Not Rett Now

Wednesday morning, while a friend and I took our children to their neighborhood splashpad, a little girl, about five, caught my eye. She had gorgeous shiny blond hair and beautiful eyes, but there was something different about her that I just couldn’t put my finger on. She stared for long periods of time and seemed to lean her head over to the right, as if trying to figure something out. Her lingering gaze worried me. Something just didn’t seem right.

As we watched our children, I stalker-ishly observed her through my peripheral. My behavioral health background revived itself. My brain was whirling, and I began to assess her as autistic. She never uttered a word, and I noticed that the older lady who was with her, possibly her grandmother, was communicating rather strangely with her. I also couldn’t help but notice the pacifier sticking out of the backpack she had brought with her.

Several minutes later, a younger woman arrived with a little boy and some food. From the look of things, she had to be the girl’s mother.  We began conversing, and she identified herself as the girl’s mother. Due to my child-like curiosity, I couldn’t help but inquire further about her daughter, who the older lady (her nanny), stated was nonverbal. This mother shared how her daughter was born healthy and normal (started to speak, was walking fine, etc.), and I saw a glimmer in her eyes. But as she continued to speak, the light dimmed. She shared that her daughter had Rett Syndrome. I had never heard of it, so I inquired further. She explained that just before her daughter was eighteen months, she began to regress. She said her daughter stopped speaking, her hand control slowly ceased, and other issues developed.

As a mother, I felt for her. I could see how hard it was for her. She did her best to mask her pain with a smile, in an attempt, it seemed, to assure both of us that she has become at peace with it all. She told of how she had come with her camera, in order to make flashcards for her daughter, so she could use them as communication tools. She explained that being that her daughter is nonverbal, she becomes very frustrated when unable to communicate what she wants, so the flashcards are helpful to know what she wants. The more she described her interactions with her daughter and the tools she was developing to be able to communicate with her, I wondered about this amazing woman.

I have seen and heard of families who have disabled family members, and due to their busy lives, have them in homes or pay for others to engage them. This mother was doing all she could, including securing therapy services for her daughter, who some others may have given up on. As if that was not enough, she also shared that she had noticed her younger child’s speech wasn’t up to par at two years old. Because of her experience with her daughter, she caught on to this quickly and ensures he receives speech therapy, in order to develop his verbal skills.

As she prepared to leave, I had to pause and commend her. She thanked me as she began cleaning up the remnants of their lunch. At this time, her daughter began stomping her feet, did not want anything they offered her. She seemed to be biting her own arm in frustration, so her nanny quickly attempted to calm her as her mother scurried to pack up their belongings, each assuring her that they were going home.

As I watched her leave, my heart broke. I was in awe of this woman, a mother like myself. As she walked away, all I saw was love. While I saw what some may consider a potential burden, this woman saw her daughter: a child she held in her womb for the better part of a year, birthed, and simply loved whole-heartedly. If she did feel the load, the weight of it all, or questioned the future, it wasn’t evident, at least not at that time. Love alone radiated from her.