I am writing to all the moms and dads of kids with disabilities or facing any parental challenge, in hopes that in some small way this post helps you with some of the challenges that you will overcome..
Lately, I am regularly on the phone or emailing a scared mom or dad who just found out their child has Usher syndrome (usher syndrome is the leading cause of deaf blindness and also loss of vestibular function), or know in their gut that something is not right and they come across our blog and reach out to us. They reach out to us, as we reached out to other parents when we were at the same stage they are in. We hear from families all over the world asking for advice and telling us about their story. Each story is unique, and I can feel the love you have for your child, your worries, your fears, just like it was my own. I try to find the words to say to you, to let you know that it will be OK, that your child will be OK, and will thrive and that the shock will pass. I want to reach through the phone and give you a hug and hold you the way we desperately needed to be held when we found out about our daughters diagnosis. I want to tell you that everything will be OK but I know that you will naturally doubt that things will be. So we share our story in hopes that you will find comfort knowing that you are not alone. We are traveling the same road you are, and there are many others before us that have as well. But if there is one piece of advice that I could give, it would be this because it is so true:
When I first found out that Rebecca had Usher Syndrome and was going to go blind, I felt like my world was torn apart. I felt like someone died, and I was in mourning. It was strange, I could write about it, but I couldn’t talk about it, even with my closest friends and family. I didn’t want to leave my house, I was afraid. I let the fear of the unknown consume me. We sat at our kitchen table trying to figure out how we were going to do this, we were so scared. I know you are scared as well. You got the call that something was not right and your world stopped. Slowly over time however, your world will start to turn again. Fear and anxiety will give way to hope and determination. You will learn how to face this new challenge and your days will be filled with new routines that become part of everyday life. The day we received Rebecca’s Cochlear Implants we were completely overwhelmed. How would we ever figure this out? My husband who has an engineering background was just as perplexed as I was, what were we going to do with all of this equipment, how would we manage it? But we just started, and now what seemed impossible is our norm.
I wish I knew then what I know now, and sometimes, I think I let this Usher Syndrome diagnosis over-shadow some pretty amazing things. I was there when Rebecca first heard a group of birds chirping in a tree, I was with her on the sidewalk when she first heard a cricket chirp in a field of tall grass beside us, and I will always remember these incredible moments. Never in my wildest dreams did I ever think it would be possible for me to have a deaf child, or a child who may one day be blind…..but here we are, and I am thankful. I am so thankful for her and Reagan, every day. Rebecca has taught me more in her short 17 months than I could have learned in a lifetime without her. I can remember when I was younger, seeing signs on the side of the road that read “Deaf Child”, or “Blind Child”, and I felt sorry for those people and how much they would struggle to get through life. Rebecca has taught me that this simply is not true. Yes she will have challenges, but she will have an amazing life. She is fearless (which is a little scary at times), she is determined, she is sweet, smart, and loving, and absolutely hysterical at times. Rebecca looks at me when I call her name, and when she wants me, she calls “Mama!”. When she is all done eating she signs “all done”, and if I try to give her just one more bite, she pushes my hand away and says, “nooooooo!”. When she wants her daddy’s attention she says and/or signs “Dada”. AMAZING! Just incredible for a girl who could not hear anything just 6-1/2 short months ago. We are so lucky to have her. We get to watch her experience all of these new things, these new sounds, and it is nothing short of amazing. One day, maybe not too far from now, Rebecca may be blind, but I can tell you that it won’t stop her. It won’t stop her and it won’t stop us. Don’t get me wrong, I know there will be days of sadness, worry, and even fear. As her sight deteriorates we will face more and more challenges. But we are so fortunate and so grateful for all that we have. We will overcome whatever obstacles come our way, and enjoy this wonderful life with our two beautiful daughters, and Usher Syndrome will not stand in our way.
It wont be easy but you will figure this out. Your strength, determination, and the love you have for your child will out-weigh the fear and worry. You will overcome the challenges and you will look back and think too that what you thought was once impossible, is actually very possible. Your child may be deaf, and may one day be blind, but he/she will show you the way.
Hi, this is beautiful. My name is Kelly, and I am from
NY, my son Kellan was born with severe to profound hearing loss, he underwent cochlear implant surgery in January and then June of this year. We have been following with a geneticist for the last year, and genetic testing shows that he likely
Has usher syndrome, but the mutations that he has are rare so we still have not been given a straight answer. I completely relate to your feelings you describe when you first found out.
We have have been to a few differnt eye doctors, but go figure have not been able to find a pediatric usher syndrome
Specialist in NYC. My thought was to go to Boston Children’s , and I came across your blog as I was researching. I thought I would reach out to see which opthemologist you see and who did the ERG, since that will be diagnostic in our case. He is 4 and. 1/2 and we would finally like some concrete answers!
If you wouldn’t mind letting us know who you see, I would truly appreciate it!
Your daughter is beautiful!
Hi Kelly, I’m so sorry that your son was diagnosed with Usher Syndrome, it’s so hard, especially in the beginning, but he will do great! Our daughter sees Dr. Anne Fulton at Children’s Hospital, she is the doctor that did her ERG and Rebecca sees her a few times a year. We also see Dr. Eric Pierce once a year at Mass Eye & Ear and we just love him, he is a retinal specialist. If there is anything else I can help you with please do not hesitate to reach out!