aftermath. He has promised to lift me out of the pit of despair. He will set my feet upon a rock and steady me. He just hasn’t yet. I wait for Him.

    When the time comes, we will rebuild the house with no blueprint. It will seem impossible and it will feel like a violating betrayal. Tear by tear and brick by brick something else entirely will exist. Somehow, we will make a new home but there will always be space where you would have been. We will always have empty rooms in our new home and forever adjust to the place that belonged to you. They tell me we will learn to live there.

    Five weeks in the after it feels the eventual rebuilding will come with a reluctant acceptance. Acceptance must come. I have to learn to live in the place grief has assigned me. But she will not rule me. There will be an eventual moving forward without leaving you behind, sweet boy. I carry you with me always and there will be a place for you no matter what house I build.

    Grief can’t take that for me.

  • Fragility

    Fragility

    Twenty-four years seems too short yet a miracle.

    You were medically fragile but the strongest person I knew.

    Your death was shocking but anticipated.

    You are my son but you are not here.

    I have been looking for answers that may never come. My heart knows healing and alleviation will not be found in the explained. Yet I look.

    I did a deep dive into your deletion yesterday. When the geneticist told me twelve years ago where it was and the genes involved science didn’t know much yet about the specifics of what it meant. “Some proteins” was all they said. Despite advances in DNA mapping, I never did research until the after. I didn’t want to be scared. I didn’t want to mute your life because of that fear and I knew if I knew then I would.

    The simple breakdown is this: you were missing pieces of chromosome 1 which included about 1.8 million base pairs. It is a moderate-sized deletion though classified as micro. Important information was missing imperative for brain and development, body stability and system regulation, immune and infection response, connective tissue and structural support. Within that deletion were 44 known, important genes that have been identified and studied. Ten of those are linked to medical conditions. I dove into the specific genes like ASH1L, SYT11, LAMTOR2 and RNA and how proteins are involved. The information uncovered to me it was a miracle we made it as far as we did, sweet boy.

    I wonder if our DNA is like a symphony. When a deletion occurs, the symphony has missing instruments and incomplete sheet music. Music is still created but other instruments have to play harder and longer to fill in what is missing. Sometimes it doesn’t sound as melodic. Other times it can be quite a cacophony and struggle. Musicians have to improvise and can clash. The stress causes strings to break from the violin playing longer than intended. The cellist fingers begin to hurt. Everyone is playing furiously to compensate for the missing instruments all the while not having all the notes or how long to hold them. It is exhausting and discombobulating to the musicians but it is still music. The process is more exhausting than if they had the complete symphony and all the sheet music. After having to perform that way daily for years, twenty-four of them, and under stress the missing pieces become critical. Daily compensation leads to a tipping point unpredictable and unpreventable until one day the music stops.

    But while the music played it was beautiful nonetheless. From this audience of one I never heard the missing notes or instruments. I just heard your laugh and screams of excitement. I will forever miss the sounds.

    Your body was working harder every single day for twenty-four years than I realized just to make it through the day. Without those important pieces I can’t imagine how much it took just to stay steady. Other genes and systems could compensate for a while. You, my sweet boy, were the king of fortitude and that carried you. That carried us.

    I also saw in the research how over time those systems of compensation become compromised. Hypotonia often becomes worse. GERD and aspiration risk increases. Reserve becomes reduced. Chronic compensation leads to systems becoming fatigued and forces a body to respond more slowly and become overwhelmed more quickly. Everything that can go wrong becomes more likely. And it did.

    Your biology was vulnerable and it was also resilient. Both are true. You died young but lived long. Both are also true. You were fragile but strong. I have to find space to accept those seeming paradoxes.

    Last night I fell asleep wondering if I was in denial about your medical complexity. In reality, my heart and my brain didn’t hold you as medically fragile or high risk or complex. They held and will always hold you as my son who loved pudding and laughing and hugs and music. I normalized what we lived with and we adapted to risks. Others would often say, “I don’t know how you do it,” and that would perplex me. I just did what needed to be done to give you the best life possible. I hope I did, sweet boy.

