When we received our son’s diagnosis, our world changed. Every day we’d come home from work and jump on our laptops to research his condition. We would also spend a lot of time crying and just being sad.
There are times when I think about how unfair that was to him. We were mourning his very existence, but at that moment, we needed to be tougher. We needed to move on more quickly and simply accept him for who he was. But with time comes perspective and I’ve decided to give myself some grace on that.
We weren’t at all mourning our son. We were mourning the loss of predictability. We were mourning the future that we thought we were going to have. Maybe mourning isn’t even the right word. We were simply reeling from the shock of this new life that was presented to us.
Once we got past that, we realized that although the future wasn’t what we thought it was going to be, that’s okay because it turned out to be better than what we thought. Our present life is beautiful and wonderful and happy. It’s not what we expected, but it’s so much better in so many ways.
In hindsight, I believe we needed that mourning phase. We needed intentional time to let go of our ideas of what parenting would have been for us. We needed to embrace the notion of what parenting could be for our son. We needed that sad time. Now that it’s been 5 years, I wouldn’t trade that time for the world.
So to any of you parents reading this who just got a diagnosis and are having trouble coming to grips with it, here’s my advice: be patient with yourself. Lean into the struggle and give yourself time. There needs to be a reframing of what your experience is going to be…because it will be significantly different than what you expected.
But oh my goodness, it will be so much better, too. And someday you’ll be 5 years down the line looking at your son or daughter, unable to imagine life any different than it is at that exact moment.
Let it rain a bit. Because after the rain, the flowers bloom.
Learn more about accepting, grieving and adapting to life when you have a child with a disability.
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.