Grace is what you get that you don't deserve

Author: ashter

It’s me, Ashlee T! I am the pen behind Jamesblakeandgrace.com. I was born and raised in a small Northeast Mississippi town named for the Chickasaw Indian Chief, Iuka, pronounced “eye-you-ka”. From there is where my unmistakable Mississippi accent; for which there are no apologies comes into play.

Parallels

“We need never be hopeless because we can never be irreparably broken.” – John Green, Looking for Alaska 

Sometimes the stories we live to tell are not always pretty and carefully edited. Sometimes they are raw and real. This is where we find the truth. Sometimes the truth is sweet, perfect, and as warm as the first sliver of morning sunshine kissing the sky, but other times it rears its face as cold and hard, a wounding thing, as unkind as the venomous sting of a bee. In this story, you will see both the joyful and painful sides of the truth. However, as the author, I chose to keep an open heart and mind and accept my truth. I used my truth to share remembrance and hope rather than denial and sorrow. It is my most sincere wish that this story signifies perseverance as a beacon and light of encouragement for sharing one’s truth.

This was our 2020 Christmas card, but the cards never made it in the mail due to a printing error. We spent the Fall in the Dominican Republic and had two kiddos who were perfectly content with island life and reluctant to come home.

2020 has certainly taken its place in history as what I have heard described more than once as  “a dumpster fire” amongst other things. Looking back, distancing myself from social media for many long months during the pandemic and immersing myself in “real life”, was  invaluable and freed up time for so many simple things that I love including reading, running, and gardening. Despite the beauty and magic of having Jameson and Blakely home for virtual school, the days grew longer and fall segued to tell the story of an exhausting, relentless, “year of missing” that had stolen so much beauty and light from so many. Lives, mental health, material possessions, ideas, and in essence, to some, everything was lost or gravely affected. Little did I know, before the year’s end, I would experience profound loss. The separation, distance, social injustice, and trauma of loss during the pandemic left a mark on each of us in its own way.

To immerse yourself in this story, close your eyes and imagine two lines that run alongside each other forever, yet never intersect or touch. You may recall what I am describing as parallels. I imagine a picture like the one I remember from my math book when I close my eyes. Now, imagine two people, two drastically different people, that have many things in common that are not necessarily visible to the eye. Visualize them as passengers on the parallel lines. You should know that one of the passengers has an illness that he is ashamed of. He cannot control the illness, therefore it mentally, then physically consumes him. The other does not know that he has an illness that will eventually consume control of his brain. How people can be lost twice, but not always to death? In this story, I will tell you. To quote Dr. Daniel Amen, “Everything begins and ends in the brain.” 

Popaw Davis, Daddy, Justin, and Me

The two passengers I referred to were my Dad and my Mom’s Dad, my Grandfather, Popaw. My Dad unintentionally and unknowingly taught my brother and me patience and resilience. My Grandfather taught us patience and resilience purposefully and with strategic intent while filling the void that our father often could not. During our formative years, our grandparents on both sides were resounding sources of stability and love. As a recovered alcoholic in our adulthood, my father knew that my brother and I had spent many years of our childhood wondering when or if we would see him for one month in the summer, one weekend, or simply one day. Losing someone to alcoholism is painful and in the mind of a child, causes insatiable grief that I can describe as eerily similar to losing someone to death. For the child or family member who is anxiety-ridden and waits in constant fear of the death of the loved one from the disease, this is slow, and it is agonizing. As an adult, I found this pain comparable to losing my Grandfather to Alzheimer’s disease. It was slow. It was debilitating and it was painful to watch as Alzheimer’s consumed his mind and ripped away at the fabric of patience and resilience that I had always found stable and invaluable. As he lost his independence and his memory became locked, I felt the enormous weight of grief and overwhelming pain for the loss of who he was. My selfish desire to keep him cognizant and strong was overwhelming. I wanted him to maintain each of his memories so that he could call us each by our nickname or sing silly songs with us and we would be safe with him, just like when we were little. See where the parallels and comparisons are taking us?   

