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
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.
I am not at all steady today, sweet boy. The tears won’t stop. My eyes are swollen. The world does not spin as it should. The fog descended again and everything seems slow motion. It has been twenty-two days.
Today I am simply hoping to hope.
Years ago I wrote a blog about Kintsugi, the Japanese art of repairing broken pottery with gold. The pieces are put back together with gold leaving familiarity but a new creation reinforced and more valuable than before the breaking.
I wrote it after your dad died. I tried so hard this morning while watching the morning sun come to hope perhaps I would be put back together once again . This time, sweet boy, my soul is not broken. It is pulverized.
I began looking for some sort of hopeful imagery about pulverized material being created into something new.
Glass Blowing
It begins with molten glass. The process requires purified sand (the structure), ash (lowers the melting temperature), limestone (stabilizes and strengthens), and recycled glass (makes the mixture melt faster and conserves energy). The mixture is heated to about 3100 degrees Fahrenheit for melting, chemical reactions, and impurities rise out. The molten glass is kept hot for the refining process. The heat forces trapped bubbles to escape, the mixture becomes uniform, and impurities separate.
The artist will then blow air through a special instrument to form the shape. The new creation is shaped by the artist’s hands, gravity, and breath of life.
Perhaps glass blowing will be another writing for another day. A day when I can see the forming shape that has been created by God’s hand and the breath of His Spirit.
Today is not that day. Today I have not been able to stop crying. Today your baby brother held me on the couch as I sobbed and told me it was normal to be sad, that I should cry it out so it doesn’t come out in a bad way. I don’t know when he got so wise. The coin flipped and instead of me telling him it was going to be all right and kissing away the sadness, he did that for me.
I told him about a sermon I watched today about Nathaneal, his name sake. In the Book of John, Philip tells Nathaneal about Jesus.
Can anything good come out of Nazareth? John 1:46
Before Nathaneal knew Jesus he couldn’t imagine what good may come. Immediately upon being found by Him he said “Rabbi, you are the son of God; you are the King of Israel.” (John 1:49)
It didn’t take long for Nathaneal to realize what good could come from unexpected places. I told Nathan for us, it may take a little longer not because we don’t believe but because our grief is so deep. But we do believe. And it is coming.
Your sweet brother got me the last coke in the house with a bunch of ice. He even made it fancy to try to make me smile. And it worked.
We went to Tyson’s Corner today. Nathan asked if we could and he never asks for anything. I put the bravest face on I could and off we went.
It was strange just going to the car. There was no backpack to stuff with catheters, aprons, pullups, wipes, g-tube kits, and pureed food. No extra bowls, spoons, or cups to pack. No iPads and extra chargers. No planning lunch based on what restaurant wouldn’t be too loud or too crowded. We just got in the car. And it was awful.
I did alright until the food court. I took Nathan over to get bubble tea and while we waited I instinctively looked over to the table to see if you were okay. But you weren’t there. It is a cruelty that the natural urge to find you is met with the reality that I may not.
I went to the bathroom and sobbed. I am not sure how many more bathrooms I will cry in but I suspect there are many more to come.
When Emerson was in kindergarten he had the most amazing teacher. She was kind and gentle. The kids were rowdy. I remember how the louder they got the quieter she would speak until it was just a whisper. She didn’t escalate the situation and the kids would quiet down so they could hear her. She didn’t match their loudness; they matched her whisper.
The pain from losing you, sweet boy, has been deafening. It is all I hear every moment of every day. It haunts me a night and even while I sleep nightmares come. There is no reprieve.
I don’t know how to quiet it on my own. So I listen. I listen for God’s whispers. I heard one today as we drove back from Northern Virginia in the form of a song I had not heard since 2011. This time, though, the song has entirely different meaning to me. An abridged version:
Two months is too little. They let him go. They had no sudden healing. To think that providence would Take a child from his mother while she prays Is appalling.
Who told us we’d be rescued? What has changed and why should we be saved from nightmares? We’re asking why this happens To us who have died to live? It’s unfair.
This is what it means to be held. How it feels when the sacred is torn from your life And you survive. This is what it is to be loved. And to know that the promise was When everything fell we’d be held.
