Ronan: I had an idea for today’s post but dropped it this morning when I read Emily Rapp’s piece in Sunday’s New York Times, Notes From A Dragon Mom, about her son Ronan, eighteen months old, who has Tay-Sachs Disease. The article is painful, so I am not suggesting it to readers without a useful motive. Ronan’s mom has a message wrapped around the agony of knowing that her son will be dead by the age of three. A message that recalled for me a moment in our daughter’s life occurring nineteen years ago this Fall.

Words That Cut Deep But Provide A Path: When our daughter turned three years old, educators recommended that we place her in a typical pre-school for two days a week while she attended our district’s special education pre-school the other three days, to enable her to be amongst ” typical peers” for language development and social modeling. Our son had attended this pre-school, which was well regarded in our town, in large part because of the director’s reputation. She was thought very skilled at creating the perfect balance of social modeling, nurturing and educating that is optimal for 3’s and 4’s healthy development. Many of our baby group moms were sending their children there so I signed her up.

It was a rough go. The gap between our daughter’s development and her classmates was heartbreakingly conspicuous and probably agitated her and certainly me. Yet, I did walk away with something which felt at the time both patronizing and profound. In my attempt to grasp at some threads of hope that our daughter wasn’t that “different” or that the director saw something promising that would herald the likelihood of our daughter’s catching up to her peers, I would make sure to chat with her briefly during pick-up, asking “how did she do today?” — code for “give me hope.” On one such occasion the director focused gentle blue eyes on my face and said, “Love her for who she is.” Really? She saw right through to my soul. The words cut deep but they provided a path, permission! Permission to let go and enjoy.

Permission: That was the message I took away with me and hear in the achingly beautiful lines of Ms. Rapp’s description of life with her dying son, “Parenting in the here and now” as she puts. Her story sadly will have a different ending than most of our stories raising our children, though she reminds us of the “long truth…that none of this is forever.” As parents of children with a future, we have to be working toward goals to get them in as strong a state as possible. But hearken to the message: while we special needs parents are researching speech and occupational therapists, sensory motor opportunities, the best nutrition and top neurologists, look to the child and permit yourself to enjoy who they are in the moment, for many moments of every day. Permission to celebrate the child they are, not the child they have to become. Ms. Rapp puts it this way: Parenting, I’ve come to understand, is about loving my child today. 

©Jill Edelman, M.S.W., L.C.S.W. 2011