by Lisa Thompson
Grief is a natural process of life. We all experience grief at some point, and we try desperately to avoid it at all costs. We often associate grief with the death of a loved one, but we can also experience grief over a deep disappointment, or a loss of hope, or for many other reasons.
We can even experience grief surrounding our children’s struggles.
For parents of children with disabilities, I think we all experience this eventually. We may not recognize it or even admit it, but grief is part of the process of accepting the journey we’re on with our children. Why is no one talking about it?
It took me a while to figure out that what I was feeling was grief. Maybe it was because Porter’s diagnosis has never been cut and dry. I couldn’t point to a certain date or a big event that gave us certainty about his future or about what he was facing.
At first it just felt like life. Some people call it anxiety, maybe even depression, but I never wanted to call it either of those. If Porter had been a little younger, I probably would have tried to call it postpartum depression. I grieved when I realized that my son wasn’t like all the other sons I knew. Working through it was a slow process.
When he was seven, we took him to a children’s hospital so doctors and experts could put him through a volley of tests, trying to get a little closer to a diagnosis. But everything stopped after the first test. The experts told us his specific disability didn’t warrant anymore testing and sent us on our way.
I remember leaving the clinic and walking to the car with Brad and sweet, innocent Porter. I was full of fear, stumbling to put one foot in front of the other. My chest was heavy. I was sick to my stomach. My head hurt.
I felt the same way I did the day my dad died.
The weird part was that nobody had died. Porter was right there, with his brown sugar hair and gorgeous blue eyes, thriving and strong, asking us for macaroni and cheese for lunch.
His innocent demands for comfort food jolted me back to reality. I pushed my tears back and managed to avoid breaking down in the parking lot that day, holding it together for his sake and for his daddy’s.
But the pounding headache, heavy chest and nauseated feeling didn’t leave me so quickly. In fact, it would hang on for the next few years while I processed this news. I didn’t have a name for it in the moment, or even years later, but I was entering into a process of grief.
There are five steps in the grief process: denial, anger, bargaining, depression and acceptance. Some think there should be two more steps: shock as the first step and processing as the last. It’s important to remember that grief is a cycle, not necessarily a process you start and finish.
I’ve been through every single step. So has Brad. And sometimes we cycle through the process all over again. Something new will happen that sends us back to one of the earlier stages, or we’ll become aware of another milestone or achievement we’ll never experience with our son. Parenting a child with a disability brings with it grief, no doubt.
The thing I love about the grieving process (yes, I know how weird that sounds) is that there’s an addition to the acceptance step that is often overlooked or left out.
It’s hope. And hope is really where all the growth is found.
My personal struggle with Porter’s disability has not been a short road. I spent more time than I’d like to admit mourning the loss of what I had hoped and dreamed his life would be like. Meanwhile, I tried to be a present mom, a dedicated employee, a dependable friend, a good wife and fulfill all the other responsibilities and roles in my life. Deep down, I was hurting.
He’s our firstborn. Our pride and joy. Naturally, I had expectations and fantasies about what was to come: little boy mischief, football, first dances, competing in UIL and school events, weekend sleepovers, accomplishments and responsibility.
Slowly, as I realized Porter wouldn’t experience any of those things in the ways I’d always dreamed, I slipped deeper into grieving my expectations. What a funny thing to admit. I knew better than to go into parenting with expectations, even more so when your child has been saddled with a disability. And even still, the silly, nonsensical, doesn’t-matter-in-the-big-scheme-of-life things are what were the hardest to give up.
Through this process of grieving, I found myself in some dark places along the way. I cried a lot. I ate what I wanted. I made a lot of mistakes. I struggled with my own faith. I lacked energy and motivation to care for myself. I slipped into some unhealthy routines.
From the outside, my life looked pretty perfect and balanced. Social media was curated to show my high points, and to my friends and family, I’m sure it seemed that we were handling Porter’s disability with relative ease. But in reality, things were not as pretty.
It’s not that I was sad that I’m Porter’s mom. I’ve always been incredibly thankful that he’s mine, and I’ve even been able to look at his disability through a lens of opportunity and positivity. But at the same time, I worried that I’d never have the same experiences other moms do. I felt fear and dread when I thought about his future. The grief I was working through was selfish. It’s hard to admit, but it wasn’t really about Porter—it was about me and my fear of missing out.
I was in shock at first, and definitely in denial for some time. I pretended he would eventually “grow out of it.” My husband and I both tried to bargain with God, praying that this thing would go away and promising to trade Porter’s struggles for our own.
Through much prayer and introspection, we started to heal. And when we finally moved toward acceptance, a beautiful thing happened. We all felt less stressed and more confident in our relationships—and we began to experience normalcy and joy that we never thought possible. There was hope.
Now, instead of mourning the disability, we are finding ways to feel empowered and strengthened by it. We are educating ourselves on the opportunities that will exist for Porter, planning for ways to make him feel successful and removing barriers when we can to help him experience the same fun and enriching things that his peers do. There’s so much power in all of this.
It’s not all rainbows and sunshine, by any means. There are still hard days. Sometimes at night while I’m laying in bed, I feel my old nemesis creeping up on me: anxiety. I have to remind myself that there is hope at the end of this grief cycle, and there is hope for Porter and everyone like him. The best part: he is still a happy, healthy, strong, thriving young man who is ready to take on the world.
That is, if I can just get out of his way long enough to let him. And he still enjoys a good bowl of mac and cheese at any time of day.
About the Author: Lisa Thompson is a mother of three boys and is married to Brad, a firefighter with the Texarkana Texas Fire Department. She is the Economic Developer for the City of Texarkana, TX and teaches as an adjunct at University of Arkansas Hope-Texarkana.