Imagine a birth of a girl child. Such a joyous moment. 28 years later she is at a clinic with doctors and Therapists who specialize in her needs. They greet her with kindness, direct eye contact, and explain while assessing her. “We are looking for ways to help you be more comfortable.”
She has G & J tubes. One to drain the stomach & one to feed. This has stopped the vomiting. A catheter is the third tube. She is non verbal & completely dependent for her needs.
One of the appointments has a computer with retinal capability. She can focus her eyes on an area and make a choice. Beads of sweat form as she concentrates. She chooses independently. Tears Of joy drop from me as I witness this moment.
She has wonderful care. Her family has done so much beautifully.
It won’t be easy using a computer program. Sometimes she will be frustrated as we all are at times with computers. We can teach her. How amazing would it be to have independent choice after 28 years?
Freedom to look & communicate all sorts of things like:
I hurt. I need help. I itch. Turn on a movie independently. Listen to music independently. Have quiet independently. Choose a book independently. Thank you. I love you. I am not sure. Not yet. Maybe. I need a minute. Yes please. I am ready now.
At the end of clinic day we enjoy some mat time on the floor and she keeps trying to get the monitor to work in the room. Having just a taste of freedom she is attempting to express herself. I explain they have to make a special one. This one doesn’t work with your eyes.
Thank you to those who have created this devise. May this be funded so others who depend on us may be able to enjoy the freedom of choice I know I take for granted.
I am so glad you were born!