As a little girl of eight years, I couldn’t wait to meet my first little brother, James. James was born a king, or at least I thought so. Why else would he have a little crown on his head just a day after being born? Truth is, James was born with Down syndrome. The crown covered up all the wires going into his little body following heart surgery. Even when the crown came off, James was still the king in my eyes. He was patient, loving, and had a smile that could stop you in your tracks.
Not long before his third birthday everything changed; James started to lose language, preferred to keep to himself, and that glowing smile appeared less frequently. Not long after that James was diagnosed with autism. Since that time, James (now age 19) continues to make gains in self–help and language every day but he remains primarily nonverbal, relying on his family and friends to care and advocate for him.
This poem, written by our little brother, Joe (age 17), is written from James’s point of view. It is a powerful description of the things James shows us but is not able to put into words.
I’m trapped by my own mind.
I hear you. You hardly hear me.
I’m trapped. Everything is loud.
In front of me behind me, left and right, above and below.
A million engulfing senses and but one on which to train my focus.
I tell my mind what to do. But my body will not listen.
If at first you don’t succeed, try, try again?
I can hardly force my body to try.
You look at me differently. Uncomfortably. Pitifully.
I’m trapped. There are names for people like me.
Used jokingly. Insultingly, Ignorantly.
I’m trapped. I can listen. I reason. I understand.
But you have no way of knowing.
I’m trapped. I create. I imagine. I cherish. I believe.
But I can’t explain.
Life has cheated me.
Or so it seems.
I have much time to spend with my heart, with my God, and have come to but one conclusion.
Some listen closely.
They shed their comfort to give me dignity. Respect. Opportunity.
And they discover joy. Adoration. Curiosity. Desire. Thought. A person. Why would I, in my state, display such humility?
Why would I, in my state, be so genuine?
I am handicapped.
But I bring sheer delight and peace and rejoicing.
To all who choose to witness me and to witness my heart.
I live. I love. I hope. I dream. I’m free.