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.

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?”

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.