Patience to Endure

Category: Faith

  • The Gift I Never Asked For

    The Gift I Never Asked For

    Holding Grief and Gratitude After Losing a Child

    Grief is a thief. She takes from every corner, yet sometimes she leaves quiet, involuntary gifts to families like ours.

    Sweet boy, while I am waiting for rebuilding to begin, if it ever does, I wonder who I will become. I will always be your mom and still am to your brothers. And yet it is different now for all three of you.

    One of the confusing truths from the loss of you I am left to untangle is that I will be able to be more present for your brothers now. The gift arrived in a way I never would have asked for, sweet boy. Accepting it with gratitude disconnects somewhere between my heart and my mind.

    In an empty room of my heart, Grief has left a box in repulsive wrapping. Inside are gifts made possible only in the after.

    Sweet boy, our family was necessarily built around you. Your complex special and medical needs required intensive attention. Ignoring or delaying them was never an option. It would have been life threatening to you.

    Taking care of you will always be my highest honor, sweet boy, but I missed events for your brothers. I couldn’t take them to see movies very often. Sometimes parent teacher conferences weren’t possible. Performances were missed. Rarely were we able to sit down at a restaurant. We weren’t a typical family.

    We still aren’t.

    Grief moved in.

    Your brothers sacrificed in big ways and small for you, sweet boy. All of us did to give you the best life possible. When the sadness gets too much, I hold to that thought—we did give you the best life possible. You returned the favor a thousand-fold, sweet boy.

    I both detest Grief’s gifts, yet I am grateful.

    How does a mother untangle that?

    Do you remember how we would often go to Target with Nathan? It was one of your absolute favorite outings. On one of those trips, I was unfolding the wheelchair ramp to get you out and saw a family in the car next to us get out and go.

    How odd, I thought.

    I still had to put your socks on and gather your shoes which you took off the minute we got into the car. I needed to make sure your iPad and sippy cup attached to the chair. You always threw them when you were done. We learned to dodge flying iPads, but it was a serious safety hazard in public.

    It wasn’t envy I felt for the family but recognition of a culture vastly different from ours. For us to have their simplicity would have meant we didn’t have you.

    And now we don’t.

    There are no extra steps to take when we go out. It doesn’t matter if a location is accessible. We can hop out of the car and walk in the store except I don’t want to go. I do not want to be anywhere you are not.

    But I wasn’t given that choice.

    What I wouldn’t give to be encumbered because it was all in the care of you. It was never heavy. It was our life and you were my world.

    Nathan asked if someday we would get to take an airplane. Perhaps we will.

    The future and the maps are hidden.

    I have been praying for God to open a door or at the very least crack a window. This enclosed room is suffocating. It is dark with only an occasional break from constant shadows. The air is stifling.

    Sweet boy, just maybe, He is working on building a house while I am waiting for an open door.

    It begins with a gift.

    As an act of faith, I pick it up and slowly, gingerly begin to unravel the bow.

    Perhaps, in doing so, I will untangle the gift from the means by which it came and try to hold it with gratitude.

  • Bed Rails

    Bed Rails

    Grief has a way of wrecking everything—including priorities. Apathy sneaks in just behind her. Nothing seems important.

    How can it be when you are gone?

    This morning Grandma said,

    Do I look like I care what the floor looks like?

    Sweet boy, the floors are not as clean as when you were here. Grandma kept them immaculate because she worried to no end about you crawling. She took her mission to keep you safe and clean seriously. We all did everything we could to protect you from outside harm—we couldn’t stop what happened inside. I am so sorry.

    When you did not come home with me from the hospital, sweet boy, my soul went to sleep.

    I hope one day I might crawl.

    I was so proud when you remembered how to crawl after losing the ability to walk for a while. Nothing ever stopped you. When no one was immediately available to help, you would gently slide out of your chair or off your bed and crawl.

    If you were in the bedroom and someone came to visit, as soon as you heard their voice, you would crawl to the kitchen. You reached the people you loved by any means necessary.

    That, sweet boy, is the tenacity I need.

    On the harder days—most days—I wonder if my story ends with me stuck in bed.

