As parents of special children, we live day to day. Yes, we envision with trepidation our child's future, but survival in the moment is our primary concern. After survival, second comes educational concerns; third, medication changes; fourth, which new therapy to try to bring our children with autism or PDD up to the levels of their peers, a very difficult task in many cases, and so on and so on, not necessarily in that order, depending on the family.
After all, PDD means "delay". And those delays can just knock a family off kilter in a flash, unexpectedly and repeatedly.
In my book, I ended on rather a negative note. On second thought, I ended 100% negatively. After 25 years raising Greg, bringing therapists into our household daily, handling lack of sleep and a plethora of other issues that all parents of autistic children understand, my marriage was strained, my nerves were shot, I was lonely and I missed my son. He had moved on as children do, and although it was our decision, my husband and I wandered around the empty house aimlessly. After all, I'd spent just about every minute of every day of those 25 years with my son (except for when I was at work), and I didn't know how to live.
So when a surprise e-mail recently arrived in my mailbox from a new reader, I opened it and read. May understood my life. Her kind words spell out exactly what she thought I should do to move forward and I want to share them here. This blog belongs to May.
Excerpt from May's e-mail:
My story has resonances with that of yours and your husband's, though I had no children.
Here's the experience:
Last year I was invited by a friend to a concert in Nashville, where I'd gone for a conference. Itzhak Perlman was playing Beethoven's 5th. I had some vague experience with classical music, but don't know much about it. Anyway, Perlman was playing his violin, with his eyes closed. Casually, to see what the experience might be like, I closed my eyes, too. OMG. It was as if I was transported to someplace else, someplace where there was such beauty and none of the sorrows of this life. The tears started rolling down my cheeks.
"This will not do in a concert hall," I said to myself. So I opened my eyes again and the tears stopped. Tried closing them again. Tears. Opened. Closed. Finally decided that I would have to wait to "really" listen with my eyes closed in my living room where I could let the tears flow if they would.
This was a life-changing experience. It introduced me to a level of beauty and transport in music that I never knew was there. I became avid for more...like having a dream and a language beyond words to thirst after...once the difficult times let up and there is time and opportunity... and to know that I will be filled.
I just finished the biography of Johannes Brahms by Thos Swafford (Hershey Lib) and am eager to spend a year with his music, using the book to guide me through. And then his biography of Beethoven, looking to his music after Brahms.
I, too, have been through a very long haul which is close to being over. You get exhausted, numb, all but used up...but I know there are these gorgeous, transporting experiences awaiting...soon. Soon.
Perhaps beautiful music may be an avenue of renewal for your souls as well....the quietness in the notes that will lead to the tears of release and relief and renewal.
Conclusion by Martha:
Parents need to move forward after making the necessary jump to a more independent life for their child. Greg prospers in his group home. He has learned new ways to communicate, life skills to survive after our death and new friends. Life with Jay and me had become hum drum for him. Now Jay and I must move forward and create a new life. After forty years of marriage, twenty-five of which were spent with autism, we are starting over. As Matt said when we renewed our vows this summer in Alaska, "May the next forty be as good as the first forty. "
Note to May: Have you considered writing? You certainly touched this author's life!
Coming home after beginning our next 40 years.
We had a long layover to plan our next trip. Greg's turn.