A little while back we visited a meeting for parents of Usher kids. I look forward to these meetings but I dread them at the same time. I am afraid of what I will hear. Things that I am not ready for, but are our future. Listening to parents and their stories, I try to hold back my tears but I fail big time. And that’s fine, because that’s the true value of these meetings. It offers an opportunity to share your grief, your fears, your emotions and doubts with people who are on the same journey.
What strikes me is that so many parents keep the Usher diagnosis a secret. Often a small intimate circle of friends and family is aware, but that’s it. Sometimes even school, grandparents, or sports clubs aren’t informed. Parents choose to do so with a very legit reason: to protect their child. To make sure their child has a carefree childhood, at any cost. They want to prevent someone else telling their child that he/she will become deaf and blind. Can you imagine being 8 yrs old, without a care in the world, and someone on the schoolyard shouts at you: “do you know that you will go deaf and blind?”. You don’t want that to happen. Ever.
Suddenly I feel very confused and I almost panic. What if we’re doing the wrong thing? Aren’t we way too open about Jackson having Usher? Who are we to decide this for him? How will we be able to protect him? I look at my husband and I see he’s having doubts as well. We talk to more parents that afternoon. In the car on the way back we are both quiet. Then Willem says: “We’re doing the right thing. We all do the right thing.”
Sometimes people compliment me on the way we are dealing with our situation. But we’re no better at dealing with it than any other Usher parent. Everybody deals with it the best they can. There is no right and there is no wrong. You do what you think is best for you and your family. For us, holding back was not an option. Jackson has Usher type 1B, he’s born deaf and has serious balance issues. He was late to sit and walk, he still walks carefully and unstable. He has bilateral CI’s. People notice, people ask questions. And I refuse to look away, let alone feel ashamed. There’s no shame in having Usher syndrome. I consider it my biggest job as a mom to give Jackson confidence in his own worth and abilities. I don’t want him to feel less or ashamed. He can feel angry, sad and upset about having Usher syndrome but never ashamed. Shame feeds on fear, ignorance and secrecy. I don’t want to raise my child in such an environment. I don’t think that will make him a stronger person. I can only hope that by offering him openness and transparency, we won’t have that schoolyard situation. Because Jackson will know, everybody will know.
So we share our story. That’s our choice. We’re open to our friends and family, to all the caretakers that are involved, to the people that follow the blog, and of course to Jackson. He’s in charge of his bionic ears, he knows very well that we need to protect his eyes from the sun. We don’t mention Usher yet. But at some point he will start asking questions and then we will answer. There’s no closet where Usher syndrome is hiding in, waiting to come out. I don’t want that emotional burden on our family and loved ones.
Are we doing the right thing? We are happy. Jackson is happy. I don’t judge any other parent. Every situation is different, every person is different. A brave ushermom from Canada mailed me the other day. She’s keeping the diagnosis a secret but she’s having doubts and is experiencing some emotional stress. She writes me this beautiful sentence that says it all: “We often think that we keep secrets, without realizing that the secrets are keeping us.” Thank you fellow ushermom. You will find your way.