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Following my Own Advice

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.

I finally decided to make this difficult decision because I took my own advice - the advice I give parents who reach out after receiving the news that their child has Usher syndrome. It's taken a lot of soul searching this year for me to get to this point, but, just like getting that initial diagnosis, 2020 has brought out many of the same feelings of loss, fear, stress, uncertainty, and immense change. Loss is not new to us as a family, or probably most special education families. Usher syndrome takes something away from my kids every day. Every day I don't know if their eyesight will get worse or how to plan. But, I've learned over the years how to cope with loss, uncertainty, and stress - skills that have served me well when dealing with the uncertainty that 2020 brought.

This past spring threw me a curveball because I couldn't wrap my head around what was going on in the world. I poured myself into work because it felt like my only sense of normalcy. On top of work, remote learning for our kids stretched me as a parent. Looking back, I see that I was living on adrenaline and my fight or flight response. The entire spring was a complete blur - I'm sure many people can relate.

I've learned from being a mom of children with disabilities that this is not a sprint, but a marathon. The work I've been doing this year is urgent and incredibly important - it feels like a sprint because things are continually shifting and changing. This feeling is not foreign to me - It feels a lot like that first year after diagnosis. But I know from experience that I need to have the energy for the marathon.

Much of what we see right now in special education are not new issues. Regardless of the pandemic, I would argue that special education was often an afterthought. IEP meetings have not always been effective, the curriculum is not always accessible, and it hasn't been easy to get the needed services and supports. This year, although challenging, is just another year in fighting for what our kids need.

I need to get back to preparing for the marathon. To do that, I must make changes. I must follow my advice:

Prioritize self-care. You know how flight attendants tell you that you should put your own mask on first - well, I'm not good at that. When I found out Conner had Usher syndrome, I made no time for myself. We were shuffling around to therapy and doctor appointments, all while working. Todd and I had just founded Hear See Hope, as a way to give us hope, but a lot of other memories are pretty blurry - this is a huge regret of mine. Several years later, I now realize that I lost focus on myself - I kept my feelings bottled inside because I did not give myself any time to feel grief.

This past year feels similar to those early years after Conner and Dalton's diagnosis. When your fight or flight response and stress is so high, you can't function at your best. I've learned that when my body is reacting in a fight or flight response, it does not serve my family or me well. I still am trying to find ways to prioritize time for me.

I am not good at saying no, and this impacts my health at times. My goal for this year is to ensure that I am the best version of myself for my family - for the marathon.

Look for the bright spots. Finding out your child is deaf and will someday be blind is devastating. I still remember the day we found out - it's a picture in my mind that I can never erase - and now I know that I don't want to erase it. Usher syndrome is a part of our life. It is not the journey I thought I would be on, but I know in my heart that God chose me to be Conner and Dalton's mom. I was meant to be on this journey. Being on this journey has made my life better in many ways, and I find great joy in researching topics important to families of children who are deafblind. I have met so many amazing people along the way - they are my tribe.

Twenty years ago, it would have been easy to fall into a dark place. Instead, I chose to focus on the good. Instead of focusing on what I don't have or the eyesight of hearing that my kids don't have, I choose to focus on what they do have. We have so much to be thankful for, and I look for small pieces of joy to focus on, instead of the bad. I used to be afraid to share our story, to support other families, but now it's what gives me so much joy.

During COVID, it would be easy to focus on what we can't do and wish things weren't the way they are. Instead, I choose to focus on what I'm learning and what I want to bring forward into the future. During 2020, our family has grown closer. I had a great job that afforded me the ability to make a positive impact this past year. I focused on my fitness for my mental health, and I was able to see first hand what our kids were struggling with at schools (so I can better advocate for them and help them).

As with many parents of children with disabilities, we experience challenges all the time. But, I want to have the time to look for the bright spots in all this - to have the capacity to consider what I can learn through all of this.

Appreciate the now. When we received Conner's diagnosis, and then Dalton's, I was grieving, I was in denial, and I did everything I could to learn about Usher syndrome. In the process, I missed out on a lot of the baby and toddler years. While I was focused on doing everything I could to make sure there was a cure, there are so many things I don't remember. This is time I cannot get back.

When I talk with newly diagnosed families, I tell them to enjoy being a parent - to enjoy those small moments that will become memorable. I ask them not to let Usher syndrome get in the way of that - to try not to dwell on the loss.

This year, I am thankful that I could work at home and help the kids with school. I loved having our older boys home. There have been so many small moments of joy that have become fond memories - I just had to look closely for them. We played board games, laughed together, and just grew closer as a family. This was possible because life had slowed down. I want to be sure that I can appreciate every day, even the bad times, to learn from them.

What does this mean for my future?

2020 has brought clarity. Going into 2020, my future path felt unclear at times. I helped many families during 2020 determine how to work with their IEP teams to get the supports their children need. I want to be more intentional about my work in the field of deafblindness. 2021 will launch my new endeavor, Lane of Inquiry - Deafblind Education Research and Family Support.

The idea for "Lane of Inquiry" came about in 2020. During the COVID-19 pandemic, I made time to self-reflect. I realized it is time to follow my passion - to more intentionally conduct research to improve outcomes for children who are deafblind AND to relate that research to my experience as a parent. As a parent, I have always wished there was more research specific to the topics of interest to families knowing if there were more research, it might help families better work with their IEP teams. I also sought to find a way to disseminate my research to families in a format that is easy to find and access.

I also plan to enjoy this year and to continue to have a positive outlook. I have much to be thankful for. Conner is a senior at Rochester Institute of Technology, living a great life. Cole is at Gonzaga, also doing well, taking sports management courses, and we are so proud. Hunter is an in-person school and doing great. I am amazed by all the random facts he shares with us each day. I now look forward to spending the day doing virtual school with Dalton. He's grown so much since spring and is honestly thriving by being home with me while doing virtual school. We've figured out the accommodations he needs, and we have a sound plan in place. And, then there is Todd, who is my rock, who has done everything to keep us safe this year. We've been through so much adversity together over the past 20 years, and he knows what I need. Thank you, Todd. Thank you, boys. I am so thankful that I am your mom.

Bringing me back to the changes in my life - I've never been happier. I feel at peace, and I am happy. We are all healthy, and we have a lot to be thankful for. It's hard for me to give up something that I love, but I know it's the right thing to do. There is so much I cannot control right now, but this is something that I do have control over, making sure that I follow my own good advice.

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