"Your son has Usher's Syndrome Type 1b.”


That sentence ran through my head like a freight train. It just couldn't be, I didn't understand and I certainly did not know what to say next. All I knew was that I had to get out of that small, hot, appointment room with my husband and our 12 month old son. Nothing the doctor or our case manager could say was going to help me to cope with what I was feeling at that moment. I needed air and I needed it fast.


Once I was able to breath again, I called my mom, who said, “Carly will be over on Wednesday to talk to us.” It was like the sun was coming out again after a storm. I knew that she had been where I was and it, at that moment and just knowing that she was coming to talk to us, warmed my heart. I had no idea how much I would learn from her. No matter how much research you do or how kindly the doctor tells you, "Your son has Usher's syndrome type 1b," you are not prepared. However, being able to connect with another parent whose child has Ushers was a life saver.


Carly also told my mom, “Today is the hardest day. Each day it will get a little easier.” Those words keep running over and over in my mind. They really are true. Each day I wake up and think about it without crying, I know she is right. It is getting easier. Even though there are still days I find myself getting sad or frustrated, I know I am not alone.


Now, eight months after the diagnoses, I am finding comfort in speaking to other Usher parents and meeting their children. To me they are the only people that truly get it. My fears are their fears. They are either going through it with me or they have been through it and can give me guidance like no one else can. I am thankful and grateful to have Carly and other parents in my life to help me and my family get through this emotional journey.

Written by:

Lisa Henschel, Gunnar and Flynn's Mom

© 2019 by Ava's Voice

Ava’s Voice is an official USH Partner of the Usher Syndrome Coalition

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