The void our Grandfather filled was enormous. My memories are infinite. When he could no longer remember my name, I thought that I was broken. I knew we had lost him to Alzheimer’s. Despite advancements in modern medicine, there is no cure or effective treatment. I felt the pain of heartbreak and the panic of anxiety-ridden grief squeezing my soul. I didn’t talk about it freely, but Jameson and Blakely would ask me why their Papa could not remember. They learned big words fast. I explained what Alzheimer’s was and why his brain was losing connections between his neurons which led to him losing his memories. The overarching shelter and blessing that minimized this loss was having our Dad who had recovered from alcoholism. He was a source of quiet strength for us. He shared his memories of good times with our Grandfather and what an inspiration he was to him when he was younger. Daddy always had a story to share and could always remember the “good old days.” It was now his turn to fill a void and take his place where he had been indescribably missed for so many years. 

When Covid struck the nursing facility, our Grandfather was safe for the first few weeks then the outbreak became uncontainable. He and our Nana were among the many patients who tested positive. She was asymptomatic, but he became ill. Even at 90, he was a fighter. When he tested positive, he had just overcome a bout of pneumonia. He fought, and he survived almost 14 days. My heart was crushed even more when I got the call that we had lost him the second time. I was mad. I was so, so angry. Covid had stolen our last good byes, our ability to hold his hand, the moments that we should have been there to whisper “we are here Popaw, it is ok to let go.” I listened via Zoom on August 21, 2020, to Brother Raymond Osborn describe him perfectly as someone who was always willing to help and say “greater love hath no man than this, that a man lay down his life for his friends.” That was Popaw. I wrote a eulogy that described him as both Lynyrd Skynyrd’s “Simple Kind of Man” and Tim McGraw’s “Humble and Kind.” Riley Green’s song, “I Wish Grandpas Never Died” makes me bawl like a baby because those words fit what I need to say about life.

When I got the call about my Dad four short months later, I felt like I was drowning. I wanted to shout and cry as anxiety clawed at my soul while ripping my heart to shreds like tissue paper. I was still angry about losing my Popaw. How could it be possible to lose someone else twice, someone who had worked so hard to get back to himself? I waited, and I did not tell the kids that their Popaw Mike was gone. How could I, it was three days before Christmas? I am not a crier, but to be honest, I have cried more in the past 4 months than I have in 20 years. Covid had once again stolen the normalcy of visitation and a funeral service for friends. The timing of the Nashville bombing stole our ability to send and receive flowers in our small home town. There was no closure and there was no explanation. Like Popaw, Daddy was alone in his last minutes. We were not there to say goodbye, hold his hand, to tell him that we still needed him, or ask him to go to the hospital. We do not know for certain if it was a stroke, but all signs point to the likelihood it was a cardiac event. I once again took out a pen and a piece of paper because that is what I do and it was the last gift I could give. I felt a ringing echo in my mind telling me that I had been here before. I could hear his soundtrack in my mind and Chris Stapleton’s “Broken Halos” and Creedence Clearwater Revival’s “Long As I Can See The Light” were pretty loud.  We said goodbye to our Dad on December 27 with the 23 Psalm, the Lord as our Shepherd, knowing that his earthly chains were gone. He loved fishing and the lake because he grew up there. I do regret not mentioning running trotlines at his service just for a laugh because I know he would have appreciated the memory. John Prine’s song, “Souvenirs” might have been pulled from the threads of my old soul just for me to remember my Daddy.     

When we looked through Daddy’s things, we found stacks of handwritten letters and cards from our childhood that my brother and I had sent. Each was wrinkled and stored in its original weathered envelope. He had kept mementos I had left on his father’s, my Papaw Mack’s grave. I found the 33, 45, and 78 records that I grew up listening to. This brought back the memory of the “Sanford and Son” episode, The Blind Mellow Jelly Collection. He was a classic tv buff & always brought up the phrase “I want my Daddy’s Records” because of this episode. I had to laugh to myself because now, I literally had “my Daddy’s records.” I found cassette tapes that I cherished as a child. I found a certificate from The University of Mississippi where he attended a recovery program. My heart swelled. After all of his years of shame and spiraling out of control and letting the illness of alcoholism consume him; he should have been as proud of this achievement as I was when I held it in my hands. There were many good years when he was fully with us before we lost him to alcoholism. There were many months when we had him before he slipped away again. I will always say that alcoholism is a disease, and I do not wish to debate. Medical science and brain study research offer all of the proof I need. Alcoholism still hurts the loved ones of those suffering from it, but modern research does offer valuable insight into treatments, medications, and therapies that were not widely available years ago. I honestly believe that my Dad suffered from Prolonged Grief Disorder or Complicated Grief which eventually lead to his alcoholism. When he was a child around 10 years old, my Dad’s Uncle Till asked him to show him how to use a shotgun. Not knowing his Uncle’s intentions, my Daddy innocently showed him how to load the gun and use it. His Uncle later used the gun to commit suicide. My Daddy NEVER talked about this to me. I only knew that he had committed suicide. My aunt Sharee told me the entire story to fill in the blanks after I read statements that Daddy had written as an adult. In therapy he had written multiple times that he felt like he had “let his uncle down” and he regretted it. I cannot imagine the trauma that this inflicted on his young mind. I wish for things I cannot control. I wish I knew how this had been addressed when it happened. I wish there had been an intervention therapist there to discuss his feelings. I wish there had been a different outcome and he had never experienced that terrible adverse childhood experience of loss. 

