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.