A Mother’s Journey to Letting Go
Joyce Cline’s story about her son Jason
To hear more stories like Jason’s, be sure to check out the Hillcroft’s Facing Disabilities Project Event on October 4th at Civic Theatre.
Jason loves Christmas. He calls it “ho-ho.” Frosty the Snowman is one of his favorite songs. We used to let him unwrap everyone’s Christmas presents. He just loved the unwrapping, didn’t care what was inside.
The first time Jason had one of the fevers was when he was two, at his big brother’s birthday party. It was early fall, cool outside, we had the windows and doors open. I had given him a bath before everyone arrived and he was fine. My mother asked me during the party, “Where’s Jason?” When she said that I realized we hadn’t seen him. I went looking for him and found him pressed against the screen door, curled up, lying down. He was burning up. The fever came on so fast it frightened me, and we took him to the hospital. They didn’t know why he had the fever, maybe a virus. But I knew something was wrong.
He kept getting very high fevers after that, off and on, for the next two years. Jason was different after the fevers started. They affected his brain. I asked a doctor why he was different, why he was losing things, like speech, things he had done before. The doctor said “He’s tired, he’s just been sick, wouldn’t you be tired?” But I knew that he wasn’t just tired. He was different.
Finally the doctors started to see what I saw.
Jason loves babies. He loved his nieces when they were babies; he was always wanting to hold them. He loved to hold any baby, anytime. His dog, Snowball, she was so special to him. He loved that dog more than anything.
Jason lived at home with us until he was about 13. He was in school, in a special program, and rode the bus to a special after-care place until I got done working. But as he got older, he started to seem depressed, sad, and was down all of the time. The doctors said he needed a different environment with more structure. We found a place for him in Cicero, close to our home in Tipton. He was there for a few years but then that place closed. We took him to a place in New Castle. I thought it was okay at first, but he was assaulted there by a staff member. We found out later that the man who assaulted him had a criminal record, but was somehow hired. To this day, years and years later, Jason cannot be in a corner. He is afraid that if he is cornered someone will come at him and he won’t be able to escape.
After the assault I told his caregivers about not letting anyone corner him. “Don’t let that happen.” I said. “He is so loving and gentle but if you corner him, he will come at you. He will do it because he is so afraid after what happened to him in that shower.”
They didn’t listen, and kept putting Jason with another boy who would get too close. I warned them, again, because I was worried. One day they put Jason in the back corner of a van and sat this other boy next to him. The other boy got too close and Jason came at him. Then, after that, the doctors said we needed to move Jason to Fort Wayne. They said Jason was “aggressive.” He isn’t aggressive, he was afraid. He can’t say how he feels, but he experiences strong emotions like anyone would.
I didn’t feel good about Fort Wayne. I would bring him home on the weekends and go up to visit him and take him out as much as I could. Even just taking him out to the mall and watching people on the ice skating rink, he loved that. I felt like I needed to check on him a lot there.
Jason loves to go, he loves things that go. Trucks, buses, cars. “GO!” He wants to go for a ride, that’s what he says. “Go! Go!” He can watch traffic for hours. Jason loves music and playing his guitar.
I love Hillcroft. Jason has been at Hillcroft for 15 years or so now. His caregivers communicate with me about his doctor appointments and how he is doing. I don’t visit him as much now as I used to when he was at other places. I had breast cancer since he has been at Hillcroft, and when I was going through that I couldn’t take him on the weekends or visit him much at all. The doctors told me during that time I needed to start weaning him off of the visits and the weekends at home so that, when I’m gone, it isn’t such a shock to him. I take care of my mother and my aunt too, they are both in their 90s and they need a lot. Jason’s older brother lives in California now, but he visits him when he is back home.
Throughout Jason’s life, there have been times when I was skeptical of what his doctors said. But I think they were right about my illness being a time for transition for both of us. I really believe now it is best for Jason to stay in his routine, and in his home, with Robert and Barry. If I do bring him home to my house now, he doesn’t want to stay. He knows where his home is. They let him play his music, play his guitar, and take him out to see what he likes to see.
As long as he is taken care of and can do what he wants to do, I am happy.
Kira Childers hasn’t written anything creative in far too long. She loves telling stories through photography, particularly those little moments that seem so ordinary but are really what you want to remember about your life, family, and children. Her favorite subjects are her daughters, Mia and Charlotte, and she would like to thank her wonderful husband Ryan for his unending support of her quest to balance work, family, and creativity.
This story originally appeared in Facing Disabilities in East Central Indiana, a publication of The Facing Project that was organized by Hillcroft Services in Muncie, Indiana.