Function is the Foundation

Brought to you by Creative Healing for Youth in Pain's Parenting Blog

Ilva Mariani
January 8, 2024 / 3 mins read

When our children are at the worst part of their pain journey, it seems that everything stops, except the pain. For me, the picture of that time is my daughter sitting in the corner of the couch with her pillows and blanket. That is where I said goodbye to her in the morning and how I found her when I came back home from work – day in and day out. Despite getting a diagnosis, as well as physical, occupational, and psychological help, this is how she remained for many months, from almost the beginning of the school year to the end.

She was in middle school then, and I am a teacher. Facing a second school year like this was unfathomable to me, and I sought something to help get her off the couch. She was evaluated and accepted into a pain rehabilitation program – eight hours a day, five days a week, with homework every night and every weekend - and we packed up and went.

The six weeks she spent working with a team of doctors and therapists were harder than the health challenges she faced from birth – being in the NICU as a preemie for six weeks and three surgeries that together kept her in the hospital for about that same amount of time. And these same six weeks, I was challenged to continue my education about chronic pain. Parents had their own homework and their own sessions with the doctors and therapists.

Being in the same space as six other parents, their children who were in pain just like mine, and a care team who got to know all of us, offered me time to reflect and figure out what is important, without the everyday world interfering. And what was important was keeping my daughter off that couch. Back at home, we got the school system to do what the care team there, and her local psychologist, believed she needed. And it wasn’t “graduating” and being the smart, A-student in her class. It was tolerating being in the classroom and sitting in a desk, when that was the last thing she wanted to do. It was about functioning.

During this time, I wanted my daughter to be comfortable in her own skin again, to not be afraid to enjoy the things she loves to do because they lead to more pain. She started back in November, being on campus two hours a day – being a teacher’s assistant and taking one class. After a month, she went to three hours, then four, increasing her hours once she felt comfortable. She finished that second school year with just three academic classes – but able to stay in school five hours a day. She functioned.

High school was so much better – a fresh start, with a fresh group of people. She joined the Improv club by pure chance, and she started finding her people. When school resumed after the pandemic shut down, she flourished during those last two years of high school. The Improv club lead to Color Guard in the Marching Band, and all the socializing and physical activity that went with it. I saw her perform at football games and competitions, enjoying it all, even with the pain that came with long hours of practice. And I was so proud of her! It was her functioning that amazed me and not the academics, though she returned to her old, studious self. In her senior year, she even read a book – being able to focus on a book was something the pain had taken away from her. She began to more than function.

She is now a freshman in college, flourishing. But I remain the voice of caution, of protecting her function, making sure it stays strong. She has nothing to prove. She has shown her strength, her resilience, her brilliance. She simply needs to function at the highest level she can on any given day.

And if that means a few extra quarters at the university, so be it. I am not her teacher; I am her mother. As long as she is able to enjoy each day, I am happy.