If someone were to ask you to briefly describe your family, what would you say?

My husband and I have been together for over twenty years and love raising our two kids together. My husband, Aaron Byzak, is an executive in healthcare and I am a stay-at-home mom homeschooling my two kids. Both of our children (15-year-old Adam and 8-year-old Cassandra) have Oculocutaneous albinism type 4. Adam has Asperger's as well. It is a full house when you add in the two dogs and one wild unruly cat.

From the last time we did a blog on your family in 2019, do you have any exciting news to share?

Adam is now 15 years old and going into his Sophomore year of high school. He participates on a FIRST Robotics FTC team during the school year and loves his engineering and coding classes. This past summer he accepted a scholarship from an organization called Qubit x Qubit to participate in a unique summer program for high schoolers to learn about quantum programming.

Adam is also starting his own gumball machine business, Adam's Candy Company, in the Vista/Carlsbad/Oceanside area to raise money for college. As a proficient locksmith (he started picking locks at 5 years old), he is often asked by neighbors and local friends if he can open garages, mailboxes, front doors, desks, or other various locked items. This brings in additional income that he is saving for his future education. He intends to study engineering and dreams of working for NASA or another space agency.

Cassie, our 8 year old, is a talented artist who draws, paints, and crafts daily. She loves taking dance classes and enjoys Ballet, Jazz, Hip Hop, and Acrobatics. I homeschool her through a hybrid program at a local charter that allows students to attend school twice a week while being homeschooled three days a week.

Both kids play Champions League Baseball, a baseball program for children with special needs, every spring with their father, Aaron Byzak, as the head coach of the Step-Up Division of the league. Despite their vision impairments they are both able to hit a pitched ball. This is a huge accomplishment for both of them and we are very proud of their progress and willingness to work hard despite their challenges.

How does your day-to-day life differ in ways people might not realize; in what ways is it the same?

Our day to day life doesn't feel that different from the norm. Our kids are active and participate in all kinds of activities, just like any other family. They do chores such as dishes, trash, laundry, and cleaning up their rooms. They have friends. They do all kinds of fun things.

As for the ways in which our life differs from everyone else's... we find ways to work on independent skills such as navigating busy public areas independently. Both kids have an orientation and mobility specialist that helps with how to use the cane properly, navigate intersections, and public areas. They both have a vision teacher that helps them use all their devices they need for school to access materials: a CCTV in the classroom, touchscreen laptops, monoculars, and any software program they may need to know how to use.

Family movie nights can be interesting. Both of our kids need to sit up close so it is a comical experience when the parents have to view the movie with their silhouettes taking up half the screen. We now have a TV screen up high on the wall so we don't have this problem anymore.

We recently bought lawn tickets to watch a movie at an outdoor amphitheater while the symphony conducted the score. The lawn seats were way too far for the kids to see the movie so we brought binoculars with iPhone and tripod attachments. We thought we had come up with the perfect solution. It failed for various reasons, but the kids still had fun. Back to the drawing board on that one. Never give up!

What do you want more people to know about people living with genetic vision disorders?

Having a genetic vision disorder is challenging, but not an insurmountable obstacle in life. There are so many ways to work around challenges. Sometimes we just need to think outside the box and never give up. Also, if you have a friend with a vision impairment, please know to make an effort to come up to them in crowded rooms to say hi. Often times our kids don't even know who is in the room specifically and had they known a particular friend was there they would have approached them to say hi. It is really sweet to see some kids be this thoughtful naturally, but it is rare.

What are your hopes for the future?

We never want our kids to think that their vision impairment is going to limit them in life. However, we also think it's important for them to acknowledge their own visual limitations to themselves and others when necessary. Striving for independence is the ultimate goal. Yet, sometimes they will need to advocate for themselves or need to ask for help. In those moments we want them to own who they are and feel comfortable in their skin. If they can grow up and live an inspired life filled with passion for what they do, have healthy supportive relationships and a resilient heart despite the challenges they face, we as parents will know we've accomplished what we've set out to do. We are proud of both of them and are excited for their bright futures they have ahead.