Rhythm of the Spirit

This is a story about a special child. Let me rephrase that, as every child is a special creation of God. This child is a different kind of special, as he was born with a unique set of challenges that most people do not even think about. This special set of challenges is so unique that he does not even quite fit in with typical “special needs” children, never mind the “typical” children without disabilities. This child was given the label of “severely developmentally delayed.” Although this label may be accurate, it is a general term for a condition that is influenced by many other neurological impairments. This list includes cortical visual impairment, epilepsy, motor planning delay, sensory integration or processing disorder, and speech delay. Some conditions that appeared evident in the first few months of life, like cerebral palsy and total blindness, turned out not to be the case. Other conditions, like the epilepsy and sensory issues, appeared later in both infancy and in toddler hood. No one doctor has been able to diagnose a permanent medical or neurological condition, aside from the epilepsy as this was manifested in behavior that we could witness. However, the one thing everyone may agree upon is the uniqueness of this individual child. This child’s name is Giovanni. Although we do not know what Giovanni sees through his big brown eyes, we do know that what he “sees” or perceives is from a point of view that is difficult to understand unless we really try to imagine ourselves living his life. My family and I searched in vain for stories of children like Giovanni. I have been searching for stories of hope, encouragement and inspiration while getting a little education in the process. I know I am only one of many parents who face daily struggles in caring for a child with special needs. In addition to those struggles are the struggles of dealing with relationships and life in general. Raising a child with special needs is a challenge even under the best of circumstances with two willing and self-sacrificing parents. These challenges can sometimes become overwhelming when one parent decides to reject his responsibilities and walk away from the situation. Since Giovanni cannot yet speak to share his point of view, I hope that in sharing my experiences with others, I can provide encouragement to parents going through the feelings of shock, denial, pain, guilt, anger, desperation, and loneliness. I hope I can show that even under the most daunting of circumstances— a family falling apart in the wake of the birth of a special needs child—that there is an eventual acceptance of the situation, a restructuring of life, and hope for the future. I would like to share my point of view as a single parent of a disabled child, one who has a variety of labels that can sometimes be overwhelming. With the love and support of friends and family, I know that I am not alone in the daily struggle of doing the best that I can for my child. Being the best advocate for him that I can be is important for him to reach his full potential. In learning about life, we learn about ourselves. As Giovanni lives his life and continues to overcome his physical and neurological challenges—all with a smile on his face—perhaps we can learn something about life, also. Many people have said that life is a journey, and Giovanni’s journey, while leading us to question our own life’s purpose, is an inspirational one.