Learning to Deal with Usher Syndrome

 UPDATE: I felt the need to come back and update this post as we have learned that Audrena's Usher Syndrome diagnosis was a mistake. Here is the post where we learned she does not have Usher Syndrome.

We have had our ups and downs in the past month. Usher Syndrome has been a big pill to swallow, and I think those ups and downs are going to just be our normal. The past week has been a little more difficult for me. I think it's because summer is coming. We are starting to talk about camping, swimming, and other sunny activities. Every time I look outside at the sun, I think about the potential damage to Audrena's eyes. Bright light speeds up the progression of Retinitis Pigmentosa.

Sunglasses will always be a standard part of Audrena's life. That's not such a big deal. It's just plain healthier for everyone to wear them. But right now she doesn't have any. The big debate has been whether to order prescription sunglasses or transitions lenses now, or to wait until we see the doctor at University of Iowa. In the meantime, whenever Audrena is playing outdoors I think of those precious eyes. So Randy called University of Iowa and talked to the nurse. He explained that our appointment is not until mid-June. Should we order sunglasses now, or should we wait until she sees the doctor in case she makes a change in the prescription? They did recommend that we wait. Our options are clip-on sunglasses for her regular glasses, or a sun hat with a brim. Although logically good solutions, neither of those seem like fantastic options for us. Wal-Mart told me they don't make clip-ons small enough. I need to check elsewhere to confirm that. And a hat? Well, with a child who will soon have bilateral CIs, I see a huge hassle in the making. It's hard enough to keep one on when she plays with necklaces and hats indoors. Two will be even more difficult. We're not really sure what to do at this point, but we know we want to protect Audrena's retinas as much as possible.

When I look at old photos of Audrena in the first few months, it seems like I am looking in at another person's life from the outside. We were so carefree. Sometimes ignorance is bliss. But regardless of the struggles we are facing now, I am thankful we know now about USH2C because we can be proactive. I am thankful for cochlear implants because they have made a phenomenal difference in Audrena's life, and her future might be very different without them. We don't know what USH2C has in store for her. Retinitis Pigmentosa might be very mild for her. Some people make it into their 40s without any vision loss. Most people don't. Realistically, they might make it to their mid-teens. There might be a cure by the time Audrena needs one. Or there might not be a cure. But what I do know is that at least she will be able to hear, and she will be able to speak.

A friend, Susan, sent me a message last night. She is a fellow CI parent and an amazing mentor. I shared some of my worries with her, and I hope she doesn't mind me sharing what she said. She wrote, "All you can do is take one year at a time. No use carrying that big bag of anxiety too far out." Her advice has always been really great, so when I read that message I decided that I would try my best to do exactly what she said. As for preschool, she said, "The school seems much scarier than it is. You'll figure it out. Just make sure you have good teachers and FM/soundfield. She'll do amazing!" Thanks, Susan! You are wonderful.