A video of Kami Chapa singing her heart out to her dying baby boy went viral.
When her husband, Jason, asked Kami to sing the special song to their 3-year-old son Hayden, Kami thought there was no way she could do it, but, Kami recalls, "He had opened his eyes up right before, and that's when I was like, he's saying, 'Sing to me mommy.'"
And so, sing she did, pouring her heart and soul into the words.
"Here on earth, it feels like everything good is missing… Oh, oh, oh, I hope you're dancing in the sky."
This was the Chapa’s final memory with Hayden, and memories are not something they take lightly. Jason remembers when his son was a newborn.
"It's like, what else can we do to give this little guy experiences?" said Jason.
Hayden was born in September 2013. More than 2 months premature, he faced numerous health challenges.
Added to the normal preemie problems, Hayden was born with microlissencephaly, meaning he had a small head and a smooth brain. Hayden was also missing his knee caps and suffered from scoliosis. Hayden spent six weeks in the hospital, with Kami and Jason there every step of the way.
When it was time to bring Hayden home, Jason says of the doctors, “They told us to bring him home and love on him.” And love him they did.
That is not to say there were not some adjustments for the Chapa’s. Kami remembers the early days.
"It was a challenge. Everything was, but we went along with it. We found our normal with him,” Kami told 6 On Your Side. But it was a challenge these young parents were happy to take on. So, the Chapas set about making the most of the cards Hayden was dealt.
"We realized we had to create memories with him because if he was going to have a short life, we had to do as many things as possible with him,” said Jason.
Hayden’s size brought about some unique challenges as his parents sought to provide memories.
Jason modified a bicycle helmet for Hayden to go bike riding and four-wheeling with them.
"They don't make anything nearly as small as his head was. I went to a local bike shop, and this is a baby helmet, and it still was not small enough. So I had to put extra padding in there,” Jason explained.
Then, Jason modified it again. "After we figured out how to make it legal so we wouldn't get into any kind of trouble with that helmet, we'd put him right in between me and Kami and ride.”
At the end of the day, the trio had another ritual.
"He'd lay down in between us in the bed and we have a king-sized bed. He'd literally expect both of us to hold his hands at the same time. Sometimes he'd turn around and slap me in the face just to remind me he was there,” Jason explained.
The little boy doctors said would be a vegetable thrived in his own unique way.
Kami lovingly recalls when her son began to speak.
"He would say 'mama,' and he said 'dada,' and I swear he said 'I love you,'” Kami said.
The doctors who said Hayden would not be able to show emotion were also proven wrong again and again, as the 3-year-old loved laughing, kissing and spending time with his great grandmother.
Now, though these parents are grieving, they find comfort in what Hayden brought to their lives.
"He's really made us not take life for granted, and every moment counts," Kami said.
And while the Chapas still grieve for Hayden, they find comfort in the fact that many others also loved their perfect baby boy.
"Even if I wasn't with Hayden, I'd go into a store or office and people would say you're Hayden's dad,” Jason said.
When Hayden fell into his final, peaceful sleep, hundreds turned out to celebrate his life.
Jason and Kami decided in the hours after Hayden’s death, they would use their experience to help others.
"He was a gift on this earth for us, and he forever changed us and will make us better persons no matter what,” said Jason.
He continued, "Right after he passed away, we realized this is something we've got to do. And it's going to be hard for a while but there are people out there that need our help."
The Chapas are now working to start a nonprofit organization called Hayden’s Helpful Hands, to create special tools for other families like theirs. Anyone who wants to help, can email haydenshelpfulhands@yahoo.com.
While visiting the Chapas, 6 On Your Side, showed them another memory to add to the list, a personal message from the singers and songwriters of Kami’s special song to Hayden.
Canadian recording artists and twin sisters, Dani and Lizzy, said to the Chapas: “We wanted to connect with you once we heard your story and just let you know we were so touched by it. We wanted to give you our deepest condolences and also our love and support for the family and for Hayden. And also let you know you're in our prayers. We're praying for your peace and praying for your strength."
The duo’s song is called “Dancing in the Sky. When we reached out to Dani and Lizzy, they sent the Chapas a special video.
Jason and Kami watched in shock and said the message was awesome.
