Patience to Endure

Tag: loss

  • Unappointed

    Unappointed

    Dear lady in the row in front of us at church today,

    Thank you for taking your baby out of his car seat exactly when you did.

    During worship, I watched you and your husband diligently checking under the blanket covered car seat.

    At an unappointed moment, you reached in and took him out of his cocoon. Holding him for a few minutes you swayed back and forth before wrapping him against you in a sling. He was safe. He was content. He was close to your heart. It was the most ordinary, beautiful thing a mother does.

    We had just begun singing, “Even while I’m walking through the valley of death and dying,” when my tears percolated. At times, as any bereaved mother can attest, once the tears are unleashed, they become impossible to control until they are fully exhausted. Then, somehow, more are found.

    See, I lost my precious son almost five months ago. I am in the valley of death and dying, though it doesn’t feel like walking. It is more a military crawl through mud for a few inches then curling into a ball, exhausted and overwhelmed.  Progress in grief isn’t linear. It is not always forward. It is up, down, backward, and inside out. It is chaos.

    For the griever, the world is painful and unpredictable. A song, a scent, a favorite food, almost anything can be a trigger and cause an avalanche until, in unexpected places like church, I am holding on for dear life.

    But then you took your baby out and held him to you.

    His eyes grew bigger as he looked around and heard the singing. He was no longer in the dark, even if he was only sleeping. He was now awake and engaged in a welcoming world.

    The singing continued and the next line in the song became an anchor.

    “I will not fear cause you are with me. You’re always with me.”

    At some unappointed moment, God will carefully take me out of this present darkness. He will restore me.  I will re-engage with the world.

    Until then He holds me close, even here.

  • The Morning Sun

    The Morning Sun

    When my beloved son passed away four months ago, I knew I would not survive if I failed to find gratitude. My drowning soul knew it was my lifeline.

    The small things were suddenly no longer overlooked. Yet the enormity of loss left me wondering how these tiny, fleeting moments of gratitude might soothe a heart hollowed by grief.

    But I tried. Each morning, I took my coffee, sat on the couch, and waited expectantly for the sun to enter our living room.

    When a caregiver loses their loved one it disrupts life on every level. Our daily routines, our identity, and the enormity of grief are all heaped upon our already exhausted shoulders.

    Finding one good thing, one ritual, one point of gratitude may not seem like much when there is nothing but a seemingly infinite emptiness.

    It takes effort, but it matters. Four months later the sun entering the living room and spilling across my plants has accumulated enough tiny moments of joy that I can breathe, even if just a little, easier.

    What began as an attempt to find the smallest speck of joy will never fill the space my child occupied. But it has helped me to create a new routine and to discover a beauty I had taken for granted. The shadows coexist with the sunlight. They move in tandem, ensuring the plant eventually receives the nourishment it needs without burning the leaves.

    For both the sun and the darkness are temporary. Yet the plant remains.

    Some days light will pour generously through the window, and on others it is hidden behind the clouds. Whether or not it illuminates the room, the sun rises faithfully every morning. Life goes on. As cruel and as benevolent as the truth can seem, somehow, so must I.

    In time, even mourning learns the shape of morning.

  • When The Road is No More

    When The Road is No More

    WordPress reminded me of a blog I posted eight years ago. I wrote the piece below not knowing that I would discover what happens when the second road ends.

    For twenty-four years we drove on our road and were grateful. We knew the alternative would have required the impossible of us and now it has. If life with Wesley was a bumpier road, life without him is a free fall nothingness. It is the surreal, chaotic road of deep drops, roads randomly ending, bridges blown apart, and no way to navigate. It is the stuff of nightmares.

    I am grateful that I always knew the honor of the road we traveled and savored every single mile. It was never a burden or inconvenient. There was inexplicable beauty even though the shadow of a catastrophic event always lingered. It taught us to savor the moment even while living with the reality each one could be the last. And eventually one was.

    I will always remember it with love because we were there together. The road has ended yet the love remains. Even death dare to take something so sacred.

    Two Roads
  • Scripture for the Hard Times

    Scripture for the Hard Times

    There is a level of deep grief and when we are in it, Scripture and platitudes do not help. Nothing seems to help. Four months after losing my precious son I am just beginning to emerge long enough to remember and hold onto some of God’s promises.

    May they encourage you.

  • Out of the Grave

    Out of the Grave

    Sweet boy, today is our first holiday without you. It is one of those days I fiercely fight the tears because if they begin, they will not end. And that isn’t fair to your baby brother Nathan. Holidays can be tinged with grief and not tainted.

    We went to church this morning. I did cry during worship. It was such a strange mixture of tears.

    Sadness.

