Living With Rett Syndrome - NYTimes.com It can be challenging for parents to reconcile the dreams we have for our children with the reality that is their lives. As I write, I am half-listening to a baby monitor that is playing in my 22-year-old daughter's bedroom. She is upstairs happily watching a movie about a princess, a movie she has been watching regularly for 18 years. I am on guard for unusual noises that could signal a problem. A fall or a seizure could be something mild, or something devastating. Lisa has Rett syndrome, a severely disabling developmental disability that strikes without warning and results in almost total dependence throughout life. Lisa was a typical 1-year-old, walking, saying a few words and playing with toys, when she slowly started to change. Her older brother kept growing and changing, while Lisa's words slipped away. She started making the same sound over and over while she began to twirl her hair and make odd movements with her hands. Her toys and books were picked up, put in her mouth, and then dropped to the floor. Soon they were never touched again. She began to cry uncontrollably and have trouble sleeping. We went to doctor after doctor, had test after test, and tried medication after medication. She was enrolled in all kinds of therapy and went to a special school. She carried the label "autistic" until genetic testing became available in 1999 to give a name to her perplexing behaviors. When she was 11, we learned that Lisa's disability was more complicated than autism. Lisa had Rett syndrome. While Lisa was in school, I met annually with her teachers and therapists to review her progress over the previous year and write new goals for the coming year. When Lisa was very young, there were pages and pages of goals - and they were so ambitious! They reflected hope and dreams of success and achievement: she would talk, write, read, play with toys, learn to count, name shapes, feed herself, go to the bathroom by herself, develop job skills, become independent. None of this happened. As Lisa got older, the therapists" hopes shrank. Lisa will recognize her name; she will point to pictures of family members; she will turn on the water faucet. My dreams for her shrank as well, and now they centered on the word "don't." Don't let her get seizures; don't let her develop scoliosis; don't let her lose her ability to walk and eat. Don't let her die suddenly in her sleep like so many girls with Rett syndrome. Don't let anything happen to me because I have to be able to take care of her. Don't let her die young because I can't bear to lose her - but don't let her outlive me, because who will take care of her when I am gone? Lisa graduated from school when she was 21. She spends her weekdays in a program seven miles from our home. Life is now lived in the short term. But I am 53, my husband is 60 and Lisa is 22. If she remains healthy, there will come a time when I can't care for her at all. She will need 24-hour care and a living situation in which she is happy, her needs are met and she is safe. Will we be able to afford that? What is the alternative if we can't? My husband and I have made plans, but the reality of our being gone and her living on is frightening. It helps to hear the stories of those who have already faced this stage. If you are a parent of an adult with special needs and no longer the primary caregiver, what has that been like for you? How have you dealt with the feelings that come along with this? Reality has hit hard now that our older child has moved out of the nest but our youngest one never will. There is meaning in all of this when I let myself see it, but that can be hard when I'm changing a diaper or giving my 22-year-old daughter a shower. I struggle, nearly every day. We have done our best to plan ahead for Lisa's physical care, but there is so much more to what I do for her, and she for me, than that. D.H. Lawrence wrote, "The living moment is everything." When I am feeding Lisa, or changing her, or just sitting with her and giving her kisses, I try to revel in the pleasure of her being, and marvel at her profound uniqueness. There is beauty in the simple and repetitive nature of doing something for someone who can't do it for themselves - and when I can put my fears aside, I can let that be, for that moment, enough. Theresa E. Bartolotta, Ph.D., is an Associate Professor of Speech-Language Pathology at Seton Hall University and a Trustee of the New Jersey Rett Syndrome Association.