By Patty Holliday, as told to Jennifer Clopton
I belong to a club no one wants to join: I am a parent who has lost a child. This year marks 14 years without my son. Fourteen years of living in a quiet sort of pain that will never stop and will never go away.
Jacob was my firstborn. He made me a mom and opened me up to the kind of joy and love I’d never imagined. Then, after just 4 short years with him, he died, introducing me to a level of grief I wish I didn’t know existed.
Our boy was born with a heart defect. At 3 days old, he had open-heart surgery, and at 9 months old, he received a heart transplant. That gift of life gave us 3 more years with our Super Jake, and I do believe we made the most of every minute. Shortly after his fourth birthday, after developing a cancer common to transplant patients, he passed away.
Our Jacob was gone.
Fourteen years later, the pain still goes deep. I’ll never hear his voice or touch his sweet skin. I’ll never get to watch him grow up. That level of gut-wrenching grief doesn’t just go away. As time marches on, the deep, searing cuts in your heart scab over a little, and the pain mellows at times to a dull ache. But the passing time can also create additional wounds that bring a different kind of pain. You even question your seemingly healthy way of dealing with the loss.
Why don’t I still cry every day? Does this mean I didn’t love him that much?
How can I laugh and carry on or get mad about unimportant things when, you know, my child is dead?
Shouldn’t the world have stopped on Oct. 20, 2005? Why are we still breathing and laughing and loving and existing when HE ISN’T?
Here I am, almost 14 years out from the worst day of my existence, and the loss is still prevalent in my life. But over time I’ve also realized that my boy’s memories have turned into something so precious, beautiful, and healing.
I had a sense of purpose almost immediately after his death when I realized I wanted everybody to know about him. That was what got me up in the morning after he died. In many ways, it’s kept me going to this day. I started journaling online, and that led to blogging about him. I would write the URL of my website on little pieces of paper and leave it in random places, hoping people would find it and read about him so they would know his name and his story.
A few years after he passed, I discovered that there’s place where I can still feel his presence: Walt Disney World.
We had moved to Orlando when Jacob was 2, and back then, annual passes were quite affordable. So we went there whenever he was well -- at least once a week.
Our boy was also a train fanatic -- they were his obsession -- so whenever we’d head into the Magic Kingdom, the first thing we always did was ride his favorite train around the park.
After his death, our family moved to Texas, so it was about 5 years before I returned to Disney World. As I walked through the opening gate, I heard my boy’s favorite train pull up to the station. When its whistle pierced through the air, my heart jumped. It was like Jacob saying, "Hi Mom. I’m here, too."
That beautiful feeling and intense connection to our special place turned some of my grief into purpose, and it led me toward a new passion. I became a travel agent and a blogger specializing in Disney vacations, and now my job requires me to return to the park several times a year. Visiting our literal "happy place," where we had so much fun and so many adventures, keeps me feeling connected to my child, and it’s helped me process some of my grief.
Whenever I go to Disney World now, the first thing I always do is hop on the train and take it around the park. That is how I remember my boy, and that is how I can still feel close to him. Often I will post a picture of “our” train ride on social media. And now, people who know our story and have seen my posts hop on the train when they visit the park and send me pictures of their families riding it in honor of Jacob.
Some people worry that mentioning Jacob will bring up a fresh wave of grief within me, but I just love when people remember him. Little things go a long way to show us that you know our child was important. That though his life was short, his impact was great and, most importantly, that he is still deeply loved and never forgotten.
Here’s the thing: It’s important to parents who’ve lost a child that you remember our children. Speak their name, remember their birthdays, do random acts of kindness or run for a good cause in their honor. These little gestures add up, keep our child’s memory alive, fill a bit of the giant hole in our heart, and remind us that we aren’t alone, especially on those days when it feels like we are.
Jacob would have turned 18 this year. He would have been a senior in high school. There is still a loss and an empty spot at the kitchen table that will never be filled. I still have days when I feel mired in sadness, and I allow myself to experience those feelings. But now there is something else, too. Some of our deep loss has turned into something joyous and fun, thanks to our special place, and my boy’s memories are at the heart of it all. I feel it every time I return to Disney World, see a picture of a friend there, or plan a trip for a new client.
To anyone else who joins this club, I am deeply and profoundly sorry. Please know, as awful as it is, you aren’t alone. Know that there is no right or wrong way to deal with a loss. There is just your way. So find a support group. Talk with a professional. Sit on the couch and cry when you need to, and then get up and go find that special place -- your train ride at Disney World -- where the memory of your child comes to life, clutches at your heart, and brings a real and genuine smile to your face.
Patty Holliday lives in Northern Virginia with her husband and four children. She is a travel agent who specializes in Disney vacations and has been blogging since 2009 as the author of My No-Guilt Life . She can also be found talking about her favorite Fandoms on the No-Guilt Fangirls Podcast . You can follow her @noguiltlife on Facebook, Instagram and Twitter, and you can honor Jacob by becoming an organ donor at donatelife.net.