We grieve, we grind and we hang on to hope
Now, looking back, I can see all the small indicators that forecast and foretold the events that would eventually unravel before my eyes like a thread on the hem of a sweater. Like any good steward, at first you attempt to tuck, reattach or weave the loose strand back into the rest. At times, you might pretend that there isn't any damage. Or you alter your habits to adapt for the unexpected deterioration of something you love. However, as time progresses the string becomes too tempting to not pull. It seems that leaving it dangle is more dangerous than simply destroying it all yourself. Then I wonder, "did I do that to my life?" Or worse yet, "Is all this my fault?"
From 2014 to 2017 it was forecast mostly cloudy as I walked through my professional and personal life in a fog of depression, sleep deprivation, and anxiety. Don't get me wrong, I was trailblazing, working harder than I had ever worked before. Yet, a haze settled in clouding my life with a depressive fog. First as Rich's mom, Sandra, began to struggle with her health along with the symptoms of stroke related dementia. Rich, an only child and new parent, worked to balance his responsibilities between caring for his mother, his family and sick child. These are choices no person should have to make. Simulataneouly, I watched as my maternal grandmother the pious, particular woman I once knew was replaced by a child in an old woman's shell. Finally, as my own mother battled for survival overcoming septicemia and three successive strokes in 48 hours.
These strokes, along with Charlie's ongoing genetic testing, left me hollow, riddled with a huge sense of grief. I grieved over the changes to my family. I grieved the changes that were happening to the women I loved. I grieved over the lost days and months as a new family. I grieved over my professional suicide, my lost career. The grief was all encompassing. It blinded me, blurring my ability to make decisions. I had never seen the impacts of stroke related dementia up close and personal. Within a matter of three years, all three of the most important female figures in my life would be impacted by a stroke. My grandmother, my mother-in-law and my mother would all have their lives irrevocably changed in a matter of seconds, in turn changing all of our lives. So I grieved for them, as only a mother could.
Reality snaps like a rubber band when the tension is too great bringing us to the present, things are so different and yet hauntingly familiar. Its while Sophia rides her bike to the community center, I chasing her through the cemetery, I realize my grief fuels me. It smacks me in the face as I race past these headstones, those of children younger than my Charlie. I succumb to the grief. Tears streaming down my face I acknowledge the responsibility I have. I grieve for Sandy and the stillborn baby she lost, Tracey. I think of the story she shared with me, the grief she shared with me some 40 years later while sitting at her kitchen table. I grieve over "normal" doctors visits and missed developmental milestones. I grieve for the children that don't make developmental milestones when we do. I grieve over the fictitious moments I think we were supposed to have experienced. The ones that were robbed from us because we were hospitalized instead. It is from this grief I must find hope. It is in the grief I must find the inspiration, the energy to continue to grind on, to hang on to hope and so I become enraged.
It is called a variant of unknown significance, or VUS, in medical terms. The National Cancer Institute's Dictionary of Genetic Terms defines it as "a variation in a genetic sequence for which the association with disease risk is unclear. Also call unclassified variant, variant of uncertain significance, and VUS." It is the crappiest, vaguest and least helpful diagnosis possible. It is sophisticated medical speak for "we don't know nor do fund research to study that." It, along with hypotonia, cause global developmental delays that impact every aspect of Charlie's life. We don't know what that means for his future, or our future.
Blindly we continue with our intangible therapy plans, the path we grind upon, burning through insurance deductibles and out of pocket benefits. We grind through specialists, referrals, therapists and equipment. It is while grinding through therapy sessions I find my ray of hope, Katie. Our therapist during a recent round of UEU Intensive therapy sessions. During these sessions Charlie was suspended from a metal support structure in a harness using bungee cords. This allowed Katie and her tech, Abby, to free up their hands to manipulate difficult to maneuver body parts. It was during our intensive Charlie really began to discover his legs and love of jumping. It was some of the first times we saw him take ownership of his body.
After eight weeks of focused practice on reciprocal crawling we completed our intensive with all intensions of taking the summer off. But there are no summer breaks when you are disabled and therapy breaks can result in set backs. So within a matter of weeks we were back in the clinic. Using a borrowed gait trainer to begin collecting data to prove the need for a new piece of durable medical equipment.
Katie was like a shining light giving us hope. While we have a gait trainer on loan, Charlie is growing fast because of all the therapy. We need new equipment. While we have two insurances for Charlie, it isn't enough to get the expensive specialized equipment brought in. So we are back to applying for grants in hopes we can obtain the medically necessary equipment that insurance won't preauthorize. But what is crazy about this whole situation is that all I can think about is that for the first time ever, someone, Katie, helped me complete a grant application and navigate the nebulous trenches of the bureaucracy.
See that is what happens. Just when I, or mom, think we have reached our whits end, these therapists pull us from the trenches. They step up, helping us when we are accustomed to having to do it all for ourselves. So we go on, hanging on to hope, allowing our cup to run over with joy at the approval of six more physical therapies for mom. Her therapist, a valiant warrior against the insurance beast. Mom filled with dreams of returning to some form of limited mobility. A future that is on the horizon nearly two years to the day after the horrific 48 hour period that almost took her from us.