My brother and I did not get our Dad back from the depths of alcoholism until we were grown adults with children of our own. Miracles do happen, and our Dad was proof. I am forever thankful that my nephew Preston, Jameson, and Blakely knew him. I know that he grieved in his own way for the years with us that he had lost, and he held on to shame, but again, I am forever thankful for his recovery and the redemption of amazing grace. 

Understanding what I know to be true and comparing how two people that I love so dearly are gone without a final goodbye is hard. The parallels between the two run so close they could almost crash, yet they do not. Alcoholism and Alzheimer’s are both thieves. Covid has crept up to run a fast first in this race that is traumatizing so many families and friends across the world. Each disease finds a way to antagonize and steal sacred moments, hours, days, years, and memories. As a parent, I have made it a point to explain Alzheimer’s, alcoholism, addiction, mental illness, etc. to both of my children. It is time as a society that we break the cycle of ignoring, stigmatizing, and shaming those who silently suffer and instead find ways to encourage successful treatment plans and methods that meet each individual’s brain-based needs. I have seen firsthand that there is no “one size fits all” approach to alcoholism and that is where we as a society have failed. I wonder how things would have been different if the trauma that my Dad experienced had been addressed by a therapist and he had received counseling for adverse childhood experiences. I think maybe the universe had a plan for me when I became a Developmental Therapist. I say let us learn from the past and as Maya Angelou said, “when we know better, do better.” 

My Dad would have turned 66 today, February 5 and my Papaw would have turned 91 on the 24. I know that they are both at peace, and I find solace in the many memories I have. I will always have resilience & I will always have music. I will always love George Jones, Hank, the country outlaws, the Beach Boys, Creedence, Bruce Springsteen, and so many more musical influences that they both adored. I will always have Clint Eastwood Movies, John Wayne, The Beverly Hillbillies, The Blues Brothers, classic tv, A Christmas Story, and Christmas Vacation. I will always know how to do things that will make people ask questions, such as handle a rooster, track a deer, catch a fish, measure a cord of wood, and grow killer tomatoes. Other than genes, these are pieces of “them” that I carry with me. This is how parallels run, strong and straight, forever like my comparisons in this story of good, bad, ugly, and truth. Through prayer or meditation, in remembrance, and in grace; may you find the strength, peace, and resilience in your truth that I have found in mine. If this story touches one person who needs courage, comfort, or a sign that there is hope in sharing remembrance, then I have accomplished my goal as the author. 

I hate graveyards and old pawn shops

For they always bring me tears

I can’t forgive the way they rob me 

Of my childhood souvenirs.   

John Prine

In loving memory  

Edward “Tobe” Oneal Davis

2/24/1930 – 8/17/2020

Johnny Micheal “Mike” Goode

2/5/1955-12/22/2020

Out Damn Liver! Out!

This was written over a matter of days. Bear with me, I did not spell check or use Grammarly.

