What My Son’s Unexpected Blindness Diagnoses Has Taught Me About Myself

What My Son’s Unexpected Blindness Diagnoses Has Taught Me About Myself

by Laura Harrison

The first time I set my eyes on Jonas was after 30 hours of labor and an emergency c-section. I was laying on the table where I just had a major and scary surgery, not sure if my son survived his dangerously low heart rate, before the doctors decided to rapidly remove him from my body. The sound of his cry was magic — but when I looked at him, I said to my husband, Ben — “does he have pupils?”

I don’t remember anything else from those first hours Jonas’ life, except that when I looked in his eyes I saw only grey clouds. The following day it was confirmed that something with Jonas’s eyes was just not right. It was then I realized my mothering journey would be a whole lot different than I ever could have imagined. Those short moments of awakening shaped who I am now and who I will be for the rest of my life.

For many months after his birth, the same questions constantly played on a loop in my head: Why? Why did this happen to me and Ben? Why Jonas? Why, why, why??? I was frustrated, angry, depressed, and embarrassed to take my son in public for fear of what strangers would say. Jonas was so precious to me, and I knew I would lose it if someone looked at him differently, or if I overhead comments I was not supposed to hear.

When I was preparing for Jonas to arrive, I had signed up for all things baby — as so many new moms do. I subscribed to all of the weekly newborn newsletters, especially the ones that covered development. Every new mom hopes their child will have a healthy development, and follow all of the typical  “milestones.” I just knew I was going to be that mom that was in the know and on top of everything. After Jonas’s birth, I started  to sink into depression about my unrealized dream. None of the milestones or timeframes I’d read about were things that Jonas was going to accomplish when he was “supposed” to meet them.

Jonas’s first corneal transplant was when he was 10-weeks-old — and thus started our odyssey together towards helping him to see. We spent the first years of Jonas’s life in a hospital — surgery, after surgery, after surgery. Twenty-one surgeries in total in a span of 3 years. The nursing staff at the University of Michigan knew us on a first name basis. But we  weren’t getting any of the results we were hoping for after putting Jonas through all of these surgeries and I was so frustrated. I was tired of making these giant life decisions for our little boy, not knowing if any of it would help.

Another hurdle was the resentment I felt early on as a mother. I would be invited to playdates with Jonas but turn them down time and time again. I just couldn’t go and hear other moms talk about their babies’ developments, and how they were frustrated or sad that their children weren’t progressing “quickly enough”. I would sit there thinking to myself that if that was the only thing I had to worry about, I would be so happy! Sure, that may not have been the right perspective, but it was how I felt. And it was very real.

I eventually forced myself to accept that I had to separate myself from this frame of mind. Jonas wasn’t going to develop his gross and fine motor skills like other babies his age. He was going to have his own learning path. My mothering journey was also going to be different, and I had to come to full acceptance of this. Honestly, coming to terms with this fact saved me from going insane!

Surprisingly, one of my sources of comfort at the time was going to work. When we learned that Jonas may be able to see with the help of glasses, my husband Ben pitched an idea to me that creating a kids eyewear company would be a productive way to help kids like Jonas and families like ours. The creative outlet was something I really needed to help take my mind off all of the other stress of real life. And I was able to find comfort in a community of other parents who found our company and started sharing similar stories about realizing their children would have struggles with sight.

Yet it is still a constant battle I play inside my head. Just a few days ago I was driving my 4-year-old daughter Sophie to her first tennis lesson and on the way over Jonas asked, “why don’t I get to play tennis, Mom?” Oh, my heart sank so fast. Tears started welling in my eyes as I gripped the steering wheel so tightly and thought to myself, “how do I respond? What do I do?” So many activities and things might not be in the cards for Jonas, but I am determined to make him feel included, and help him find something he’s passionate about, that he can do with his sight-seeing peers too.

I will never downplay this: having a child with disabilities is HARD. We live in a very visual world  and everything is harder for a non-sighted person. But one thing I have learned is that my son’s vision does not even define him, nor does his disability. Jonas is a 6-year-old boy like any other 6-year-old boy. He likes trucks, cars, and racing. He loves to crash his toys and create imaginary worlds with his favorite toys. Even though he might read a bit differently (he’s learning Braille!) he is still reading, and in his own beautiful way.

Having a son born with such a rare eye condition that was completely unexpected threw me off for quite a while. I tried my absolute hardest to stay positive through it all but there were so many times I would just cry myself to sleep or scream in the shower knowing no one could hear me.  After really struggling with what my new normal was I was able to find my way to complete acceptance of Jonas and complete acceptance of his condition. I never want him to feel a sense of disappointment from me. Life won’t always turn out how you think and for me that has been such a hard lesson to learn. I am a planner by nature. I like structure and I like knowing what to expect so that I can make the best plan possible. Life with Jonas has taught me that I have to be willing to go with the flow. I have no choice. It has to be okay if things don’t always turn out how I think or want them to be.

I can confidently say that I wouldn’t want Jonas to be any different than exactly how he is. He is a beautiful child that has additional challenges in his way but there is something inside of him that gives him the confidence to take those challenges head-on. Jonas does not give up, and maybe he’s picked that up from me and Ben pushing to help him live the greatest life he can, or it could be the “superpower” he was just born with. Jonas will not give up, and because of him, I won’t either. I am a better mother, wife, and woman, because of how much I have learned from him in the last 6 years.

For any mom that is raising a child that is differently-abled or who has disabilities; or for any mom struggling with a perfectly healthy child: it is alright and normal to be angry, embarrassed, scared, and to feel isolated. My advice to you is to find your people. We found ours through our business; as well as through our family, who allowed us to be vulnerable with our feelings and not judge us. The aids we hired for Jonas turned out to be unexpected sources of emotional support as well. Once we received Jonas’ diagnosis, I was also able to connect with some other moms who had children with a similar eye condition. Finding these women in the early days was crucial — we could support one another through all of the surgeries, answer questions, rejoice in the amazing moments, and cry together through the difficult times. Finding a community of others that are going through similar experiences can be one of the most comforting and rewarding steps you take to acceptance of your new reality and eventually help you embrace and celebrate it.

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Laura Harrison is the co-founder and COO of Jonas Paul Eyewear — a brand with a mission to bring stylish eyewear to children while providing sight to children in need with every pair purchased. As a mother and entrepreneur, Laura is helping kids all over the world feel confident and beautiful in their eyeglasses while allowing parents to feel socially responsible with their purchases. Laura, her family, and Jonas Paul Eyewear are headquartered in Grand Rapids, Michigan.

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