Joe appeared perfectly normal at birth…or so the Apgar scores indicated. But within two hours of his birth, Joe is whisked away to the newborn intensive care unit in grave danger. He is thoroughly tested and found to have severe cerebral palsy. The specialist gives Nia and Alex, Joe’s parents, little if any encouragement. The experts all seem to agree that Joe will be blind and unable to speak, move or even recognize his mom and dad.
Nia and Alex are devastated but unwilling to accept the life sentence the doctors have given their infant son. Their lives are filled with a seemingly endless round of visits to specialists, therapists and healers. Nia is even more adamant than Alex; she simply refuses to accept the prognosis so often repeated to her. The doctors suggest she is in denial, but there is absolutely no denying that Nia will do whatever she possibly can to see that Joe has a life worth living.
Light therapy, oxygen therapy, patterning, tapping, music therapy, sensory therapy, Reiki, crystals, Chinese herbs --- Nia tries them all. In fact, it seems there is nothing she won’t try. The baby book, purchased in happier, more hopeful times, remains empty the first year. There are no milestones to record.
Nia reduces Joe’s drugs for epilepsy, against the advice and orders of the neurologist. Later, when the neurologist mentions that there are no traces of epilepsy on Joe’s latest examinations, he still won't admit there is no need for those drugs at all.
A milestone, so long hoped for, finally occurs. Movement! Joe reaches out, actually moving the muscles in his left arm for the first time. Nia and Alex, however, are drifting apart. Though their goals are similar --- giving Joe as normal a life as possible --- their lives are going in opposite directions. Alex has a job to occupy much of his time, and Nia is so focused on Joe that there is practically no time or energy for anything else.
One day, when Joe is two years old, he raises his arms --- both stiffly and not at the same time, but he does reach them around Nia’s neck to hug her. This is major progress. Not only is he beginning to move his limbs, he can now express emotion. Joe learns to tap --- once for yes, twice for no. At last, some real communication. Alex feels that Nia has no time for him, and he moves out, but continues to visit three times a day to assist with Joe’s patterning exercises and to play with him.
Joe’s progress is agonizingly slow, but Nia has wonderful support from family and friends. And now she has a helper --- a respite worker named Sian, who brings joy and hope each time she visits.
Shortly after his third birthday Joe rolls over for the first time. With every painstakingly slow bit of progress that he makes, Nia is more hopeful and determined than ever that her son will continue to improve. Another eye specialist diagnoses cataracts, so Joe has surgery and is fitted with glasses. Now there is real hope for his sight. His first word is “more,” and he is happy when he hears music. The little victories and milestones begin to accumulate; Nia’s hopes are not in vain.
BLUE SKY JULY is a testament to the unconditional love, hopes and dreams that every mother has for her child. Nia has courage, patience, determination and the ability to continue moving forward even when the experts are telling her it is hopeless. Beautifully written, the book is by turns heartbreaking and hopeful. It is the amazing true story of a young mother who will do anything within her ability to give her son the full and happy life that is every child’s birthright.
Reviewed by Carole Turner on July 7, 2009
Blue Sky July: A Mother’s Story of Hope And Healing