    Rejoicing.

    Awe.

    Sorrow.

    Hope.

    Gratitude.

    Celebration.

    All of those coalesced into tears I struggled to control. Crying during worship isn’t unusual for me, but today was different. With a still tender heart, I raised my hand in praise. Steve grasped my other hand and Nathan put his arm around me. I was held on all sides.

    Dead things come alive….

    Where, oh death, is your sting?

    The last one got me…

    “Right here,” I thought.

    Something comes out of the grave every time I call You, Jesus…

    “Come out of the grave,” my soul whispered.

    I am the dead thing that needs to come alive.

    Sweet boy, you are alive where it is eternally Easter Sunday. There is never-ending joyful celebration, and it is never hopeful. Hope needs no existence where you are. It is already perfect beyond imagination.

    If God were to, in all His power, allow me to decide – if you stay with Him or come back to me – what would I choose?

    For me, I would want you back.
    I miss my buddy and my entire soul craves your smile, your hug, your laugh.
    You were my ever-present companion and reason for living.
    Being your mom was my highest honor. It always will be.
    Caring for you felt like my Divine purpose.

    And it was, for a while.

    But having you here with me would be entirely selfish. Your ‘here’ included doctors’ appointments and surgeries and medical complexities. It had pain and discomfort. Your body worked so hard. Even though there was so much love, I humbly know it is nothing compared to the tangible, faultless love you now have. Your ‘there’ is glorious. Your body no longer struggles to compensate. Everyone understands you and there is no need for words. There is no sickness. You are with the Great Healer.

    Dead things come alive.

    Something comes out of the grave.

    I will, sweet boy. It will not be as dramatic as standing up and walking out. It will be more like when you got sick three and a half years ago. Critical illness followed by two surgeries including open-heart left you lying in an ICU bed for a month. Your muscles became weak. When you finally came home you couldn’t sit up by yourself. So we started by trying to get you to move your legs in bed. Do you remember we would put on the Wii Fit Dance and stomp our feet? We just wanted you to move even if only a little.

    Once you could move your legs, we dangled them off the side of the bed and tried to get you to sit without support. The first time you flopped right over as if you never sat up before. It took weeks. Just sitting was our victory. I would transfer you from the bed to your wheelchair. You needed my complete support and trusted me to not let go. Eventually, strength returned enough to stand and you only needed me for balance. Months later you learned to walk again with support. Your muscles needed time to recover, strengthen, and to remember. We didn’t listen when the experts said you probably wouldn’t walk again. You were so resilient and persistent. It wasn’t the same as before you got sick, but it was functional and you were proud. I was too. We found a new normal.

    I miss you.

    When you left, sweet boy, my heart got sick.

    My soul was hurt.

    The best parts of me disappeared.
    They are still here.
    I will find them again.

    I am weak.
    But just in the last few days I have started to move my legs.
    I need some time to recover, strengthen, and to remember.
    You taught me how to never give up.
    I still need so much support but eventually I will walk again.

    I will walk right out of the grave.

  • Silence of Saturday

    Silence of Saturday

    The hurt is constant but heavier today, sweet boy. Tomorrow is Easter and I will only make one basket. This will be our first family holiday in the after.

    I am hunting for the good.

    Every morning I wake up and my first thought is, “He is gone.” My second thought is a prayer. For peace. For comfort. For direction. For the gigantic space to abate even if just a little. For His Presence and Mercy.

    Six weeks later and grief is still intense, but I can breathe a little between the attacks. The truth hasn’t settled completely in my mind, but it is almost there. I still hear you sometimes. I fight the reality I no longer have to make sure you are all right. We went to a movie yesterday and there were no arrangements needed for your care. It did not matter it was a long movie because I didn’t have to be home in time to catheterize you. It was detested and unwelcomed. But it is here. I have no choice.

    Today marks the day in our faith, sweet boy, that was silent. This is the in between. Death seemed to have won. Resurrection was still to come. We have no rituals to celebrate today – only to call it “Holy”. Was it hopeful? Frightening? Quiet? Wondering? Doubting? Wrestling?

    Grief lives most violently in the silence of Saturday. The ripping from this world is done. The victory is yet to be. It only took Jesus three days. How I wish Grief worked that quickly.

    But she is stubborn. She is relentless. She is powerful. She likes to take her time.

    So, I sit in Saturday. Six of them since you left, sweet boy. I will be stuck here in the violent silence of Saturday with a broken heart for all that was you, my whole world.

    Resurrection is coming. I hold to hope. The stone will roll away. Darkness will be swallowed by light. I see the slightest glimmer even as I accept grief will reside with me until I join you, sweet boy, on a beautiful Sunday.

  • 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