Chicken Soup for the Soul: Children with Special Needs (25 page)

I’m not sure why, but one day last fall, I changed my mind and decided to do it. I called the swim program and explained our situation. I shared my concerns about Jackson, and what I hoped his instructor would be like. They suggested John, and so we set up our first six-week
session with him.

When we arrived at the pool, I couldn’t believe my eyes. The instructor was a teenager! My heart started beating fast as I walked into the pool area. I blurted out, “He has autism, he doesn’t talk, he doesn’t really understand a lot,” and so on.

John just smiled and said, “Okay, don’t worry about it. I’ll take it easy, and we’ll be fine.” And then I had to walk out of the room to the other side of the one-way glass.
I can’t believe we’re doing this,
I thought.

I sat with the other parents who were watching their children swimming, and I sobbed for the first ten minutes. But I need not have worried. My son was having fun. For the first time in his life, he was just like every other kid in the room. Most new things in his life are very stressful. This, however,was not. He was just a boy in the pool having fun.

We really couldn’t afford one-to-one swim lessons, but Jackson kept swimming anyway. Month after month after month, we signed up—always with John. There were times when John would be out, and Jackson would have to swim with a covering instructor. It never worked out. Usually it was because the instructor was nervous or uncomfortable with Jackson. He didn’t know what to do with him, or what he liked, or what he was capable of. I would end up walking back and forth into the pool room to talk to them. It got to the point where, if John was out, they would call us and see if we wanted to cancel. For Jackson, the lessons were wasted if they weren’t with John.

In March 2005, after Jackson had been swimming with John for over six months, I wrote a letter to the owner, telling him what a wonderful experience swimming had been for us. It was all because of John and his natural way with Jackson. It amazed me how someone so young (John was only eighteen) could be so wise, so kind, just so good with my son. We were extremely lucky to have found such a good match. Jackson was very comfortable in the water. He was learning to kick, to dunk his head under, and to jump in the pool. His trunk strength increased from learning to climb out of the pool, and he was very interested in the other kids who were getting lessons around him. Swimming class was just so much more than we had hoped for.

And the benefits carried over into Jackson’s daily life. He seemed more confident and independent. He became very comfortable in the water, and we really started to enjoy swimming together. It was a nice way to end the week—innocent, easy, typical fun, which was hard to come by for our son.

On Memorial Day weekend 2005, everything changed. I was away at an autism conference. My husband took Jackson to swimming class at 7:30 PM on Friday. He decided to take a picture of Jackson and John and send it to me on the camera phone. Later, when we spoke about that night, he told me Jackson was John’s last student for the night, and that John’s friends were waiting for him to get off work. Jackson swam with John that night and had a great time.

That was the last time.

The next morning, John was driving with a friend and had a terrible accident. His friend died. John was taken to the hospital where he was put on life support. We found out about it on Tuesday morning. John was taken off life support Tuesday night.

I have cried a thousand tears.

I am devastated by the loss of this young man, not only for the obvious reason—a young life lost, a sweet, kind young man taken away. But also for the not-so-obvious reason. This young man changed my life and gave me a gift that no one else has been able to give.

Jackson’s three and a half years have been difficult, complete with both medical and developmental problems. He has had surgery three times. He has undergone countless medical procedures and evaluations. While I was pregnant with him, doctors told me that he might not survive the pregnancy. Jackson’s life was difficult even before he was born. Almost every aspect of Jackson’s life has been fraught with worry—except for thirty minutes, once a week, when I got to be just a mom watching her son swimming around and having fun. I got to see what life is like on the other side, thanks to John. And that won’t happen anymore.

After John passed away, I went back to the swim program to bring some pictures for a scrapbook that they were going to put together for his family. I knew when I walked in that door that Jackson could never go back. I could barely stand there and hand over the pictures. I hardly made it out the door, crying through the parking lot, sobbing into my car.

Life just isn’t fair.

A few weeks earlier, I had talked to John about stopping swimming lessons in August. At this point in Jackson’s development, we knew that he was not ready to really learn to swim independently. He had gotten a lot out of his swimming lessons already—confidence, strength, socialization, and fun. He had achieved more than I’d ever expected. But we just didn’t want to stop yet. Even though it was expensive for us, Jackson was just having too much fun.

When we went to the wake, we introduced ourselves to John’s family. How could I explain to them what an impact he had had on our lives? What a special person we thought he was? How could we express how our lives would never be the same? My sorrow was so great that I could not even begin to imagine theirs.

I learned from his parents that John had always been a compassionate person. He had worked with children and animals for years. When he passed away, they donated his organs, and he helped save four people.

You saved me, too, John. You gave me a glimpse into a window that I hadn’t seen before.

We keep a picture of John and Jackson in his room, from the last day they swam together. I will make sure that Jackson understands what John did for us. He gave us an amazing gift, and we will never forget him.

Michele Iallonardi

Michele Iallonardi
lives on Long Island with her husband, Ralph, and their three boys. She is an advocate for her children and the community. Michele is a writer whose family was featured in the documentary
Autism Every Day
by Autism Speaks. Michele runs a group for families with three children on the spectrum. Email her at [email protected]

Miracle Field

I
’m not old enough to play baseball or football.
I’m not eight yet. My mom told me, “When you start baseball, you aren’t going to be able to run that fast because of your handicap.” I told Mom I wouldn’t need to run that fast. When I play baseball, I’ll just hit them out of the park. Then I’ll be able to walk.