    High risk was my normal. Fragile stability became baseline. Not living that way would have taken something significant from both of us and replaced our joy with fear. For that I am grateful.

    We lived inside a reality that unfolded slowly, silently, and insidiously until it didn’t. You were labeled medically complex and I did my best to protect your life from being reduced to that. We danced. We shopped. We went to concerts. We hugged strangers. We ate pudding. We swam. We loved and lived without intense fear.

    After you got sick three and a half years ago they told me you wouldn’t make it. Yet you did. Each night after I would kiss you goodnight. I would tell you how you are my whole world and thanked you for fighting so hard to stay with me. I didn’t know, sweet boy, how hard that fight was every day.

    This time when you got sick and we knew the end was near I asked everyone to leave the room. I needed a few moments alone with you. I told you how much I loved you and how proud I was to be your mom. I thanked you for fighting so hard but if it was time to go I would be all right. You didn’t need to fight anymore. I didn’t want you to feel like you somehow failed. I told you how your Dad and Grandpa would be waiting and you would get to meet Jesus. I hoped He would tell you He was proud of me. I already knew, with all my heart, He was so proud of you.

    Until your last heart beat I savored every moment with you. Every single time, no matter what I was doing, when you asked for a hug I gave you one. You were such a stinker and would ask for one sitting in your shower chair, soaking wet. I would hug you and you would laugh so hard. I will have that picture in my heart until my last beat.

    I sit with the paradoxes that create a push and pull in my soul. I acknowledge both can exist and both are true. I despair it was only twenty-four years. You are irreplaceable. I am grateful it was twenty-four years. You were a miracle. The instruments that will connect those two diametrically opposing movements of my muted symphony, my sweet boy, is found as I grieve your loss and celebrate your life. Those notes are the quality of those twenty-four years. The time we did get we created by giving one another joy, loving lavishly, savoring every shaky hug, laughing at the littlest things, eating wonderful food, and caring for one another in a way even death cannot unentangle. It will be with me always, my sweet boy. As will you.

    Missing chromosomes and base pairs, incomplete information – none of that matters as I sob on the couch on this dreary day. You were created exactly as He intended. You were His masterpiece. You were the most beautiful symphony I will ever hear. And being your mom is my highest honor.

    I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well. Psalm 139:14

  • Box 17

    Box 17

    Seventeen has always been a significant number in the life of our family. We have had many births, deaths, and significant events involving the number. Your Grandpa went to Vietnam on a 17 and returned on a 17. My Grandpa died on a 17. Your dad was born on a 17 as was I and your sister. Emerson was supposed to be born on a 17 but he came early. When your Grandpa entered the hospital for the last time his room number was 4317. We took you to the hospital for the last time on a 17.

    I am not necessarily superstitious but that number follows me. It is not always good or bad, just significant.

    There are no words to express the heaviness of my heart when the funeral home handed me your death certificate. No parent should ever be given one. But there I was with Steve ever faithfully standing beside me. I put it in a folder and we came home.

    Because of the licensing with the state I had to send them a copy. As I pulled it off the scanner box 17 jumped out at me.

    I am exceedingly grateful for the person responsible for filling in box 17 because it is absolutely perfect.

    Usual or last occupation: Loving People

    You took your job seriously and were exemplary at it. Your salary is measured in a currency more valuable than anything on earth. It is eternal and immeasurable.

    When the world gets quiet the tears get loud. As I lay in bed last they came faithfully. Steve held me as I spoke about the intensity of your love for me and mine for you. How when we were apart each of us couldn’t wait to get back to the other. We were obsessed with each other. It kills me that I have to wait now to get back to you but my hope, my faith assures me I will.