This hand is bitterness. We want to taste it, let the hatred numb our sorrow. The wise hands opens slowly to lilies of the valley and tomorrow.
If hope is born of suffering. If this is only the beginning. Can we not wait for one hour watching for our Savior?
It doesn’t take away the pain. Not even a little. I have known many mothers who had to bury their children. I always felt so sad for them and as much as I thought I imagined I could understand, the reality is a million times worse. There is no hell on earth quite like losing a child.
Hope has not yet been born of this suffering. But I am held. And I will wait and watch.
After Nathan goes to school I sit in the living room and wait for the morning sun. She begins quietly, warmly, subtly. Over a span of just minutes she presents herself, glorious and strong. The dusty windows do not deter her. She comes anyway.
Last night Leane, Morgan, Chris, Audrey, and Baby Chloe came for dinner. It is our new tradition for Thursdays. A room full of people who loved you beyond words. We shared stories and videos. Baby Chloe came running through the house screaming with excitement. It awakened my deaf ears to hear and, for a moment, my soul was elated and relieved for the noise again.
I told them how after your death I researched your exact deletion. I don’t suppose I did while you were alive because I didn’t want to be scared.
1q21.3 – 22
The notable genes you were missing have much to do with immune signaling, cell signaling, growth regulation, immune cell function, and gene regulation for brain development. The impactful part of late was your immune cells did not activate as strongly as they would have with a complete chromosome. You had a weaker and dysregulated early response to infections. More than likely, your immune system was delayed in recognizing the infection and allowed it to spready easily. The deletion could also have made your system over react and inflammation severe. The list goes on.
I avoided knowing the details because I know I would have altered your life out of fear. We wouldn’t have gone to all your favorite stores or the beach or the prom. We would have never visited New York City or Disney World or mall tours. I would have forced you into a fear bubble even though ultimately it would not have changed this outcome. The bacteria that killed you came from inside your own body and I would have spent your entire life afraid of the bacteria outside of it.
Looking back now though things make much mores sense. You had so many colds that turned to pneumonia. There were random fevers and too many hospitalizations to remember. When you were eighteen months old I heard a doctor say for the first time, “We don’t know what is wrong. If you pray, I would.” It wasn’t the last I heard those words either. You were medically fragile but it was so easy to forget because you were the toughest person I knew.
Our family at the dinner table was assembled by you and stitched together from your love. We smiled last night thinking how we gave you the very best life possible. We dedicated our lives to you and tried so hard to make your time rich. You were rich in love and in experience and in joy – the only riches that matter. Every person at that dinner table loved you deeply. We dedicated all our energy during our precious time with you to make you comfortable, healthy, laugh, fed, entertained, happy, and so very loved. Sweet boy, I know no one else who could say they had that life. You did. You deserved it.
Though we feel content and peace we did give you the very best life possible know this – YOU gave US the very best life possible. We were blessed to know your love. There were no strings, no conditions, no expectations. Just love in its purest form. It is the love God wants us to give one another yet we never seem to achieve. You did, sweet boy. You did it without even trying.
I am steady today. People ask if I am okay and the answer for the last three weeks is always “no.” I judge my days based on the steadiness I feel in the world. It isn’t so much about me being able to keep myself steady. It is about how severely the crashes are causing my imbalance. Yesterday I felt like I was in the middle of the ocean in a severe storm with no flotation device. Waves were out of control, forceful, gigantic. I couldn’t get my head above water long enough for a good breath. My energy was dissipating. I was drowning and the waves of grief were relentless. They were powerful and without mercy.
Then the grief gut punches that stop my heart and take my breath. You are gone.
All Blessings Flow came from the donation center to pick up your bed yesterday. I tried to help but ended up on the couch sobbing. You loved that bed. I can still see your smile erupt to laughter as you pointed your finger up as the bed raised. We received it when you got sick 3 and a half years ago. You weren’t supposed to make it then and were an absolute miracle. You didn’t make it now and you are an absolute miracle.
Our definition of miracle is not the same as God’s. He was generous to give me the miracle I wanted so many times over your life. How I wish He did one more time but I am not angry with Him. I can’t face this without Him.
