The following is an excerpt from Live Like Sean: Important Life Lessons from My Special-Needs Son published January 19, 2021 from Greenleaf Book Group Press.
Praise for Live Like Sean
”Live Like Sean is a wonderful book that, like Sean himself, will stay in your heart long after you turn the final page.”
—Harlan Coben, New York Times best-selling author of The Boy from the Woods
”A book for anyone who has ever been fiercely inspired by a child which should be everyone.”
—Mitch Albom, New York Times best-selling author of Finding Chika
My beloved son, Sean Timothy Nelligan, died at the age of 29 on Father’s Day in 2019. As I was writing his eulogy, I noticed a recurring theme. Each time I wrote down a little story about Sean that I wanted to share with my family and friends, I found myself encouraging everyone to try to live more like him. I told the room of almost a thousand people: “Live like Sean every day and you will make the lives of others so much better, and it will make you feel better also.”
Shortly after the funeral, I had golf balls imprinted with the saying “Live like Sean.” I gave them to my family and golfing buddies to remind them (and myself ) to be kind, be happy, be brave, be honest. To be like Sean. It became clear to me that my boy, who couldn’t read or write, had tried to teach me, by his example, so many valuable life lessons. They were lessons that would vastly improve my life, if only I could learn them. It is an ongoing process. I want to live like Sean—not when it is easy, not when it is convenient, but every day. I am trying. I try each day to be more like this boy who is my hero.
This book is my attempt to share those lessons with you and to preserve the memory of an outstanding human being whose legacy is not counted in material assets but in love.
As I write, I imagine my primary readers are the family members and friends of children with special needs, and I hope that my experiences, challenges, and joys help you to find a path of hope and potential with a special-needs* child. Of course, I realize that not all special-needs children are like Sean. All children are different; some are loud, some are quiet, some are outgoing, some are shy. But the lessons from this one child have something to say to all of us. In fact, I am sure that these lessons can be useful to everyone, not just special-needs families and their constituents. This is a story about Sean, but I have no doubt that his life adventures illustrate for any reader how a family heartbreak can, in fact, be a blessing.
It took me a long time to realize that we were the perfect family for Sean. And he was the perfect child for us. Our heartbreak turned to acceptance and then joy when we learned to see the world through Sean’s eyes, not our own. It is my hope that this book will do the same for you.
When I began this journey as the parent of a child with special needs, I was filled with anger, disappointment, and even rage. I wondered how I would be able to live with a child with so many issues. Now, I wonder how I will be able to live without him.
This book is my attempt to hold on to and to share with you what remains—Sean’s spirit, his attitude, his love.
* There are many terms to identify those with intellectual or different abilities. I am most comfortable with the term “special-needs children” and will use that term throughout the book.
Chapter 1: Be Grateful
Gratitude? I didn’t have much of that in my young adult life before Sean came into it. As an entrepreneur in a capitalistic society, I always wanted more. I spent my days wondering how big I could grow my company. How many more employees could I hire? When a life is built on working 10 to 12 hours a day, there isn’t much time to think about gratitude.
Then Sean was born. When his mom, Maggie, and I realized that he was a “special-needs” child, I can tell you that my heart was still not filled with gratitude. I felt many emotions. Anger and fear were at the top of the list, but gratitude was nowhere to be found.
The extent of Sean’s developmental issues revealed itself slowly. After his birth, we took home what appeared to be a perfect, healthy newborn. There was no indication of the trouble ahead. The first sign appeared at six months; changing his diaper, we noticed that sometimes his leg would spasm. We took him to the hospital, where the doctors said it was probably just a muscle spasm. But I knew that was not it.
I spent the night in the hospital beside his crib with a video camcorder, waiting to record a spasm. When I showed the tape to the doctor the next morning, he confirmed that Sean was having seizures. That’s when the rounds of testing and doctor visits and antiseizure medications began.
After the initial shock and hurt, I think my emotions just froze. At first, I got through each day by putting my life with Sean in a compartment called denial. I told myself: It’s going to be fine. It’s going to be fine. It’s going to be fine.