    You were the absolute best at loving people. You did it intensely, easily, unconditionally. You loved with a reckless abandon and purity with no selfish motivation. You were my daily example of how God intends us to love one another and you, my sweet boy, did it with no strain. It is was just who you were.

    When a loved one dies there are platitudes used to make the grieving feel better. Some feel like a Band-Aid on a deep jugular gash but they do hold truth.

    The truth is your love didn’t die because you did. And you do live in the hearts of those blessed enough to have been in the radiance of it. They are different people and love more vibrantly because of what you deposited into them. The full measure we will never know as it ripples on and on and on.

    I am exerting what little energy I have to grieve in a healing way. When I become panicked because you died I take a deep breath and remind myself you lived. When my mind replays the hospital trauma I introduce these images into my mind. I am processing the grief but I am also determined to not get stuck here.

    Box seventeen is helping me do just that.

  • The Pile

    The Pile

    I am rendered incapacitated between yearning for the past and being afraid of the future. The world feels unsafe today. It is gut wrenching trying to figure out where I am and who I am without you.

    When you died, sweet boy, until this morning I thought the person I was because of you died too. I loved who I was because of you. I was fierce. I was silly. I was happy and devoted. I was strong. I was your voice and your advocate. I was kind. I could love sacrificially with ease and it was an honor.

    I am trying desperately to envision who I am or what I will do now that you are gone. As I watched the morning sun bid welcome I realized I already knew the answer to one of those questions. The person I was because of you didn’t die. She is here. The answer to the second question, what I will do, will be found. First I just stop need to crying.

    The untangling of intertwinement begins. My highest honor has and always will be being your mom and caretaker. I am still, always your mom. My role as caretaker, one of which I was extraordinarily proud, did die with you. I grieve you above all and the other smaller but significant loses that accompany including my role for twenty-four years, twenty-four hours a day, seven days a week caring for you. I don’t know how my days and years will be filled without you on so many levels.

    I sit in the space of realization and gratitude that who I am and was didn’t die because you did. All the lessons you taught me and the person who was shaped by loving you is here. It would dishonor you to believe the gifts you gave me went to eternity with you. God does leave some things behind. I will find them.

    I told you the other day Grandma is organizing my closet so we can put away your things I am not able to sort through just yet. All my clothes are in a huge pile in the middle of the room. She is organizing pants by length and sweatshirts and all the clothes I have accumulated over the years. It helps her to have a project and her tendency toward OCD is satisfied.

    In the gigantic pile are ripped, stained t-shirts and church clothes. There are items from the bin store where all the clothes were $2 mixed in with gala clothes bought in boutiques in Chicago. Unusable clothes are intertwined with those of value and sentiment. The process of sorting a mountain of items is tedious and slow moving but necessary. Some will be donated while others cut up to use as rags. Others will hang in the closet until fancier days.

    My soul sits in a huge pile in the foyer, the empty spot where you would spend hours each day. All the pieces of me lie dormant underneath an enormous weighted blanket of grief. Several times a day I cry out to God in His mercy to lighten the weight just enough so I can breathe. Some days He does. Some days He does not or perhaps the lifting is so subtle I cannot feel it. I don’t know why He lets this pain crush me but I never knew why He let me have someone as special as you to call my son. I trust Him. I trust the process. I trust I will have the patience to endure.

    The morning sun slowly and deliberately lights up the room faithfully just as Grandma diminishes the pile of clothes. The progression is reliable. Sweet boy, the weighted blanket of grief will abate. As my strength returns from the crushing I will sort through my soul pile. I will find her. I will find the woman who only saw the beautiful. I will find my silliness. I will find gratitude with no effort. I will find the joy I had which you taught me to be exuberant over the little things. I will rid the rags and pieces that can no longer fit.

    Perhaps I will find something I forgot was ever there. With joyful expectation I dare even hope something new will be discovered that was growing in the darkness under the weight all along. And just maybe that something will open up an unlimited future. It is an excruciating horror to think of a future without you but I didn’t get that choice.

