I want you to imagine...
sitting in a wheelchair. Your movement is very limited. You can move your head a few inches to the left but you mainly look to the right.
Your hands can move a little. Your range of motion with your right hand is five inches max. Your left hand does not move much. It stays immobilized.
You can move your thumb so you can grasp slightly. Your fingers are stiff and don't bend. Your elbow is stiff. You can't straighten out your arms. It hurts to have someone lift your arms up.
Your knees can kick but your legs don't straighten. When you lay down, your legs can't straighten out. You lay with knees bent all the time.
Your body has almost no muscle strength. You can't hold your head up. You have to have a headrest for the support. If you sat in a chair, you would fall sideways. You would crumple onto the floor. And there would be absolutely nothing you could do about it.
Now imagine you are sitting in a wheelchair that you can drive as long as your hand is in place on the control. You have the freedom to move and spin and dance in this chair. It is incredible to speed down the sidewalk and feel the wind on your face, to crunch the leaves in the fall and spin. You make them dance and jerk. You have mobility and you are independent in your chair as long as your hand is on the control.
In school you have to turn off your chair in class. You hope someone will move your hand off the control because it can hurt to keep it there a long time. You sit and listen to the teacher. You see the words on the board that need to be written down in your book. The homework, the classwork, and the miscellaneous information. You can't write it down. Someone else has to write it for you. You have to depend on them to write it all to take the notes that you will need for tests, for homework, for knowledge. Your classroom aide wanders off in the middle of class and is gone. She misses the important information that you wanted written down. She misses the homework the teacher just added.
Hair has slipped down onto your face. You try and blow it off. It itches your nose. You blow but it stays. There is no one to move your hair. There is no one to scratch your nose. There is no one to write for you. There is no one for now.
The lights come on and the aide is not there. Kids leave the room and the teacher steps out. You are left there alone. No one to turn on your chair. No one to put your hand onto your control. No one to open the door. No one to itch your nose or brush the hair out of your face.
You try and hold back the tears. You try and call for help. You try but it doesn't work because you are alone. You are an afterthought. You start to cry because there is nothing that you can do but sit there and wait. You have learned to be patient and wait. You have learned to bear the pain and the inconvenience. You have learned what it is like to be invisible.
Now that you have imagined all this I want you to imagine the pain and the loneliness and the fear. The fear of being forgotten. The fear of being so vulnerable. The fear that must be faced each moment of everyday. The fear that must be overcome and conquered. The courage and spirit that it takes to face these moments.
Imagine having someone with you all the time. Someone to feed you. Someone to turn the page. Someone for protection. You learn to live with no privacy. Your life is not your own. You always have someone hovering near.
I want you to now take a deep breath and raise your hands. Raise them high. Stretch and stand. Lift up your eyes to the sky. Say a prayer of thanks that you can do this. That the Almighty blessed you with strength and movement. Do this because the things that you have just imagined are what my daughter lives with every moment of her life.
Your hands can move a little. Your range of motion with your right hand is five inches max. Your left hand does not move much. It stays immobilized.
You can move your thumb so you can grasp slightly. Your fingers are stiff and don't bend. Your elbow is stiff. You can't straighten out your arms. It hurts to have someone lift your arms up.
Your knees can kick but your legs don't straighten. When you lay down, your legs can't straighten out. You lay with knees bent all the time.
Your body has almost no muscle strength. You can't hold your head up. You have to have a headrest for the support. If you sat in a chair, you would fall sideways. You would crumple onto the floor. And there would be absolutely nothing you could do about it.
Now imagine you are sitting in a wheelchair that you can drive as long as your hand is in place on the control. You have the freedom to move and spin and dance in this chair. It is incredible to speed down the sidewalk and feel the wind on your face, to crunch the leaves in the fall and spin. You make them dance and jerk. You have mobility and you are independent in your chair as long as your hand is on the control.
In school you have to turn off your chair in class. You hope someone will move your hand off the control because it can hurt to keep it there a long time. You sit and listen to the teacher. You see the words on the board that need to be written down in your book. The homework, the classwork, and the miscellaneous information. You can't write it down. Someone else has to write it for you. You have to depend on them to write it all to take the notes that you will need for tests, for homework, for knowledge. Your classroom aide wanders off in the middle of class and is gone. She misses the important information that you wanted written down. She misses the homework the teacher just added.
Hair has slipped down onto your face. You try and blow it off. It itches your nose. You blow but it stays. There is no one to move your hair. There is no one to scratch your nose. There is no one to write for you. There is no one for now.
The lights come on and the aide is not there. Kids leave the room and the teacher steps out. You are left there alone. No one to turn on your chair. No one to put your hand onto your control. No one to open the door. No one to itch your nose or brush the hair out of your face.
You try and hold back the tears. You try and call for help. You try but it doesn't work because you are alone. You are an afterthought. You start to cry because there is nothing that you can do but sit there and wait. You have learned to be patient and wait. You have learned to bear the pain and the inconvenience. You have learned what it is like to be invisible.
Now that you have imagined all this I want you to imagine the pain and the loneliness and the fear. The fear of being forgotten. The fear of being so vulnerable. The fear that must be faced each moment of everyday. The fear that must be overcome and conquered. The courage and spirit that it takes to face these moments.
Imagine having someone with you all the time. Someone to feed you. Someone to turn the page. Someone for protection. You learn to live with no privacy. Your life is not your own. You always have someone hovering near.
I want you to now take a deep breath and raise your hands. Raise them high. Stretch and stand. Lift up your eyes to the sky. Say a prayer of thanks that you can do this. That the Almighty blessed you with strength and movement. Do this because the things that you have just imagined are what my daughter lives with every moment of her life.
Comments
I am sitting here in Virginia with tears rolling down my cheeks with the power of your word, with the power of your beloved child's experience... This needs to be shared with her teachers, with the people responsible for her care, with those who NEED to understand: you have given voice where one has to be shared. Thank you for this glimpse into Amy's experience, and thank you for reminding me that God's grace, His glory, and His message is always sent to us through the smallest and quietest of messengers.
I will be in touch soon!
Love you all so much!
With thoughts and prayers,
Reina