WEST OLIVE, Mich. — When Jess Ronne chose to bring her son Lucas into the world, it changed her life in more ways than one.
It started when Ronne received dire news at a routine ultrasound appointment that her son had suffered a stroke in utero.
"There was very little hope," Ronne recalled. "It was suggested that we terminate the pregnancy... we decided to put our faith in the Lord and His will for the baby and we continued the pregnancy. And Lucas was born on August 12, 2004, just came out screaming with life and that was the day I became a forever parent caregiver."
Lucas was born profoundly disabled.
Years of ups and downs followed as Ronne added two more children and lost her husband to brain cancer.
She met a widower and remarried, blending their families and having one more child together.
But as Lucas grew, Ronne never lost sight of a promise she made the day he was born.
"I had promised him that I would one day start a nonprofit in his honor, always thinking that the nonprofit would help the children," Ronne told FOX 17 News. "But as we were struggling so horribly, as caregivers, I realized that the children are only as healthy as the caregiver. And if the caregivers weren't doing well, there was no way that children would be able to do well."
The Lucas Project aims to help by providing resources, recognition, and respite to caregivers of special needs children.
Along with raising awareness and sending out care packages to families across the country, Ronne said they're working on opening an in-person respite center in West Olive where kids and young adults can be dropped off for after-school and day programs.
"The world was not made for families like ours. And we just isolate more and more within our houses exhausted, anxious, stressed, because nobody sees us. And I think that's what's become my mission in life is to bring this awareness to these parent caregivers and how much we need organizations and churches and people to see us and just reach out and lend a hand if at all possible," she said. "There is kind of a stigma surrounding, I think, parent caregivers and being able to say I love him or her so much, but it is really hard."
Ronne has written several books about her experience, has a podcast called "Coffee with Caregivers", and a documentary about the hidden mental health crisis of special needs caregivers that premiered this month.
Despite a busy life with a never-ending to-do list and the challenges of being a caregiver, she has no regrets.
"I think every parent recognizes that when I give birth to a child, it's going to be difficult. There's going to be difficulties, joys, triumphs, the whole gamut of experiences," she said. "I absolutely own my choice. I'm thankful for my choice. But yet, we still need more support and resources and communities need to rally around these parent caregivers."
To learn more about The Lucas Project, visit the website or Facebook page.