Dads, get out your notebook. Study his ways. Justin is worthy of being emulated. He is one of the best dads around. Selfless, affectionate, and willing to change diapers with his rough, callous hands from doing man’s work outdoors, providing for our family. He is equally gentle as he is strong. Listening to him talk about Jayden on Saturday was awe inspiring. I am so proud of him and the way he seeks to bring glory to Jesus in all he does.
Jayden loved “my dad” fiercely. This picture was taken days before he passed. Justin had stopped in from work for a few minutes, and received one of the greatest gifts, one of Jayden’s last smiles.
Here are his words from Saturday:
When we found out that Stefanie was pregnant with Jayden, my dreaming began. I was going to live out all my failed dreams through him. I wanted him to become a basketball star. So we started young. As soon as he was able, I was putting a basketball in his hands. When he started walking, I introduced him to dribbling. It was extremely odd, but he caught on to dribbling really quickly and easily. Before you knew it, he was able to alternate hands while dribbling without even looking at the ball. Then we started to work on shooting. I went out and bought a little tikes basketball hoop and the training began. I taught him proper form and to always follow through with his shot. At one point he could make 9/10 from my modified free throw line. This was going to be good. I was going to sit in the bleachers and be so proud of my son.
Jayden was all boy. He loved to dig holes. If you gave him a shovel, there would be a hole in minutes. He would dig holes in every place that I didn’t want him to. I would grab a shovel too and we would dig holes together. Every time, he would come over and look at my hole and then proceed to jump down into it and laugh. We would cover the holes back up and go look for new places to dig.
Jayden also loved trucks. I would come home from work and walk into the house and stretch out my arms wide and wait for his embrace. He would come running towards me and fake me out with some kind of football move and head outside right to the truck. We would then sit in the truck and I would watch him pretend to drive and honk the horn. We also had a Dodge Neon. I’ve never known anyone who loved a Neon like Jayden did. It became his favorite word to say. He would run around the house saying “my neon, my neon” in the sweetest nasally voice you could imagine. He would climb the bumper up to the hood over the windshield and rest on the roof of the car smiling, while saying his favorite new word.
On Friday nights in the summer I played on a church league softball team. Stef and Jay would come to watch me play. Every time I stepped up to the plate to bat, I would hear Jayden yell from the stands “my dad, my dad”. I couldn’t help but smile. He was proud of his dad. Little did I know at that point how much more proud I would become of him. Shortly after the season ended, we learned that Jayden and his infant sister Brooklyn were diagnosed with a rare genetic disorder called Sanfilippo Syndrome. Because of its regressive nature, I had to start dreaming new dreams for my son.
Our family and friends decided that we needed to have a new house that could be customized to fit Jayden and Brooklyn’s needs. Fundraisers started happening left and right. We did silent auctions, chili cook-offs, garage sales, pledge drives, 5ks, and even colored our hair purple. We even jumped out of a plane and skydived to raise money. Stefanie spent hours drawing out plans for this house. It would be perfect for them. The kitchen was our biggest concern. In our old home, Jayden would find the knife drawer often and accidentally turn the gas on to the stove. The only way to enter this new kitchen was through a child gate. Problem solved. The next day, I watched Jayden drag a chair over to the bar height countertop. Like a ninja he would easily scale over the counter and into the center of the kitchen. We just moved the knives above the fridge. We also knew that we had to have a fence built around the entire perimeter of the house.
A year before, I was busy doing something and turned my back on Jayden which seemed like only a minute or two, but he was gone. I went racing down the street calling his name. I ran to a neighbor’s house that had a Lake County Sheriff’s car sitting in the driveway. This was the right house. Turns out our neighbors were having a birthday party and Jayden wanted to celebrate with them. Luckily, the officer gave Jayden a police badge sticker and sent us home. We definitely need a fence. After it was installed, Jayden would walk the perimeter of the fence line everyday. We called him our security guard. No one came in or out of our yard without him knowing it. We felt safe when Jayden was on duty. We learned that there was a bright shining light in Jayden and there was nothing we could do to stop his light from shining. No gate, fence, or lock could contain it.
Somewhere in the middle of our house build, we realized that the room we designated as a guest bedroom would now become a fourth bedroom. We were so crazy about Jayden and Brooklyn that is seemed right to add to our family for a third time. Except this time, we had to surrender all completely to Christ. Not knowing if our third child would have Sanfilippo or not, we leaned into the love that Jayden and Brooklyn gave us and trusted that we would receive exactly what God had planned. We introduced Elliotte to Jayden and Brooklyn and they quickly showed her unconditional love, followed by a few bumps and bruises. Elliotte’s love for her brother started early and only increased as she spent more time with him. At such a young age, she too saw the light in Jayden that was so compelling she couldn’t resist it.
The light crept into our church too. High school students from our youth group started flocking to our house to be with our family. College students changed their majors. People were coming to Christ and they felt closer to Jesus when around him. It became apparent that Jayden and his sister needed a bigger room at the church to spread their love. So after attending a few conferences and reading a couple of books, Stefanie quickly created a special needs classroom for Jayden and his friends, called Oasis. It became a sanctuary for parents of special needs children. They could actually drop off their children and enjoy a church service for the first time.
I couldn’t help but feel closer to Jesus when I was around Jayden. It became very addicting. The more I fell in love with my son, the more I fell in love with Jesus. There was this unbreakable bond between them and I got a front row seat to watch it. Jayden was teaching me that this life is temporary and that there was something so much better waiting for us. But you have to choose to see it. Jayden became my daily reminder that this world is not my home. And my heart started to long for heaven.
As the years went on, the disorder began to catch up with his body. Everything began to slow down. Jayden couldn’t run as fast or climb as well. He couldn’t dribble a basketball as well either, but he could still do it. Becoming a basketball star was a distant memory now. God had much bigger plans for him than that. I couldn’t see that at the beginning, but it was very evident now. He was changing my life and the people that were a part of his. That was so much bigger and better than being a great basketball player.
Love became the thread that was woven through his story. He loved everybody he met and his smile always matched what his heart felt. I loved that about him. I wanted to love people the way that Jayden did. The way that Jesus did. Jayden prompted me to travel to Haiti to help bring fresh water to children who were dying from water-borne diseases. If I couldn’t save my own children, then at least I could help prevent other parents from losing theirs.
In the last months of Jayden’s life, he still smiled a lot. Despite what was happening to his brain and his body, he still laughed a lot. He still had the desire to dribble a basketball too. I would dribble the ball close to his hand and he would move his hand up and down with the motion of the ball. He fought bravely and loved fiercely. When Jesus finally called Jayden home early Monday morning, Stefanie and I had the honor to lay next to him and usher him into eternity. I could hear Jesus saying, “well done, my child.” I couldn’t be more proud of my son. I learned more from the short 11 years that I spent with Jayden than I could ever have dreamed of. Jesus became more real to me than ever before. Heaven’s tug on my heart is stronger than ever. I can’t wait for the day I get to see my Savior and my son. I can’t help but stand in awe of my Lord, my God.