Saturday night, October 15, 2016, I found myself alone in the car. Somehow I managed to make it down 14 floors on an empty elevator through a long deserted hospital corridor and over a crosswalk to the parking garage.  I lost track of time and space. Jon’s transplant was scheduled for Monday. As I sat in the car, I thought about the part of my heart that I left in a hospital room 14 floors above me. Before I left, I tried to answer some questions that he had asked in the most positive and encouraging manner I could. I mean honestly, I am pretty resilient and tough. I remembered as I choked & tried to fight back tears as I spoke at my grandmother, Mary Helen’s funeral earlier this year. I actually keep the piece of paper that I wrote the speech on in my jacket pocket in the closet. I pull that paper out when I need a raw dose of courage. I thought about Ash Coffman and channeled the strength that I saw and felt in her writing when she spoke of her grandmother’s dementia this year. I thought about how I took initiative from these experiences and prepared a speech in advance for my beloved grandfather who locked us all away in his mind in the name of Alzheimer’s. All of these things considered, I still found it a little difficult to work around the anger, sadness, and denial that came with reading a piece of paper that states the reason for hospital admission of a 34-year-old person is liver failure and end-stage liver disease.

I thought about random things and luck. Despite his disease and diagnoses, Jon was fortunate. A little background: for the typical PSC (Primary Sclerosing Cholangitis) patient, the MELD (Model for End-Stage Liver Disease) score is not high enough for the patient to be listed as in other types of liver disease. From the mouth of a medical professional, “PSC patients get screwed”. This is in part because of the criteria required for a MELD score that warrants a transplant. I actually stopped researching justification for the criteria simply because it fueled my anger knowing what Jon has faced and what our family has faced over the past few years. However, after several people were denied the opportunity to be donors for various medical reasons, Andrew stepped up and our lives changed.

#damnliver #teamterauchi

#damnliver #teamterauchi photo Courtesy of Jackie Spivey Photography

I thought about people asking me how I smile through it all. Sometimes I wonder if it is a talent I was blessed with or maybe some sort of ironic preparation for a meltdown that will certainly occur at some point. Whatever the reason, regardless of my feelings, I still manage. I smile for many reasons. I smile for my children, I smile for sunshine, I smile for hope, I smile for grace and the gift of every day that we are given. If the smiles stop, I think a chain reaction of emotions will sabotage any ounce of composure I have left. As I drove to our home away from home in Dallas Saturday evening, I thought about the Langston and Hays family who are sources of inspiration and strength. Each family is faced with completely different yet similar trials and still find reasons to smile. I thought about what I have learned on this journey. The strength I have gained from the wisdom and faith of others is humbling.

Monday crept up stealing the last few minutes of Sunday’s anticipation and brought with it anxiety, fear, but also an eerie sense of calm that I can only claim in the name of the almighty through the many prayers, thoughts, good vibes, and words of encouragement and comfort that so many sent. Then the paradox of calm and goodbyes collided. There are songs, poems, and even movies about goodbyes that make people bawl. The most difficult goodbyes I have ever said were to Andrew and then Jon both within an hour or so. I realized that I had no control over anything as they rolled away. I had to find the faith and then let go. It sounds so surreal now, but at those moments my fear was real. I still managed to hold myself together.

Jameson, Blakely, and Jon before his transplant.

I lost track of the hours and found myself in a daze as I walked to Andrew’s ICU room where I was overwhelmed by the act for which I would never be able to thank him enough. He is undoubtedly my hero. Later when the call came, I hurried to Jon’s. I was numb. I was numb to the bone. Tubes and lines were everywhere. He was surrounded by machines. I just stared. I knew that he couldn’t see me. He didn’t even know I was there. He wasn’t even breathing by himself. I knew he wouldn’t see me if I cried. I couldn’t cry because I was too happy. It wasn’t time to cry even though I probably really needed and wanted to if only for cathartic reasons. Two people that I love dearly were now joined by more than brotherly love. They literally shared a liver!

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The 10 year twins seeing each other for the first time after the transplant.

On Tuesday Jon was moved from the ICU to his room at 14 Roberts the Liver and Transplant Floor. The day flew by with beeping and whirring pumps and mechanized machines. Wednesday came with me watching Jon struggle with relentless pain and nausea. I missed my babies, I missed my home, I missed my friends who comfort me and support me. I wanted to scream. I wanted to hit things. I wanted to throw a tantrum like a two-year-old and cry out. Looking back, I am 100% sure I would have been escorted to the psych ward had I not been able to control myself. I don’t remember much about this day other than how I just described my frustration and the inability to help the man that I love. The fact that we are covered in grace probably saved me once again.  I say once again because many times this week things were out of my control. However, I managed to hold myself together

