Children's Program – Our Godsend (by Deborah Murphy)

Image of Sandy Miller, Children's Program Coordinator, with Anna James.  

Image: Sandy Miller, Children's Program Coordinator, with Anna James.

Since beginning our planning for the ISMRD Family Conference back in April 2003, we had looked forward to the opportunity for attending children to meet and interact with others similarly affected and their siblings. For many, this would be the first time they had ever met another child with the same diagnosis or one similar to theirs.

As the conference date approached, it became clear that the children’s program had taken on a life of its own! To enable parents to attend the Workshop and Conference sessions, the planning committee decided professional caregivers would be needed instead of parent volunteers. We also knew that it required someone extremely talented and versatile to develop and manage both the activities and the caregivers we needed to find.

After receiving no responses from postings on a Maryland Nonprofit volunteer website, I contacted the principal at my daughter, Taryn’s, school for help. She emailed ISMRD’s “volunteer opportunity” for a Children’s Program Coordinator to the school staff. After about a week (a very long week!), I was approached by one of the school Social Workers who wanted to know more about the position. She expressed that she was probably not qualified, having not done anything like this before. We talked for a few minutes, I gave her the best pep talk I could muster, yet she was still unsure and wanted to think about it. I did not want to leave without getting a commitment, however. After all, here was someone who was interested in a job that, until now, no one had wanted, and a job that desperately needed to be filled. This was a “moment of truth” when all pride goes out the window and one must do what needs to be done!

Therefore, in the busy foyer of St. Elizabeth School, with students running to their busses and staff mingling about, I got down on my knees and begged Sandy Miller to take the position of ISMRD Children’s Program Coordinator. Sandy was mortified! She begged me to get up off of my knees, but I told her I would do so only if she agreed to take the job. Sandy agreed and the rest is history.

I believe all those who attended our conference would agree with me that Sandy was not only qualified for the job, but developed a program that emphasized our children’s talents, recognized their different ages and abilities and provided a safe and loving environment for them to interact. I call Sandy a Godsend. Thank you, Sandy Miller, from all of us!