    I hear the people I love in the next room. Everything in me wants to slide off the bed and crawl to them.

    Grief has the bed rails high.

    But God will lower them—in His time.

    My soul is in deep anguish.
    How long, Lord, how long? Psalm 6:3

    Only He is more powerful than she is.

    Sometimes, Grief is louder. She is overbearing and chaotic, but I am hearing God’s whispers again, sweet boy.

    The final say is not hers.

    Bed rails restrict—but they also provide safety. Every night after you fell asleep, sweet boy, I would lift them up to keep you from falling out of bed. Then I would kiss your head and tell you,

    You’re my whole world.

    Every single night.

    My bed rails are not permanently fixed. For now, they keep me safe so I don’t fall while my soul is sleeping. Grief is strong but God can make even her work toward good.

    I am not ready, but I will become.

    Perhaps soon, I will slide out of the bed.

    I will crawl—and nothing will stop me from reaching Him—and those who love me.

    Sweet boy, you taught me and you taught me well.

  • A Whisper from Heaven

    A Whisper from Heaven

    Sweet boy, I drove one our favorite routes today.

    The road has taken some damage over the years. So have I. The view, however, was ever the same.

    Grandma and Aunt Dolly went to see a friend from church play at the Batesville Market. It isn’t the kind of place we would have taken you. The building is old and not accessible. I had to carry Aunt Dolly’s walker up a few stairs and then help guide her as she climbed.

    It felt good to care for someone, even slightly, the way I did for you.

    After leaving them settled, I went straight instead of turning around to get home. You loved our drives—especially that stretch of road. We would listen to music and on nights like this we would have rolled down the windows. I can still see you—mouth open smile and eyes squinting—as the wind hit your face. You would shake your head, flap your arms, and bounce with delight.

    The road is long and winding with majestic mountain views. There are historic homes, gigantic mansions, and farmland with cows and horses. It is quintessential Virginia.

    I sobbed.

    Please God, give me something, anything.

    Relieve this pain even a little.

    Give me peace. Let me know You are here and I am not alone. A sign.

    Anything?

    He was the best part of me, my whole world, and you took Him. Why? Why would you do that to me?

    I am here. Your daughter. Your child is alone and hurt and scared. Won’t you do anything at all to help me?

    Please God. Please.

    Sometimes He calms the storm. 
    Sometimes He calms the child.

    Sometimes He does nothing.

    Or so it feels.

    Grief has revealed a depth of my soul I never knew existed—where tears and agony are abundant. Or perhaps she found the now empty place where you once were and settled right in.

    When God took you back, sweet boy, your heart became infected with bacteria. It spread everywhere.

    When God made me stay, my heart became infected with Grief. She invades everything.

    At the end of the drive, I dried my tears and ended my lamentation with:

    I am holding on to You anyway.

    I was surprised Grandma and Aunt Dolly wanted to stay the entire time. It tickled my heart to envision two ladies in their eighties hanging out listening to jazz on a Friday night.

    When I left a couple of hours later to pick up them up, I stood at the car and looked up at the beautiful spring sky. This time of year, every part of creation announces the new season—even the stars.

    Okay, God. I am asking again for a sign. Would You show me a shooting star? At least let me know I am not alone.

    Sweet boy, wouldn’t you know one appeared as soon as I finished asking?

    It wasn’t particularly spectacular in brightness or length—just a whisper and had I not been looking at that exact spot in the sky I might have missed it.

    The feeling might not last, but it came and that matters.

    It is a lifeline I can grab when the abyss comes—and it assuredly does.

    I miss you, sweet boy, more than I ever knew a heart could.

    At this point, living captive by Grief for eight weeks, I will take promises yet to be.

    For the first time I thought—

    just maybe,

    I am going to be all right.

  • The Direct Line

    The Direct Line

    Sweet boy, last night I went to check on Grandma as she was in the garage, re-organizing. She has always loved projects but since you left, they are her lifeline. For her, Grief is temporarily hidden by keeping busy. There isn’t enough busyness in the world, though, for Grief to remain quiet.