The End of Denial
When Sean was about two years old and his developmental delays were becoming more alarming, a friend recommended that we see the world’s top neurologist, a professor at Columbia University College of Physicians and Surgeons and a pioneer in the field of child neurology. It took a long time to get an appointment, so I was able to stay in my world of denial a bit longer. But finally, on a Saturday morning, Maggie, my mother, Sean, and I went to the doctor’s home office in Englewood, New Jersey.
As we sat in the waiting room, I was silent. The doctor had already received the test results from Sean’s other doctors. He knew about the seizures and had the EEG test results. Now, he wanted to talk with Sean and observe him. He watched how Sean walked, how he talked, how he reacted to various stimuli. He spent a good hour with Sean, and then it was time for the verdict.
Sean stayed in the waiting room with his grandma while Maggie and I went into the office. The doctor was behind his desk while we sat on the other side feeling frightened and insecure. I looked at all the diplomas lining the walls and the shelves of books the doctor had authored, knowing this should make me feel confident and at ease, but all I felt was scared. The fact that this man was so well respected in his field meant that I was going to have to accept what he said, and I had a sinking feeling he wasn’t about to give us good news.
It was immediately clear to me that the doctor knew what he was doing. He was all about the facts. But he had no bedside manner. There was no softening the sharp edges. He had seen children like Sean many, many times in his career. It seemed that, to him, Sean was just another intellectually and developmentally damaged child. He matter-of-factly explained that Sean would never live a normal or average life. He would never fit into mainstream society. He would definitely not be able to graduate high school or go to college and, most likely, wouldn’t be able to have a meaningful job.
As we left the office, I don’t remember exactly what I said to the doctor in response to this news, but I’m absolutely sure it wasn’t “thanks.”
On the ride home, we couldn’t speak. Even little Sean sat still. What words were there to accept what we had just heard? What words were there to explain how we were feeling? Those words don’t exist. We were all silent.
That night, after Maggie put Sean to bed, I went into his room and shut the door behind me. I gripped the edge of the crib and looked down on my sleeping child. I asked him, “How are we going to do this?” And then I cried and cried.
Acceptance At Last
Finally, I had to accept that that there was a problem, and Sean wasn’t going to be okay. I couldn’t keep Sean in a neat little compartment in my mind anymore. There would be no more “work goes here, marriage goes here, Sean goes here.”
That was when I felt the true burden of disappointment. Getting this news about Sean shattered my expectations. It was the death of my dreams for my first child. My son. Sean would not be the starting pitcher for his baseball team. He would not play a musical instrument in the school band. He would not get married and have children of his own. The Nelligan name would not move on through him to the next generation. He would not live a life that I thought he deserved. My heart was broken. What did I have to be thankful for?
Although no parent wants a child to have a difficult life, and many of my feelings were rooted in this worry about what would happen to Sean, I admit that some of my emotions were coming from my fear about how he was going to negatively impact my future. Raising a child with multiple disabilities sets the parents on a long, winding journey with no road map or even a clear destination. There are years and years ahead of nonstop visits to doctors, speech therapists, occupational therapists, and physical therapists. Then there are tests, evaluations, hospitalizations, medications. And so much more. I don’t remember even once thinking “thank you.”
I realize now that gratitude is the foundation of happiness. The two go together. And perhaps that is why in the first decade of Sean’s life, I had neither. I was too busy protecting him. In doing so, I’m sure I lost many opportunities to enjoy him and thank God for him, but at that point I couldn’t do anything else. It was like carrying around an egg that could drop and break at any wrong turn. His mom and I felt that we needed to protect him from getting hurt—physically and emotionally. We wanted to protect him from hurting himself, not only when he stumbled, which was often, but also from people who might say mean things to him, from an educational establishment that didn’t understand his needs, from a world where he wasn’t “normal.”
