When my son was first diagnosed, several parents tried to give us advice on how we should be coping. Many of our well-meaning friends wanted to connect us with other parents of children with disabilities to create a network of support. We had a lot of people offer their time if we wanted to talk.
We had family members who got a bit upset with us when we didn’t feel the need to talk through our emotions. They assumed we were bottling things up.
Now that my son is a bit older, I find that many people think that our family is defined by disability. That we’re always sad because my son has cerebral palsy. I mention my son’s condition and people immediately get quiet and contrite. Almost apologetic. And to this day, I still can’t quite make sense of why they would do that.
The value of this situation is that it’s forced me to ask myself what I need to effectively serve my family. And what don’t I need. For me, connecting with other parents isn’t important. But opportunities to channel my energy into advocacy are important. It’s become a part of me and something that I need to feel whole.
I suppose this note is for parents of newly diagnosed kids. But it’s also for those of us whose kids might be a little bit older. What do you need to be the best you who you can possibly be? What outlets do you need? What connections do you need? And how do you go about getting them?
It is easy to forget about yourself when you’re tirelessly serving others. It’s important to take care of you. Give yourself what you need to sustain your energy and emotions. You need those things so you can be the best parent that you can possibly be. It’s very important to keep from being burned out, which is a significant risk for parents of children with disabilities.
Take the time to ask yourself how you’re doing. Take the time to ask yourself what you need to feel okay about yourself. Take the time for self-care.
From the moment Camila was born, I knew she would change my world. But it was not until third grade when she made the comment “I don’t want to live anymore” that I realized things were not right.