Life, Loss and Emily

We have always wondered if Emily thinks of us when we are not with her. Does she miss us or is it more out of sight out of mind? When Emily was in pre-school Larry had a number of years when he travelled for work quite a bit. I would often tell Emily, “Daddy’s going to the airport.” I will never forget when we took her on her first trip on an airplane. She was so excited and shocked that when we got to the airport, got on a plane and actually went somewhere! All that time when she was told Larry was at the airport it never occurred to her that he actually went anywhere and it never occurred to us that she would think he would stay at the airport. I now wonder what she thought he was doing at the airport for days and weeks at a time…. But this is how her Autistic Spectrum Disordered brain works and remains a mystery to us.

Now that we are well into middle age and retirement is coming into view I have started again to wonder if she will miss us when she perhaps does not live with us any more or, heaven forbid, we should pass away. Will she live within her own mind and schedule and forget about us? Will she want to come visit us? Will she look forward to us visiting her? Anyone with a loved one on the Autistic spectrum knows this conundrum. Autism manifests differently in each person on the spectrum yet one thing is common to all and that is a lack of social connectedness. Emily has friends but feels no need to call, text or email them. She will text me if she has a personal need…..I love the “Mom. I need bread” texts….but we never get the “Hi, how are you doing?” phone calls or the long winded, drama infested diatribes about who did what to whom that other parents of teenage girls hear as a part of everyday life. Once in a very great while Emily will suddenly hug me so fiercely I feel my bones will break but that is about all the emotion I, or anyone, gets from her.

We have, however, seen firsthand how Emily deals with death and realize that she does understand the finality of it. I also believe she feels sadness and loss in the passing of a loved one. She just does it in her own peculiar and quirky way. In the 13 months from February 2007 until March 2008 we lost both my parents to COPD and my best friend, Sherrie to complications of MS. Whereas at the time I thought Emily seemed to deal with events in a matter of fact way and often seemed to be removed, now that I have had some space and found a semblance of peace with my own loss, I can reflect and see that Emily in reality was very involved and engaged.
Emily is, as all people on the spectrum are, a very concrete thinker. The abstract is difficult for her hence she envisioned Larry living in the airport instead of getting on a plane and going somewhere. When my Mom passed we had a Memorial Service for family and friends in the town where they lived in South Carolina. After the Memorial Service my sister, Mandy, an abstract thinker, got everyone together to write notes to my Mom. She had everyone attach the notes to balloons after which we gathered in Mom’s driveway and released the balloons to heaven for my Mom to gather up so she could read all the secret messages. Emily enjoyed the activity…wrote her note…To Nana Love Emily…and sent her balloon to heaven. Everyone stood quietly and watched until the last balloon was out of sight not wanting to see that last balloon vanish from view. Emily, on the other hand, was done and announced it was time for dessert. What was a beautiful and thought provoking activity for everyone else was simply an art project for Emily and when it was done so was she.

The ashes were something else entirely, however. We wound up with the 3 urns of ashes displayed in our living room waiting for the frozen earth of the cemetery in the Berkshires my parents had chosen for their final resting place to thaw. (Yes, three urns. My father’s younger brother had been waiting in my parents’ family room for burial since 2005.) I actually found comfort in having them there and found myself going in to talk to my parents daily. Emily had her own daily routine as well. She admired the beautiful mahogany urns, read the plaques affixed to them and made comments about the ashes within the urns. I am sure, by the way she examined the urns, that she was probably trying to figure out how her Nana and Pop-Pop could fit into those small wooden boxes but none the less she knew they were there. It was in mid June when we all made the pilgrimage to that beautiful spot in the Berkshires to bury the urns in a plot adjacent to my Mom’s parents. We all gathered with our families as well as a handful of other relatives at the cemetery. It had been decided this should be very informal so we formed a circle; I said a few words about my parents and opened the floor up to anyone else who felt the need to speak. Imagine our surprise when Emily quickly and confidently stepped forward and spoke from the heart for a very long time. She spoke about her relationship with her grandparents, who they were and things she had done with them. She is no great orator but I will tell you that there was not a dry eye in the place. What a fitting tribute to my parents. She was a hard act to follow. But most importantly to us was that we now knew she got it. She loved her grandparents, could express that love and had a void in her life with their passing.

So…when we enter this next phase of our lives, retire and get Emily moved on to more “independent living” will she miss us? Yes, I think she will. She will probably not lose sleep wondering what we are doing like we will wonder what she is doing but she will enjoy seeing us. And when we join my parents and pass this life will my daughter feel loss…be sad….remember us? Yes. I am convinced she will relive events of her life with us in her mind. She will pace, and talk to herself and us and we will be in her heart forever.