Chapter 1 The Need for Understanding
Life is often unpredictable in the most surprising ways. So much is expected of us on a path that is difficult to navigate at times. Many are the tools needed to progress from one day to the next – a sense of humor, a dose of hope, a can-do-overcome-anything attitude, along with the ability to accept challenges ... hopefully, with grace. Add to these, the strength to keep fighting against forces that seem intent on crippling and breaking our spirits.
Above all else is the supreme gift of love. When skies darken and answers are scarce, it is love that carries us over the rough spots. It is the most essential thing we can give of ourselves. It is where life begins and hope springs eternal, to borrow a phrase.
We make plans. We aspire to achieve our dreams. Yet, regardless of our efforts or intentions, life is a force around which we bend and concede. If we accept that it occasionally knocks us off course, we must be open to the directional shift to which we are subjected.
Parenthood is no different. We know better, but from the moment a child is anticipated, we can't help but dream. Who will that child be? What will he achieve? So many dreams are channeled from parent to child. Every dreamt-of child conjures up images of soft, nuzzling babies smelling sweetly of powder and the promise of brilliance. This bright joy of anticipation and the possibilities inherent in the essence of each infant is the reality most will know.
For others, dreams tumble and fall and must be reconfigured. Expectations become clouded, and endless possibilities are replaced by concessions. It is important for those who know the sting of such disappointments to recognize that there is fellowship and hope in the knowledge that we are not alone. We are neither the first nor the last to navigate this unwanted and unplanned for journey through the universe of alternate parenthood. Where terms like "normal" and "typical" are scarce in the description and assessment of our children and where dreams die hard, hope becomes a lifeline to which we cling – the place where our life with Agenesis of the Corpus Callosum begins.
IN THE BEGINNING
Life's happiest moments seem to pass most quickly – the walk down the aisle to where my groom waited – the slow motion, picture perfect snapshot of Rich and I facing the priest who pronounced us husband and wife – our first step toward a future together.
Two-and-a-half years later, we welcomed the arrival of our first son, Gregory. His problematic delivery – two weeks overdue by emergency cesarean section – did nothing to diminish my wonder at gazing into his face for the first time. Through an anesthetic haze, I beheld his round cheeks and wide eyes and fell deeply in love. His quiet gaze in those first precious moments changed my life in the most wonderful way.
Our next foray into parenthood was a bit more challenging. Months of disappointment and a dose of the fertility drug Clomid led to the birth of our second son, Jeffrey. In retrospect, Jeff's arrival – 10½ weeks before his due date – was one of life's great lessons. We learned so much from our preemie's host of complications and setbacks. Misdiagnosed preeclampsia led to his early arrival, and while I was powerless to change what had happened, I made a bargain with God that if we got to keep him, I would put out of my heart all the anger I felt toward the doctors I believed had nearly killed the both of us.
Jeff's fighting spirit taught us so much. I know I fought harder for him than anything in my life. I often said that we earned Jeff. I sat by his incubator day after day like a sentinel, bal