If you are a caregiver to a loved one who is chronically ill, you probably spend a lot of time in the doctor’s office. Depending on the news you receive, these visits can be stressful, frustrating, or encouraging. But these visits can also be a microcosm of the life you lead as a caregiver. This was the case for me and my son, Brandon.
When Brandon, who was born with a rare genetic disorder, was six-weeks-old, I feared he was blind. He wasn’t tracking or making typical responses to visual stimulation. We ended up seeing a pediatric ophthalmologist. Our visits in his clinic have paralleled our journey in the special needs world.
As you can imagine, I approached our first visit as a scared mom who dreaded the news I thought I would hear. As I entered the waiting room, I observed a mom and her young son who was in a wheelchair and appeared to be deaf. They were using sign language to communicate with each other. What was more noticeable to me, though, was the joy they shared between one another. She did not look like a mom who was on the tiresome journey of caring for a child with special needs. All I witnessed was a mom enjoying a conversation with her child. This encounter had a profound influence on me.
After my son’s eye examination, the doctor explained to me that Brandon did have a defect with his optical nerve, but he was not blind, as I had feared. The advice the doctor gave me, changed the way I saw my son and completely transformed the way we, as a family, responded to Brandon. He told me to treat Brandon like he had perfect vision. He told me to keep toys and visual stimulation in front of him as often as we could. When I relayed this information to my other children, they wasted no time implementing Brandon’s visual therapy! If they were getting orange juice out of the refrigerator, they would say, “Look, Brandon, this is orange juice!” That poor kid didn’t have a second of the day that someone wasn’t showing him something or changing the toy that was in front of him. And, amazingly, within a few months, Brandon’s improving vision and subsequent smiles made us all cheer.
I later thanked the ophthalmologist for his life-changing advice. He humbly accepted my appreciation and was encouraged that he had played such a positive role in Brandon’s life. This advice translated across all areas of Brandon’s development. From that point on, we assumed Brandon could see, hear, and understand everything that was going on around him. We always included him in conversations, mealtimes, and family fun. In the special needs world, we often use the phrase “presume competence.” This simply means to communicate with the child, age appropriately, as if he totally understands everything you are saying to him. If I could only convey one thing to other people who don’t have a loved one with special needs, it would be that.
My final visit to the ophthalmologist was edifying as well. This time the inspiration came another mom in the waiting room. As I was heading back to see the doctor, the mom, who had a child with Down syndrome, handed me a note. The note simply said,
“You are a great mom. We all need to hear that sometimes.”
Wow! What a simple but powerful message. It is so easy to feel inundated with all that has to be done. We all feel like we could do more or do better. With a simple note, this mom had brightened my day and reminded me how affirming it is to hear a positive word. I hope we can all be like that mom!
The caregiver world can feel overwhelming, exhausting, and never-ending. But it can also be inspiring, empowering, and uplifting. We all need to take time, look around, and treasure the good areas of our lives. Sometimes these moments take place at home, at school, or even in a doctor’s office. Let’s take the time to encourage one another as caregivers and see the ones being cared for as a positive force in our own lives. My son has definitely changed me, and my entire family, for the better.
– Debi Blaising, Springible Contributor