I hold to the promise:
Now is your time of grief, but I will see you again and rejoice, and no one will take away your joy. (John 16:22)
I am struggling today with the “what ifs”. I read that the brain actually prefers guilt over helplessness. Mine is desperately trying to make sense of senselessness. Grief, it seems, can make us become our own harshest judge.
I remind myself, moment to moment sometimes, that the medical professionals didn’t even know how sick you were. The labwork beguiled the raging infection within you. I just get stuck in the loop seeing it all in hindsight and, I know, that is unfair. It is called “counterfactual thinking” because the randomness of it all is so unsafe. Guilt creates the illusion of control and it is less frightening than believing nothing could have stopped your death even though that is where the harsh, cold, cruel truth resides.
For twenty-four years my nervous system tied my wellbeing to yours and made your safety my biological responsibility. It was beyond maternal instinct. It was in the very system that made me who I am. Apparently, the neuroscience of it is my brain hasn’t immediately understood yet that our relationship has changed. It still wants to know how to find you, protect you, and fix whatever is wrong. It has not relaxed enough to accept I only find you in my memories now. My brain is deceiving me to search the past instead of the present. It is running thousands of alternative timelines looking for the one where you would have survived.
My heart knows though even if I found a timeline in which you lived you still would have not. It is a form of self torture of love not ready to let go. My brain exhaustively is still trying to protect you even though my heart knows you are where you no longer need my protection. You have HIS and there is nothing from which you need protecting. It seems now the only protection I can offer is me from myself.
Sweet boy, I fight the feeling that I failed. I should have, I could have prevented this yet still know I had no control. I cannot control when God says yes and when God says no. How I wish I could. You would still be here with me.
The average distance between the head and heart is twelve inches. For me, it is measured in years…twenty-four of them. My watch has ended but I can’t seem to put the sword down quite yet. The battle is no longer for your health. The war that rages is between my heart and my mind. Grief set me here in the in-between. This is not where I am supposed to stay. This is not where God wants me to be. I know with all certainty you would not want me here.
For now, my sweet boy, I travel back and forth. They are both torturous and broken lands. Sometimes a reprieve allows me to wait in the middle. The irony that my head is protecting my heart and my heart protecting my head is not lost on me. Both are in the process of healing and neither are home. Not yet.
The struggle is two sides of the same coin. My heart and my head are who I am. Each are trying to protect the other and even with the best intentions the flipping creates a chaotic cacophony that just hurts. The day of agreement, they say, is a while away. Grief this deep and this profound does not dissipate soon enough.
I am waiting for the funeral home to call me back to let me know when I can bring you home. We finally have enough money to pay their bill. I am sorry it took so long. I have cleared a space in my office for you. We sat and had coffee there every day. You would sit for hours while I worked on the computer. The only thing you ever wanted in life was to be in the same room as me. It was my truth as well. In some way others might find morbid, I find comfort having you with me still.
Your brothers picked out an urn with a picture frame on the front. We liked the idea of being able to change the pictures. They miss you.
This pain I feel is another two sides to the same coin. For twenty-four years I basked in the glow of so much love and the honor it was to care for you and have you care for me. The coin flipped on February 21st. As great as the love between us is the despair that sits on my heart every day. I know it will get better ever so slowly. The day will come when I think more about your life than your death. I pray it comes soon, sweet boy.
As I sit in the living room on this gloomy day I find another coin. Your chromosomal deletion is what made you special and beautiful and loving. The coin flipped and your chromosomal deletion is what made you not survive.
For today, the coins all lay face up in a way that is unbearable. Yesterday it was sunny and eighty degrees. Today it is snowing. Even nature flips her coin.
I take great comfort that though the coins flip, the promise of our loving God is the final landing will be
He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the former things have passed away. Revelation 21:4
It is another beautiful day, sweet boy. I feel a little steadier today. Still so very sad and lost but steady in this place.
Steve took me to the Overlook Produce to look at plants. I was afraid of how I might react when I saw Buc-ees across the street. How you loved that place! You would sign “mouse” and “cheese” to let me know when you wanted to go there which was more often than we could. You were so clever and thought Buc-ee was a mouse and knew it sounded like “cheese”. You had your own language and I was privileged to understand.
