"The instillation of hope that nurses give parents as they care for their child provides them lasting hope for the possibilities of their child's continued development" (Luther, p. 28) speaks volumes to the impact that we have on the families that we care for as they face the challenges of disability and disease. The relationships we develop, the knowledge we impart, and the emotional support we provide helps give families who are dealing with such uncertainty the additional guidance and support that is so necessary.
No family should be left alone to deal with the disability or significant illness of a child. Additional programs are needed to provide continuation of therapeutic interventions for those families whose resources limit their access to such services. No children and their families should have to worry about how to access those programs that would benefit their child. The stress of chronic illness on a family is significant unto itself. To have to worry and fight for every intervention is unreasonable. No family should have to choose between food for their families or a visit with an occupational therapist for the 3-year-old little boy who has an immune deficiency and who is not meeting his milestones. Nor should a family have to feel guilty over the need to abandon physical therapy for their child with cerebral palsy due to the lack of resources. This should be unacceptable in our society.
We must advocate for the rights of young children with medical problems. While we may not all be pediatric nurses, we are members of a profession that can be vocal because we are knowledgeable. We can be vocal because we have taken the time to learn about the problem. We can be vocal because we want to make a difference. We understand the impact of continuing to support activities that improve the lives of our patients.
We should always keep in mind the needs of the young and their often-bewildered families. We must be their advocates. As we listen to new agendas and plans, tune into programs for children and their families. Become vocal on those programs that support and speak even louder when good programs are discontinued.
Children with disabilities will be the patients of tomorrow. It behooves all of us to see that they achieve maximum function. This will happen only with maximum support today. There is no greater role that we can play in a family's life. Nurses can have a huge impact on the future of these very important children. It is our responsibility to speak on their behalf.