‘I completely admire my mother for raising a child with cerebral palsy at home’
– Natalia Vodianova.
As I was walking towards the departmental store, suddenly I heard my name being called out. On turning back I saw a lady, but for a minute could not recognize her. Very soon it struck me that she was a good friend of mine in my school days. Yes, Chaaya reappeared in my life after a long gap of 25 years. Since both of us were running around with our morning chores that day, after exchanging some pleasantries, we fixed up a date for a long chat the following week.
With memories of our carefree school days where we gossiped, shared secrets, poured out our problems, giggled over silly jokes, here we were looking forward to meeting with each other in a restaurant in Mumbai. Circumstances changed and in the pre-social-networking era we gradually drifted apart and finally lost contact with one another. The day of our meeting finally dawned and all excited since morning I went out to meet my friend in the evening. There she was with a beaming smile and we rushed into each other’s arms. In an instant, time got reversed, and it was with a wonderful feeling of being high on memories that we dug into our memory pool and exchanged ‘what we did’ stories.
It was while we were catching up on the years between then and now, updating each other on our lives and families that Chaaya mentioned about her 15-year-old daughter, Dolly, who had cerebral palsy ( CP), following complications at birth.
“Is this hopeless?” Chaaya asked upon learning about Dolly’s diagnosis. Chaaya knew there was a possibility that Dolly could have problems—she was born prematurely—but she never imagined the difficulties that lay ahead. Though Dolly seemed fine at first, several months later Chaaya began to notice that sometimes Dolly seemed very floppy, almost like a rag doll. Other times, she seemed to stiffen. “I knew she wasn’t hitting the same growth and motor milestones like my older daughter,” said Chaaya.
Several doctors’ appointments later on, she finally received a diagnosis of cerebral palsy. “I remember those first days, weeks, months and years after receiving the diagnosis and how I felt. So you can imagine how the last years have been — I am on 24/7 support,” said Chaaya with a gentle smile. “I haven’t had much time for socializing. This is the first time in a long period that I have set aside some time to catch up with friends and relatives. My husband, in-laws, mother and sister are taking care of my daughter, while I am taking this refreshing break. The journey of CP is a lesson in purposive love, while all along accepting and managing your child’s present conditions,” concluded she.
Soon after Chaaya left, I kept mulling over this problem and it compelled me to do some research on this subject of cerebral palsy, a neurological disorder that appears in infancy or early childhood owing to damage to the developing brain, but does not worsen over time. It permanently affects body movement and muscle coordination, and is accompanied by some degree of mental retardation. Current research suggests the majority of CP cases result from either abnormal brain development or brain injury prior to birth or during labour and delivery. Accidents, abuse, medical malpractice, negligence, infections, and injury are some known risk factors that may lead to CP.
In severe cases, symptoms are usually immediate. In mild cases, however, it may take months or even years before you will be able to notice symptoms. However, the symptoms are different from the signs, and a physician usually diagnoses the disorder based upon both signs and symptoms. A sign of cerebral palsy can be detecting malformations in the brain, while a symptom can be how a child feels, moves, and acts. Regardless, if the symptoms are not apparent immediately, they almost always surface by 3-5 years of age. Majority of children with CP are born with it.
The child’s diagnosis of cerebral palsy is a lifelong journey of recurrent adversity eliciting a series of individualized responses. These responses include the timing of the diagnosis; and the initial reaction of anger; denial; guilt; blame; and frustration. The reality of the diagnosis elicits pain, sorrow and loss of dreams whereas adaptation encompasses acceptance and empowerment. Mothers display a spirit of advocacy for their child and demonstrate personal growth through the experience. Awareness of society’s ambivalence, adds to the stress the families feel within themselves.
The parent of a child with cerebral palsy is usually the first to notice these signs and to realize that the child is not developing normally. The signs of cerebral palsy vary widely and can range from mild to severe. Some people with the condition are intellectually impaired, but many have no mental deficits at all. Cerebral palsy causes reflex movements that a person is unable to control and, muscle tightness that may affect parts or all of the body. Intellectual disability, seizures, and vision and hearing problems can occur.
When we pause to consider the fact that this is merely one of the many debilitating disorders of this kind that can affect infants and children and continue into adulthood, it drives home the fact that there are many mothers and caregivers who play this 24/7 support role, with limited or no time for themselves or their careers or interests. The mothering experience necessitates dealing with many types of burden including: always something to hurdle, physically demanding routine, complex competencies, chronic worry, inadequate respite time and financial issues. Support from others is appreciated but it is not always received. Typical family life is disrupted resulting in altered relationships among family members including other children, husband and parents. But the fact remains that mothers shoulder the bulk of the responsibility, with no expectations or boundaries, driven by pure, selfless love. Globally, over 17 million people have cerebral palsy and so it follows that we have over 17 million mothers and caregivers on service round the clock.
It is important to understand cerebral palsy symptoms as soon as possible, as the earlier the disorder is diagnosed, the better chances you will have in decreasing the severity of disabilities associated with the disorder. There is no cure for cerebral palsy, but early intervention can measurably improve your child’s ability to manage the condition. Cerebral Palsy is not a disease – it is actually a term used to describe a range of conditions that typically cause physical impairment. Some treatments that are possible, depending on the severity of the problem, are physical and occupational therapy; speech therapy; drugs to control seizures, relax muscle spasms and alleviate pain; surgery to correct abnormalities or release tight muscles; braces and other orthotic devices, wheelchairs and rolling walkers, and communication aids. Treatment, therapy, surgery, medications and assistive technology can help maximize independence, reduce barriers, increase inclusion and thus lead to an enhanced quality of life. So far, the treatment option for CP is to manage the symptoms of the ailment. However, in recent times, scientists and researchers worldwide have started to explore stem cell therapy as a potential treatment option for CP patients.
The spirit of womanhood needs to be saluted as it shines in all its glory here and needs recognition with reverence. I am reminded of this excellent quote: “The sun, moon, and stars in the sky may shine for trillions of years like the soft flickering small candlelight, that doesn’t get put out in seasons of wind and storm. True beauty and perfectionism in love are like faith that can never be banished, hope that can never die.” Right now three things remain: faith, hope, and love. But the greatest of these is love.
There is no denying the fact that the beginning of this journey is hard, but with commitment to your child, and determination, you will move forward and find that you have inner resources you never knew existed. As I am in constant touch with my friend now, I am aware of the predicament in which she is placed. She was a carefree person those days, but now she has undergone a radical change. I am humbled and proud because of her. Proud because of the person she is today and humbled by the wonderful qualities, which include courage; patience; perseverance and stoic acceptance; positive attitude; tolerance towards an inhuman society; the ever willing nature to help and guide others in a similar constant care-giving situation; and the efforts towards increasing people’s awareness of this problem, which she has developed during this arduous journey
You can be your child’s best advocate in the months and years to come, ensuring that he or she gets the care that is needed. The more you know, the better prepared you will be to help your child. This is particularly important in the case of cerebral palsy, which is a complex condition with a broad range of possible symptoms and complications. The good news is that there are now many options for children with cerebral palsy and their parents and caregivers, in terms of medical and surgical treatments, practical help and social care support, and also available is a mine of resourceful information.