Children and their families living with chronic illness have lives very different from those of us who are healthy. Every day, activities such as getting up in the morning, washing faces, brushing teeth, getting dressed, going to the bathroom, activities that most of us do without thinking twice, require families with special needs children to spend a great deal of time with their children completing each of these tasks.
With a child that needs total care, every day, all day and night, each of these activities becomes an act of selfless love. Day after day, the parents of special needs children take care of even the most intimate of their child’s physical needs, repeatedly, without hesitation and with thoughtful contemplation about the “best” way to do one care treatment or the other. These everyday tasks have an underlying component of fear of the unknown with regards to their child’s ever-changing health. This results in parents living in a state of hyper-vigilance, watching for the slightest changes in their child’s health as they take on the role of doctor, nurse, social worker and spiritual guide, in addition to that of parent.
While many of our children know their parents voices or their scent, most of them do not have identifiable responses to their caregiver or the world around them, except when they become overstimulated and irritable. Many have never said “mama” or “dada” or any other words. These special children and teens have never hugged their parent or siblings or told them they love them. Yet, even without any reinforcement from them, their parents and siblings continually tell them and show them how much they are loved.
The entire family adapts to the child’s illness, which controls each member of the family’s life. They learn to understand what they can and cannot do because of their brother or sister’s illness. Instead of being angry, brothers and sisters often become protectors and guardians of the child who is ill, focusing on their well-being. The brothers and sisters are used to cancelling their plans at the last minute due to an unexpected hospitalization or health crisis. Some of these brothers and sisters have resentment and anger towards their ill sibling. However, with effective interventions from their parents or professionals, and the developmental changes they experience as they get older, most are able to understand that illness and fear for their siblings actual cause their distress, not their brother or sister.
One of our mothers would visit with her child every day while she was at the house and would sing her favorite song to her. Even though her singing was out of key with many of the words wrong, she sang from her heart and the love she shared with her daughter could be heard in every note. This unexpected interaction resulted in many tears for touring nursing students, who happened upon the pair. Now that her daughter is deceased, this mother holds onto these memories, which keep her daughter close to her.
A father, after helping to put curlers in his daughter’s hair, had curlers put in his hair as well, and when his daughter saw him, although weak, she lifted her head and laughed, giving both a special moment without fear or pain. Another father shaved his head after his young son lost his hair from the treatments he received and the two would proudly show off their “bald” heads.
Throughout illness and ultimately death for some, the deep sadness and fear are balanced with love that the child and family share.
This never-ending love continues long after death, as families find ways to honor their loved one. Their love now goes out to other families who share a similar pain, as they find beautiful ways to keep their children alive, often by doing community benefits on their behalf.
Love is the greatest medicine of all.