A little while back I was invited to speak at a meeting for Usher parents. What was I going to tell them? I am so new to all of this, I am not an expert. A year ago I didn’t even have a clue of what was coming at us. So I wrote down some things that I wish someone would have said to me upon getting that Usher diagnosis. I’ve added quotes from deaf-blind people who have inspired and empowered me along the way. May it be of help to any of you now.
It’s okay to cry (every now and then) When we got the diagnosis we cried for 2 days nonstop. And the tears still come every now and then, and that’s perfectly fine. Just don’t dwell on it. Look around you, there’s too much to be grateful for. If you cry all the time, you will miss out on so much beauty. The sun is gonna come up every day, and you can either run from it, or embrace the new day. I don’t want to be on the run for the rest of my life. Cry when you feel like it, there’s absolutely no shame in it. Just don’t forget to enjoy life and your beautiful child(ren).
Trust your instincts (you are doing the right thing) There are no guidelines, there’s no book. You will deal with this how you think is best. Follow your heart and you will be fine. I felt the need to create a space where I could share my stories and reach out to other people. Ushermom is my therapy, and my way of helping Jackson and other Ushers. You will find your own way, but talking about it helps, sharing helps as well, it’s good to know that you are not alone in this. Ask questions, and if you don’t understand something, ask again. If gathering information makes you feel useful, google away. If you want to take action, may the force be with you.
Stop comparing (it doesn’t get you anywhere) Don’t be bitter, don’t let it get to you. Yes, it is hard. Very hard. To see children running, playing, talking, interacting effortlessly with others and the environment they are in. Without any barriers. It hurts like hell. But be grateful for what you have, look at what your child can do. Enjoy it every step of the way. Don’t focus too hard on what you see on social media, it’s only what people want you to see. There is no picture perfect, everybody faces challenges in their life, it’s up to you how you deal with it. We’re all entitled to happiness, but you have to allow it.
Something good will come from this diagnosis (really) Having a child puts everything in perspective, the cliché is true. Having a child with Usher syndrome adds a time limit. That’s what I felt the day we got the diagnosis, and that is what I still feel. How long will we have? How long will Jackson be able to see? I try to put these uncertainties, the things that I cannot control, beside me. To not let it control our lives. Instead, we take it one day at a time. And for a control freak like me, it’s still difficult, but I also find it liberating at times. I work less, I’ve taken a step back, I might have done that anyway, but the Usher diagnosis made that decision much easier to make. I choose to spend more time with my son and husband, family comes first.
Be optimistic (set the example for your kid) I’ll admit, some people have more natural talent for this than others. But facing this diagnosis head on, with hope in your heart and power in your soul will get you so much further. You will reflect your positive attitude on your child and that is the most powerful gift you have to offer. Usher syndrome has made me look at people with disabilities in a different way, I’ve seen so much determination, perseverance and resilience. I’ve seen people, who regardless of any disability they might have, live a happy and joyful life. That’s what I want to pass on to Jackson, above anything else: you are full of potential and the world is full of opportunities.