Mom Talk: My Son Was Born Blind

Written by

Laura Harrison 

9:00 am
07/05/19

Photography by Jill DeVries

The moment of childbirth is a moment a revelation. No number of 3-D ultra sounds can prepare you for the moment your child is actually revealed to you, in the flesh. And for many, in that moment, nine months of blissful imagining can come up against some unexpected realities, ones that force us to adjust our vision for our children, ourselves, and our families. That is just what happened to Laura Harrison, who first suspected something may be wrong with her son’s eyes the moment he was placed in her arms. Her journey hasn’t been easy, but it has taken her to an exceptional place—she has nurtured, supported, and raised an incredible little boy (and his awesome little sister), and amidst it all, started a company to make other parents’ journeys a little easier. For this week’s Mom Talk, Laura generously shares her story with us.

For any new parent, the moment you hear your baby cry for the first time is a beautiful one. One that you never want to forget. It’s the moment that your baby took his first breath. What a sweet, sweet moment. And for me, I felt all of those emotions, but then everything changed. 

When I heard Jonas’ cry I was overcome with joy. I was also incredibly relieved, as I had a pretty tough labor with him and ended up needing an emergency c-section. Knowing it was done made me oh so happy!

I have very few memories of those first moments, but I’ll always remember what happened next. When Ben, my husband, brought Jonas over to me at the operating table and I laid my eyes on our son for the first time, I looked over at Ben and asked, “Does he have pupils?” We initially dismissed my question because we wanted to focus on the birth of our son—and the overwhelming joy we felt in the moment. 

I was not expecting the rollercoaster ride of emotions that were to follow the next few days. The day after Jonas was born, our doctor sat next to my hospital bed to tell me she had never seen anything like Jonas’ eyes. She didn’t know what it was and didn’t have any words of encouragement to share with us. I have strong memories of that moment, especially screaming from my hospital bed, “Is he blind? Is he blind?” and the doctor telling me, “I just don’t know.”

My heart was broken. I felt like all of my expectations for life as a new mom had been robbed from me. That all of the dreams I had for my new baby were no longer relevant. Thoughts constantly ran through my head. “Will Jonas ever see my face? Will he ever learn how to ride a bike? What does the future look like for a blind person? How did this happen?”

Life was forever changed. 

Jonas had a difficult first week of his life. He ended up spending his first seven days in the NICU after some complications, and it became increasingly clear to me that this new journey of motherhood was going to be completely different than anything I could ever have prepared for. Jonas ended up being diagnosed with Peters Anomaly, which causes abnormal development of the eyes. The future of his vision was unknown, but Ben and I resolved that we would do all we could as parents to ensure Jonas would have the best life possible. 

We started to do our research. Did you know that 3 out of 100,000 children are born with Peters Anomaly? These are the things I knew Jonas would be faced with after learning that he had this condition: We would be setting our son and ourselves up for a surgical future, slower development as a baby, the use of a walking cane, and the need to learn braille. We also knew our son would be faced with emotional and social issues, since he was going to look different than other children. 

The next three years were incredibly challenging. We were in and out of the hospital for numerous appointments and surgeries—all with the hope that Jonas could get his sight. After four unsuccessful corneal transplants, Ben and I, along with Jonas’ team of doctors, finally made the decision to stop, as his body kept rejecting the donor tissue and the transplants weren’t taking. Once we made that decision to stop it felt like the heaviest weight was removed. I felt relieved. I knew we had done our absolute best—despite the outcome being different than what I had hoped for, I knew we had tried. 

Eventually, we were able to get Jonas to a place where he could have low vision with the help of glasses. We started shopping around but grew so frustrated when we couldn’t find any kids glasses that were actually cool. Ben, who also wears glasses, hated the fact that the kids eyewear market was still offering the same unflattering styles from when he was a child. We didn’t want that for Jonas. We wanted Jonas to feel cool and confident. We wanted frames that could help him be a little hipster if he wanted to be, and definitely the stud muffin we knew he was. 

So, we decided to launch a business. 

We grew Jonas Paul Eyewear step by step. Originally self-funded, we started with only five frames, and leaned on a lot of experts in the industry to help grow the business. Eventually, we were able to introduce our at-home try-on kits, and we became the first children’s eyewear brand to do so at the time. In many ways, we approach our business the same way we approach our parenting. We take small, intentional steps, because everything is an experiment until you’ve tested it. By constantly communicating—whether it be with our customers or our kids—we’re able to make the best decision possible together. 

Also, in launching our business, we wanted to help parents and kids who didn’t have the same privileges as us. We completely recognize that despite our struggle, we still have incredible resources available at our fingertips to help us navigate Jonas’ disability. So, we formed our Buy Sight, Give Sight program, and with each purchase, we partner with leading global organizations like CBM international to help administer sight-saving medications to children all around the world. 

At this point in Jonas’ life, at 6 years old, he has pretty limited sight in his right eye. His left eye, we believe, only has some light perception. Jonas also has a prosthetic eye shell (think of it as a giant acrylic contact lens) that sits over his existing eye, hand-painted to look like a normal eye and help him feel like he fits in a bit more. It was a long process to create the prosthetic shell, and after many years of questioning if we were doing the right thing, I’m so happy we did. 

Just like many other kids his age, Jonas loves his cars and trucks and playing with his little sister. But as a result of his visual impairment, he also loves playing the piano. It has become a place of peace for him. He’ll just sit and listen to music and then work on figuring out how to play it on his own. His sense of hearing is incredible, and I feel like his future will involve music in some way! 

Often times, disability can make parents want to withdraw and protect their child from the world, but I hope to be a source of encouragement for others. What has really been so special in telling Jonas’ story is hearing thousands of other parents come forward with their stories, and building a community where we can lean on each other for comfort and be open about our struggles. Even though our situation is more of an extreme case, I realize all parents have to go through challenges with their children, and it can feel overwhelming at times. As a parent, you want the best for your kids and you’ll do everything in your power to make that happen for them. 

Now we are almost six years into this business, too, and knowing the impact and reach we are having gets me excited to come to work each day. When we launched Jonas Paul Eyewear, it was due in part to our own personal struggles in finding cool and stylish glasses for kids. But what we didn’t expect was the impact that our story and this business would have on so many parents and children. 

Each day is still challenging, both as a parent and an entrepreneur. But I look forward to continuing this journey as a wife, mom, and business owner, and navigating as best as I can. I hope to find joy in the big accomplishments that life will bring, but also in the small everyday things that can easily be overlooked.  

Are you a mother with something to say? Send us an email to be considered for our “Mom Talk” column.

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