A few weeks ago, I sat on a couch with a fellow mother. She also has a child with special needs, and she was sharing with me some of the challenges she is facing. Her struggles were very familiar to me. I know a little about the journey a parent goes through when raising a child with special needs. It is a long and winding road, and the first step is one that I haven't heard her mention yet. So I asked her a very important question, as gently as I could. "Have you allowed yourself to grieve?" Her face froze for an instant, then crumpled as the tears started to fall.
When our son was born, he was perfect. His birth was very typical. There was nothing to indicate he wasn't like any other baby, other than some random and very slight tremors that occasionally shook his body and mystified the nurses. They asked me several times if I had smoked while pregnant, which I hadn't, then shrugged it off. My maternity leave was peaceful and happy. I wasn't a new mom this time around, so didn't have the anxieties that come from not knowing what to do. I felt confident in my role. My new little son was a champion sleeper, and was able to soothe himself to sleep on his first night home. I laid him down in his crib, awake but drowsy, and he quietly drifted off to sleep. "Alright!" I thought, "I have the best baby in the world."
Each day I fell a little more in love with him.
As he grew, we noticed he wasn't reaching developmental milestones as quickly as we thought he would. My career is in the field of child development, so I was well aware of what he was supposed to be doing, but wasn't. Slowly, our dreams and expectations began to fall apart. I would go to work every day and play with typically developing children, the same age as my son, then go home and be hit over the head with the reminder that he was not developing as he should have been.
Despite this, somehow I was able to convince myself that he was fine. He just needed a little boost, and he would be okay. We got him a speech pathologist, and a physical therapist. An occupational therapist. A neurologist. We enrolled him in a preschool for kids with special needs. Finally, the day came when I started doing research in hopes of getting a diagnosis.
Grief is a fickle thing. Sometimes it hits you directly in the heart, and sometimes it lurks in a dark corner, letting you push it aside but never leaving you. And sometimes it disguises itself as a different emotion altogether.
My grief over my son has taken all three forms, sometimes all in the same day. It has also opened my eyes to areas in my heart that I needed to address. Working through the feelings that my mourning has raised has allowed me to grow as a person in ways that would never have happened otherwise. It has strengthened my relationship with my husband. It has both softened me and made me stronger.
My grief, once I began to feel it, has been a precious gift.
I don't usually feel sadness for my son anymore. When it does sneak in, it generally is like a feather that floats into my vision briefly then flutters away (there are exceptions to that, however. The day I thought we were going to lose the aide that has done so much to help my son at school, it was a truck making inroads on my heart). That doesn't mean that this is a syrupy happy ending, though, because as much acceptance as I am feeling today, I know that more sad days are waiting for us.
The day he gets bullied, which thankfully hasn't happened yet but could.
The day he realizes he can't do something that other kids his age can do.
The day he asks us if he can take driver's ed like his friends.
Those will be very hard days. But I know something about grief now that I didn't know when he was a toddler. Grief is a magnifying glass that enlarges every other feeling. When my now eight-year-old does something that makes me giggle, or lays his head on my lap in peaceful contentment, or masters something that he worked on for months (or years), the joy I feel is so much greater than it would have been without the low moments.
But the mom sitting on the couch with me that day didn't know all of that yet. She didn't know that her feelings were not something to be ashamed of. She didn't know that she could feel sadness and anger around her situation, and still love her son with every fiber of her being. So I sat with her, and held her hand, and told her. And thanked God that I could.
I am so glad you are here! Welcome to my blog. This is your space, too. My name is Amy, and I am no stranger to the ups and downs of life. Join me as we search for beauty, authenticity, tell our truth, and hold space for each other in the messiness of life.