    Right now, at this moment in my life, sweet boy, daring to hope in this despair is the bravest thing I can do.

  • Hugs

    I picked up Nathan by myself yesterday. It was the first time I have since you left. Every day around ten a.m. you would start signing “Pick up baby” and you would get so mad when I told you it would be several hours more. Finally, at 2:50 pm Monday through Friday you would squeal with delight to get in the car to finally get him. We would listen to music on the way. Every time I had to go over those aggressive speed bumps at Nathan’s school I would say, “Ready bump?” and you would laugh as your chair bounced.

    Yesterday it was quieter. I listened to Christian music and prayed. I miss you every moment of every day and sometimes, even more. I still said, “ready bump” and perhaps I will until he graduates.

    I am trying to sit in my office a little more. Each time, though, I look at the couch and cry. I see where you sat with your legs crossed asking for coffee. It still doesn’t feel real sometimes and other times all too real. It is a cruelty I cannot escape.

    I thought it would be good to get a checkup and wanted to see if some medication might help me, so I had a doctor’s appointment today. We have known Dr. Campbell for over twenty years. He already knew you passed away. He was great friends with your dad and helped me then as he is helping me now.

    His nurse entered the room. “You’re here for depression?” she asked.

    “I am not sure. My son died,” I responded.

    Each time I say those three words the knife twists a little deeper. As if saying it makes it truer but the truth is absolute. I am not delusional. Still, saying those three words slays my soul a little more each and every time.

    “Can I hug you?” she asked.

    She gave me a hug and told me she has an eight-year-old son. I suspect he will be hugged a little tighter when she gets off work.

    Bruce came in shortly after and sat in the chair with sympathetic eyes.

    “Burying your child defies the natural order of things. You won’t get over this. But you will learn to live with it,” he said.

    Tears formed in my eyes. I knew that truth. There was no way around it. A loss as significant as you will necessarily change who I was and who I was going to be. It changes everything.

    “You buried a husband. And it was traumatic and shocking. I know this is different,” he said.

    “This is so much worse,” I cried.

    Nodding in agreement he patted my back. “You have to remember who you are,” he said gently, “You are a survivor.”

    I drove home sobbing once again. I was alone in the car and let out the most guttural desperate scream. It felt so good as if twenty-five days of nightmare dissonance released all at once.

    Grandma started clearing out your room. We are saving all your t-shirts hoping to have a quilt made. Many of your toys will be saved for baby Chloe. You were always so good at sharing with her except your wheelchair. That was off limits. We will tell her stories of “Uncle Wesley.” Your Santa still hangs on the door. She likes us to push the button to hear him sing. I don’t foresee Santa coming down despite the season.

    Boxing up your things is the hardest, most painful task we have ever had to do other than holding you at your last heartbeat. Your medical supplies remain in the bathroom. My heart just hasn’t been able to clear them though I know they will be donated through All Blessings Flow once I bring them. God works all things, even Tegaderm and catheters, for good.

    I still wake up every morning with my first thought being I don’t want to live in a world where you are not. But the last couple of days just after that thought I have asked God to show me the full measure of His mercy and His Grace. I have asked to know His Presence in powerful ways. I have asked God to fill my heart with warm memories and smiles of you. I know some day the memories will be accompanied with a few tears and more smiles. It will not be the deluge it is now. May it come soon, sweet boy. May it come oh so soon.

    They say grief is just love with no place to go. I disagree. It has some place to go. It does not dissipate. It still exists even though you, my sweet boy, are on the other side of eternity. My faith insists I can still actively love you. It victoriously claims death does not diminish love. The very foundation of my faith asserts love can reach eternity and back home again. So, sweet boy, I will love you as fiercely, boldly, and unconditionally as if you are sitting there in the foyer, furiously searching your iPad or asking for a hug or laughing at a silly noise. The love still has somewhere to go and I will continue to release it. Perhaps when the grief subsides enough to where I can function easier, the releasing will lead me to help others the way strong women I know have done before me.

