Excerpts of Stories by or About Persons with a Disability
The first time Dave opened his round brown eyes, his parents and grandparents speculated on his grand future.
“Doctor, definitely,” said his grandmother. “Look at that big forehead, this boy is going to be very very smart.”
“Well,” said his mother, who taught Law at the local high school, “smart boys can be lawyers too.”
His father, a PE teacher at the same school, reached down and tickled Dave’s tiny, soft feet. “Maybe he’ll be an athlete. A runner.”
Dave’s grandfather beamed down at his grandson as the boy’s tiny hands grasped his grandfather’s paint-stained fingers. “Maybe an artist. But only as a hobby!”
Dave acknowledged this discussion by opening his mouth to bawl, forcing his loving family to acknowledge that his diaper needed changing.
As days turned into weeks and weeks turned into months, Dave learned to say “mama” and “dada” (to everyone’s intense delight) and learned to throw food that he didn’t like on the floor (to everyone’s intense annoyance). He also learned to walk. But at age three, his parents started to notice it – Dave limped. It was only barely noticeable, really, and it wasn’t too striking given that Dave was only three.
“It’ll probably go away as he gets older,” said his father.
When Dave got to six years old, he couldn’t climb the stairs anymore. He threw a tantrum and yelled that his “stupid legs” always made him fall. A meeting with a doctor and a bit of research revealed the startling verdict: Dave had muscular dystrophy. In a few years he would need leg braces, and in a few more he would be wheelchair-bound. Life expectancy was 25 years. There was no cure.
“What now?” sobbed Dave’s grandmother.
What now indeed? How does a family deal with sudden-onset disabilities that completely and irreversibly changes the lives of a child and their entire family? How does a parent withstand the sensation that the very earth has been shattered as the future and the present seem to crack and crumble?
On the other side of the city, Lori’s family was asking the same question.
Sleeping soundly in her hospital bed, Lori was unaware of the deep lines of worry etched into her parents’ faces.
Lori’s surgery was successful; the hip bone that only last month had suddenly turned malignantly cancerous, hospitalizing the little girl, had been safely removed. After courageously dealing with the c-word that nobody wants to hear, Lori now had to contend with the fact that she could no longer walk.
Lori’s mother tucked in the hospital sheets around her daughter and thought rather helplessly of the hospital fees, the physiotherapy needs, the wheelchair paraphernalia, and especially the long flight of stairs leading up to their second-floor apartment.
In the space of one month Lori had gone from being the same as any other little girl, screaming as she streaked across a buttercup-saturated field on plump little legs, to missing one hip and having her head made far too smooth by chemotherapy. One month, was all it took.
Even putting aside the despondency that threatened to engulf them, Dave and Lori’s families, being not particularly well-off financially, had to face the fact that their child’s needs would not be met without outside help. So Dave’s mother and grandmother drafted letter after letter and Lori’s father and grandfather posted just as many to agencies and organizations and other potential donors to ask for funding. The replies varied between “regrets, no” and “maybe, if you wait a few years” – if there was any reply at all.
In providing aid to children with disabilities, those with disabilities that do not begin from birth are often neglected. Sudden-onset disabilities are not rare, and their impact on families is tremendous. The life and outlook of the children and their entire family are dramatically changed, often in little more than an instant. The family must cope with the change in quality of life and the loss of future, as well as the sudden and enormous emotional and financial burden.
Oftentimes, aid is little more than a dollar value assigned to a child in need. Approval of funding requires endless paperwork, board meetings, applications, and even red tape. Lack of appreciation for each family’s individual circumstances may even lead to detrimental ‘suggestions’ for lifestyle changes. At one point, Lori’s family was told to ‘just move to a new house’ if they couldn’t afford a wheelchair lift – when Lori’s building was full of highly understanding neighbours who were a constant source of strong emotional support. Dave’s parents, meanwhile, were told to work less to better care for their son, when the price of therapy was already a burden on their combined overtime salaries.
Families such as Dave’s and Lori’s urgently require help and understanding. With timely support, both financially and emotionally, children like Dave and Lori may still achieve an optimal quality of life. Time, here, is of the essence – they do not have years to wait.
WSFC wants to provide this timely support by establishing the Urgent Hope Fund that wouldspecifically aid in such circumstances where there is an urgent need for help due to the occurrence of sudden-onset disabilities. Having a fund on hand for these situations would bypass the long time it often takes to fundraise and to apply for aid. Our goal would be to provide financial and emotional help to families, tailored to individual circumstances, and in doing so foster hope and resilience. Only with hope can a family remain resilient in the face of immense challenges. We understand that aid cannot be limited to merely the child’s physical needs, as the well-being of the child is inextricably dependent on quality of life of the family as a whole.
The Western Society for Children handles up to $50,000 in urgent requests each year. Unfortunately we are unable to give sufficient aid in many cases. With the establishment of an Urgent Hope Fund, we aim to change this latter fact. The Urgent Hope Fund will enable us to provide hope, support and understanding to families like Lori and Dave’s in the most difficult of times.