We would get your favorite banana pudding and drive to the Harrisonburg Mall. I would intentionally park at the Old Navy entrance so you would have to use your walker the full length of the mall to the food court. You were always very food motivated. You would sit there and enthusiastically eat every bite while waving to people around us. I will forever remember the staccato movements you would use to scoop the pudding to get as much as possible in one spoonful.
As we drove today I felt an emptiness. It is always present but this was different. From the years of helping with Grief Share I often heard people speak of the relief that came when they didn’t have to intensely care for someone any longer. They weren’t happy their loved one was gone but they felt a sense of alleviation to not have the responsibility.
I looked out the window at the mountains in the distance. I didn’t have that feeling I held for twenty-four years. Even when you were in school or we were apart I never settled. At night I slept lightly always with the ringer on because I knew at any moment you might need me. You were ever present in all I did. I was always at the ready and now that I find no relief to no longer be.
I find it empty in this place. The awful emptiness where something valuable and important was and now nothing remains.
I got home and the basement door was open. You are gone and now we don’t need to be sure you can’t access the stairs. Scissors lay gently on the coffee table where they could never be for fear of you finding them and getting hurt. I no longer scan the floor a thousand times a day seeking small objects you could ingest. Almost a quarter of a century of diligence all for you are no more.
There is no relief. Only a vast emptiness where the hypervigilance once sat and never slept. See, in that space was where I loved you best, where I protected you from anything that could harm you. The two things, however, my sweet boy, I could not protect you from was your own body and God’s timing.
To me, they were both beautiful and awful and merciful and cruel. I miss you endlessly
It is a beautiful day today, sweet boy. The kind of day you would sit on the swing and with furious determination scroll through your Ipad.
I managed to catch up on watering plants and even repotted a couple. Still, most of the day was spent on the couch unpacking the medical trauma from two weeks ago and, of course and always, missing you.
We got to the hospital on February 17th around 11:00 am. As we waited for them to call us back you were feeling well enough to be ticked off. They drew some bloodwork, got you a room, and started IV medication and fluids. After a few hours you were moved to a different part of the emergency room where the stable patients went until a bed opened. You were supposed to go to the general medicine floor. Even the medical professionals could not see and lab work hid how sick you really were.
Around 11:30 pm it all began happening so fast that I didn’t know what was happening even as it was happening.
He is in A-fib. We are moving him to the part of the ED where the ICU trained staff is.
As soon as she finished her sentence a team descended and whisked you out of the room. We have been in the hospitals enough to know rushing teams is not good.
You were taken into the resuscitation room with an unsettling brisk pace. At least twenty people went in the room. It was the same room they took Grandpa into by ambulance 2 years before… My heart sank.
What is happening?
Let me get you a chair.
What is happening with my son?
When they do not answer your question you know you do not want to hear the answer.
I peaked in your room
Your blood pressure was 60/40. You were pale. You were dying. I begged you to stay.
Please come sit down.
Afib….Low blood pressure. Cardioversion. Shock. Could die…
Where is Mom?
I see her standing in the hallway lost. She looked so small and so scared, not the feisty woman I know.
Can you get my mom a chair?
We are conferring. He may need cardioversion to shock his heart. In rare cases it can cause cardiac arrest.
I fall to my knees. Head bowed. Hands clasped.
Please God, one more time, let me keep my son.
My mom calls her best friend on the phone. It is midnight. Her friend comes immediately.
I call Steve. He is crashing. Please come.
A nurse kneels next to us.
I don’t know much because he just got here but I will answer what I can.
Finally someone is speaking to us.
I look in the room again. His blood pressure is 50/30
We are pushing a lot of fluid.
A social worker appears. Do you need a chaplain?
The only time they call a chaplain is when someone is dying. I decline.
The fluids seemed to be helping. Cardioversion postponed. They take you to the ICU.
Over the next few days I would see only small glimpses of you. You were on a lot of medication. I began missing you already.
The next big trauma would begin on February 21st and would be your last.
No more shocks to the heart, sweet boy. No more infections or failing valves. No more cascading dominoes. Not for you, anyway. Mommy is trying so hard every day to keep one domino up. I just need one to stay stable. It often teeters but I will not relent. You taught me well. I will make you proud.
Patience to Endure 