In the grand scheme of things, my time came Wednesday night. I was standing in the doorway of 14 Roberts beside the nurse’s station and behind Andrew and Ashley. I was dumbfounded when I heard cheering and saw pompoms shaking in the air. It was quiet time, what was going on?! The green and white pompoms were held by nurses who were also clapping and cheering. Ashley filled me in on what was happening. Next, I saw a hospital bed roll past me with a thin, frail body, yellow jaundice eyes, and the biggest alligator tears that you can imagine. “It’s a parade, he is getting a liver!” she said. He was getting a liver! I felt myself shaking inside as I began to tear up. It was inevitable that he, the frail human on that bed, did not have a brother like Andrew. He was getting HIS liver because someone that he had never met had chosen to be an organ donor. I broke down. I thought about the circumstances that lead to this. I just let myself go because I saw the grace in it all. I cried happy tears and I smiled on that elevator for the 14-floor ride. I cried because Jon had a liver and I cried because I saw the other humbling side of the fence where hope and faith were all that one had left.

The #damnliver is gone and the new one is "beautiful" according to the transplant team and "sparkly" according to Miss Blakely!!

The #damnliver is gone and the new one is “beautiful” according to the transplant team and “sparkly” according to Miss Blakely!!

I know the coming days will be challenging and trying as the healing process and life adjustments continue. I want to say thank you again from our family to the hundreds of friends, friends of friends, family members, and medical professionals who have prayed, encouraged us, comforted us, sent good vibes, and supported us in so many ways before, during, and now after Team Terauchi’s living donor liver transplant. If you have not considering being an organ donor, I want to encourage you to visit https://www.donatelife.net/ to learn the facts about organ and tissue donation.  Please consider giving the gift of life or donating blood!

jackie

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What is Normal?

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It has been a while. I have been slacking on building that great idea that bursts with sprinkles, unicorns, and happiness. I wanted this blog to be something positive & in a sense, I think it has become an outlet. At this juncture, I have lost count of the weeks of hospital stays and doctor visits this year. I’ve never deemed myself a math scholar so chalk it up as you will; denial, refusal to accept the inevitable or poor math skills. Giving credence to poor math skills makes me feel like I have control over the anxiety that is consuming me. Today I want to scream, yell, and break things. I’m usually sentimental, but today I do not even care if the things I want to break are pretty things.

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Working, adulting, and kidding

On the road with JamesBlakeandGrace.

As my colleagues and I head to the 43 annual National Head Start conference I think about the lengthy journey that led me here.

For years, I stalled… trying to decide what I wanted to be when I grew up was just not on my agenda. I still laugh and jokingly say the adult choice was a lawyer & goof off choice B. was a DJ. Neither happened. A professor was another option stuck deep in the recesses of my brain. Looking back, I am thankful that I was encouraged to observe early childhood special education and the field of early intervention in action. You should be thankful also, Lord only knows what my version of a dj smash up might have included…

When I was introduced to early intervention at my son’s preschool in 2009, I was sold. The director of the facility encouraged me to shadow and find out more about the field that would become my passion platform. Beyond the formality of the laws and mandates, I realized the true impact of early intervention and early childhood education. Realizing I wanted to serve, advocate, & teach others how to learn was a step towards my MS and therapy certification.

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Make every moment count

Mother’s Day was amazing! I enjoyed mimosas and shenanigans at Mellow Mushroom with Jon, Jameson, & Blakely. With that being said, I would love nothing more than to begin with a funny or articulately written Mother’s Day story with a catchy title choice. Let me be honest, this will not be the case. I am looking into a serious part of my world. A part of my world that involves mixed feelings and concrete words like PSC, liver disease, hospital, medication, pic lines, transplant…. For me, as a mother and wife, overload. With this being said, these words are my path on a journey that began long before I met the love of my life.

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Grace is what you get that you don’t deserve

If I had chosen a name related to Johnny Cash, Elvis, gangster rap, country outlaws, or the 80’s this idea would have been all too predictable for those who know me. Much like the fact that I collect & hoard groups of 3 plus items in multiple colors that I will probably never wear or use, my mind is always brimming with information that usually annoys the hell out of me if I cannot figure out how to channel it artistically. With that being said, James Blake and Grace was the creative precursor to damnliver.com which you will hear referenced quite frequently.

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