—Spina Bifida (SB) … a neural tube birth defect affecting approximately one in every 2,000 babies born in the United States was unknown to me until the pregnancy of my third son, Matthew. At birth, my son’s spinal cord development was incomplete and significant damage to the nerves and spinal cord had occurred. Although the spinal opening was surgically closed immediately following his birth, the nerve damage was permanent and would result in paralysis of Matthew’s lower limbs.
The doctors gave Matthew a poor prognosis since he was born with the severest form of SB, myelomeningocele, in which the cord and its protective covering (the meninges) protrude from an opening in the spine. In addition, he had hydrocephalus, (excessive accumulation of cerebrospinal fluid in the brain and a shunt was surgically implanted in his head to prevent seizures). Club feet were also present and several surgeries to correct his feet awaited him. Finally, SB would cause bowel and bladder complications and the risk of urinary tract infections and incontinence were to be expected. Since there is no cure for SP, Matthew would need assistive devices such as braces, a walker and a wheelchair for mobility. Ongoing therapy, medical care, and doctor’s visits would be his way of life. Even though this huge challenge was set before us, my husband and I decided to provide Matthew every possible opportunity to reach his maximum potential.
However, as he began to grow, we wondered…What would Matthew’s day to day life be like? How would our family deal with all of the necessary adjustments? Would Matthew ever be able to experience a normal life? Would others be able to see past his physical limitations and view him as an individual with the same desires and dreams of any other child? All of these questions, and more, raced through our minds. Undoubtedly, I had to resign from my much loved teaching profession, after almost 18 years with Miami- Dade County Public Schools, and become Matthew’s full time caregiver. As I began to explore the world through his limitations, I realized that without the use of his legs, simple, everyday activities were difficult for Matthew to accomplish independently. For one, taking him to the park became very demanding.
Matthew & Mercy Palacios
The first time I took him to a playground was at the age of two. To my surprise, nearby parks were not equipped with adaptive equipment or playground areas suitable for children with disabilities. Matthew is now five years old and desires to play just like any typical child. Even though the playgrounds are unequipped for his needs, I refuse to inhibit him from enjoying this common childhood pastime. Matthew must then be carried onto the swings, slides, and totally depends on me to enjoy the playground. Since he is a big five year old, at times, I must put him down so that he can crawl from one area to another. The grass, turf and or sand also make it difficult for him to push his wheelchair or walker. Other children observe his difficulties and try to be helpful in giving him the space he needs to move about, but other times, he just gets in their way. Matthew loves going to the park and being with other children, however, because of the many inconveniences, many days we end up not going or going at times when other children are not present.