Feeling All the Feels. The USH Conference & the Importance of Community

Conner, Dalton & I spent a fabulous weekend with our USH family. It unleashed a whole swarm of feelings and revelations. 

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This past weekend I had the pleasure of attending the 14th annual Usher Syndrome Connections Conference in Austin, Texas with Conner and Dalton. We’ve been to many of the USH conferences before, so I felt like I knew what to expect when boarding this plane to Austin. 

What I didn’t expect was the myriad of intense feelings that overtook me from the minute the plane took off from Seattle. I felt happy to have life to slow down a bit and spend some quality time with just Conner and Dalton. I felt motherly pride. It was fun to hear Conner talk about the agenda and how he was looking forward to many of the sessions – and how relevant they were going to be to his new job at Helen Keller National Center. Dalton was equally looking forward to using his ASL, and connecting with others. 

Once in Austin, more unexpected intense feelings popped up. As we checked in, we were greeted by a group of people we hadn’t seen in person for three years. I felt supported and loved and embraced by a strong community.

Now mind you, I thought I was ok. After all, I spent a lot of time talking with families and educators through email or Zoom. And, actually, during the pandemic I’ve probably been able to connect with more people than I would have in the past, due to technology. 

But what I realized in that moment, surrounded by smiling faces, is how much I’ve missed that in-person connection with members of our community. There is absolutely no substitute. 

Our little family has been part of this community for over 20 years and so it feels like family to us. Some of these individuals I’ve known for over 20 years. And so even though we hadn’t seen each other in three years, that first moment in the hotel lobby felt like no time had passed. We didn’t have to say anything to each other. The hugs said it all. 

I experienced feelings of joy when I was able to meet face-to-face with families with young children who I had only met virtually. It was incredible to see so many first-time attendees at the conference. Being connected, and being able to give so many members of my USH family hugs this weekend, was something that I needed more than I could imagine. 

I felt very humbled that I was able to speak at this event about IEP Collaboration. I felt empowered presenting in-person knowing that it was being live-streamed to so many others virtually – making me realize how big our community of support really is. We have learned so much during the pandemic on how to connect virtually in positive ways and this weekend was a testament to what we are now able to do, thanks to technology. 

By the end of the weekend, I felt a renewed sense of purpose. Sometimes it’s easy to feel isolated and wonder if anyone else is going through what you are - whether anyone else understands – whether the work I do is helping. 

I am not alone. I am where I’m supposed to be, doing what I’m supposed to be doing. I have an amazing community of support of family, friends, and my broader Deafblind and USH family. For that, I feel grateful. 

Some take-aways from the event:

1. Rebecca Alexander spoke about families and caregivers and the need for self-care. As a parent, we cannot ignore our own mental health needs. The family member who has USH is not the only one impacted and to think of it that way is putting too much of a burden on them. We must take time for ourselves – doing what gives us joy, talking with someone if needed, and making sure we are our best selves. This is something I struggle with a lot. What I realize is that it’s totally normal for us, as caregivers, to be the patient sometimes – to address our mental health needs – so we can best support our loved ones.
2. Independence vs. Interdependence was a theme throughout the weekend. It really has me thinking. I have spent so much time working toward the goal of ensuring our kids are independent, but I look forward to thinking about the importance of interdependence; how can we foster our loved ones not only to be able to make their own decisions, but for them to have the support they need to carry through with them. It’s a subtle but important distinction that I will continue to grow in my thinking.

Thank you to my entire USH family for a wonderful weekend. As I start my new job as the Project Director of the Idaho Project for Children and Youth with Deaf-blindness, I feel supported and thankful – and I feel ready to take on this next challenge.

Thank you for supporting the work I do. 

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