Chicken Soup for the Soul: Children with Special Needs (5 page)

Through the years, Jay, as he is called today, and Pa-Pa continued those weekly phone calls, along with letters, cards, fishing trips, and frequent trips to Wal-Mart. They became “best buddies.”

When Jay was nineteen, his beloved Pa-Pa died unexpectedly. One of the hardest days of my life was watching Jay stand at his Pa-Pa’s graveside as he was presented the American flag that draped the casket. But one of the things I cherish most is knowing that Jay’s unconditional love built a bridge to his grandfather’s heart and changed both of their worlds forever.

Louise Tucker Jones

Louise Tucker Jones
is a vibrant speaker and award-winning author of
Extraordinary Kids
(coauthor, Cheri Fuller). Her son Jay has participated in Special Olympics Art for most of his thirty-one years and has won numerous ribbons and trophies for his photography. Louise resides in Edmond, Oklahoma, with her husband, Carl, and son Jay, the youngest of their four children. Contact Louise at [email protected] or
www.LouiseTuckerJones.com
.

“My grandkids keep me young alright. I don’t know
whether to throw a tantrum or take a nap.”

Reprinted by permission of Jean Sorensen and Cartoon Resources. ©2005 Cartoon Resources.

Out of the Mouths of Babes

Our boys, Devon and Kaleb, had been with their Nana and Grandpa all day long while I was at work. When I arrived to pick them up, Devon immediately started to recant the list of the day’s events in his usual manner, basically telling me everything for which he had gotten into trouble all day long. When Grandpa got down on his knees to give Devon his good-bye kiss, Devon stopped him with a little outstretched hand and simply stated, “What happened to Grandpa’s hair?”

I quickly muttered, “He lost it.”

Devon started looking around to find it, when he found his answer. “Mommy, it’s okay. Look! It’s all on his back!”

Sarah and MMC John S. Smigal

John and Sarah Smigal
, along with Devon and Kaleb, are stationed in Groton, Connecticut, where John is a chief aboard the USS
Hawaii.
Devon was diagnosed with autism in 2006. Devon has conquered a great many things since his premature birth, and he is destined for greatness.

Tomorrow

T
o love is to receive a glimpse of heaven.

Karen Sunde

“What doing tomorrow?” asked my son, Jeff, whose speech lacked some of the necessities required to form grammatically correct sentences.

Lately, these were the first words from his mouth almost every morning. Jeff had already known what we would be doing that day because he had asked yesterday. I soon realized that he understood much more than I had imagined.

Jeff was born with Down syndrome. At age eleven, he was diagnosed with acute lymphatic leukemia (ALL). This disease required a specific regime of treatment every day. Sometimes it required a hospital admission for chemotherapy. On other days, it required an outpatient visit to the hospital for IVs, spinal taps, or blood tests, and other days would involve frequent administrations of medications that tasted like aluminum foil. Sometimes, unexpected complications required further tests, procedures, or medications. I did not think that Jeff would understand the reasoning for so many things that only made him feel worse, but he did. Asking about tomorrow was his way of preparing for what lay ahead, and I always felt that I owed him complete honesty. We both clung to the hope of tomorrow—not like the tomorrows of the past or the present, but the hope of a new tomorrow that would allow for
living without sickness or pain.

Jeff had changed, not only physically, but in his whole personality. The light that had always twinkled in his eyes was gone. Our interactions seemed always to reflect our caregiver and patient relationship. This disease saturated his spirit. He knew what I would not allow in my deepest thoughts.

We were once in a waiting room waiting to be called in for a blood test. The nurse came out and called Jeff’s name.

He responded, “No, no Jeff, I Jack.”

It was heart-wrenching to see my little boy trying to assume a new identity. How I longed to press rewind to take us back to our lives behind the white picket fence— back to the days of laughter when Jeff would get off the school bus and come running up our driveway.

“Wilma, I’m home,” he would shout as he walked into our front door, borrowing the line from Fred Flintstone.

Jeff also liked to pretend that he was the scarecrow from
The Wizard of Oz.

“‘Over the Rainbow,’ Mom, sing it,” he often requested.

He watched the video so many times I think I knew the entire script by heart. Through Jeff, I was able to see the Land of Oz. He opened my eyes to the vibrant colors of a majestic land where trees could talk, scarecrows could walk, and horses were of many colors. Everyone was different, yet no one noticed. My heart would tingle with what I can only describe as a surge of joy each time I saw Jeff perform this song.

But my favorite performance was “Tomorrow” from the musical
Annie.
With his arms stretched out wide, and a simultaneous jerk of his head and hands, Jeff would sing out loudly, “Tomorrow, tomorrow, the sun tomorrow.” He was quite a performer and always willing to entertain.

When Jeff was first diagnosed with leukemia, I had no idea how to explain to him that he would not get well for a long time. What the doctors called “Phase One” of treatment, an intensive phase to say the least, was to last six months, before progressing to the next less-intensive phase.
How could I explain that to my little boy?
It soon occurred to me, once again, that I did not have to. Jeff would be my teacher. My challenged little boy was also my most influential mentor.

