My pilgrimage is my writing, I track my tale alongside my twenty-one year-old son Davis in the landscape of our family experience. My identity is not completely shackled to his or to theirs, yet Davis’s capacity to thrive is certainly hitched to me and to the others who care for him at school and at home or in the community. I am humbled by what I can do to make a difference in the quality of my family’s journey and in Davis’s day, empowered when I see results, exhausted by the sheer responsibility of being the mom of the thirty-third child in the world to be diagnosed with his condition called The Phelan-McDermid Syndrome.
Hopefully the cairns and markers found in the writing might help others stumbling along that same less-traveled path of parenting someone with a different-ability. A child not typical. A person unique in their own way who deserves to be honored for their attributes rather than to be diminished for traits and characteristics we are less familiar with.
My tools have been created through humor, through contact with big hearted souls and through creative self-expression. Isn’t that why most of us write? To make sense of our journey, to cull meaning from chaos, to define our purpose? To leave a thread behind that others might follow through the labyrinth of special needs…
If you have a story, I would love to hear it.
Reset. Parents know this switch well. Plan for one day and reset the mind, the tasks and the attitude when our children need attention. Today this happened at 6:40 am when Davis seized, his knees slowly buckled before he rolled backwards to the floor, his butt and then his head hit the wood…all one hundred and thirty pounds. Thud. Within an hour it was apparent that our day required a full reset. I cancelled plans, his and mine, and tried to coax him to eat. Eventually I helped him back into his room to let him sleep. Without words, he can only show me how he feels and his eyes sought his bed. He slept a few hours, lethargically restarted his day and we are doing at one o’clock what he would have been doing at seven, getting ready for our day. His world is simple, and today mine is too. Just wish I could remember to hang with him when he’s not sick with the same purposeful presence that I do when his body demands my focus to help him heal. Another opportunity to learn ‘reset’.
Good judgment and wisdom come with age and experience. A parent new to the world of disability or special needs lacks both unless they have been down that road before. We enter that chute unprepared. The capacity to parent a challenged child must be created.
“How are you doing?” The questions arrive in pairs, “How is everyone?”
The Thirty-Third Child 