Edward J. McGrath, Jr.

I’ve always heard that miracles happen when you least expect them. And yesterday I experienced it for myself. It all started with a phone call from a guy named Steve. “Hey, Scott,” he said. “Do you remember me?”

I recalled meeting him earlier in the year at his brother-in-law’s place of business. Steve had heard about my son, Evan, and about his terminal heart disease and Noonan syndrome. Even though Steve doesn’t have a child with a disability, he is a warrior for the cause. His brother-in-law had told him about the stories I write, and Steve wanted to be added to the list of readers. I only met him face-to-face one time, but since then, we’ve stayed in contact through e-mail.

After I acknowledged that I remembered him, Steve asked me—knowing I was a builder/carpenter—if I would meet him at a construction site to help finish a project that was at a standstill. “Yeah, I’ll take a look,” I said. We agreed to meet the next day.

I arrived at the job site a few minutes early on a sunny March morning, very welcome after another harsh and gray Michigan winter. I was early, so I climbed out of my truck and wandered around the complex. I must admit, I was a bit in awe. The view that surrounded me was of a beautiful outdoor baseball stadium—one of the nicest I’d ever seen. The grass on the field was green—even in March!—and the surrounding areas were neatly kept. There were magnificent light poles standing around the field like soldiers guarding an encampment. I could only imagine how magical a night game played on this field would be.

Just then, Steve walked up, and we shook hands. As we stood in the middle of the impressive field, he began to explain how he’d started the project a year ago, and now he needed help to wrap it up. He told me how he’d become a part of the “Miracle League.” I started to think he was talking about the movie with Kevin Costner,
Field of Dreams.
You know the famous quote: “If you build it, they will come.” Yep. And here I am, a builder. So I said, “But the field looks great! It looks finished. I’m curious as to why you think you need me.”

“No, no, no. That’s not what this is about,” he said. He continued telling me about the Miracle League—that every player bats once each inning, that all base runners are safe, and that each team and each player wins every game. I pictured in my mind what a game played by those rules would look like, and as I continued to listen in the early spring sunshine, I started to daydream about the field.

In my mind’s eye, the empty bleachers began to fill with spectators, cheering like they were in a pennant race. The sounds of the players chanting and calling to one another filled the air. I swear, I think I even picked up the scent of hot dogs wafting from the concession stand. The excitement in the air was exhilarating. And then, from behind home plate, I heard: “You’re safe!” The umpire rumbled his call, and the crowd stood and cheered.

I found a spot right behind the backstop—the best seat in the house. I leaned into the chain-link fencing and yelled at the umpire, “What? He can’t be safe; everybody who’s gotten up to bat this inning has been safe. How can that be?”

The heavyset umpire, dressed all in black, turned around and gave me a quizzical look. He snapped back at me: “Can’t you see these kids have medical issues? Buddy, this is the Miracle League, where everybody is safe. Everyone gets at least a base hit, and there’s no such thing as a recorded error.”

Hmm, I guess I really hadn’t noticed that the last kid to cross home plate was in a wheelchair. I started to look around, and, to my surprise, I noticed a lot of wheelchairs and walkers in the dugouts.

As I continued to dream, a boy with an oversized head approached the plate. This player, a bit small for his age, wasn’t in a wheelchair, but he needed help getting to the plate. The man who walked alongside the wobbly kid must have been his dad. It wasn’t a mystery who his mom was. She was the pretty blonde gal in the stands, smiling and crying all at the same time. The closer the boy and his dad got to the batter’s box, the more she jumped up and down.

I looked back at the boy. He had a plastic tube in his neck that must have been there to help him breathe. He also had a noticeable wet spot on the front of his uniform where it appeared that another tube protruded from his belly, like one of those tubes that a sick child is fed through. His dad, still in his worn-out work boots and dirty jeans, got down on one knee to hand the bat to his son. He communicated to his boy in sign language. It was obvious to me that he was signing: “You can do it, son, you can do it.”

The boy never swung, not even once, as more than ten balls pitched past him. To tell you the truth, I wondered if he even could. Suddenly, the umpire straightened up and yelled, “Run, run, go to first base.” The player and his dad held hands and struggled for first base. It seemed to take forever, but they made it. The umpire ran out to first base and yelled as he waved his arms in familiar fashion, “You’re safe!”

Wow, that was close,
I thought.

But before I could wake from my dream, the first base coach yelled, “Keep going!” as he pointed to second base and started to swing his arm like a windmill.

In the stands, I saw the mother again. She stood up, and her voice rose above the rest. She yelled, “C’mon, son, you can do it!”

So off the boy went. His dad continued to help him. It was almost too painful to watch as the simple act of running the bases seemed like such a struggle for the boy. The pair eventually rounded third base and headed for home plate. I was now screaming like the rest of the fans in the stands, acting like a fool as I cheered for the little guy.

His breath was coming hard now. The air sounded raspy as it passed through his tube. He was worn-out, but he had the hugest smile on his face. He was definitely having the time of his life.

The umpire was still out in the middle of the field, almost on purpose, as father and son crossed home plate. He nodded at me, letting me know that it was up to me to call the play.

So I did. I yelled as loud as I could, “You’re
safe
!”

The boy, so tired by now, turned and looked at me. I recognized the blond curls peeking out from his helmet. I saw that familiar face. I looked into the eyes of the boy I love and know so well. He was my son. The boy everyone was cheering for was my little guy. The father who was crying and hugging him now was my own reflection.