Jeff had been feeling sick since the beginning of his treatments. As the days wore on, I tried desperately to raise his spirits and give him hope. At this point, I had to carry him into the bathroom because he was too weak to walk.

“I very sick, Mom,” Jeff said, while standing in the shower with my support.

I replied, “Tomorrow, we will see the doctor, and he will make you feel better.”

With his head hung down, Jeff replied, “No, I die.”

In desperation, I grabbed his chin and raised his head to meet my eyes. My body trembled. I struggled to speak with confidence. I needed to reassure not only Jeff, but myself as well. “You are not going to die! Do you hear me? Do you understand? You are not going to die!” Jeff did not reply.

He knew and accepted what I could not.

After ten weeks of chemotherapy, my son developed an infection. He was hospitalized for six days before the infection became worse, and he had to be moved to the intensive-care unit. Despite his pain and suffering, Jeff began to teach me new lessons. He had taught me countless lessons about living, and now he was teaching me about dying.

The doctors were getting ready to intubate Jeff to help him breathe. I think on some level we both knew that once they placed that tube in his throat, the end was near. With all of the strength he could muster, Jeff looked at me and said, “Tomorrow, tomorrow, you and me go shopping. Okay? You and me. Okay?” This was his way of telling me that he could no longer deal with “his today,” and that he was going to “his tomorrow.” He wanted the pain to end. I contracted every muscle in my body and demanded myself to stop the trembling. I prayed for one last moment of peace so that I could answer my son with the respect that he so deserved.

“Yes, Jeff,” I said. “Tomorrow, just you and me, tomorrow.”

The doctors paralyzed him and placed the tube in his throat. I watched the numbers on the machine gradually decrease as it measured his heartbeats. With one finger, I gently swept Jeff’s hair back across his forehead as I sang softly. This was the usual routine, one that he was so fond of, that I had used to get him to go to sleep when he was younger. Knowing that these would be my final moments with my son, I told him that if he needed to go, it would be all right. And with my cheek against his, I whispered in his ear, “I’ll meet you just over the rainbow, tomorrow.”

Jill Presson

Jill Presson
has worked in occupational therapy for over ten years. She is the proud parent of four children, two biological and two through the gift of adoption. Three of Jill’s children have Down syndrome. She is an active advocate for Down syndrome, special-needs adoption, and grieving parents. Jill can be reached at [email protected].

No Words

T.J. struggles with the pencil in his left hand, pushing it carefully up and down on the notepad that sits in his lap. My middle sister, Kellie, has asked him to write the word “Mommy” on the paper to show my younger sister and me what he has recently learned in school. The pencil stops moving. T.J. yells “Mommy!” and turns the notepad around to show us the scribbled letters M-O-M on the paper. We all clap and cheer at his accomplishment, and we watch as a proud smile spreads across his face. This may seem like an insignificant feat, but for T.J., it is a milestone. He has just learned how to spell “Mom,” and he is ten years old.

My little brother, T.J., was born on my first day of high school. My parents were in their early forties at the time, and it was a surprising situation for all of us to have a new baby in the house. My dad, Tom, was the most excited of all, since he finally had a boy to balance out his houseful of women.

When he was three, my family discovered that T.J. was not developing language skills at a normal rate. The doctors did not have any answers as to what could be causing the delay.

T.J.’s disorder put a strain on my family, and our household could be a tense place to live during some of the years that followed. As my brother got older, it became more apparent that his disabilities reached beyond simple language skills.

My mom spent a lot of her time trying to find a solution. My dad reacted in a very different way. He embraced his chance to be a father to his son. They would go for haircuts, hang out at the mall, or just drive around listening to sports radio in the car. T.J. loves these outings with our dad, and the minute he returns from work, my brother pulls on his shoes and waits by the door. He and my dad have developed a bond that goes beyond my brother’s “problem,” and have become buddies who struggle every day to maintain a semblance of normalcy.

There was one day in particular when I realized that my father had fully accepted T.J. for who he is, and it was this same moment in which I saw the true depth of my father’s love for my brother. We were sitting on a bench by the lake—the three of us—and my dad was making funny faces to make my brother laugh. In the midst of the laughter, T.J. stopped and reached up to softly touch our father’s face. My dad looked down at him and said almost so softly that I couldn’t hear, “Well, kiddo, it looks like it’s you and me for the rest of my life.” There wasn’t a sense of sadness or burden in my father’s voice, only acceptance and unconditional love for the little boy who sat beside him. It seemed that T. J. understood this, too, in his own way, and he smiled and touched our father’s face again.

T.J.’s condition has yet to be fully diagnosed. My parents continue to help T.J. express himself with words, pictures, and sounds. My dad and T.J., however, have become a duo, and when it’s time for them to go “cruising” in Dad’s car, we all know that it is strictly boys’ night out. The women in our house know that T.J. loves all of us, each in a different way, but the love he has for his dad is written in a language only he understands. All of us have the privilege of speech, but only the two of them speak
their
language, and it requires no words.