Adolescence is a rough period for everyone and in Micah Douglas’ case, he was no exception. However, among the common struggles of puberty, Micah also had a father who was diagnosed with a terminal illness. Seemingly overnight, Micah had to mature at a rapid pace compared to his peers. Leaving him with a rather unique perspective of life.
Micah and his dad, Chris
Micah Douglas was shoveling the driveway with his dad when his father suddenly stumbled and fell down. At first, Micah didn’t think anything was wrong with his father and joked that his dad was “getting old. Like you hit 40 years old and you can’t even shovel a driveway.”
This moment would be remembered differently when a family counselor and their pastor came to their home to help break the news to Micah and his siblings that their father was diagnosed with ALS (Amyotrophic lateral sclerosis). Douglas was pointed out in the meeting for probably noticing his fathers symptoms the most because he often did yard work with him.
She considers herself fortunate for being so close to her father’s treatment facility because she almost attended the University of Florida, a college a few hours away from her family’s home where most of her relatives before her went. Nicole wasn’t accepted into the college but went to the University of South Florida because it was next on her list.
While only in middle school at the time of receiving this news, the roles had to be reversed and Douglas became a part-time caregiver for his dad because his mom “was a full-time caretaker, but every once in a while my mom wanted a break.”
Adapting to New Circumstances from ALS
After this, Micah and his siblings had to juggle their school commitments with their new home responsibilities. He knew many kids his age wouldn’t understand what he was going through because “None of their parents had ALS…like I could explain it to them, but until you’ve actually experienced doing some of the things you have to do when your dad is sick, like showering my dad or cleaning up after he’s used the bathroom, like those aren’t things that normal teenage kids have to do.”
Around this time, they moved to Minnesota to be closer to family and their mom found out about Inheritance of Hope. She secretly applied for a Legacy Retreat® and when the time came around, Micah was hesitant because he wasn’t big on amusement parks or being in “groups with other kids. I was like, I don’t want to talk to anybody. But, I went on the trip and it was a life-changing experience.”
The Douglas family making memories at the Orlando Legacy Retreat®, May 2017
In the beginning, he avoided all the groups and kept to himself. It took him a while to warm up to the new environment, but he eventually attended the group and bonded with the other kids. The family also got to go on roller coasters with their dad because the volunteers were able to pick him up and put him on a seat for Space Mountain. During the ride, they would hold his head so that he could enjoy the ride without any involuntary head movements. This was one of the fondest memories the family had from the trip because it reminded them of how their dad was before ALS when he would do racketball in the mornings, get off work to drive to wrestling practice and coach all their sports. “I’m surprised that dude slept ever. And so him wanting to go on a rollercoaster even though he can’t lift his arms or support his head was entirely him.” Douglas remarked as he recounted this memory.
Following the retreat, things would become difficult again as his parents wanted to move back to Utah after having problems with their support system. Micah was in 10th grade at this time and was angry because he already “made friends here and now you want to move me all the way back to Utah.”
The move ultimately worked out and his parents were able to get more support as they re-integrated themselves within the community before his dad’s passing in 2020.
When the day finally came, her father held on through the ceremony and passed three days later in October of 2012. Nicole said, “It was like a whirlwind of emotions of navigating a new marriage, stepping apart from family, grieving my dad’s loss, feeling guilt from not processing and being with my family.”
Coping with Community
To cope with quarantine and the passing of their loved one, the family became more involved in Inheritance of Hope. Micah was too young to volunteer at the time, but after seeing how happy volunteering for the Legacy Retreat® made his mother and older brother and “knowing that if my dad had the opportunity to volunteer, he’d be volunteering and he would want me to volunteer as well,” he decided to also volunteer when he was of age.
One stand out memory while volunteering with Inheritance of Hope was during a Legacy Retreat® in North Carolina when Micah helped a kid break out of his shell and go out onto the dancefloor with everyone else where he noticed “the look on his parents’ face with me dancing with their son out there was worth it all.”
When he wasn’t helping others open up about illness and playing games with them, he also helped with the Legacy Videos™ program where he helped families record messages they wanted to leave for their loved ones when they passed away. Years after his family’s Legacy Retreat®, Micah found out about his dad’s own Legacy Video™ when his mom told him about it. Now, whenever he’s in need of advice or comfort, he always watches it because of how goofy his father was in the video and how “He’s cracking jokes with my mom and it’s an awesome thing.”
After volunteering with Inheritance of Hope for a while, Micah went to one last Legacy Retreat® where he asked his recruiter, “Hey can I push my leave date one week?” because he didn’t want to miss out on the experience. He then left for basic training right after and now is stationed in the Savannah, Georgia Hunter Army Airfield’s 75th Ranger Regiment.
Hear more of Micah’s story on the Inheritance of Hope Podcast. Listen now >>
Kennedy Owens a Storytelling Intern at Inheritance of Hope. She is currently a sophomore at Florida Southern College with a major in advertising and public relations, and is an active participant on her school campus as the Event Coordinator for the Young Adults Self Advocates club and Brand Manager for the school’s radio station The Hiss. She enjoys all things writing-related and likes to serve her community the best she can.