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.

Natural Inclination

Although Gabriel does not have most of his cerebral cortex of the frontal lobes and relies on the basic cerebellum and brain stem to live, he certainly shows particular likes and dislikes that, to me at least, comprise a very interesting little personality. Current medical science might dismiss these preferences as chance due to the severity of the malformation, but I believe Gabriel does indeed have music and books that he prefers over others. For instance, if I play Steve Vai's "Ballerina 12/24" off of his Passion and Warfare album, Gabriel's eyes become huge and he instantly quiets to listen. If I play the song immediately again, he will vocalize with Vai's guitar, as if trying to communicate. This phenomena only happens with "Ballerina 12/24," but Gabriel also shows a natural inclination for Miles Davis specifically. During several sessions of fussiness, I bounce on a big violet exercise ball and play all sorts of music. Recently, I put on Kind of Blue and as soon as Davis' began his first solo in "So What" Gabriel instantly tuned in, eyes wide and body relaxed. Every time Miles solos end, Gabriel tensed up slightly until the master of all coolness played again. The little dude also in the past has enjoyed Stevei Ray Vaughan's rendition of "Little Wing" and most of Robin Trower. As far as literature is concerned, Gabriel's attention only seems to be caught by certain patterns of sounds. Normal childrens' books that are simple and made for typical baby interaction do not interest him much. However, as soon as there is some carefully crafted diction and a story, Gabriel will actually pay attention and occasionally become mesmerized. He particularly seems fond of The Lion, The Witch and The Wardrobe by C.S. Lewis, which he is partially named after. These little natural inclinations give me hope that through the confusion of malformation, Gabriel still is his little own self that enjoys the input he can experience.

Mourning the Loss of Limitlessness

Babies consist of dynamic and inherent possibilities. Even as childless pedestrians, when we see a bright-eyed and curious tiny child absorbing the world with undeniable awe, we wonder at the person that little one will become. Will the curly-haired Hispanic eight month old with dark chocolate brown eyes develop a love for metallurgy? When the two-year-old royal terror of a red-head grows up, will he become a soft-spoken ecological counselor? Even in elementary aged children, the casual observer can get a contact high, a rush from the joy of possibility. That slightly preppy, vaguely nerdy blond boy could later become not the engineer his community might expect of him, but instead the world's most accomplished big wave surfer, complete with dreadlocks and an amazing knowledge of ocean currents.
When Matthew and I held Gabriel in the hospital and contemplated becoming parents, the subject we returned over and over again to with delight was all the potential this little creature we created had. We wondered whether Gabriel would at some point demand that we call him by his middle name, Aslan, while recreating himself in high school. We imagined a child that might love and excel at foreign languages, something Matt and I both struggle with. Would Gabriel develop a great love for his Grandpa Taylor's favorite band, The Beach Boys? Or would he instead adore Andre Rieu, like his Oma? Would he be speak like his father, with bold enthusiasm and impulse, or would he instead be the quiet observer? What would the PERFECT birthday present be for his seventh birthday? A mini Trek bike, complete with training wheels? A brown and white ferret? A completely functional toy dumptruck? A trip to Mt. Hood? We were so excited to get to KNOW this person, to watch him as he forged his own path through life.
When we noticed that Gabriel was not tracking movement with his eyes even at two months we set about evaluating his eyes. This lead us through testing and specialists, ultimately to putting poor little Gabriel into a drug-induced state for an MRI. After recieving the initial MRI report from Dr. Vilhauer (who was also my pediatrician), she made the severity of the situation clear: Gabriel would certainly be severely handicapped. Now, I consider myself a realist, although those closest to me consider me a pessimist, and even with pain these harsh realities brough I still had some hope to get to know the person my son is. After an intensely upsetting EEG, we were ready to hear the full extent of our child's condition. When we received Gabriel's diagnosis from his wonderful Neurologist Dr. Metrick, all the few and fragile hopes that barely enticed me crashed to nothing. Not only is Gabriel's life span is expected to be extremely limited (the doctor mentioned his survival reaching perhaps up to four years) but he cannot even tell my voice from the annoying anorexic fake blonde newscaster's shrill banter on television. I love my "BooBah" so deeply and completely and yet now all I find myself doing when I do not have direct care of him is fearing his impending death and aching in the knowledge that he is and forever will be ignorant of my intense adoration and support for him.