This was going to be a hard and long road—for me. At that time, I couldn’t see that the shattered dreams were not Sean’s dreams. He was not angry or disappointed. He seemed quite happy to be alive. Every day was a great day. Going through the thousands of pictures of Sean while preparing for his memorial, his sister Meghan noticed that he wore his wide and wonderful smile in every single photo. (Well, except for the one in which his sister Moira is using him to practice her hair-cutting skills.) He always carried himself through each day with joy and, yes, with a sense of gratitude that astounded and confused me.
I felt confused, probably because I never really knew what gratitude meant until Sean taught it to me. That is ironic because I’m sure that people who didn’t know Sean would look at him and think, “What does he have to be thankful for?” However, his sense of gratitude wasn’t the result of an easy, protected life—not at all. Sean suffered emotionally and physically through those early years: the years of physical therapy, when he was learning to walk with leg braces that hurt so much. The years of speech therapy, when he lived with the frustration of wanting to communicate but being unable to form words or write letters. The years of confusion, when he seemed to be hesitant to be involved in the world around him.
A Change Of Perspective
Despite his struggles, Sean was able to have so many of the things we all want to have and should take the time to be grateful for: kind and helpful teachers, good friends, loving sisters, a supportive family, a passion for sports and music. Those things filled Sean’s heart with happiness, and his ability to truly appreciate the important things in life showed me how my own lack of gratitude for these same things made happiness impossible.
I couldn’t feel grateful because I believed that I was somehow entitled to a “normal” child. But Sean didn’t feel this way, so his gratitude came easily. It wasn’t until years later that I saw in his happiness and his acceptance of the life he had been given that the neurologist was 100 percent right. Sean was never going to be average. He was exceptional.
Sean stood tall and rose above the doctor’s dire predictions because he never felt gypped. He didn’t feel that he was missing out on anything. He had no expectations or sense of entitlement. From his perspective, he wasn’t cheated by life or given less than anyone else. In fact, he seemed to know that he was given more than most of us will ever have. He entered every room with his signature smile, making everyone he met feel special. He didn’t apologize for himself. He didn’t want to hide so no one would know he was “different.” As he grew into his teens, Sean walked around like he was the mayor, saying hello to everyone, giving out hugs, handshakes, and compliments: “I like your new haircut.” “Those are nice shoes.” “You are a good friend.” He would say these things with a confidence that was unimaginable a decade earlier. He showed his gratitude for everything in life by living that life with joy, contentment, and acceptance. And I was learning to do the same.
Live Like Sean
I have begun this book with a lesson about gratitude because, in my experience, it is the hardest lesson to learn. It takes the longest to learn. And yet it is the most enduring lesson and is now the foundation of my happiness. I am truly grateful for every memory—the painful and the joyful—that highlights Sean’s relentless efforts to show me a way through my own heartbreak and to have gratitude for our life together.
I realize that each special-needs child is unique, just as all children are. Some are naturally happy; some are not. Some are outgoing; some are not. And so on. Therefore I don’t pretend that just because Sean was able to wake each day with an attitude of gratitude that this is the case for all children. However, I do believe that all special- needs children offer us the opportunity to see the world with new eyes—their eyes. It is the world in which they live; they know no other. For Sean, that gratitude grew out of his ability to live a happy and meaningful life with his family and friends (and to see the Giants win the Super Bowl).
For me, learning how to be grateful didn’t happen like a bolt of lightning. I had to absorb that lesson over time. Learning to live like Sean started when I slowly began to see the world from his point of view, rather than through my own lens of disappointment.
If you are a family member of a special-needs child, I don’t expect that after reading this you will suddenly feel grateful. But there are some things you can begin to do:
- Give yourself the chance to actively and consciously look for moments to say “thank you.”
- Let those small moments contribute to growing the hope for future happiness.
I hope that together, we can move through each of the upcoming chapters from a place of despair to a place touched by gratitude.
I can finally answer the question that I had asked a million times: Why would God give me this child? Twenty-nine years later, I know the answer. I had a lot to learn about living a good life built on a foundation of gratitude, and I needed Sean to teach me. For this gift, I am forever grateful.