I’ve written it before, starting Ushermom has really helped us in dealing with the Usher diagnosis. Telling our story has led to many beautiful moments and precious friendships all over the world. Writing has been therapeutic, creating Usher awareness has been satisfying. We feel part of a community, united by that one common factor.
A while back I was contacted by a family in Switzerland, their child had just been diagnosed with Usher syndrome. We emailed and then we called. That connection would have never been there without Ushermom. It was instant, warm and straight from the heart. I send the family lots of information to look into, they read my blogs. And then they came back to me with the following question: ‘You tell your story through your blog and Instagram. How do you protect or prevent Jackson from learning things about his situation from other people without your consent?
It’s not the first time this question has come up. It’s a fear of many Usher parents. What if somebody tells your child about their eye condition before you had a chance to? And I don’t mean a doctor in a hospital, I am talking about another child on a playground, a relative in a supermarket or an acquaintance on a sports field. The well-meant question ‘how’s his vision?’ or the dreaded remark ‘you are going to go blind’. It’s exactly because of this risk that parents sometimes choose to keep the diagnosis in the closet. They will do anything to secure a carefree childhood for their children.
So am I jeopardizing Jackson’s carefree childhood? That is very legit question. What do children need most when growing up? Safety, trust, love. I don’t think Jackson is running short in that department. We are all vulnerable. Holding back the truth for him will not change that, it will only disturb the level of trust between us. We decided early on that we were not going to lie to him about his situation. But giving him this information, drip by drip, and according to his age, is our biggest challenge. I’ve learned so much about this process thanks to the Ushermom network. Experiences from other parents, but also from Usher kids themselves. How they prefer honesty above secrecy. How resilient kids can be.
I feel strengthened by that network, by my fellow Ushermoms and dads. By my own husband who never doubts our approach on this. I cannot protect Jackson from other kids that might ask him about his eyes. I cannot protect him when people ask me questions about his sight in his presence. Just as well as any other parent cannot always protect their child from a painful remark, disappointment or grief. It’s called parenthood and it comes with this thing called vulnerability.
Ushermom tells our story, it exists because of Jackson. Yet he had no saying in it, about him being on social media. I am well aware of that fact. At this point I still believe that everything that Ushermom is bringing us, is helping Jackson. It simply makes us better parents. The network of families has proven to be a valuable support system, that we (and hopefully Jackson) will be able to enjoy for the rest of our lives. Being open about the Usher diagnosis has made it so much easier for us to talk about it, not only to friends and family, but also when advocating for his needs. Usher syndrome has a place in our lives, it’s not tucked away somewhere in the dark. There’s no secret in our family, there’s complete trust. Confidence that we can prepare Jackson for what’s coming, trust that he can handle the truth. That he can deal with any remarks and questions that might come his way. And then carry on being young. And carefree.
