 Every Usher Syndrome Awareness Day is a time I reflect back on our lives since we found out Conner, and then Dalton, were diagnosed with USH 1b. Here are my thoughts for 2023. The third Saturday of September is always Usher Syndrome Awareness Day. In 2023, that’s September 16. It’s a day I always reflect on our journey with our 2 sons diagnosed with USH. Nineteen years ago we found out that our oldest son, Conner, had Usher syndrome type 1b. I remember that day like it was yesterday. I went solo to Conner’s eye visit because it was supposed to be routine - Todd didn’t need to take the time to go with me. We were there to the bottom of why Conner would cry when it was dark. We were absolutely unprepared to hear “your son will someday go blind and there isn’t much we can do”. I don’t recall driving home at all - I was in complete shock. The good that came out of that day: We needed to know more. We needed to find a cure to help our son. A month later we started our non profit, Hear See Hope Foundation with an USH cure as our mission. Nearly 20 years later there still is no cure, but the collective “we” have learned so much and are closer than ever. I’m thankful we took that terrifying day and turned it into something positive. What else has been good? We’ve met many amazing people. I’ve learned so much about myself. I’ve switched careers to one that I love and helps others. And we know these boys were born to us for a reason. Usher syndrome, of course, has impacted our sons’ lives profoundly. But here to, we can also find the good: Conner is 24. He’s quick witted and smart. It’s fun to get into philosophical conversations with him about all kinds of subjects. I always learn something new. He just moved back to Washington state so he’s close to us again. He was diagnosed at 6 months of age with profound hearing loss, received his first cochlear implant at 13 months of age and his second at age 9. He has experienced balance problems since birth and that probably bothers him the most about his condition. It wasn’t until he was 5 that we learned he had Usher syndrome. Right now he has about 5% of his peripheral vision and he uses a cane. He’s an avid reader thanks to his Kindle app with magnification and inverted colors. Being my first born, Conner has taught me so much as a mom. I’m blessed to have such an amazing son.
It’s important to focus on the good, but equally acknowledge and process the challenges and struggles. I started this emotional year with a breakdown of sorts. The kids were struggling and I had taken on too much. I had to find time for self-care, which I did. Only then could I see all the good in my life, not just the obstacles. Which is what I am celebrating today. This wasn’t the life journey that I thought I would be on but life rarely goes according to plan. Before I had kids, I was a very private person (I still am) but I knew I had to advocate for my boys. I found my voice and realized by sharing my story I could help others. In June, I started writing my personal story into a book (it’s halfway done). I’ve allowed myself to be vulnerable and share my raw honest feelings about this journey. This has been very cathartic for me. More good. In August we held our first USH event at our ranch. The ranch has been a major step in our journey. Two years ago I saw this property in Carnation and I instantly knew I needed to have it. Todd thought I was crazy but supported me to make it happen. For those who know us, understand that when we decide we want something we dive right in. In this case, we had no idea what we were doing. We had no animals. And, we certainly knew nothing about how to care for animals. But, I saw a vision that thankfully Todd shared. Leading up to the event, Todd worked countless hours getting our place where it is today, ready for guests. Being on our ranch around the animals, enjoying the outdoors, has been very therapeutic for me. It’s helped me recover from the years of trauma since the kids' diagnosis. When I saw the impact on our family that this place has had, I knew my life goal was to share this with others. This is how the USH event dream was born. I wanted to bring individuals who are deafblind and their families here in hopes that this place could give them as much joy as it has given us. Last month we realized my dream and those three days were life changing. Not only were all 4 of our boys here, but we were surrounded by our broader Usher syndrome family. Seeing the smiles on people's faces made me so happy. Yes, it was a lot of work but it was so fulfilling. It's hard to describe, but I felt completely at peace.  Lastly, I couldn’t do any of this without my village, my USH/DB community. When I have bad days and I don’t know what to do (and I still have many of these!) I look to my USH/DB family for support. You all have never let me down. It’s funny how 2023 started on such a low for me, but it’s turned around and there is so much to be thankful for. I’m so proud of our boys and who they have become. I’m proud to be their mom. So, on Saturday I’ll be spending the day hugging and laughing with our boys and appreciating the broader Usher/Deafblind community that surrounds us with love and support. Thank you to all of you that read my blogs, help with my research, and most importantly pick up the phone when I need you.
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 Conner, Dalton & I spent a fabulous weekend with our USH family. It unleashed a whole swarm of feelings and revelations.
 Guest author, Divya Goel, shares her journey to self-advocacy and living her dreams as a young woman with Usher syndrome.
by Nilam Agrawal  I wrote this poem in May, 2012 when my daughter was 2 1/2 years old. She was acutely sick with H1N1 and had to be intubated. She went from being a sighted child, to suddenly losing all of her vision in both her eyes (she started losing her hearing 6 months before that due to an episode of high fever). For 3 long weeks she was in a world of total darkness and total silence. Then, she began to see in low lights and regain some of her hearing. That episode was a new turn in our journey. My husband and I were hurting and nervous. She was scared and lost. We had no idea what help we needed or how to support her. I wondered, if she could say what she was feeling, what would she say? I wrote this poem to help me find a purpose and find something to hold on to when I was struggling to even breathe. For the next 5 years, we went through two different medical (‘mis)-diagnosis before receiving the correct diagnosis of Usher syndrome for both our kids in December 2017 (a decades-long medical journey that started with our older son in 2007).
 If someone had told me six months ago that I would be leaving a job I loved, I would have thought that was crazy. Those who know me well know how much I love my job. It's been rewarding to participate in COVID-specific special education research, and I know that the work has helped many and that my contributions have been valuable. But for the reasons I explain below, I need to make a change. I'm excited to have more time to focus on myself, my family, and deafblind research and family support.
 September 19 is Usher Syndrome Awareness Day. It’s always a day that causes me to reflect on all that I am thankful for.
 As a research analyst at the Center on Reinventing Public Education, I've researched school/district response to the pandemic. I've interviewed many parents who have children with disabilities over the last six months about their experiences, and most recently, I've been tracking school reopening plans.
 I was asked to share my experiences and perspectives about remote learning for children who are deafblind, like my son Dalton.
I was asked to share my experiences and perspectives about remote learning for children who are deafblind, like my son Dalton.
 Being Conner’s mom is such a joy for me. He has overcome huge obstacles and works so hard to achieve his goals.
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AuthorLanya McKittrick is the Chair of the Board of the Usher Syndrome Coalition, co-founder of the Hear See Hope Foundation, and deafblind education researcher and founder of Lane of Inquiry. Lane received her PhD in Special Education at the University of Northern Colorado. Her research, advocacy and family support work are rooted in her personal experience as a mom to four sons, including two who have Usher Syndrome, the leading genetic cause of deafblindness. Archives
July 2024
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