"Love, Kennedy" - An Inspiring Story of Faith with Jason & Heather Hansen

Jul 03, 2019

"Love, Kennedy", produced by TC Christensen, is the incredible true story of Kennedy Hansen, a remarkable young woman who succumbed to her battle with Juvenile Batten Disease at the age of 16. Kennedy left behind a legacy of love and friendship.

Her parents, Jason and Heather Hansen have turned pain into purpose as they share their inspiring story of not only loss but incredible love. Their miraculous journey is one of hope and faith, and one that has impacted millions of lives around the world. 

  • (02:00) We've been married 23 years. When we first got married, I was going to school, Heather was going to school and working before I graduated. During that process, Heather got pregnant with Kennedy. The miracle of that was that at the time we didn't know that we would never be able to have any more children biologically. We were not planning on having children at the time. So that was a miracle in itself, that we even got pregnant as we were trying to prevent.
  • (03:10) Kennedy wan't perfect, but she was a delight. She was so easy from day one. And even when she was born, she just came out and kind of looked around and didn't even cry, just kind of made a little squack and smiled. From day one we really wanted to have six kids and we tried everything that we could. Then they finally said, well, you're just not going to have more kids. So with that we were blessed enough to adopt Anna, who's now 22 and Beau who is now 11.
  • (04:00) Kennedy was diagnosed with terminal batten disease and a year later we held her funeral. But through that journey we looked back and we saw all these miracles that have happened. We really didn't realize we're a preface a to her touching millions of people. And she used to always tell us, "Mom and dad, my story will be shared with the world." We'd say, "What are you talking about be shared with the world? That's so cocky." She would tell us, "You just, you don't understand." She didn't know how to explain it. And we didn't understand until everything kind of started unraveling and thought, well this is what Kennedy was talking about the whole time. We just didn't see the whole picture. But we're seeing it now and it's been a blessing to us as her parents because it's been blessing lives of a lot of other people. And that's what brings us true joy and happiness through our journey with Kennedy and the struggles that we had to go through with her and her disease. 
  • (06:10) When I was 18, shortly after high school, I actually had a dream where I saw Heather and Kennedy in my dream. I was just a kid and I had this dream several times and I didn't understand the dream but in my dream, I get this enormous hug from Kennedy and, she's probably about three years old. So then you fast forward all these years and one day when she was three years old, I'm sitting there thinking about it and I'm like, oh my gosh, that's her. 
  • (15:21) We sat down as a family after we found out what Kennedy's disease was and what it was going to involve. And we talked about it and had an open discussion with our children. And when we were alone we had to decide, are we going to let this build our family and strengthen us and use it for something good to inspire others, or are we going to digress and are we going to fight about it? Are we going to just huddle in our house and not expose ourselves to anybody and not share our experiences? We each decided that it was best for us to have hope and use it as a tool to bring goodness to this world and to each other.
  • (16:11) Jason and I grieve differently and we know that and we accept it and we let each other do what we need to do. And we have that understanding so that it doesn't pull us apart. Roughly 80-90% of couples that have a child with a terminal illness or something very severe end up in divorce. But for us, we decided ahead of time and before things got more difficult what we were going to do and how we were going to help one another through this as a family rather than let it tear us apart.
  • (17:27) Kennedy was declining for years. Four years before she passed away I was told that she was going home. I was told specifically that one morning when I was praying. I went to Heather and told her. It took me a couple of days but I said, "This is the experience I had and Heavenly Father needs Kennedy home. I don't know if she's going to get hit by a bus. I don't know if she's going to get disease. I don't know." At the time she was 12 years old and she had started to lose her eyesight and started to have some learning disabilities, but socially and everything else, she was still boy crazy, she was still in sports, she was still is doing all of this stuff. So we didn't assume it was a disease. So when I told Heather, Heather said, "No. I can't accept that. There's no way." Because her mom died from cancer when she was 15 and Heather took care of her and that was brutal on her family. I only shared that experience with a few other close people to me that were friends and family and even had a meeting at our house.
