Grieving. Not a fun thing to talk about, but necessary. I find it comes in cycles when I least expect it.
The first year of my daughter's life, I was so busy with doctor's appointments and therapists, there was no time to be depressed. I'm not saying there weren't sob fests in the shower when no one else was around, but not really a chance to think about things and grieve for what was gone.
I had my daughter, and I was of course thankful for that and for all the strides she was making. But my heart was broken for that other little girl—the one with sweet pigtails who giggled and ran in to kiss me good morning.
The one who had a first kiss, a first date, a prom––and whom I would watch walk down the aisle in a beautiful gown smiling at the man of her dreams.
She was gone. In her place I got confusion, sadness, and a poem about Holland that made me want to scream every time it was given to me.
I received profound gratitude, life lessons, and the most heartfelt happiness you can ever imagine. It is a double-edged sword, this parenting of kids with special health care needs.
The grief comes back from time to time when I see a little girl my daughter’s age and I wish she could do all those things. I am lucky enough to realize I need to take the time to mourn that girl. Let it out. Be sad. Find my safe place, my safe people, and let it out. Be angry. For her. For me. For it all.
Then regroup and start fresh. It will eat you up inside if you don't let it out. Take the time to mourn. There is no right or wrong way. There is no specific amount of time. It's not “3 months should be enough.” Your heart will tell you when it has been enough.
And it is also okay to be happy. All your feelings are okay. There will be ups and downs. Let them come. Accept them. They are valid. You are doing great, and will get through this, too. All things are temporary, and this too shall pass.
This website offers several articles on grieving, including this one.
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.