Editor's Note: We haven't published much in the last two weeks. We put down few ideas, but this one had to be first, before moving on.
Darleen M. Sherman, age 50, passed away on March 19, 2011. She was daughter of a long ago co-worker, Priscilla Sherman. In 1971, Darleen was taken into the home of Priscilla and Ron Sherman and subsequently adopted. From age four to eleven Darleen was institutionalized at Wassaic State School, Dutchess County, New York. At the time Priscilla, her husband Ron and I worked for New York State and we were involved in a statewide program to resettle the developmentally disabled from large institutions to community based living programs. It was project that signaled the end of tragic period in the care of the developmentally disabled. It was common in the years prior to that to consider such young children too much of a burden and they were carted off to large institutions. By their adoption of Darleen, Priscilla and Ron Sherman became pioneers in a time when Rett angels were unknown. I learned of her death on the following Monday morning while holding on my lap my beautiful CDKL5 angel, Haley. It has been only two years since Haley was diagnosed, but it had been almost 40 years since I was in Valatie, New York with one of her sister angels. In a way Darlene was a prophet for my later life. So, there is a special sadness upon Darleen’s passing.
Priscilla and Ron’s adoption of Darleen was a clear and present choice to accommodate a life in need. Although they were young then, they were not naïve, as they were employed in the work of serving the developmentally disabled. Unlike new parents who are swept up into torrent of life altering and life threatening needs upon the birth of their imperfect child without any choice, Priscilla and Ron jumped into the torrent. It is one thing to be swept up in the dark of night by the tsunami of special needs world and it is another in the light of day to jump into it to save another going by. I am sure I can say, on their behalf, that they have no regrets whatsoever.
The pain and frustrations of dealing with the issues of caring for the often acute and ever present chronic issues of our children, is over time outweighed by the awesome gratification of having done so. The Sherman’s are a tribute to such a life. There is no tool I am aware of that can measure these gratifications but we know they are there. I am acutely aware of this at this time in my life. At present, we seem far removed from Haley’s terrifying seizures of the first three years and the devastation of her diagnosis. We are beyond the dark period a few months ago when we had to consider the death of Emily. It is period of joy watching them flourish. It is also a time when I can reflect on the life and time of Darleen and her family. That means touching not only the nature of their loss, but also the measure of how they lived life in service of each other. I was privileged to have been a witness at the beginning and it is now a privilege to do so at the end of this part of the journey.
As I read our daily messages and inquiries I am always mindful of the pain that drifts between the lines screaming that the burdens of dealing with our children's burdens seem crushing and without end. I am not that far away from Haley’s’ birth four years ago or Emily’s four months ago, it still evokes tears upon recall. But I contrast those memories with the ever present gratitude and privilege of living life with these extraordinary children and the pain goes away.
Forty years ago a young lady named Darlene was prophesying a life I was yet to lead, little did I know how much I would be thanking her.