Our beautiful Charlie is 9 months old now; he had corrective surgery at seven months to remove the lesion at the base of his spine and untether his spinal cord. He experienced many complications and we spent most of July at the hospital.
We, like many other families, thought that after the surgery our baby would heal and we would put the experience behind us and move on.
Unfortunately the road to recovery has been long and bumpy, and although we have close family and friends that have been here for us, few can really understand what it’s like to have a child with ongoing challenges — challenges so overwhelming that I often come home to find my wife in tears because Charlie literally has bowel movements every 20 minutes due to nerve damage, a side effect of the surgery, and a diaper rash that’s out of control.
Although Charlie is very blessed, he may be incontinent and will likely need a brace on his ankle to walk. We realize we’re not alone. There are many other parents and caregivers in the valley that face different and harder challenges.
What we have in common is that our children’s challenges affect us, our families and our relationships with each other. Shannon and I, through our own grief, and not having peers close by that can relate to what we are experiencing, had an idea to start a support group.
The Parent Support & Help Group (PS&HG) was organized in conjunction with Father Dan Rondeau (Father Dan) of St. Margaret’s Church, who is also interested in helping parents with children who have special needs.
The group will be facilitated by Karen Dobbins, Licensed Marriage and Family Therapist. In addition to receiving emotional support, PS&HG will also facilitate a network of families and resources that are available to help parents. This will include presentations from community leaders and real heroes who discuss their disability and challenges.
We hope you are able to join us and share your story or just listen to others. The only criteria for this group is that you are a parent or legal guardian who has a child with special needs (i.e epilepsy, brain and spinal cord impairment, pervasive developmental isorders, mental retardation, cerebral palsy, emotional disturbances, learning disorders, autism, cancer, etc.).
PS&HG will meet every other Tuesday beginning Oct. 21 at St. Margaret’s Church from 7-8:30 p.m. There is no cost and it is based on a freewill donation. No childcare will be provided at this time.
To register for the Parent Support & Help Group or for further information, please contact Deacon Cherry Remboldt at 346-2697, Ext. 107 or e-mail her at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .
