Tuesday, December 29, 2020

They Danced (Dedicated to Brittany S.)

She was in first grade when they met. At recess time she came over to stand by Kevin's side. She stayed. She watched his eyes; they were blue. She listened and liked the sound of his voice. She looked on the inside.

She learned his favorite color; it was green. She talked with him. She learned his language and his ventilator voice. She told him funny stories and made him laugh. She was considered brave: she wiped the drool from his chin. Over time, she learned to pick up his hands. She played with his hands and his feet. They laughed to tears. She wiped his eyes. She came at lunch time. They sat together, face to face. She learned to feed him. She knew how cold his feet were, how soft his hands were. She knew the shape of his spine, too; it had the curves of an “s.” It didn’t matter. She was there every morning when he got off the bus; she pushed him in his chair.

One day she picked up his hands and they began to dance. They danced, gracefully. They were poetry. They laughed and she knew his thoughts. He knew hers. When no one knew what he was trying to say, she knew. She knew his voice.

He walked her to class. They could talk without talking. She made him laugh. He made her smile. The sound of his breath she knew well; she often took his breath away, even while they danced.

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PS: Brittany would later go to school and become a Respiratory Therapist

Monday, December 28, 2020

Spirit and Consciousness

 Deformity of body does not mean deformity of spirit or consciousness. 

Frailty of health does not equate to frailty of spirit or awareness.

Lack of language does not mean mental depravity or an inability to communicate.


In reality, as a teacher and nurse for severely challenged children, I have discovered a hyper sensitivity of spirit and consciousness in those uniquely created individuals who are often seen as inadequate, frail, broken, or incomplete. 


Saturday, December 26, 2020

Kevin's Light

     Kevin had a physical body that was fragile, broken, and misshapen. Yet, when you were in his presence, there was an immense light or joy that permeated the world around him; Kevin's spirit (his light) was extremely bright even though his body (and life) were barely tethered to earth. Kevin lived breath by breath, with assistance from a machine. His body was weak and dysfunctional, but the light of his spirit could never be dimmed or dampened; he daily brought light (and happiness) in all circumstances and to all who came into his presence.

Thursday, December 24, 2020

Baseball in Bed

Kevin always was a sports fanatic. He had a passion for all sports, but he seemed to particularly love baseball. We would often play baseball while he was in bed. It was something that he really liked to do because I would try to take the time to position his body the way that a baseball player would actually bat, throw, or slide. At first I would just try to put his body into a batter’s position (with a small wooden bat in his hands). We would take great pains to get just the right arm and leg positions. He was very particular, because he knew what the proper stance was for a hitter. He knew how high the arms should be, how the head was turned and held. Once he had the proper stance of a batter, he would want to practice swinging the bat—over and over again. Of course, over time, Kevin would want me to help him make some of the noises and sounds that go along with a batter at the plate: “Hey, batter, batter, batter! Hey, batter, batter! Hey, batter, batter SWING!” After a while, Kevin would want the umpire (which was me) to call balls and strikes. Kevin, true to his nature, would not want to walk or strike out. He always, at this point, wanted to get a pretend base hit. And since he hit the ball, he would want to run the imaginary bases. 


“Mr. Allen. Can you pick up my feet, please?” he would ask. And I’d pick up his little ankles and feet and pretend like he was running the bases after just getting a base hit. Kevin, with his ball cap on, would run his heart out.

Tuesday, November 17, 2020

Beyond the Misshapen

     To the outsider or newcomer there is often an overwhelming recognition and awareness of the distorted nature of severely or profoundly challenged children's bodies; they are fragile, often disfigured. At times, there is a sense of being near a tortured or neglected soul.

The insider, however, does not have the same sense or recognition; their eyes see only life and beauty. The distorted or tortured soul does not prevail in the insider's thinking or view of reality; reality is much different for the insider. They recognize personality and unique individual traits; the appearance of a distorted physical nature does not fog their view of the human soul reaching out and communicating with them.

The relationships are built on trust and a mutual understanding of the purity and essence of life. A crooked and misshapen spine does not define a soul. An absence of voice or words does not limit the ability to love, communicate, or participate in living.

Sunday, November 15, 2020

Under the Bed

     Somehow, we ended up spending most of the day under Kevin’s bed. I had been searching for something under his bed earlier in the morning and mentioned to Kevin that his bed, underneath, was pretty complicated with little motors and wires and stuff. Boy stuff! His response: “I want to see! . . . Can I see? His blue eyes begged--once again--for a glimpse at uncharted territory. How could I deny him?

     “You actually want to go under the bed?” I asked.
     “Yes,” he said through his trache as he blinked his eyes rapidly.
     “O . . . K,” I answered. 

     I raised his electric hospital bed as high as it would go. Then I put a pillow under the bed for his head. I made sure there was enough length on his ventilator tubing, then picked him up off the bed and laid him on the floor beneath his bed. He had everything he needed: air to breathe and something to do. While on my knees, I slowly lifted him back, further and further under his bed. His eyes became wide-eyed, as if he was viewing the Grand Canyon. This was new territory for Kevin.

     “This is fun,” Kevin said as the ventilator gave him breath to speak.

     “You are one funny boy,” I said as I accidentally bumped my head under the bed, trying to scoot beside him. Kevin laughed.

We laid on our backs for a while with our feet and legs sticking out from under the bed. We were closely checking things out. Then after a bit Kevin said: “Can we get tools?”

Monday, November 2, 2020

Laughing with Kevin

     Besides his mother’s persistence to treat him like a “normal” kid, laughter seemed to be the one thing that gave longevity to Kevin’s life. Laughter in Kevin’s life was a regular daily occurrence. I’m not talking about a light, simple chuckle. I’m talking about a deep, hard, belly laugh. The kind of laugh where your eyes water, tears flow, and your belly hurts (and you might even have bladder issues). Kevin would have this type of experience at least once a day. Those who don’t know Kevin very well, see tears rolling down his cheeks and believed he was crying. I knew Kevin to laugh hard for 15 to 20 minutes. Often, if you were around him, you would end up caught in the laughter and couldn’t get out. 

     It was great fun to get caught up in the laughter with Kevin: his teary eyes, his ventilator alarm going off, and even his nose running. While laughing, Kevin would be saying (in-between breaths from his ventilator, “My . . . tummy . . . my . . . tummy . . . hurts . . . whew!” If you didn’t know him well, you would have to believe there was a severe medical emergency happening right before your eyes; the alarms going off, the tears, the chaos and Kevin’s red face. And amidst all the chaos the nurse (me) would have to suction Kevin’s lungs and give him manual breaths with an ambu bag. Often the breath wouldn’t go in to Kevin’s lungs until he calmed down and got control of his laughter. Whew! What a ride and a rush. There was nothing like it in the whole world. I can honestly say that some of the best joys I have experienced in my life have come from laughing with Kevin. 

Friday, October 23, 2020

Complete and Beautiful

     Over the years, my own children have fallen in love with my students. Relationships have developed and endured; my 3 daughters and my students have spent a great deal of time interacting and playing together. My daughters--now young adults--have untarnished hearts and eyes; they don’t see my medically fragile students as broken or damaged, but as complete and beautiful; no different than themselves.            --Allen L.

Sunday, October 4, 2020

Running with Kevin

Kevin loved to run fast; racing invisible opponents in his wheelchair. We did this often, over the years--across the playground. Kevin would say: “Run, Mr. Allen. Go faster! Faster, Mr. Allen!” (me deliberately going slow (initially). . . So Kevin would ask or say (or beg) “Go faster . . . Go faster! Then in the end, when I was breathing hard (no faking or make believe on my part—I was exhausted), Kevin would say (panting) “Whew!  . . . . . I’m tired.” In his mind and heart, he was running. I never checked his pulse, but his face would be flushed and he would be breathing (on his ventilator) as if he had just sprinted across the entire open playground—which technically, he had. 

Her Voice

She was deaf, blind and believed by many to have no observable or recognizable intelligence. To those unfamiliar to her world, this little girl was considered unreachable. However, when I held and supported her on a large classroom swing, and rocked with her back and forth, she would make sounds of contentment. Back and forth . . . back and forth. And when I would suddenly stop swinging . . . this child would bump me with her shoulders. This was no accident. She was speaking to me, saying “don’t stop, keep going, I’m enjoying this.” That little bump spoke volumes, giving her a voice, opportunities, and a personality--as long as I had the patience to listen and engage her. 
I learned, if I ignored or didn’t make the connections, her voice fell silent and her opportunities became limited to, none. I found myself in the middle of her world; a key to her voice and meaningful existence. Over time, I found her more than reachable. --Allen Lujan