It’s the first day of August–the perfect opportunity to begin blogging again. I apologize for my absence; I have learned that regular blogging is not as easy as I thought it might be. Generally, I write the way I talk–way too much! Hence, my naive assumption that words would roll on to the page as profusely as they come off my tongue. Not so.
The reason I chose to begin a blog has not changed. I want readers to learn about the World of Wishes and the children who cope with serious illness daily. Since 1999 when I began granting wishes to children with life-threatening illnesses, I’ve learned a few lessons. These include:
Life is unpredictable; sometimes it throws a curve you are unprepared, even unwilling to accept.
Parents who have a child diagnosed with an illness that will cut short their young lives are no different than you or I. They do not want this to be a reality for their child or themselves. They are dedicated to helping their child reach his/her greatest potential.
Finding support–financial, social, medical, even spiritual is often a battle. Like a minefield, families must navigate through miles of red tape. They are overwhelmed with paperwork for medicaid, insurance and any other assistance they may be fortunate enough to find. Often, family, friends and clergy are not tolerant, understanding or supportive.
Many couples find it hard to sustain a marriage centered on a very ill child whose needs must take priority over their own. Add to this financial pressure, a lack of respite and drained energy and emotion.
Children who are ill do not want to be patronized. They want to be like other children; do what other children do; and most importantly, be treated like a child.
Children who are nonverbal communicate in other ways. Look at their facial expressions. Ask if they have developed signs for yes and no or other needs. Whether a child talks or doesn’t talk, he/she does not want to be ignored or seen through the eyes of pity. Parents can usually share the best way to communicate with their child.
Siblings of special needs children need attention, too. They want to be included and loved. Sometimes they may tire of accompanying their sick sibling to the doctor’s or the hospital. Offering to help by caring for a sibling may be one of the best ways to aid a family.
The greatest need of families with children in wheelchairs is dependable transportation with a wheelchair lift. When a child is 5 or so, mom can lift their child into a vehicle. As that child grows, it becomes more and more dangerous to do that. I’ve heard of several mothers and their children being injured by trying to lift and transfer older, larger children to a car seat. Unfortunately, vans large enough to accommodate wheel chairs and include a ramp or lift are not affordable for families who must live on a small medicaid income.
Another ongoing need for these families is respite. Many babysitters are afraid to care for a special needs child. Hiring a nurse can be very expensive.
And finally, the greatest need I’ve encountered with Wish families is that of acceptance. They need family, friends and acquaintances that will allow them to share their victories and sorrows. Sometimes just having fun like J.P. (above) is experiencing while riding a Ferris wheel on his recent New York Wish trip is just the thing to bring much-needed gladness to a home.