As a parent, I have doubts and guilt about all I’m doing or not doing for my children. One source of guilt is about how my younger son’s disability has affected my older son. He was barely 2 years old when my middle son was diagnosed with cerebral palsy (CP). And in many ways, his life has been defined by CP as well.
As a 5-year-old, he had to stay with his grandparents for 10 days while we traveled to go have surgery. We routinely ask him to be aware of what his brother is doing to make sure he doesn’t get hurt. We struggle to manage his activity schedule along with his brother’s intense therapy schedule.
I know that none of that matters in the grand scheme of things. But it is a challenge, and something I have to consciously think about. Am I giving my older son the attention he needs?
Truth is, there is no scorecard that we have to keep equal between all of our kids. My son with CP is always going to need a little more time, effort, and attention than my other two kids do.
Being a parent of a child with disabilities results in a lack of certainty. A lack of confidence in what you’re doing. And it is compounded by the unpredictability of your children’s health.
Last night, my middle son was up all night, so I’m exhausted. Today, my oldest son asked me something and I snapped at him out of fatigue. I feel awful about it. I’m trying to give myself grace that I’m allowed to be tired, and that sometimes I make mistakes. But that feeling of guilt I have is compounded by that nagging doubt.
Am doing enough for my older son? He’s growing up much differently than I thought he would.
I really struggle with this. And I know for me, it will be a lifelong effort. The simple answer is to just try my best. But at times it doesn't seem like enough. It’s difficult to think that I’m doing the best I can when my best doesn't quite feel good enough. But it’s all I have to give in this moment.
Managing that guilt is hard. Really hard. Parenting a Child with Disabilities offers ideas and information to help.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.