We didn’t know my son had cerebral palsy when he was born. All we knew was that he was tight—all through his body, he was tight.
At first, our doctor didn’t seem to think anything was wrong; some babies are just tight. He suggested that we massage his muscles to help loosen him up a little bit and maybe ease some of the stiffness.
I took that suggestion very seriously. Every night I’d put Johnson and Johnson’s™ baby lotion all over my son and give him a thorough massage. I’d make sure every single one of his limbs was stretched out, and every single muscle smoothed out. I researched baby massage to make sure I was doing everything I possibly could. Bath night and applying lotion afterward was my responsibility, and I took it very seriously.
We later found out that the tightness was nothing I could solve.
But for a few months, when I thought I had control over it—man, I did everything in my power to make sure that I was doing my part. If my son was going to be stiff, it was going to be despite my best efforts.
I find that this lotion memory represents a lot of what we do as parents of children with disabilities. We look for what we can control. Whether it’s schooling, or doctors, or medicines, we try to find things we can control. When we find those things, it helps us cope with knowing that what we want to control—the disability—is totally out of our control.
When I think back on that time, part of me feels a bit naïve—that I could have made a difference with something that was much bigger than me. But then another part of me realizes that I was doing the best I could and that’s all my son would ever want from me.
We have a daughter now. Every night after bath time, I make sure to lotion her in the same way I did my son. And every time I do, I get a little nostalgic. The smell of Johnson’s Baby Lotion™ reminds me of a time when I felt I had control, but it also reminds me that no matter what, I’m going to do everything I can for my children—everything in my power for them to have a good life.
It’s a wonderful combination of naivety and empowerment at the same time.
Check out the Accepting, Grieving and Adapting to Life section on this website.
Learn how one family does many different vacations and how they make it work.
Trauma Informed Care is an approach that deals with behavior problems by understanding the communication behind the actions—and identifying if they are trauma based.
Having some time to yourself when you have a child who must know where you are, always, can be a bit wearing— but also something to be grateful for.