    For now, sweet boy, I miss your hugs. My entire body physically craves one. I close my eyes and can feel them still. You would hug so tightly it made you shake – a whole soul hug.

    Spring is just around the corner. You would sit on the porch swing with your feet going back and forth. You would vigorously point to the empty spot next to you and ask me to sit and hold your iPad. After only a few minutes we would hug and bask in each other’s presence.

    I imagine where you are it is always spring. The weather is always perfect, flowers are always blooming, the green is young and the hugs endless. The only other one who could love you more than I, sweet boy, is our God. And I am quite sure He gives the best hugs.

    I am not sure I would label myself a survivor. I have survived terrible trauma. I have survived burying a husband and now a child. If I am a survivor, it is only because I have been strengthened. I have been sustained. And I have been saved.

    I can do all things through Christ who strengthens me. Philippians 4:13

  • And There She Is

    One month ago today, sweet boy, we took you to the Emergency Department. They thought you were stable. They thought you would go to a general medicine floor. But that was when the first domino was only teetering and had not yet fallen.

    For the last month I have cried out to God day and night. I have begged for mercy, for reprieve, for peace, for strength, for comfort, for the ability to just make it through the next minute.

    I have raised my hands in worship from the couch with tears streaming down my face. There were times it hurt to do so but in spite of where I am right now, He is worthy. His worthiness does not alter based on where I am. What alters is the intensity of my praise from the depths. It must be more.

    I love the Lord because He hears my voice and my prayer for mercy. Because He bends down to listen, I will pray, as long as I have breath (Psalm 116:1-2 NLT).

    The pain of losing you has been louder than anything else I can hear. At times, even louder than God. It isn’t He has not been speaking, I just couldn’t hear anything above the grief. So, He bent down to listen and to show me this:

    Do you remember a few months ago when my favorite plant fell? She branched off into two huge stems with majestic leaves, a centerpiece among my collection. One of her gigantic stems broke, roots and all. Part of the stem and the reddish part remained, the place where a leaf was just beginning to come. Not knowing if it would work, I put her in some dirt and stuck her in a corner. I watered her every couple of months uncertain of the possibility of even a fighting chance.

    Finally, this morning as I was turning on the lights I saw her. Hope in the color of green. She picked up where she left off before the breaking. She wasn’t dead. She was not quite dormant either. Under the surface where I could not see she was growing roots. For months I kept watering her with only hope that perhaps something was growing. From above the surface there was no evidence I was contributing anything to what appeared to be a dead plant. Underneath, just below what the eye could see, she was hard at work.

    Once the roots were re-established, she was able to concentrate on the outer new growth. We can see and celebrate the emerging leaf but it does not negate all the work put into growing what we did not witness in the dark and soiled place. She still needed the faithful watering despite uncertainty if she could even grow again.

    She will have to get used to being in the pot alone. For a while she gloriously and beautifully shared space. She shared the same sun rays and same root system. Only together could they make the beautiful plant that adorned the front window. That plant is no more from the breaking, but another space will form. New, unexpected, and even beautiful leaves will fill in. I know it won’t be the same beautiful in the once familiar form. What was unique has been severed but not demolished. Given time and new growth I will grow accustomed to it and even be grateful all was not lost after all.

    Sweet boy, I have broken most assuredly and completely. Though I am surrounded by family and friends and so much love, I am apart from where I began and alone. God has put me in a corner in the soil. He has not forgotten. He does not hope because He IS hope. He waters me faithfully. I can’t tell today but roots are regrowing.

    See, I am doing a new thing! Now it springs up: do you not perceive it? I am making a way in the wilderness and streams in the wasteland. Isaiah 43:19

    I barely perceive it. But I trust the promise. I trust the hope in the color of green. I trust the One who bent down to show me. It is coming. May it be soon. May I have the patience to endure until, finally, gracefully I see the full unencumbered way.