We know we are lucky we have our Charlie and my mom here with us. So many things could have been different. Two people, years apart in age, yet both plagued by septicemia and mobility impairments. Two people defying the odds around every corner. Charlie and mom are on a shared journey toward mobility. They hold the key to their own destinies putting grief aside to grind on through therapies, all of us hanging on to hope and sometimes discovering shining rays of light on our journey helping to motivate us along the way.
From 2014 to 2017 it was forecast mostly cloudy as I walked through my professional and personal life in a fog of depression, sleep deprivation, and anxiety. Don't get me wrong, I was trailblazing, working harder than I had ever worked before. Yet, a haze settled in clouding my life with a depressive fog. First as Rich's mom, Sandra, began to struggle with her health along with the symptoms of stroke related dementia. Rich, an only child and new parent, worked to balance his responsibilities between caring for his mother, his family and sick child. These are choices no person should have to make. Simulataneouly, I watched as my maternal grandmother the pious, particular woman I once knew was replaced by a child in an old woman's shell. Finally, as my own mother battled for survival overcoming septicemia and three successive strokes in 48 hours.
These strokes, along with Charlie's ongoing genetic testing, left me hollow, riddled with a huge sense of grief. I grieved over the changes to my family. I grieved the changes that were happening to the women I loved. I grieved over the lost days and months as a new family. I grieved over my professional suicide, my lost career. The grief was all encompassing. It blinded me, blurring my ability to make decisions. I had never seen the impacts of stroke related dementia up close and personal. Within a matter of three years, all three of the most important female figures in my life would be impacted by a stroke. My grandmother, my mother-in-law and my mother would all have their lives irrevocably changed in a matter of seconds, in turn changing all of our lives. So I grieved for them, as only a mother could.
Reality snaps like a rubber band when the tension is too great bringing us to the present, things are so different and yet hauntingly familiar. Its while Sophia rides her bike to the community center, I chasing her through the cemetery, I realize my grief fuels me. It smacks me in the face as I race past these headstones, those of children younger than my Charlie. I succumb to the grief. Tears streaming down my face I acknowledge the responsibility I have. I grieve for Sandy and the stillborn baby she lost, Tracey. I think of the story she shared with me, the grief she shared with me some 40 years later while sitting at her kitchen table. I grieve over "normal" doctors visits and missed developmental milestones. I grieve for the children that don't make developmental milestones when we do. I grieve over the fictitious moments I think we were supposed to have experienced. The ones that were robbed from us because we were hospitalized instead. It is from this grief I must find hope. It is in the grief I must find the inspiration, the energy to continue to grind on, to hang on to hope and so I become enraged.
It is called a variant of unknown significance, or VUS, in medical terms. The National Cancer Institute's Dictionary of Genetic Terms defines it as "a variation in a genetic sequence for which the association with disease risk is unclear. Also call unclassified variant, variant of uncertain significance, and VUS." It is the crappiest, vaguest and least helpful diagnosis possible. It is sophisticated medical speak for "we don't know nor do fund research to study that." It, along with hypotonia, cause global developmental delays that impact every aspect of Charlie's life. We don't know what that means for his future, or our future.
Blindly we continue with our intangible therapy plans, the path we grind upon, burning through insurance deductibles and out of pocket benefits. We grind through specialists, referrals, therapists and equipment. It is while grinding through therapy sessions I find my ray of hope, Katie. Our therapist during a recent round of UEU Intensive therapy sessions. During these sessions Charlie was suspended from a metal support structure in a harness using bungee cords. This allowed Katie and her tech, Abby, to free up their hands to manipulate difficult to maneuver body parts. It was during our intensive Charlie really began to discover his legs and love of jumping. It was some of the first times we saw him take ownership of his body. After eight weeks of focused practice on reciprocal crawling we completed our intensive with all intensions of taking the summer off. But there are no summer breaks when you are disabled and therapy breaks can result in set backs. So within a matter of weeks we were back in the clinic. Using a borrowed gait trainer to begin collecting data to prove the need for a new piece of durable medical equipment.
See that is what happens. Just when I, or mom, think we have reached our whits end, these therapists pull us from the trenches. They step up, helping us when we are accustomed to having to do it all for ourselves. So we go on, hanging on to hope, allowing our cup to run over with joy at the approval of six more physical therapies for mom. Her therapist, a valiant warrior against the insurance beast. Mom filled with dreams of returning to some form of limited mobility. A future that is on the horizon nearly two years to the day after the horrific 48 hour period that almost took her from us.
We know we are lucky we have our Charlie and my mom here with us. So many things could have been different. Two people, years apart in age, yet both plagued by septicemia and mobility impairments. Two people defying the odds around every corner. Charlie and mom are on a shared journey toward mobility. They hold the key to their own destinies putting grief aside to grind on through therapies, all of us hanging on to hope and sometimes discovering shining rays of light on our journey helping to motivate us along the way.
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