    Every morning I sit on the couch waiting for the morning sun. I have been hunting for even the smallest enjoyment. It can feel like a drop of water for a ravenously thirsty soul. Over time and with intention, I pray, those drops just might add up to a glass of water.

    Grandma sat down on the edge of the coffee table. Her tiny body held enormous grief as her eyes welled up. She told me every morning she wakes up in a panic because she feels one of you boys missing. At eighty years old, her brain takes a few minutes to process exactly what that feeling is and who she cannot find.

    You are gone.

    In those few seconds while she tries to become oriented and discover who is missing, you are still here—until reality crashes down, and trying to subdue Grief becomes unsustainable.

    When I looked in on her in the garage last night I said, “Are you ok?” in the exact tone of silliness I used to say to you.

    Are you okay, Wesley. You ok?

    You would laugh so hard.

    Here in the after, without you, there is no place for our silliness to go. I grab little glimpses when it slips out—like a single hiccup I didn’t expect that startles me.

    When you were here, sweet boy, our home was filled with silliness in equal measure and importance to the very air. Our favorite sound was your laughter, and we did anything to hear it. You would laugh so hard and turn blue. I would have to remind you to breathe.

    Do you remember when we lived in the ICU for one month? It was the day before your open-heart surgery and Steve had you laughing so hard your oxygen dropped to below 88. The nurse came running into your room, worried you might be in distress. She was relieved to find you laughing. Steve could always go toe to toe with you in unadulterated silliness.

    You were so sick, sweet boy, but even that couldn’t stop your laugh.

    If I could have just a pinch of your resilience here in the after.

    My heart is sick in a different way than yours was.

    I wish desperately I could feel silly and laugh with you again.

    Someday, after my last tomorrow, I will.

    The house is horribly quiet.

    Seriousness weighs heavily in the air where laughter once floated.

    I dreamed last night the whole family was at the beach and the roof was on fire. The fire resolved on its own but took the entire roof. We were unprotected. Rain was imminent. We couldn’t find the paper with the phone number for the people who could help. Everyone was scrambling but it was not found.

    Like the dream, I feel unsafe in the world but there is still beauty. Unlike the dream, I don’t need a piece of paper to know Who to call for help. I know it by heart.

    When you were “actively dying” in the hospital the doctor asked if we wanted a chaplain to come. I declined, saying

    I have a direct line.

    Over our twenty-four years together, sweet boy, I called on God more times than I can count. Three times I simply asked Him:

    Please, God, give me whatever I need for the next part of the journey.

    It was the prayer of ultimate surrender from a desperate mother. Only the miracle of healing would keep you here with me, and I did not believe it was coming. There are always miracles, sweet boy, but sometimes they come by God’s definition—morning sun or Grandma’s smile or the new green of spring.

    God healed you anyway and you came home from the hospital. Though I am grateful, how I wish He had done it once more.

    I didn’t need whatever it was I thought He could give to help the unimaginable. Until now.

    And I had it all along.

    A direct line.

    I cannot escape Grief even in my sleep. She is the most relentless, unforgiving encounter of my life. Here in the after, there are times she is too loud and distorts my end of the direct line. Other times it is my own anger that makes it hard to hear.

    Yet I know I can’t disconnect from the very God who is 

    my rock
    my refuge
    my strong tower
    my peace
    my portion
    my provider
    my strength
    my only way through this..

    So I call. In the questioning, I call. In the anger, I call. In the depths of suffering, I call. For the next breath, I call. In brief flickers of peace, I call. In gratitude, I call. When I don't know what to say, I call.
    When all I can do is scream, I call.

    Even if I hear nothing in response, I call.

    On the other side of my call, beyond what I can hear, I know you are laughing.

    I will laugh again, sweet boy, if for no other reason than to honor you. We are laughing on different sides of eternity. Laughing was your favorite. I can only imagine it still is.

    I will find new ways to be silly.

    But for today, seven and a half weeks in the after, I have to remind myself to breathe. Each recovered breath feels like rehabilitation—picking up my direct line is an act of rebellion.

    Each time I do I move gradually—never linearly—toward the unappointed day when laughter and silliness are not mere memories.

    Grief will not have the final say.

  • 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.

  • 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)

  • 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