After my son received his diagnosis of CHARGE Syndrome, the genetic counselor offered to pair me with a fellow mother whose child had the same diagnosis. I agreed, believing that connecting to another mom could help, by supplying information and assisting me in navigating an unknown and uncertain world in raising a child with special needs.
The day I called the mother, there was an unfriendly tone from her. It was one of irritation, which I dismissed as probably stress in raising her child. Yet, as we chatted about her child’s diagnosis, she shared that no one in her family knew. She explained that her child looked “normal,” except for the “ear malformation” that is a characteristic of CHARGE Syndrome. She shared how they used the child’s long hair to hide it. She went on to say that if her family knew “they would be devastated.” She and her husband kept the diagnosis to themselves. After that, our conversation didn’t continue. I’m not sure how we ended the call. All I remember was putting the phone down and feeling as if this woman was ashamed of having a child with special needs. I never spoke to her again.
Let me say this…. I am not judging that mother. Not at all! I’m not sure of her mindset, what she went through, how she felt, if she comes from a family where a child having a disability is not accepted….I’m not sure. However, over the years I have thought about that mother and our brief conversation, especially when it came to my shame and embarrassment of having my child with special needs.
I can truly understand the feeling of not wanting everyone to know, because after Nate was born, I didn’t tell many people about his diagnosis. Immediate family knew, however I did not share with extended family and my friends. There was a feeling of fear, shame, and embarrassment. I wondered and worried if people would blame me for Nate being born with special needs. I was afraid of what others would say, the conversations they would have behind my back, and the opinion they would draw. I didn’t want my child to be a topic of anyone’s conversation.
It took me years to finally be comfortable with sharing my child. As I started to talk to people about Nate, the shame and embarrassment began to peel off me. I know longer worried about what others thought, how they felt, what they believed and if they blamed me or not. I didn’t care.
What I later understood was that when I allowed that shame and embarrassment to take over me, it stopped me from helping and blessing other people, which is wrong. We are to share our life to help someone else, to let them know they can do it, and to give them hope, when they think that life is hopeless. For this very reason, is why I started sharing with my blog, “Faith to Raise Nate”. I truly wish that I would have started this years ago, but I allowed the shame to stop me.
So, if you have shame or embarrassment for having a child with special needs, it is time to break free. It is time not to worry about what others think, how they feel, or their opinions. Instead it is time to stand up, proudly, and share your child and your story.