  • (19:07) I said, "I'm having this meeting because I don't know if I'm going crazy, but I've truly felt this." I felt that the people that were in the meeting were the people that would be my greatest support and unfortunately, one thing I've learned is you have what's called rescuers and then you have what's called life firsts. And rescuers are the ones that when all the crap hits the fan, they will run to you and they will try to do everything they can to help you the most. The rescuers go away. Lifers are there forever. They're there no matter what. But in that meeting, there were some that behind my back for those years where like "Jason's losing his marbles". So I carried that burden for three years alone. 
  • (20:35) We pray every night and every night for those three years. I would say "You need to get ready." That and that everyone would accept and believe he had that experience. Beause I knew in my heart he did, but I didn't want to accept it. So I would just tell him, "No, I'm not going to accept this. I just do not want to accept it." As we got closer and as things happened, it was about six months before the diagnosis and we had said prayer one night and gone to bed. And in the middle of the night at maybe two or three in the morning I woke up. We have a little cubby in our room with some sitting chairs and Heather was sitting in one of the chairs crying. I went over to her and asked "What's going on? Are you you okay?" And she said, "I was awoken. It's been confirmed. We're going to lose Kennedy." And I finally was like, oh yes, because I carried it alone for so long. Now we were together. 
  • (22:41) Kennedy was almost fully blind. She was losing some mobility and having seizures and cognitive delays. We wanted answers, but now we knew. We both know we are going to lose her, but we still didn't have the diagnosis.
  • (23:16) On June 5, 2013 I was gone with a group of scouts in Moab. Heather was home and we got the test result back through a phone call. It was terminal juvenile batten disease. Heather called me and we talked. I was in the middle of the desert. I don't know how my phone worked. It wasn't supposed to work, but it worked. Another miracle. We said, we're going to live a million lifetimes in a year. And we both felt it would be a year. We both had this overwhelming feeling. She's got one year to live. Her funeral was held a year later. 
  • (24:49) Kennedy did not want her story shared for all the wrong reasons. She didn't want to be famous. She just wanted to share her journey to be able to help others, to be able to give hope. Look at all the small little things and be grateful for those little things because somebody else's situation is a lot worse than your own. Sometimes we can get so wrapped up in looking at the difficult things we're going through that we cannot see the light and the hope and the little miracles and the tender mercies that are present every day. But if we just take time throughout the day to focus on those little tiny things we're grateful for, it changes our perspective on the whole journey and gives us the hope and the strength that we need to be able to overcome and go through the difficult things we have to face in life.
  • (26:17) The greatest statement I ever heard from someone about Kennedy was around her funeral, and it was from somebody that I didn't think was that close to Kennedy, but he said, "She was my best friend". She was everybody's best friend. 
  • (28:09) Her ability to love everyone no matter what their circumstances. She didn't judge others. She didn't care if they were the same religion or the same color or if they didn't come from the same type of family or they weren't fit enough or pretty enough. She never ever judged anybody like that. She knew and wanted to know their hearts and accepted everyone and that was an amazing gift and ability that she had. Her ability to love and show love and acceptance for all was one of her greatest gifts.
  • (30:57) People wanted to be around her. Towards the end of her life I was like, can we get these people out of our house so I can have some dad time? There were thousands of people, not hundreds coming in and out of the door of our house because everybody would hear about her. We had people drive. She was in tune and she loved everybody. She was famous for hugs. She would hug you no matter what, even if you didn't want a hug, you were getting a hug. She grabbed you and would squeeze you like crazy. 
  • (33:42) The purpose for our family and for continuing to do what we do and share our journey is just to bring that hope to people, to let them know that there is a greater plan for each one of us to have faith and to just trust in whatever it is that you believe. Just put trust in that never doubt who you are as an individual and that you have potential as well to change everyone around you and to be a light for goodness in this world. There is still so much good and sometimes it's hard to see that with all the bad and the the negative being thrown at us. But we can be strong and we can make a difference like Kennedy did, each one of us and make a good positive impact on one another. And that's what's really the most important. That's what we should really, truly be focusing on.
"Enjoy the chaos, because you'll miss it."
  • (40:56) Do not be afraid to share your story because you never know a life it could change or life it could save. And we've seen that hundreds of times. You'll know when to share it. If you have a belief in something then pause and listen and you'll be prompted who to share it with.

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