10/01/2015

Seven Years Gone

Many of you thanked me for sharing my thoughts and feelings regarding Gabriel's initial diagnosis and the small indicators of the little person he was despite his limitations that made daily life bearable all those years ago. As the demands in caring for Gabriel increased and I returned to work at Dance Togs with a swiftly crumbling spine, I found I had no positive, beautiful and truthful words to share with you all on any matter. So I wrote nothing public, believing it would protect those I loved from the torment I lived in. Now I realize my choice to become and remain silent may have caused more harm than good. I apologize: Everyone who read those first few posts are family and the distance I imposed was in actuality yours to choose as you needed to. I took that choice away when it was not mine to remove. I am blessed to know many, if not all of you, forgive me for this.
Nerve pain of the sciatic variety once again entered my daily life along with an ever growing number of medical appointments, procedures and surgeries to save, stabilize and then support Gabriel's life. Returning to my neurosurgeon in desperation, I very swiftly received an emergency microdiscectomy on my L3 disc, as well as the "crumbling" bones of the spine around it after developing insane drop foot. The procedure facilitated Gabriel being able to live at home and be in immediate family direct care for at least an additional year and a half, a massive blessing. We struggled daily to feed him orally all the calories he needed to be healthy as possible, no daunting task for a child of his level of special needs. Many seasons ran together like ink pen bleeding through the pages of days: diaper changes, feeds, walks, naps, work, repeat. My lifelong tendency toward insomnia became ruthless and the smallest stressors would send me into violent anxiety attacks. I became a person too filled with pain and fear to be much fun to be around and resorted to self imposed seclusion with the exception of work. I shambled through my days.
I began to see a wonderful psychologist who had previously studied theology and shared many concepts of spiritual truth with the beliefs I grew up believing. The helpless, hopeless heaviness that invaded my every waking moment, my every restless dream troubled me deeply, took my mind down dark paths I knew existed but never thought I would be lead to walk down. My psychologist worked with me, reminding me that morning for all the lost possibilities for my child and our family was both heart-rending as well as necessary, that my lack of delusion concerning the severity of our situation was a painful strength and supported my brand of proactive diagnosis and care, first for Gabriel, then Matthew and myself. As pain and powerlessness over my situation progressed, he introduced me to "The Serenity Prayer" as a meditative aid in alignment with appropriate medications and diagnoses as the situation progressed.
 Eventually, my neurosurgeon told me that my spine had degenerated to such an extent that I would require a three level spinal fusion. As we began to prepare for the surgery, we began interfacing with the Providence Center for Medically Fragile Children in east Portland. Early on, we had been told that Gabriel and the family would benefit from respite stays on at least a yearly basis. I was vehemently against this concept: Giving up care of my child to strangers who also had to care for other extremely fragile children was a concept I rejected outright until the nerve pain and slow paralysis of my legs forced me to genuinely look into the program. I had been told lifting anything thirty pounds or heavier would no longer be possible, and the then 3 year old Gabriel was reaching that point, slowly but surely. We toured a unit, introduced Gabriel and our family to the staff, worked with social workers, charge nurses and administrators. On a day immediately before my first spinal fusion surgery, I stayed up all night labeling and packing Gabriel's clothing, favorite toys, preferred bottles and endless lists and letters, sobbing the whole time. We dropped him off the next day and when leaving, found myself crumpled into myself, deep in an emotional breakdown, worrying Gabriel would feel abandoned, that he would miss us, that he would be mistreated. Just recalling that moment, I find myself crying. I have experienced no greater pain than handing my child over to someone else's care.
My fears were not based in reality, but only because the CMFC is one of the best places in the country for medically fragile children, if not the defacto best. I learned this as I visited after the surgery more and more frequently while researching aggressively online. Concerns both us family members and his nurses developed over his stay, such as Gabriel's difficulty maintaining a healthy weight and controlling seizures were addressed with the CMFC at light speed in comparison to what I could make happen with Gabriel at home. Appointments were expedited, surgeries slipped into surgeons' schedules with express swiftness, common colds were addressed and medicated within hours of his first symptoms, medicinal intervention for nasty seizures were immediately accessible without scrambling to get into the neurologist to get a refill of any given prescription. After about a month of witnessing what the CMFC had to offer Gabriel and noting his overall improved health, a coalition of staff met with us as a family. We were told that our son was a prime candidate to become a full time inpatient resident at the CMFC. Different elements of staff gently told us that the Center for Medically Fragile Children was built specifically for children like Gabriel, that they as a group of individuals whose hearts had been called to work with these vulnerable children felt the best care for Gabe would come from a combination of the direct, onsite medical and social programs they had to offer and the consistent presence and emotional support from us as family. We maintained all legal and medical rights to chose the best for our son but allowed a much larger community into our lives to help us be the best parents we could be for him. After a certain point, it just felt selfish and not in Gabriel's best interest to insist that we care for him on our own at home.
And so life continued on. I found many novel ways to punish myself for, "not being enough," to be my child's primary care giver. The pure hate I felt for myself was not unfamiliar as I had experienced a version of it as a teenager learning I could never punish my body into that of a prima ballerina, but this hate was even wilder and extreme, deeper to root of my soul. I tasted blood in the air, which pressed me, face to the floor, in overwhelming pressure and then snapped, sending me on manic sprees, wandering through parkland at night, pouring out verse after verse of violent, volatile poetry. Eventually, the nerve pain and paralysis returned, turning crazily vacillating moods into full bi-polar disorder. I was told that I would never get a good footing in a healthy mental state without addressing my alarmingly debilitating spinal degeneration. The night before my second back fusion, both my quads would no longer flex, I could not feel or move the top of my foot or my toes. Every large nerve bundle in my legs from my spine screamed like a siren. I gave in, gave up and surrendered into the oblivion that is anesthetics. I awoke able to move every inch of flesh I lost again, weak, but more whole than I had felt in a long time.
Through it all, Matthew was there, working and returning home to cope with me in my sorrow and instability. He never left my side, he never blamed me for the expenses he took on to cover both Gabriel's health insurance and mine. He put us first every time, becoming a protector and provider that most people only dream of being blessed with. On his insistence, I took an extended and then permanent leave from work, as he worried the job required activities in stocking and fitting shoes that were actively bad for my spine. We agreed that I was gaining physical and mental stability and he worked hard to provide me with time to recover myself as the caring but cynical, fun yet hardworking woman he fell in love with. Slowly, the veil of pain and fear lifted and I could make out some sort of future, not at all what I had once dreamed of, but a time and place where Matthew and I could be the family we wanted to be, to walk through this strange, beautiful life together, spending our free time trying to make Gabriel smile. And so we planned to marry. Six weeks after Gabriel's seventh birthday we did just that. It was perfect. It was us. And Gabriel smiled when we were announced as Mrs. and Mr. Taylor.
Now we are at the end of this tale, reaching present time. Will I continue to write posts on this blog? Perhaps. The life I lead and the life that leads me is as uncertain as any life is. And yet, like Gabriel, it is tenacious, and beautiful in its questionable strength. I am grateful and that is enough for now.

No comments:

Post a Comment