I always considered myself to be quite fortunate. At 35 years of age I was on the faculty at a major medical school and on the fast track for tenure and promotion. My research on brain function was becoming nationally recognized and I had been awarded prestigious grants from the National Institutes of Health (NIH). I married a beautiful woman who was the love of my life. The only thing missing was a family. After only 20 weeks of pregnancy, my wife started leaking amniotic fluid. Despite desperate attempts to prolong the pregnancy, my daughter Rachel was born at only 23 weeks gestation and weighed only 18 ounces. At 11 inches long, she could have fit in the palm of my hand. Her eyes were fused shut and the doctors placed white gauze over them to protect her from the bilirubin lights. There were numerous wires and tubing protruding from her tiny body. Rachel's paper thin skin was pierced by needles and her arms moved spasmodically back and forth as if she were writhing in agony. In her room was the rhythmic hum of a ventilator providing oxygen to the one lung that had not collapsed. My daughter's lips would occasionally part as if she wanted to scream but was unable. She had sepsis and was burning up with fever.
For nine months, our tiny daughter fought for her life in the neonatal intensive care unit (NICU). Her weight fell to 14 ounces and she had multiple surgeries. At one point, Rachel was given a 1 in 10,000 chance of survival and after a third of her small intestine was removed, the surgeon and other physicians thought that the situation was hopeless. Our family gathered to say their last goodbyes.
Despite all the prognostications, my daughter, the tiny warrior, miraculously survived. The many hours at her bedside was perhaps more instructive than all of the years of training that I had received as a clinical psychologist and neuropsychology subspecialist. I found that the illness of a child is the great equalizer.
Ten years have passed since Rachel came home. My daughter is doing remarkably well despite challenges with mild cerebral palsy, hearing and vision. She is the most happy and loveable child imaginable with a tremendous sense of humor. She is currently in the fifth grade. My wife and I subsequently went to China to adopt a little sister Amy, who is now six years of age. We now do what many other families with disabled children do every day, love our child, try to maximize her potential and to realize that she is a special gift entrusted to our care. Looking beyond our daughter’s disabilities and being able to see the beautiful human being underneath has required that we relinquish our insistence on perfection and that life should be easy or fair. Both Rachel and Amy have taught us wonderful lessons about the power of love and acceptance.
One of the most important things that I have learned based on Rachel’s heroic struggles is that we often never appreciate a blessing until the moment that it is lost. We have today to extend both love, appreciation and acceptance to others and to make our lives matter. There is no guarantee that we will ever get another chance tomorrow. Both of my daughters are constant reminders that we are all connected to one another and our common humanity transcends physical limitations, the amount of melatonin in our skins or our facial features. We must also accept that life is not fair and that bitterness about the past is the corrosive that consumes the container which holds it.
Although I remain a very busy professional, I take more time to disengage from the fast-paced world and to better connect to those around me. I take more care to not only hear, but to really listen. Most importantly, in spite of the distractions of a fast-paced world, I am more appreciative of the many gifts around us, blessings that are far too easy to take for granted. When I look at Rachel, I am reminded of the fact that true heroes and heroines sometimes come in the tiniest packages.
For more, see our family's blog at
http://loveofrachel.enalanblogs.com/Best, David Loewenstein
Professor of Psychiatry and Behavioral Sciences at the Miller School of Medicine
Dr. Loewenstein is the author of a book entitled "For The Love Of Rachel: A Fathers Story"
http://www.enalan.com/
